# Crohns Disease and strange symptoms of...what?



## Endiku (Dec 6, 2010)

I wasn't sure where to put this... its not really rider wellness since it doesn't necessarily affect my riding, so I put it here.

I'm 17 and I have some pretty significant health problems. None are life threatening, but they are very 'quality of life' threatening. I was healthy until I started highschool, but my freshman year I literally just fell apart. I have chronic migraines that I have been MRI'ed for and they best thing they can tell me is that its stress related or genetic, I'm allergic to most migraine medications, and I have serious GI problems. Last year (February 2012) after 17 months of severe pain I was diagnosed with a very angry and very swollen gallbladder, so it was removed. I also have severe (to the point of it destroying parts of my esophagus and stomach lining) acid reflux and frequent unexplained burning in my upper abdomen, lower abdomen, and back. I am allergic to dairy, tree nuts, cinnamon, pears, and of course, I have limitations due to my lack of a gallbladder. All of my allergies occurred AFTER having my gallbladder removed, within the last year. I frequently have mouth ulcers, unexplained fevers (usually low grade) and I have a very weak immune system so I often have bronchitis and I've had pneumonia twice. I bruise and bleed easily and in the past week or two...I have been loosing ALL of my eyelashes and some of my hair. Its horrifying. Ofcourse due to all of this, I have to force myself to eat. I am extremely nauseated when I eat however, and I often throw up and always have diahhrea after eating, so I get very little nutrition. I am underweight and currently weigh 86 pounds (I am 4'11).

That being said, there is no known 'reason' for most of my problems. I am working with multiple specialists to figure out why I have so much excess bile in my stomach (they scoped me last year and my entire GI tract is yellow with bile) or why I have such bad reflux. They can't figure it out. I've been tested for diabetes, gluten allergy, liver disease, deficiencies, etc. I've had just about every test possible.

Lately however, the doctors (specifically my GI doctor) have been considering that I might have a 'sneaky' form of Crohns disease. That's why I started this thread, to see if anyone else on the forum has Crohns, and how they were diagnosed, what their symptoms were, how they manage it, what tests were runs, etc. I'm also curious to see if anyone else has had a colonoscopy done. I am having one in August as part of the diagnostic tests to see if I have crohns, and I'm worried about it. How was it for you? Painful? I've heard that the prep is the worst part...it sounds aweful.

Any ideas, thoughts, or suggestions are appreciated. I, my family, and the doctors are at loss. What bothers me most is that I'm very limited on what I can eat so I rarely get to go out with friends or anything to eat, and now I'm losing hair and eyelashes which is embarrassing...its likely due to my lack of nutrition I know, but I just CAN'T eat. My parents constantly yell at me for not eating, but it hurts and I literally have to force myself to do it. I don't know what to do.


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## CLaPorte432 (Jan 3, 2012)

No help from me, but, wow! You POOR thing! *big hug*

what is your WBC count? High? Low? Average?

I'm assuming you have been tested for cancer/leukemia?
_Posted via Mobile Device_


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## Endiku (Dec 6, 2010)

Yes, they've checked for cancer although they will be checking again when they do my endoscopy and colonoscopy. They took a biopsy last year and found nothing strange.

My WBC is average to low. I have blood tests frequently to check them but thus far even when the count is low, it isn't alarmingly low.


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## Lockwood (Nov 8, 2011)

You mention you were tested for a gluten allergy... was it an allergy or were you tested for celiac disease? The reason I ask is that celiac disease is not an allergy and can show symptoms that want to mimic other things. Also, if a person is a celiac, they often have many accompanying problems until the celiac issue is fully dealt with.
My son is a celiac, with a lot of allergies, has other GI issues and had such severe GERD (reflux and vomiting) that we were offered the GERD surgery. He was the size of a bean pole and would blow over on a breezy day. 

Once we figured out the celiac disease, he slowly got better and is almost out of only being able to wear the slim clothes and into regular sizes. (almost)
At one point he had to wear belt to keep the slim pants from falling down.

At any rate, I really hope they can figure out what is going on. It took about 7 or 8 specialists, quite a few years, lots of referrals, and a bunch of research by me before the light bulb went on for anyone.
For us, getting into a highly accredited children's hospital was helpful too... you are still young enough maybe to get in there if you haven't already.
Good luck and keep looking for those answers!


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## Wallaby (Jul 13, 2008)

How specifically did they test for a gluten allergy? 
Many of the "usual" tests can be faulty. For instance, I am SERIOUSLY gluten intolerant/allergic to wheat/Celiac, as in a mere crumb of anything wheat based sends my body into days of issues....but when the doctor tested me for gluten/wheat issues, my tests came back totally normal. The fact that I'm now doing so well on a wheat/gluten free diet [and that's the only change I made] kindaaaa points to those tests being inaccurate. :lol: 
And I've heard that I'm not the only one that that's happened to. 

Anyway, if you haven't already, try eliminating wheat from your diet for about a week. But first make sure you eat everything wheat-y that you might want to try! I went wheat-free not expecting to have anything come of it so I didn't eat anything "special" prior to going off wheat...and now I really wish I had binged. haha


Also, :hug: 
I know how hard it is to have really weird, unexplainable issues! I had been having sporadic "bathroom issues" to seemingly unrelated foods, severe daily hives, really terrible mood swings, depression, bad stomach cramps after meals, the works basically, for at least 5 years before discovering that gluten was the issue.
It can really take it out of you!! Stay strong. I know you will. :hug:

FWIW, "stunting" IS a side effect of Celiacs/gluten intolerance in growing kids. And many many medications have wheat flour in them as a binding agent. 
Just a thought, do you react to Excedrin for your migraines? It doesn't have wheat and I find that it works great for me when I get a migraine [which, was apparently another side effect of my wheat-weird since I don't get them nearly as often anymore...it used to be that I was popping Excedrin of a multiple times daily basis for mirgraines].


ETA: LEAH!!! Anti-Gluten Team posting it uuuuup. :rofl:


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## tinyliny (Oct 31, 2009)

I could wish some of that "stunting" for myself, but no such luck. When I have GERD episodes, I tend to eat more frequently because, at first, it makes my stomache feel better, before it feels worse. I have had similar but much less serious experiences as you describe. most were brought on by taking too many aspirin or NSAIDS. once the over production of bile is stimulated, it seems to take weeks to get it to shut off. Weeks of taking Nexium. I really hate to take those types of drugs, but I have had to. and double dose, too.
two months ago I felt terrible, all day, every day , in the gut. Today, almost no symptoms at all.

I am sure I'd feel better gluten free, too, but am too in love with wheat based foods.

anyhow, have you tried Nexium?

the colonoscopy prep IS the hard part. the rest is easy, so don't worry too much. Have you by chance been to a naturopathic doctor? just wondering.


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## Delfina (Feb 12, 2010)

I have both Ulcerative Colitis and Celiac disease (yeah, lucky me...).

Ulcerative Colitis is the same thing as Crohns Disease but instead of being system wide, it limits itself to the intestines usually. 

I was diagnosed 17+ years ago. In the grand scheme of things, the initial diagnosis really starts things on a cycle to get better. There are many medications that really make things better. I am after all these years, allergic to all of them but a few.. currently Prednisone is all I am able to tolerate and will start Remicade infusions soon. Removal of the colon is basically the only *cure* but it's a very, very last resort option and there are many, many treatments to explore prior to that. 

A colonscopy is absolutely nothing. You will be asleep for the entire thing and won't even know you had one once you wake up (well unless you wake up mid-procedure.. done that a few times! Still wasn't an ordeal, they just knocked me back out). 

The prep is absolutely dreadful, I won't lie about that. HOWEVER!! Since your digestive system is wacked and everything runs right through you... it won't be so bad. The whole point of the prep is to clean you out.. since everything is already running through you, you don't need to worry about finishing the prep really. I've never, ever finished the jug o' yuck or the bazillion ounces of Miralax + Apple Juice and it's not been a problem. Only thing to keep an eye on is that you do not severely dehydrate, I always do so I get the first appt. of the day and an IV the second I arrive at the surgery center.


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## Darrin (Jul 11, 2011)

My sister spent 30+ years going from one diagnosis to another, turns out all they were doing was chasing symptoms. All her multiple symptoms boiled down to having Scleroderma. Why do I bring this up? She also has migraines, gluten allergies and organs removed due to her problems. 

I doubt you have the same thing going just wanted to point out that often symptoms mislead doctor diagnosis. My sister is the one that actually finally nailed down her root cause, a specialist just confirmed what she discovered.


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## Missy May (Feb 18, 2012)

Anyway, if it were me or my child I would at least review and want doctors to review the genetic history. You do not so happen to be of Mediterranean descent, do you? Either way, if it were suspected to be a genetic disorder, in most cases it can be tested for...which doesn't make you feel any better physically, but at least you know what it is or is not.
Sorry you have to go through this - I hope the cause is identified and addressed soon.


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## Tracer (Sep 16, 2012)

To the best of my memory, my sister was diagnosed with Crohns disease 9 years ago when she was 16. I don't recall how they diagnosed it, exactly, but I remember how frightened we were. She lost 15kg+ in a matter of weeks, and she was wasting away before our eyes. She caught every bug that went around, and caught them bad. She started suffering painful and unsightly abscesses on her legs, cysts and fistulas in her groin, and developed a bald patch on the side of her head due to alopecia. More recently, she has been suffering regular mouth ulcers, throat/lung infections, and even had to be hospitalized two Christmas' ago for a severe kidney infection. She went through a myriad of medications, had to self-inject every week, and now is going well with monthly infusions.

She still has fairly bad pains and suffers the typical bowel problems, which has resulted in her being put on a disability pension. She cannot eat any acidic foods, nor can she eat her favourite foods - pasta dishes with tomato sauces. Tomato sauces are a particular weak spot for her Crohns, though she can eat actual tomatoes without worry. She's been relatively healthy lately which is wonderful, though it is likely that within the next few years she will have to have 30cm of her bowel removed as it is so badly affected.

As for myself, I have many of her symptoms, minus the weight loss. On the 17th, I am undergoing a 'top and tail', so I can let you know exactly how a colonoscopy is  I saw a new gastroenterologist last week, and he has a strong suspicion that I may have minor Crohns disease. I have been unofficially diagnosed with IBS by another gastroenterologist (my sisters' regular doctor), but this doctor disagrees. I get unbearable stomach cramps, sometimes low, sometimes high. Recently I have been getting pains similar to that of a gallbladder attack though recent ultrasounds show my gallbladder is fine. I have a sensitivity to dairy products, though I am not lactose intolerant. I have iron levels that rival those of my sister. I have cysts and fistulas much like she did.

To me, it sounds likely that you have not only Crohns, but alopecia as well, which would account for the hair loss. I feel for you, I really do - my family and I have always been 'curse' with ill health, but you take the cake. Not something you're proud of, I'm sure. It's amazing, though, how many people have Crohns disease once you start looking. It's an illness that you will have for the rest of your life, but it's definitely something that you can live with. I hope you find an answer soon.


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## Endiku (Dec 6, 2010)

Thanks for all of the different ideas guys. I really appreciate it. I'll research each of the things that you mentioned, as I'm really, really ready for some relief.

Tracer, does your sister have anemia? I ask because even on iron supplements, I am always boarderline anemic which affects my energy significantly. I also have high cholesterol (genetic, I'm partially Vietnamese). I can not eat acidic fruits, drink fruit juice, or drink soda as it tears me up and HURTS. I also cannot handle much red meat without feeding sick (I eat a lot of fish and chicken) and I've gotten to the point of not being able to eat fast food or resteraunt food at all because of the cramping afterwards.

Its so strange because I sound a LOT like your sister. I didn't mention it but I am CONSTANTLY getting strep throat and throat infections (negative strep but still pain) and as I already said, I have very weak lungs and bronchioles. However, I do not have asthma unlike both my sister and my mom.

I'm actually worried that my gallbladder was not the issue, Crohns was, and now I don't have the organ which is just stressing my body even more. :/ And now I have all of these allergies. How they're related, I don't know...but they all started when I started having what I thought were gallbladder problems.

The constant sickness makes me feel aweful, and my regular doctor (who I deeply dislike, but I'm a minor and my mom likes her for whatever reason so I'm stuck with her) likes to blame me for everything. She says I always have strep because I don't wash enough, but I SWEAR I do. I wash my hands thoroughly at least 10 times a day, brush my teeth 3-4 times a day, use Listerine, shower daily, keep my room tidy, use lysole... but she makes me feel like this is also my fault. ALL of my doctors also like to blame my illnesses on stress, and while I DO handle stress poorly I've made drastic changes to help me learn to cope with it better and I see no changes. And how can ALL of this be from stress? All they tell me is 'deal with your stress. Don't be stressed. Don't do anything and it will get better' but life just doesn't work like that. I have a job, horses, a family to take care of, school (I have learning disabilities too), and other typical teenaged problems. I can't just not do anything or not be stressed. Its impossible!

MissyMay, no I am not Mediterranean. I'm unsure of what my mom is, though we think she may have some irish in her (very pale, freckles, reddish hair. Her mom and grandmother are the same way) and my dad is Vietnamese. 

We do have a LOT of history of genetic problems though unfortunately, on BOTH sides so I really got a double whammy when it came to the gene pool. Both of my siblings are healthy as can be, with the exception of one having asthma. In our family history we have GERD in literally all of my dad's side of the family, lactose intolerance (I however, am not lactose intolerant. I can not drink lactose free milk either) because of the Asian side, cardiac disease, fibro myalgia, chronic migraines, osteo proses (sp?), liquid around the heart and lungs, and GI issues. So I could have anything, honestly xD its pretty awful. If we were a horse breeding operation we would be the lowest of the low backyard breeding programs. LOL. No immediate family member of mine has Crohns though, as far as I know.

Darrin- I sure hope that's not what I have :/ it looks horrific. I don't think I match most of the symptom's, but I guess its always possible.

As for Celiacs disease, I was tested twice for both Celiacs and for just an allergy and they came back negative. But like you all say, its possible that I could still be intolerant to it! The weird thing though, is wheat (and other carby things...specifically saltine crackers) is one thing that makes me feel a bit better. It coats my stomach for a short time and relieves the burning caused by so much bile, and I don't have reflux from them. I go through a box of saltines every two weeks or so because they're sort of my 'turn to' food. I could always try going off of wheat for a week though, just in case. I'm willing to try anything.

As for reflux medications, yes I've tried Nexium as well as all of the over the counter reflux/heartburn pills. None work, so I was prescribed a high dose of protonics that help if I take them religiously. I am currently taking a dose of '80' daily. 40 in the morning 40 at night. This causes me to be very dizzy though, which I hate.

For a short time I was on Carafate (sp?) which was supposed to counteract some of the damage to my stomach lining by coating it before I ate, but it was insane to try balancing that with my Protonics (the neutralize each other. I can't eat without taking protonics, but I was nauseated and burning without the Carafate) and I began throwing it up for some unknown reason every time I took it, no matter if it was liquid or pill form. So I quit.

Currently my medications are limited to the protonics, water kefir (I've found it helps in the slightest amount), and a nonsteroidal antibiotic that has the affect of changing the motility of my bile SUPPOSIVELY, but I don't think it works and it makes me dizzy too. 

Wallaby, Excedrine is one migraine medication that I can handle, and I take it a LOT. I take 1-2 daily for my daily headaches because I have them no matter what, all day every day, but most severely in the morning. They think I'm addicted to it now and have rebound headaches from it, but I can't function without it (crippling headaches). It, however, is also damaging my stomach lining, so its really a vicious cycle that I've gotten into. I took myself off of NSAIDS for a month last year to see if my stomach pain went away and the burning lessened, but nothing else changed.


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## Tracer (Sep 16, 2012)

I'm not sure about my sister being anemic persay, but it's very likely as I do remember that she was getting regular iron transfusions for a while. I myself have just come back from having very low iron levels. I also can't believe I forgot to mention her biggest problem - She can't eat anything that has fibre over 4. That limits her options with bread, and she can't even eat more than a handful of popcorn.

You doctor sounds horrible, even worse than my sisters. I would seriously sit down with your mother and say something along the lines of wanting to try another doctor to see if they have more insight into what is going wrong. Don't outright say that you want to change because the doctor she likes is terrible. With any luck you'll be able to find another doctor that she likes better. I'm very lucky that the specialist I was referred to is absolutely amazing - if I'd been sent back to my sisters' doctor, I have no doubt that he would have just waved it off and done nothing about the possibility of me having Crohns, whereas the one I did go to sat up and took a lot of interest in the fact that my sister has it.

It also doesn't have to run in your family - my second cousin is the only other person in either side of the family that has been diagnosed with Crohns. The only reason why we're so suspicious about me is that oftentimes if one sibling has it, the other does too.

It really sounds like you've been dealt a horrible hand. Quick questions on the medication front though - have you ever been put on Somac? I was put on it a few years back after waking up in the night with absolutely horrible pains, and since I've been on it I only rarely have my sleep disrupted and my pains haven't been as bad. It has the added benefit of stopping the nauseous side affects of the only pain killer that works on my period pain.

I really thing you should have a colonoscopy, no matter how awkward and unpleasant they may be. You clearly have something serious going on, and I can't believe it's taken your doctors so long to consider Crohns.


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## Endiku (Dec 6, 2010)

Yeah, I don't like my doctors at all. They're just so 'ladidah' about everything that goes on with me, as if it isn't ruining my life.

No, I've never tried Somac. Is it a painkiller?


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## Viranh (Apr 7, 2013)

What you have sounds autoimmune, to be sure. They are no fun at all. I've got celiac and endometriosis, which are both autoimmune. Crohn's is as well. The name of the disease just depends on what part of your body your immune system has decided to eat today.    I have a friend with Crohn's, and from what I understand it's a lot like celiac, but not triggered by wheat proteins. She has trouble eating high fiber stuff at all, though. We both have chronic migraines. If you can take Benadryl, it actually can help stop a migraine. Magnesium is also helpful. Other than that, eating as clean as you can and exercising some helps to a degree. Stress also seems to play a pretty big role. I think those of us with autoimmune conditions are just much more sensitive. Doctors like to blow off our conditions, too, since they are not well understood. I'm very sorry.


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## Endiku (Dec 6, 2010)

That's ones thing I don't have. If I go way overboard (like eat a bunch of triscuits or something) I feel painful and uncomfortable, but normal fiberous foods don't bother me any more than other foods do.

I took magnesium and riboflavin in high doses for my migraines for a while to see if it would help, but unfortunately it didn't and I had the side affect of yellowing skin and constipation for some reason from taking so much of them. I've also taken Imitrex as a migraine stopper, but our insurance only pays for 2 per month so I have to pick while migraine every two weeks I want to stop. It stinks. Also, in the last few times I've taken it, the migraine goes away but in its place comes severe neck pain. Its not even worth the pain.

I exercise almost excessively though, and it does help some. Lower stress levels means less migraines too BUT I still have that persistent every day, all day headache that is so reliable that its ridiculous.


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## Viranh (Apr 7, 2013)

I get those too. I wish I knew what to tell you. For the Imitrex, I told Walmart that I have no prescription insurance (which is true) and they only charged me $40 for 16. Not too bad. However, the migraine will often come back the very next day, or return as a plain headache that I can't treat at all. If I find something magical, I'll let you know.


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## Darrin (Jul 11, 2011)

Have you seen a chiropractor for your migraines? My migraines have one main trigger and a secondary lesser trigger. The main trigger is my allergies, secondary is when my neck is out. What's worse is my allergies are more likely to trigger a migraine when my neck is out because (I think) my lymph node is putting pressure right where my neck goes out.


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## Endiku (Dec 6, 2010)

No, I haven't seen a chiropractor. Someone mentioned doing that a few months ago so I told my mom about it, but our insurance doesn't cover it which means it would cost us a lot. I don't think she's willing to pay for one :/


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## Darrin (Jul 11, 2011)

Yeah, gets a bit spendy visiting any doctor if your insurance doesn't cover it.


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## NorthernMama (Mar 12, 2008)

Wow. Just wow. I mean, how much can one person do and deal? I have no information for your general health issues, but can input on stress and colonoscopy.

Someone posted that (s)he was under general anaesthesia for a colonoscopy. I don't know why that would be the case. It is really considered non-invasive as the examine involves an already existing orifice / pathway. No need for any anaesthetic at all, local or general. While the prep is indeed the worst, it's _almost_ worth it just for the way your digestive system feels after it's all over. Getting all cleaned out like that made me feel great!

IMO, the stress should be a huge factor being considered and dealt with. You do have a lot on your plate. If you think about it, do you ever really, truly, just do NOTHING? Not sleep, not read, not watch TV, but NOTHING? Sit in the yard and count the blades of grass kind of thing. Those times when you are physically incapable of doing anything don't count. You expend huge amounts of energy in your life, my girl: academics, horses, health, exercise, who knows what else, plus the pain and other symptoms. It's not just physical energy, it's emotional and psychological as well. It's quite possibly just too much.

So, while you continue your quest, consider that any treatment's effectiveness is/will be in direct ratio to the energy available to work with the treatment.

Dealing with a doctor(s) that blame you (or that you interpret as blame) is definitely a huge problem as well. I find it odd that with all the support your mother has given you, and all the maturity that you have, that the choice of doctor is not more readily up for discussion.

Sending you more hugs.


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## Skyseternalangel (Jul 23, 2011)

You sound similar to me, minus the mouth ulcers and gallbladder issuses.

Mine is mainly psychological though, with some immune issues.

My parents don't believe in modern day medicine, and thus I've grown up to fear it or feel it isn't necessary.

I used to be able to handle anything but then I got sick in 2011 and since then I have been a fragil flower that is always sick or cold. I get headaches frequently, fever, colds, I've lost about 70lbs.. but I believe that is due to the fact my parents said I was "chubby" for a straight year so I began to kind of skip meals and not eat very well. I'd exercise my buns off, so I looked great but felt like crap.

I found that making sure I eat right has really helped. 

I feel if you find a diet (not a diet as in weight loss but what you eat and what you don't) that adequately gives you your basic necessities then whatever else you experience will indicate what needs attention. Such as if you still experince frequent issues like fever or headache then you know there is something influencing those symptoms.


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## Endiku (Dec 6, 2010)

As far as I know I'm going under general anesthesia because they're doing, as someone else said, a 'top and tail' with me too, which means I'll be having an endoscopy at the same time. I will also be having small biopsies done in multiple areas so I do NOT want to be awake! xD

I'm sure that it is at least partially due to stress. I'm never not busy, and I seem to be incapable of doing nothing. For example, I planned to take this summer and my senior year easier; but without even realizing it I let myself get suckered into agreeing to help run 3 weeks of summer camp. For my senior year, doing 'just four credits' of the basics (I finished all of my electives last year in hopes of an easy year this year) I got talked into dual credit math, my toughest subject, as well as dual credit English + a normal semester of British Lit because I'm still missing that. My mom and the college advisor mean well, but I'm already overwhelmed and it hasn't even started. At the same time though I don't want to miss out on this chance to get nearly free college hours. 

I'm also incapable of shutting my brain 'off.' I'm ALWAYS worrying, always plotting, always thinking. I try to stop thinking but it just doesn't work. That sounds aweful, I know xD I try not to worry, but I just...do. And that takes a huge toll on my health. I have more GERD when I'm stressed, and I stress easily. I've gotten better about handling my stress, but I know I'm still terrible at it. I hide my stress from my family too because I already am such a bother to my parents with all of my health problems, and they've always depended on me for not being the problem child (my sister has severe depression and has tried committing suicide multiple times, one of those times being VERY recent) so I hate to be like 'oh by the way guys, I'm super stressed to sooo...' to add to THEIR stress. The only time I really don't stress is when I'm with Sour or Kenzie with no other people around, such as when I'm feeding them. It makes me feel calmer.

It is strange that my mom isn't willing to get another doctor, but there isn't much I can do about it. I've been hinting that I feel like maybe its time to 'broaden our horizons' such as trying to find one of those natural doctors someone else mentioned, so maybe eventually she'll let me switch.

I feel so terrible though, because I know I cost my parents a LOT of money. We have so many hospital bills and most of them are because of me. And that causes me stress as well. 

Sometimes I feel old xD like, really old. I see the entire world in a TOTALLY different way than all of my friends (or not friends) that are my age do, and it makes me feel like somewhat of an oddity. I worry about finances, the lives of neglected horses, bosses, family, and making things better for other people. Yet I just sat in the car for an hour and a half with a girl who is my age who ranted the entire time about how she wants her mom to just leave her alone and quit getting her business, and how its so unfair that she has to do this or that chore for a $100 weekly allowance and such. I almost wanted to puke when I listened to her because instead of sympathizing with her like the other girls did, I felt like crying for her poor mom who is just trying to be a mom.

I think in some ways all of my health and learning problems have made me who I am though. I LOVE my family, especially my mom. I can't even fathom how hard it must to be to raise and care for us. Sure I get mad at her sometimes and she gets mad at me, but I'd never call her the names that girl called her mom, and I'd never want her just 'out of my life' because I'm 17 years old. I've relied on her a lot to help me through all of my struggles. So maybe I shouldn't be so sad after all about my health problems. I'd take physical pain and some stress with a great family to back me up over the 'perfect' rich life but no family love any day.


OHHHKAY. Just realized how off topic I got. I'll be quiet now xD


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## NorthernMama (Mar 12, 2008)

Sounds like you have to learn how to say, "No, sorry, I can't do that now. Ask me again in 6 months." There will always be something in the future. If it's not exactly what is there now, it will be different. That's OK. No sense in wearing yourself out resulting in not having a future. Enjoy living now. Live to learn, live to enjoy, live to live. DON'T LIVE TO WORK and wear yourself out. Been there, done that. It's NOT worth it.

As for your brain never shutting down, although that doesn't happen to me, it does happen to someone I love and it certainly is debilitating. Just once, I managed to get him into a situation where he was actually, admittedly <gasp> bored. It did him soooo much good. We went out of town, rural location, and then as it worked out, everyone except he left the campsite and I somehow had his cell phone. He had no vehicle, no phone, no tablet, nothing to read, no bush to walk in, no stores nearby, no other people really. And he was like this for about 6 hours. It took him about 3 hours to get to boredom and the remaining 3 hours were like an entire weekend of holiday for him. Amazing.

Maybe try Yoga? Give up something that you are doing for someone else or give up something that can wait. Yes, there IS something that you can give up. Replace it with something for your wellness. Not just something you enjoy, but something to benefit your soul. And something that doesn't have firm obligations. So, if you feel crappy one day and don't want to go, it's perfectly okay to stay at home and eat ice cream on the couch for those one or two hours instead. Regardless of if you go or not, the time is still 100% only for you. No chores, no calls, no research, nothing. Pick flowers or something.

And, I'm slapping your wrist right now. NEVER FEEL BAD ABOUT WHAT YOUR PARENTS DO FOR YOU. Feel awesome that they are finding ways to help and that they have the resources to do it, plus the willpower to continue to search for solutions. It is NO ONE'S FAULT that you are who you are. It just is. I hear that you love, respect and are grateful for what your parents do. Your parents love you too and I'm sure that they don't for one minute complain that if it wasn't for you they wouldn't be in this mess. I have two children and both have or have had various long term issues that have depleted funds, depleted emotions, or depleted my sanity. I am a very selfish person. Yet it has never, ever crossed my mind (before today) to even possibly think that, "Well, if only he didn't have this problem, my life would be easier." It never occurred to me at all that a parent could possibly think that. From what you have said about your parents, I'm confident that they are on the same thought-train.

As for peers of your age-group: I can't see you spending much time at all with the average teen girl or guy. You are indeed old in many ways. Most teens won't have any concept of your life. That's okay. They can do their teen thing now. Then they'll have to grow up all of a sudden one day. At which point, you will be an official, independent adult, and you can revert to teenhood! LOL


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## Skyseternalangel (Jul 23, 2011)

Endiku said:


> Sometimes I feel old xD like, really old. I see the entire world in a TOTALLY different way than all of my friends (or not friends) that are my age do, and it makes me feel like somewhat of an oddity. I worry about finances, the lives of neglected horses, bosses, family, and making things better for other people. Yet I just sat in the car for an hour and a half with a girl who is my age who ranted the entire time about how she wants her mom to just leave her alone and quit getting her business, and how its so unfair that she has to do this or that chore for a $100 weekly allowance and such. I almost wanted to puke when I listened to her because instead of sympathizing with her like the other girls did, I felt like crying for her poor mom who is just trying to be a mom.


Girl I'm the same way.

Let me tell you a quick little story about just how different.

I was on an airplane from New Zealand to Hawaii. I took my seat by the window and was soon joined by a girl around me age (under 21)

The plane takes off and the drink cart comes around. I ask for some iced tea and she asks for beer. And as the plane ride (9 hours) continues she asks for more beer.. and gets really drunk. 

Then the food comes and I pick the beef and she picks and chicken fingers. Then it's time for a movie and I pick the new MIB and she picks Snow White.

She then proceeds to blast music via her earbuds that was so loud I could hear it, and passed out ON MY CHEST to which I was too polite to do anything.

It was so crazy how different we were. Even the way we were dressed!


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## Joe4d (Sep 1, 2011)

I wish I could wave a magic wand, someone your age shouldnt even know what any of those words mean. I truely wish the best for you and hope you find a DR House, that figures everything out.


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## Tracer (Sep 16, 2012)

Somac is actually for heartburn and acid reflux, but I've found it also settles my stomach really well.

I second taking up yoga, as well as meditation. I have trouble switching off, too, so I will sit/lie and just think of black. I think about it until that's all I'm thinking about, and that I almost lose awareness of where I am. If you play some soft instrumental music, it will help too. You will find that, when you pull yourself out of it, you will feel so refreshed. I compare the feeling to stepping out of a cold shower on a stinking hot day. You could try some aromatherapy too - lavender works especially well for me when I'm tense.

I also asked my parents about the anemia thing, and yes, she gets very anemic. The fact that you are fine with high fibre foods is interesting though, as I don't think I've heard of a case of Crohns without having that problem.

As for feeling bad about the money your parents are spending on you - That's what parents do! I try to pay for all repairs, services, insurance etc on my car, but if I will be left short, my parents insist on paying at least half, even if they can't really afford it. There have been a few times when I have had to loan money to them for bills, and the guilt on my mothers face is so strong that I know how hard it is for them to not be able to support me at that point in time.


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## Delfina (Feb 12, 2010)

NorthernMama said:


> Someone posted that (s)he was under general anaesthesia for a colonoscopy. I don't know why that would be the case. It is really considered non-invasive as the examine involves an already existing orifice / pathway. No need for any anaesthetic at all, local or general.


WRONG!!!!

You obviously don't have an illness affecting your colon. If you did, you would 100% understand why patients are routinely given anesthesia of some variety during the procedure.

I had a sigmoidoscopy (same as a colonoscopy but limited to the lower region of the colon, nowhere near as invasive) sans pain meds and let me tell you, it was THE most painful thing I have ever had done. I had 3 nurses literally holding me down and 2 quit and walked out mid-procedure because the Dr refused to knock me out or give me anything he kept insisting that I just needed more pillows! I dunno WTF he thought a 50th pillow was going to do for me! Hubby could hear me screaming halfway across the hospital, he about lost it since I've given birth to 2 kids and certainly wasn't screaming in agony during their birth and that was with no pain meds then either. Jamming something up into an inflamed, infected area is without a doubt, extremely painful. 

I immediately found a new Gastroenterologist following that fiasco and he was horrified that anyone would literally torture a patient. Due to moves, insurance changes and so forth, I've now seen probably 15 different Gastroenterologists in the past 25+ years and none of them would even consider doing a colonoscopy on an awake patient. I ask upfront with each new Dr if they plan on knocking me out and the response is always "Of course, why wouldn't I?".


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## lilypoo (Jun 15, 2013)

My 8 year old daughter has Crohn's. She was sick nearly from birth and was diagnosed with ulcerative colitis at 16 months but later the dx was changed to Crohn's. She had a stroke at age two due to being on sulfasalazine without folate supplementation. She fully recovered but we had a few very scary years with feeding tubes, etc.

She's been in remission for a few years. Stress and anxiety definitely do seem to affect her symptoms. We have discovered that certain foods have an effect as well, especially if she's having a break-through flare.

Anyway, the testing isn't difficult to recover from at all and you'll get some much needed answers. I'd suggest keeping a food/symptom diary if you don't already. Hang in there! And don't feel guilty!


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## Endiku (Dec 6, 2010)

Yeah, it _is_ strange that high fibre things don't hurt much. They do cause constipation if I eat more than a little, but I figured that was kind of normal since my mom has the same issue.

I would like to try yoga or something similar, but I'm not sure where. I don't have my own room and my home is a mad house of children and animals that are NEVER quiet and I get agitated when it is too loud. I guess I'm just not a huge people person, which sounds awful (HEH....just learned today that I've been spelling awful wrong. Whoopsies.) but its true. I LOVE the suggestion of going and picking flowers though. One of my hobbies that I stopped due to lack of time with collecting, identifying, and pressing flowers. I have dried flowers all over my bedroom walls and I adore them. Maybe I'll start doing that. Finding flowers is always a stress free (unless I grab something thorny! LOL) thing for me and I miss it a lot. Great idea. I also love to paint, but again I just haven't had time. Maybe I'll set aside an hour every week to do one of those things. It sounds nice.

Tracer, I'll ask about Somac then! Its worth a try. Aromatherapy probably wouldn't work well though because I'm ultrasensitive to scents and anything strong triggers a headache and eye pain for me, for some reason. I can't stand when people wear perfumes or cologne, or even strongly scented shampoos. Cinnamon scent actuall even makes me vomit. Strange that it just so happens to be something I'm allergic to as well!

Joe, thank you very much. I sure hope so too.

Lilypoo- your poor daughter! Give her a hug for me. She sounds like such a fighter. I do have a food/symptom diary as well as a pain log, and I've been keeping it for about 9 months now. Thanks!


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## Faceman (Nov 29, 2007)

Wow - you are a mess...:lol: Out of curiosity, have you and/or your parents checked into the possibility of hooking up with the UT Medical School there in Houston? Obviously you have an underlying immune disorder, and those can really get complicated and convoluted with all kinds of secondary and tertiary disorders associated with them. I don't know about UTHealth, but many medical schools are doing a lot of research on immune disorders. You are certainly an overachiever considering all the issues you have...


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## Tracer (Sep 16, 2012)

I think you almost answered your own question with the 'where to do yoga' thing  Go for a walk in as remote a place as you can - by a river would probably be good. Do some meditation/yoga, pick some flowers, and just have some time out. Alone time will probably do wonder for your stress levels.


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## Endiku (Dec 6, 2010)

An overachiever that drives herself crazy, Faceman! LOL.

No, we haven't yet checked because we didn't think they'd let us in. My current GI doctor insists that I'm not a 'severe' case so I end up waiting 2+ months between appointments even though I'm having a lot of issues, just because my appendix isn't about to blow up or something. My mom has to fight to get me in for appointments and they're usually double booked!

Currently though I'm going to Texas Childrens, at the campus nearest to us which isn't the main campus. Supposively they have some of the best doctors in the country but I'm not so sure about that. I guess what bothers me most about them is that they refuse to work TOGETHER to look at ALL of my symptoms and try to figure out whats wrong. They instead want to just deal with their part, so they end up treating me symptom by symptom rather than trying to find the underlying cause for all of my issues.

My parents are considering sending me to some research place in Missouri and having me live with my grandparents for a month or two while I'm doing that, but I think that's sort of last resort since I'm about to start classes up again.


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## Tracer (Sep 16, 2012)

Just thought I'd give you some fresh information on the scopes front-

I had mine yesterday. Drinking the stuff was pretty terrible (especially if your father is sitting there teasing you about it..), but you get used to it. I was freaking out whilst I was waiting to go in but all the nurses were absolutely lovely. One put some guard thing in my mouth to keep it open whilst the doctor injected something into my IV... and I woke up half an hour later. I was wide awake, looked at the nurse that was standing beside me, and, honest, I said 'Was that it?'. I just felt like I'd had a nap. My throat, nor the other end, was sore, my head wasn't fuzzy (it was only a light anaesthetic), and the only thing that hurt was the IV needle in my hand. They kept me on fluids for 10 minutes, took me to the 2nd reovery room to have something to eat and drink, and 10 minutes later I walked out. That afternoon I got the occasional twinge in my throat, but other than that, I would swear that they knocked me out and just left me until I woke up. I ate like a horse that afternoon, and slept for over 12 hours that night 

The scariest thing is waiting for the results xD And my hand still hurts from the IV and I have an epic bruise to go with it, but I can handle that.


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## zookeeper1991 (Sep 11, 2012)

Don't know much about Crohn's, but I just wanted to tell you I hope your doctors figure out what's wrong and that you are feeling better soon!!


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## Endiku (Dec 6, 2010)

Thank you so much for coming back to update me Tracer. Knowing that you felt alright afterwards is reassuring.

As an update from my side of the computer, I'm having a better week when it comes to being able to keep food down and I've gained 2 pounds, but I have a new symptom in that my mouth ulcers have progessed to becoming _facial_ ulcers as well, which is horrifying me to be honest. I'm keeping clear bandages in them as they appear until they don't look so terrible, which I am technically not supposed to do, but I'm a teenager. I get funny looks enough as it is because I have no eyelashes and thin eyebrows, but face sores? Ugh. You can't hide those, they make me look like I don't take care of myself (I do! I wash my hands and face religiously). But no one my age believes that.

This is what they look like if anyone has an idea. I originally thought that I'd somehow gotten staph but the doctor says in the exact same thing as in my mouth and gave my a steroid cream, but that's about it :/ I think they're about as stumped as I am.

They don't start like this, they begin as white blisters. Then they turn into this, dry up, and heal. Its disgusting and I pretty much feel like a freak right now.



















Oh, I think the official date for my colon/endoscopy is August 26th, and they just took a TON of blood yesterday to check me again for thyroid problems. I feel like they're just chasing their tails though.


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## Corazon Lock (Dec 26, 2011)

Endiku, I feel so bad for you! There's not a whole lot of advice I can give you, except perhaps reading this book: Nice Girls Can Finish First. Sounds like you love to help everyone, but perhaps sometimes you get suckered into it? It's a great book for any people pleaser. Not to mention books are relaxing!

I think we might end up seeing you on Mystery Diagnosis. No joke.


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## Endiku (Dec 6, 2010)

Oh dear...and the sad part is that I used to LOVE watching shows like that xD The Man With No Face, Medical Mysteries, Monsters Inside of Me...and now maybe I'm a candidate for one of those shows. LOL


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## tempest (Jan 26, 2009)

Endiku, I'm sorry that you have so many health problems. I really hope they figure out what's wrong. Have you tried or thought about going to the Mayo Clinic in Minnesota? They have an extremely good reputation.


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## Endiku (Dec 6, 2010)

I've thought about it, but I think I'd have to have a referral (which I could probably get) and a way to stay there for a long time. I live on the other side of the country (South Texas) so I'm unsure how that would work.

My family is considering sending me to Missouri for a few weeks to live with my grandfather and go to a few doctors in his area who specialize in hard cases like mine, but I just signed up for the fall semester at college and I'm going into my Senior highschool year. Then of course, I have a job and two horses to support now... so I'm not sure that it would work logistically speaking.

What frustrates me the most though is that my current GI doctor doesn't seem to see all of this as a big deal, and none of the doctors are working together to look at ALL of my symptoms (skin, hair, stomach problems, intestine problems, migraines...) and see if they may all fit together. They want to evaluate and treat each thing symptomatically, which is NOT working.


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## tempest (Jan 26, 2009)

I tried googling "Diseases that cause skin, hair, stomach, intestine, and head problems" and this is what came up.

The gut-skin connection: how altered gut function affects the skin

Not sure how much it's going to help but it was interesting. I wonder if there is any truth behind it?


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## Endiku (Dec 6, 2010)

That's very interesting...and it would make sense too. I have pretty bad acne as well as the other problems if I'm not SUPER careful about making sure I wash my face 4-5 times daily with certain soaps and the mouth ulcers seem to play up more when my GI tract is mad too. The skin problems (including dry scalp as well) DID show up when my GI tract started messing up as well, and the loss of eyelashes started at about the same time as the facial ulcers. 

Its all just so complicated! The blisters on my face resemble fever blisters that you might get on your lips I get those quite often too, and they're always severe and cause fever) very closely, so the doctor thinks they're the same strain. Herpes labialis I think? How they're related to my intestines, stomach, and esophogus though? I really don't know.


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## EmilyJoy (Dec 30, 2011)

Endiku said:


> Thanks for all of the different ideas guys. I really appreciate it. I'll research each of the things that you mentioned, as I'm really, really ready for some relief.
> 
> Tracer, does your sister have anemia? I ask because even on iron supplements, I am always boarderline anemic which affects my energy significantly. I also have high cholesterol (genetic, I'm partially Vietnamese). I can not eat acidic fruits, drink fruit juice, or drink soda as it tears me up and HURTS. I also cannot handle much red meat without feeding sick (I eat a lot of fish and chicken) and I've gotten to the point of not being able to eat fast food or resteraunt food at all because of the cramping afterwards.
> 
> ...



Go see a Natropath, they will get to the root of the problems. They look at the body as a whole, instead of treating the individual symptoms. What you have will not be fixed over night but I'm almost positive they will find out what your problem is, and a way to treat it... We know Regular Medical doctors, all I can say is that they have their uses, but are taught NOTHING good about nutrition.

Think about a horse during the winter who might have scruffy hair, you could probably find a medicine or drug that you could use to treat that symptom, research makes you look up more symptoms. 
Then you find out that he's got lice, so then you get another drug to treat that, but then if you research it you will find out it actually lacks vitamin A, more research would indicate that if you let him fill up on grass during the summer, (and feed A throughout the winter) that he would get it through nutrition, but that hay during the winter looses it's value fast. 

So the drugs really only treated the symptom, not the root cause which is what you need to find out. :wink: And yes, the example is really stupid, but if you get the drift then it served its purpose.

Really, what could one visit hurt? Any Doctor that blames the patient for causing the problem, really is just saying that he has no idea what is the problem is. 

My brother had/has a weird spinal cord injury, one of the things was that since he could not walk he also shouldn't be able to feel his toes, feet, etc. but he could/can feel, which made them say the feeling was all in his head that he was making it all up. They just didn't know what the problem was, but wouldn't admit it for anything, yet they wanted to do surgery on about everything. grrr:shock:

I hope you get better, it must be awful to feel that bad all the time!:-(


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## EmilyJoy (Dec 30, 2011)

Endiku said:


> What frustrates me the most though is that my current GI doctor doesn't seem to see all of this as a big deal, and none of the doctors are working together to look at ALL of my symptoms (skin, hair, stomach problems, intestine problems, migraines...) and see if they may all fit together. They want to evaluate and treat each thing symptomatically, which is NOT working.



This is exactly what Natropaths will help with _totally_!!! They are all about looking at all the symptoms and going from there. Really, check them out. I really, really think you will find your answers!


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## Endiku (Dec 6, 2010)

I'll definitely keep trying to convince my mom that we need to try a naturopath doctor, EmilyJoy. Your example makes a lot of sense considering that I JUST dealt with all of that with my filly, Kenzie xD she came with a host of deficiencies and horrific hooves/skin, but after fixing her nutrition to where she's getting the right amounts of everything, she's done a 180 and I swear her skin and hair are the softest on the farm. She always has people come up, stroke her mane and go 'O.O that's softer than MY hair!' its great xD and its just because I took time to figure out what she was lacking (vit A, biotin, and balanced Amino acids/omegas).

Do you know if Naturopath doctors are ever covered by medical insurance? At this point that is a very big deal for us because we otherwise can't really afford anything (which is why the chiropractor is a no-go.) so that severely limits us.


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## Darrin (Jul 11, 2011)

Endiku said:


> I'll definitely keep trying to convince my mom that we need to try a naturopath doctor, EmilyJoy. Your example makes a lot of sense considering that I JUST dealt with all of that with my filly, Kenzie xD she came with a host of deficiencies and horrific hooves/skin, but after fixing her nutrition to where she's getting the right amounts of everything, she's done a 180 and I swear her skin and hair are the softest on the farm. She always has people come up, stroke her mane and go 'O.O that's softer than MY hair!' its great xD and its just because I took time to figure out what she was lacking (vit A, biotin, and balanced Amino acids/omegas).
> 
> Do you know if Naturopath doctors are ever covered by medical insurance? At this point that is a very big deal for us because we otherwise can't really afford anything (which is why the chiropractor is a no-go.) so that severely limits us.


Depends on your insurance. All but my last employer's insurance covered alternative medicines. Unfortunately if yours doesn't cover chiropractors it probably doesn't cover naturopath either.


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## EmilyJoy (Dec 30, 2011)

If you can afford it I would recommend it. You aren't getting anywhere doing what you're doing now, at least the first visit would let you know how they are going to treat etc. Also the your case may prove that not only you lack nutrition or have imbalances but you may have an over-load of toxins. I'm not a doc so I can't say, but at least I would get _one_ visit.


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## Endiku (Dec 6, 2010)

Just as an update, my three thyroid tests came back normal. That's a good thing right! Now my normal pediatric physician in convinced this is all in my head though. Right.

Also, the blister type things have started appearing (smaller) on my head as well. Great. I have another appointment with my doctor on Monday for them, but I'm not sure she's being all that proactive about it.


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## FlyGap (Sep 25, 2011)

Endiku I saw this article and immediately thought of you.
Genetically Modified Corn - Allergies to GMO Corn - ELLE

How you doin?
_Posted via Mobile Device_


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## Endiku (Dec 6, 2010)

Wow...that's crazy  and really scary. The fact that we eat genetically mutated things in pretty much everything we eat, without even knowing it is insane. I wonder if I might have an intolerance to corn like that lady... I don't have the terrible muscle/bone pain or hand problem, but I do have a lot of the other issues she did. It might be worth looking into. Thank you for that link.

I'm not doing too terribly, but I am having one of my bad weeks as far as eating goes. My mom has started making me count the calories I take in so that she can monitor how much I'm eating, but its disheartening. Even with the half of a Boost protein shake that I drink (they make me feel awful so I can only get half of one down without throwing it back up) I'm only getting 5-900 calories a day on my bad weeks, yet I'm still working and walking 3-4 miles a day as part of my job (I also wear a pedometer to see how active I am), lifting 3-4 50 lb feed bags, lifting boxes, etc., which easily burns the same amount of calories as I'm taking in.

Actually, I'm surprised I'm not thinner than I am. I don't really look all that thin unless I'm wearing a close fitted shirt, and my ribs show quite a bit (you can feel them from my back and my front unfortunately) but my arms and legs are the same as they've always been. I must have a really slow metabolism...which I guess is to my advantage! lol

I have to admit I'm having some confidence issues though. With no eyelashes and now the sores randomly popping up on my face or scalp, I feel disgusting. I need my hair cut but I just can't bring myself to go to a salon (even a walmart one) and risk them seeing one on my head and freaking out or something.... :/


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## Viranh (Apr 7, 2013)

Autoimmune disorders suck. Are you doing a specific food diary to find things you can eat? Are you doing bland, low fiber stuff? My friend with Crohn's can't do much fiber. It took her a while to find that fruits and veggies in particular were hardest for her when she was having a flare up. I'm not saying it will be the same foods, but hopefully you'll find something. I hope you get something figured out. 

PS: I've got celiac, and can't have dairy (cross reaction to casein). When I get glutened I take a bunch of fish oil and probiotics, and eat pretty bland, like peanut butter and rice crackers. I also like kombucha. It makes my stomach feel a lot better. No idea if any of this applies for you, but Crohn's and celiac are similar, except that celiac has a specific trigger (gluten).


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## Endiku (Dec 6, 2010)

Yes, I have a food diary. It appears to me that dairy, all nuts, cinnamon, and pears are huge no nos that will make me sick for an entire day or longer. Fruits with a lot of acids (basically anything besides bananas, peaches, and sometimes cherries) are very likely to make me sick, and red meats tend to make me sick. Fish and chicken are usually ok. Fats and grease make me very sick as well but that is a gallbladder thing. 

So I'm basically restricted to a select few vegetables, grains, eggs, and chicken.

I can't drink anything but water and occasionally some Gatorade as well.


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## Tracer (Sep 16, 2012)

With the range of foods that affect you, I can't help but think of reflux. When I was younger I had huge troubles with acid and had to avoid citrus and spicy foods.

But red meat... I mean, it makes me sick too, but that's because I just don't like most of it! You really are a mystery. You have to keep us updated. I'd love to get you to my doctor; he'd send you for every test under the sun, though it already sounds like you've had most of them.

Hopefully your scopes will shed some much needed light on things


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## Endiku (Dec 6, 2010)

I do have severe reflux and I'm on protonix (80g a day I think?) for it, so I think its definitely a big factor at least in the digestive problems. I actually had reflux even as a baby, then it dissapeared for a few years and reappeared when I was 12 or so. Reflux doesn't explain the sores, hair loss, diahhrea (it does explain the vomiting though) migraines, or constant illness (bronchitis, pneumonia, colds, strep, etc. All upper respiratory) though so I can't help but feel there has to be something else too.


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## NorthernMama (Mar 12, 2008)

If you can read this while you are on your way to your relatives: Good luck! I hope some answers are found for you. {hugs}


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## Endiku (Dec 6, 2010)

Well I have my colonoscopy/endoscopy in just a few days... This next Thursday. Oh joy! I'm not looking forwards to it at all, but such is life!

My eyelashes were just starting to grow back, but they're falling out again, so that's a big bummer... heres what they look like now. There are more on the right side than the left, but they're super short and brittle. The left has almost none.









This whole ordeal has taught me how to disguise my eyes with a buttload of make up though XD most people cant even tell when I have the make up on 
thankfully.









I haven't had many more of those weird face sores though, so that's good. I did have to give in and cut my hair differently/shorter since I have a lot less hair than I did when I was healthy, but it doesn't look too bad so I'm glad for that at least.


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## EmilyJoy (Dec 30, 2011)

Well just keep a stiff upper lip, hopefully you'll be out of the woodwork soon!


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## BKLD (Aug 11, 2013)

I have no advice or anything, I just wanted to be here for support. :hug: Though you've got yourself a real good support system here already, what's one more? I'm sorry that you have to deal with all this stuff, Crohn's and other autoimmune issues just suck. Just keep your chin up, you'll get through it.


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## Tracer (Sep 16, 2012)

Here's hoping that the scopes show something that gives you a a definitive answer <3


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## HollyBubbles (Jun 22, 2009)

Let us all know how the scopes go, I myself had one yesterday due to not being able to eat anything, they bounced between the idea of cystitis/gallstones/stomach ulcers and a couple other things but found no answers so they discharged me and sent me home with no answers and more pills. I know im not going through as bad as what you are on the food side of things, but know I can sympathise with you to an extent.

Are they giving you a general anesthetic for both procedures or just a local and sedation? I highly, highly recommend a general if you get the option, after the ordeal I went through yesterday I really can not recommend it enough, though apparently I am harder to sedate than most, so my experience was not typical and I had crappy doctors, so I'll bet your experience won't be as bad as I had.


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## Endiku (Dec 6, 2010)

Yes I'm having general anesthetic thankfully xD they didn't even mention not doing general on me so I'm glad for that at least!


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## amp23 (Jan 6, 2011)

I have no advice but I'm also here for support! I couldn't imagine off through all you're going through. Hugs! Will be keeping you in my thoughts. I hope they can find an answer!
_Posted via Mobile Device_


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## HollyBubbles (Jun 22, 2009)

Endiku said:


> Yes I'm having general anesthetic thankfully xD they didn't even mention not doing general on me so I'm glad for that at least!


Oh that's great, it'll be a breeze then  they refused me when I asked for a general and made me suffer through a sedation. They told me I would fall asleep from sedation and not remember or feel a thing. Yip, so much for that.

I'm sure you'll keep us all updated, and I sincerely hope they find some answers! It's not nice at all being the "medical mystery" of the general population


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## Endiku (Dec 6, 2010)

Eeesh, I don't think I could do that  they had to knock me almost completely out just to pull my two incisors for braces! LOL


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## Endiku (Dec 6, 2010)

And so the prep begins... 1 1/2 64 oz gatorades between 1 pm and 12 am...and a GIGANTIC bottle of miralax. Some sort of Z pill too. Something tells me I'm gonna hate Gatorade after today xD could be worse though. Apparently the other stuff tastes even worse.


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## HollyBubbles (Jun 22, 2009)

Endiku said:


> And so the prep begins... 1 1/2 64 oz gatorades between 1 pm and 12 am...and a GIGANTIC bottle of miralax. Some sort of Z pill too. Something tells me I'm gonna hate Gatorade after today xD could be worse though. Apparently the other stuff tastes even worse.


Nah you'll be fine, I'm not sure what the "other stuff" your talking about is, since I was nil by mouth for over 36 hours before I had my scope.
Blue gatorade is the only one I've tried so far, completely irrelevant but hey :lol:


Just thinking aloud here... Have you ever been to a colour therapist? Yep I know, *cue the crazy looks* but I went to one the other day kind of as a last resort since the doctors here have no clue, and he picked up a whooole bunch of stuff, some that I already knew, some that the doctors picked up, and some that nobody knew about but I sat there and went, well that makes sense, why didn't the doctors see that?
Just a thought if, like me you get no answers after the scopes.
I won't go through the list of stuff he picked up on me since this is your thread, but he even picked up things like lead poisoning and agoraphobia, which I've known about for years now and never made mention of at all.

Good luck and let us all know how you go


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## Endiku (Dec 6, 2010)

I'm not sure what the other stuff IS but apparently its just a liquid laxative drink, but you have to drink a ton of it. Instead, I'm using powdered Malox (14 days worth in a few hours to be exact O_O) and pills. I'm ALMOST done with it...one more 8 ounce drink of it in 5 minutes and I'm good to go! So far it hasn't been too bad.

No, I've never even heard of a color therapist. How interesting! What do they do, exactly?


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## HollyBubbles (Jun 22, 2009)

Endiku said:


> I'm not sure what the other stuff IS but apparently its just a liquid laxative drink, but you have to drink a ton of it. Instead, I'm using powdered Malox (14 days worth in a few hours to be exact O_O) and pills. I'm ALMOST done with it...one more 8 ounce drink of it in 5 minutes and I'm good to go! So far it hasn't been too bad.
> 
> No, I've never even heard of a color therapist. How interesting! What do they do, exactly?


14 days worth, oh wow. I hope that works out well for you!!
I think you should just set up camp in the bathroom for the night :lol:

It sounds kind of odd, but the one I went to used a pendulum over a board with a heaps of different sets of coloured string on it, and he would swing the pendulum back and forth over each row of colours by using my own body energy or something. When the pendulum suddenly started going around and around rather than back and forth, that meant my body had reacted to it, so he would put that particular set of colours into a box with heaps of different crystals in it, and move onto the next colour.

He went through like 4-5 boards with different sets on them, some for toxins, some for bodily damage, some for vitamins and minerals, each board had maybe 30 sets of colours on it or something. He even picked up my nerve damage and bone damage, I knew about the bone damage, and suspected the nerve damage. 

He then had me lay down face first onto a massage table, and he used the pendulum over my body from head to hips, anywhere it reacted he would touch a crystal to the spot, he even touched a certain spot right under my shoulder blades that I knew had been sore, but I hadn't told him that.
He then did something to my thumb, which I'm awaiting surgery on to reattach a ligament.. That was two days ago and it's not been sore since.
Here's the NZ website if you want to have a read Colour Therapy - The Alternative Therapy

He also had this sound healing bowl thing, and he held it over me and rubbed a pestle looking thing over the rim, it started making a quiet droning type noise, and then as he went over my neck, this bowl started screaming, it was an insanely loud and high pitched squeal, apparently this told him that my neck had been out for a long time. He later said that he had never heard it make that noise before.

A lot of therapists can do the treatment on animals too, this guy had a racehorse who won 6 races for him, so I'm thinking about getting him out to see DJ and Mitch


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## Endiku (Dec 6, 2010)

Yeeeah. Its not fun! LOL. I've already set up camp right by the bathroom. Woohoo!


Wow, that's interesting. I doubt my mom would go for it though being that she won't even take me to a chiro (not her fault, its just SO expensive), sadly xD


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## HollyBubbles (Jun 22, 2009)

Endiku said:


> Yeeeah. Its not fun! LOL. I've already set up camp right by the bathroom. Woohoo!
> 
> 
> Wow, that's interesting. I doubt my mom would go for it though being that she won't even take me to a chiro (not her fault, its just SO expensive), sadly xD


haha good plan!

Yeah, I'm not sure what it would be worth over there, but the guy I saw was $40, although I still have to go back for another two sessions.
My mum just figured that it would end up being cheaper than the doctors if it works because we have spent several hundred dollars on doctors just in the past month, going up to 3 times a week at between $40 and $60 per appointment for my doctor :shock:


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## LovesMyDunnBoy (Aug 11, 2011)

Endiku said:


> I'm not sure what the other stuff IS but apparently its just a liquid laxative drink, but you have to drink a ton of it. Instead, I'm using powdered Malox (14 days worth in a few hours to be exact O_O) and pills. I'm ALMOST done with it...one more 8 ounce drink of it in 5 minutes and I'm good to go! So far it hasn't been too bad.
> 
> No, I've never even heard of a color therapist. How interesting! What do they do, exactly?


You. Are. So. Lucky. I got the 'other stuff' and it's a gallon and a half worth. They decided to give me pineapple flavor *gag* it was awful. I tried mixing powdered gatorade with it. I couldn't even get half down. I was lucky it turned out okay though.
_Posted via Mobile Device_


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## Endiku (Dec 6, 2010)

Yeah, I'd say at that point its worth a shot!

I'm hoping if this is an ongoing problem (probably will be) for me, once I'm out on my own in a few years I can pursue different types of treatment and doctors since I'll be the one dishing out the money. For now though all I can talk mom into is traditional doctors, though she has agreed finally to let me see a naturopath doctor if nothing comes up in these tests.


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## Endiku (Dec 6, 2010)

Ok, well I had the tests this morning and they went fine. I could hear throughout the entire procedure which was a little strange, but barely felt a thing. My throat is killing me now though. I'm sure it will be fine in the morning but geez to I wish I could eat ice cream right now.

They didn't see anything horrifically wrong other than that I have an estimated 3x as much bile as I should have in my body, and it coats just about my entire insides so that they're yellow. No explanation as to why theres so much and why its making as far as even to the bottom of my small intestines and up into the back of my mouth, but they're going to try a new medication that 'coagulates' (I think that's the word?) the bile and makes it thicker so that it hopefully slows down and stays where it should stay. Without a gallbladder though I have nothing to siphon it like I should, so there really isn't a lot I can do. I sorely wish I hadn't had that thing taken out... I should get the biopsy results by next week and then I'll know whether or not I'm having trouble breaking down any certain type of sugar, and we'll go from there. No severe inflammation of the intestines though, so they don't think I have Crohns after all. 


I'm insanely angry right now though...whether or not with justification or not I don't know. I think I was still supposed to be asleep but I overheard my doctor basically telling my parents that he sees no real reason for me to be in pain or to not be eating, and that he thinks I might be doing this for attention/because I have 
a form of hypochondria or something. He said maybe I'm anorexic, and I really ought to see a psychiatrist, especially since my mom was anorexic at my age.


Really. Honestly. I realize he doesn't know me other than knowing what my entire insides look like and that I'm always saying that I'm hurting, but again...REALLY? Does he think I enjoy spending away our savings (and racking up bill after bill for my parents when I KNOW our financial situation is bad), going in for all of these tests, having the life drained out of me? If it was all in my head, why do I constantly have diahhrea, why do I get those horrific sores on my face, and why do I put myself through all of this? I'm completely at loss here. I absolutely hate being sick, and different, and expensive. I don't throw up nearly ever morning on purpose, I sure as heck don't weigh only 83 pounds on purpose, and I definitely do not cause myself to have constant stomach pain on purpose. 

I think he just doesn't want to admit that he has no earthly idea whats wrong with me, but I really don't know anymore. I mean, I can't exactly explain why my body looks normal and tests normal but isn't normal either. It makes no sense. 

What hurt me most though is that I'm pretty sure my dad agrees with the doctor. He pretty much told my mom we aren't spending any more money or tests or doctors on me and that I need to either snap out of it or deal with it. Since he suffers migraines and occasional stomach problems I guess he figures I should just be able to suck it up too without help...and I really feel bad for having put so much financial stress on him, but I can't. I realize that I'm fairly healthy compared to a lot of kids, and I'm not on my death bed, but that doesn't mean I'm healthy. That doesn't mean I'm making this up for attention of all things. I'm not like that....and I would have liked to think he knew better than to think I was.

I'm sorry, this turned out as a rant. I'm just fuming right now. Feel free to knock some sense it to me if I'm thinking off color here.


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## Darrin (Jul 11, 2011)

Procedure wasn't a loss, now you know you are producing to much bile. Time to fire up google and start looking at what causes to much bile production to see if any of those match your symptoms.


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## HollyBubbles (Jun 22, 2009)

I agree with Darrin on that, at least you know one more thing that it's not, so that means there's one less thing that it could be.

What I've learnt lately is that a lot of doctors (not all, i'm not going to put every single doctor in the same box) go by the textbooks, if it's not black and white then it doesn't exist in their mind.

Feel free to rant away though, I completely understand your frustration, it's not fun and you just want answers.

Endiku, they bought up the possibility of me being anorexic as well, and bolemic.... But yet on the BMI calculator I'm still overweight(I love food, just can't eat at the moment), and I have a phobia of vomiting so I'm not sure how they pulled that one up.

How does your mum feel? Dads don't always understand (again, not putting them all in the same box here) my dad, he rants at me for everything, whether it's to do with me or not. It's all in my head he says, if I just do this then it will get better he says. As hard as it is to believe, he's actually worried and extremely frustrated with the doctors. Your dad may not know what to say or how to deal with it, he may even be at such a complete loss that he's unknowingly turning himself towards the idea that the doctors may be right, even though in his heart he probably does realise there is something going on with his daughter that the doctors just can't figure out.

How well does your mum do in communicating with you? If your able to, I would really really suggest having a heart to heart with her (again, if you have already) explain that you feel bad about the financial situation, and that you wish the doctors would find an answer, and that maybe it's time to go to that naturopath doctor or colour therapist instead of wasting money at a conventional doctors where you are just going in circles.

I know it's hard, I had to drop my course yesterday and that hurt a lot. I love that course, I was having so much fun and I don't want to quit, but I can't get off the couch without either collapsing on the floor or needing to sit back down.
PM me if you need to, I always seem to be online these days, since I can't really get off the couch and all


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## Endiku (Dec 6, 2010)

Oh Holly, sounds like you have it worse than I do! I'm sorry, feeling that bad must be terrible. I'm lucky that even with as little as I eat (probably 700-800 calories a day if I can keep it down) I'm not terribly weak or ghastly thin...I must have a slow metabolism. I really hope they find answers for you too  

My mom is great about all of this. She believes me when I tell her there's something wrong with my body, and she'd probably let me go to a different kind of doctor if it were up to her, but alas its my dad's decision since he's the only one working, and if he doesn't want me to go, she won't go against him. I can respect that, of course, but I can't help but feel a little desperate sometimes. Mom is the one who has pushed the doctors to do as much as they have, and while she does get frustrated sometimes when I refuse food or throw it back up, she knows it isn't anorexia. I'm not depressed and I absolutely do not think I'm fat...I'm just getting tired of no answers, just like her.

My dad isn't a bad guy, really. I didn't mean to make him sound that way. He makes poor financial decisions (and thus me putting us in more debt really strains him I think) and doesn't deal with emotion whatsoever, but I know he does love me even if he doesn't believe I'm really all that sick. He's said more than one hurtful things to me about being sick, namely at times when I've had to go into the ER for my migraines or something because it costs a LOT for me to go, but I don't think he usually means them. He just never learned how to empathise. He was raised by his dad after his mom abandoned them and has only brothers, so he never needed emotion or thoughtfulness I guess. He works hard to take care of us though. I only wish this WAS in my imagination and I could just get rid of it like he wants me to, or suck it up and deal with it. But I honestly don't know how to.


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## HollyBubbles (Jun 22, 2009)

I don't think I have it any worse than you do, we just have two different sets of stuff going on, plus you've had yours for a lot longer than I have, I think mines been about 2 months now maybe. I hope they do too, I'll probably end up going to a different hospital I would say.

Oh that's not so great, my dads the only one working too, but my mum still manages to get me to wherever I need to go so I'm lucky on that front.

I'm going to go to a rather weird suggestion here, but I remember a friend of mine doing it years ago.. Could you run a raffle to help get yourself to a doctors? I had a friend who set up a raffle, $2 a ticket and had about 100 tickets I think it was, the winner kept half of the full amount, so $100, and he kept the other $100 to help him pay for a few things when he was desperate.

I don't think you made your dad sound like a bad guy, he just sounds to me how my dad is so I understand that.
The reason you don't know how to is because I don't think it's physically possible to suck it up and deal with it since it's not in your head.. It's not like you've gone and said to your body "hey this will be fun, you should produce HEAPS of bile and coat my insides with it, woohoo!"


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## Wallaby (Jul 13, 2008)

I've forgotten already, have you tried eliminating gluten entirely from your diet for a while, just to see? I think I remember you saying that tests have been done that claimed you weren't a glutie, but the gluten tests are notoriously faulty.

I've probbbbbably mentioned this to you before but my anti-gluten symptoms fit only TWO of the symptoms listed anywhere on the internets. However, I'm extremely sensitive to it - last night I had my first 'episode' in quite a while...from having someone touch their gluten-y butter knife to some of my GF bread without my knowledge. It was just that simple and I was in the bathroom all night [me and you!! haha :hug:].

And, after going gluten free, things started changing about my body that I had absolutely no idea were actually issues - my feet that used to look like squares with toes attached suddenly look like feet, I lost a ton of weight, my lady-time cramps all but disappeared, and on...weird stuff!

Anyway, it only took a week of mostly zero gluten [I ate things that had "hidden" gluten in them, being a no0b to GF] for me to feel like a miracle had taken place in my body. And after feeling that way, there was NO way I was going back to gluten! haha



Also, I'm really sorry your dr is a jerk. :hug: I know how that goes. My MD thought I was making it alllll up when I told him about my issues. He literally said "well, some people are like that!" 
Um, yeah. Maybe so but I sure as heck don't have to live like that!! And then I went GF. haha

Praying for you, dear. <3 :hug:


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## LovesMyDunnBoy (Aug 11, 2011)

I feel ya Endiku. I feel like my specialists are running me around in circles.

I went to my primary doctor a few days ago to discuss the possibility of PCOS, she told me that's my Endos place to figure out. I went to my Endocrinologist yesterday, and told her my symptoms including oily hair/skin, acne.. "you should probably go to a dermatologist" my migranes "when do you see the neurologist again?" ovary pain "Do you have a GYN?"

Grr! And I wish I hadn't had my gallbladder taken out either. Anything I eat makes me sick. 

Hugs*
_Posted via Mobile Device_


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## Endiku (Dec 6, 2010)

I haven't, Wallaby, mostly because my parents have thus far been unwilling to buy gluten free foods (because they're more expensive) and definitely don't want to have to change their own diets at all to compensate. I'm really thinking about trying it though, even if I have to buy the food and fix my meals myself xD I know how to cook well, and cook for my family every other evening anyways- so maybe I can talk them into letting me try it. How long do you think I'd need to be gluten free to say "Ok, this isn't doing anything' or 'YAY, I'm cured!'? I could totally go for less 'lady time' cramping if nothing else...lol!

Dunn, I think you and I need to become doctors. Ones that are willing to work as teams to diagnose things


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## EmilyJoy (Dec 30, 2011)

Endiku said:


> I think I was still supposed to be asleep but I overheard my doctor basically telling my parents that he sees no real reason for me to be in pain or to not be eating, and that he thinks I might be doing this for attention/because I have
> a form of hypochondria or something. He said maybe I'm anorexic, and I really ought to see a psychiatrist, especially since my mom was anorexic at my age.
> 
> I think he just doesn't want to admit that he has no earthly idea whats wrong with me, but I really don't know anymore. I mean, I can't exactly explain why my body looks normal and tests normal but isn't normal either. It makes no sense.


This^^ is what the doctor told my parents when he couldn't figure out what was wrong with my brother. He said everything was in his head and he was making it all up. grrrrrrrrr!

I sure hope you can beat this thing, I can remember there was a time when my brother could only eat two foods, applesauce and lemon juice, it was not fun for him when the rest of the family could eat so many other things.


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## Wallaby (Jul 13, 2008)

Endiku said:


> I haven't, Wallaby, mostly because my parents have thus far been unwilling to buy gluten free foods (because they're more expensive) and definitely don't want to have to change their own diets at all to compensate. I'm really thinking about trying it though, even if I have to buy the food and fix my meals myself xD I know how to cook well, and cook for my family every other evening anyways- so maybe I can talk them into letting me try it. How long do you think I'd need to be gluten free to say "Ok, this isn't doing anything' or 'YAY, I'm cured!'?


It only took a week for me so probably, depending on your sensitivity, probably a week is all it would take. I would imagine that, since your symptoms are pretty severe, you would probably know within the week if it was working. Maybe 2 weeks, but I bet 1 would be long enough.


I think that for a week you don't/shouldn't need to spend allll that much money. For your diet 'staples' you could do rice and potatoes, then add things like chicken breast [again, label checked] or whatever meat appeals, most spices [however, be sure they are a GF brand like McCormick - often flour is added as an anti-caking agent and isn't marked on labels], or whatever else appeals. 
For breakfasts, buying a loaf of GF bread from the store, then toasting it and adding GF pb+jam can be pretty tasty. However, the toaster is another source of cross contamination so toast in the oven!  
I have a pretty good bread recipe too but for just a week-trial, buying the flours and all might be more $$ than it's worth. 
Just check the labels of everything before you buy/eat it and make sure whatever it is has never come into contact with gluten. Also, avoid soy products unless it's marked GF - soy+wheat are often grown in the same field and the soy is just sown over the harvested wheat = gluten soy! :shock:
And look for things like "modified food starch" and the all-inclusive "spices" or "___ powder" on labels. Modified food starch can be made from corn, or barley, or wheat, or a mix - barley and wheat = enemies. "Spices" + "____ powder" = could be safe, could have wheat in it somewhere. 

Another thing that you might want to buy [if you are a glutie and if you're anything like me, your body is going to CRAVE wheat things and you are going to have a crazy hard time saying no to wheat-based sweets! haha] is a box of GF cookies. That was a lifesaver for me when I wanted to abandon it all and "just have one" gluten cookie. :lol:
I started my week on a Sunday and by Thursday, I felt like a wheat addict. By the next Sunday, I felt better than I had in years but man. haha

Here's my favorite "look-up" site for GF stuff. You can search by specific brands/products, specific things you want to eat, etc. Suuuuper easy and super helpful! Still have to check labels, but it definitly makes it easier to find a GF option, before you're searching through alllll the labels at the store!!
GF Overflow - Gluten-Free Product Search

Another source of contamination that might be an issue for you is your medication. Many generic pills are made from a combination of flour and other things, to cut costs. That could be an issue. :-(


:hug:


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## Endiku (Dec 6, 2010)

Wow, I didn't even think of soy as being a gluten food because it shares a field with wheat, or about medicines having gluten in them o.o that's crazy! I happen to eat a lot of soy, too. That's how I get most of my calcium (soy milk) since I can't have dairy. I guess I could switch to coconut milk though! (NASTY stuff by itself, but okish in food)

I'm going to talk to my mom about going off of gluten, and I'll plan on two weeks just in case. Hopefully she agrees to at least let me try it!

No flour tortillas or wheat bread sounds like torture, but I'm willing to try just about anything if it means I'll feel better!


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## EmilyJoy (Dec 30, 2011)

Endiku said:


> Wow, I didn't even think of soy as being a gluten food because it shares a field with wheat, or about medicines having gluten in them o.o that's crazy! I happen to eat a lot of soy, too. That's how I get most of my calcium (soy milk) since I can't have dairy. I guess I could switch to coconut milk though! (NASTY stuff by itself, but okish in food)
> 
> I'm going to talk to my mom about going off of gluten, and I'll plan on two weeks just in case. Hopefully she agrees to at least let me try it!
> 
> No flour tortillas or wheat bread sounds like torture, but I'm willing to try just about anything if it means I'll feel better!


Maybe Almond Joy milk?^^


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## Endiku (Dec 6, 2010)

I can't drink almond milk or use it in my food because I'm allergic to all nuts except pecans...and unfortunately there is no such thing as pecan milk! lol

Oh, by the way guys? Sunflower Butter = BEST PEANUT BUTTER SUBSTITUTE EVARRRRR.


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## EmilyJoy (Dec 30, 2011)

^^ How about Rice milk? (And Oh by the way it's _not_ Almond Joy lol it's Almond Dream, Almond Joy is a candy bar, sorry!)


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## Endiku (Dec 6, 2010)

I've actually never tried that before! Maybe I will >


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## Viranh (Apr 7, 2013)

Hemp milk is actually pretty decent, at least I think so. Careful with rice milk, I've been told that Rice Dream is manufactured using barley, and some people react to it. I have celiac disease and I also seem to cross react to dairy proteins, so I have the misfortune of being familiar with nasty dairy substitutes. I have also never reacted to an organic soy milk that did not have barley on the label, so I wouldn't completely cut out soy if it's not a problem food for you. 

I also wanted to correct the food starch comment--modified food starch in the US is almost always corn. Modified food starch has been taken off the list of things to avoid for celiacs in the US. 

Another note, nut flours are often used in small amounts in gluten free baked goods like cookies, so check labels carefully if you're very allergic. I think Udi's and Glutino are pretty good about labeling soy, dairy, and nuts in their products. 

I hope that a diet change helps you. You might try an elimination diet where you slowly reintroduce major allergens after a week or two and see if you react to any of them.


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## Wallaby (Jul 13, 2008)

Viranh said:


> I also wanted to correct the food starch comment--modified food starch in the US is almost always corn. Modified food starch has been taken off the list of things to avoid for celiacs in the US.
> 
> Another note, nut flours are often used in small amounts in gluten free baked goods like cookies, so check labels carefully if you're very allergic. I think Udi's and Glutino are pretty good about labeling soy, dairy, and nuts in their products.


Maybe so about the food starch, but I was badly gluten-ed by it about 6 months ago and was laid up for days. It was even from a product that had company statement that said something along the lines of "they don't test for gluten but they carefully choose gluten-free ingredients". I'm pretty wary of it. haha
It's like that legislation for marking things as gluten-free at 20ppm of gluten - I react to that level of gluten so, for me, that "gluten-free" isn't realllllly gluten-free.

Good point about the nut flours!! Udi's and Glutino definitely seem to be pretty good about labeling evvvverything. I love them! haha


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## Viranh (Apr 7, 2013)

Maybe there was wheat starch in the modified food starch, but I've also heard of cross contamination in corn. I've reacted to quaker corn grits before. Or a manufacturing slip up. Who knows. 

I pointed it out because there's modified food starch in so many foods, but I have read from several sources that it's safe. I think it's as low risk as anything not made in a dedicated facility can be. I was thinking that eliminating it is even more difficult at first, but you can always be safe and not eat anything packaged. Fresh meats and vegetables, and maybe some rice or quinoa will be GF/DF so long as nothing is pre-seasoned or tenderized or anything like that.


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## Endiku (Dec 6, 2010)

So as a 'last ditch effort' (doctor's words, not mine) my doctor prescribed me to take a new medication called Cholestyramine Oral Suspension USP. Supposively it 'binds' your bile to make it thicker and he's hoping that will encourage my bile to not move so quickly...or in the wrong directions...through my GI tract. That in turn should help with my nausea, burning, the destructiveness to my intestinal and stomach lining, etc.,

Only problem? It makes me BEYOND nauseated. It isn't that it tastes bad, although it is really hard to choke down since it is super gritty/thick and stimulates my gag reflex, but about 10 minutes after taking it I start feeling unbelievably nauseated and my stomach feels like its trying to turn itself inside out. I've taken it three times so far (twice a day) and its awful ._. It causes the nausea for about 5 hours, then I feel ok, but that only leaves me with a few hour frame of time when I'm feeling good. I'm not sure what to do. I want so much for this stuff to work, but how long to I tolerate this until I say "ok, it isn't working and I feel terrible?" My mom says 2 weeks, but that sounds miserable


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## HollyBubbles (Jun 22, 2009)

Endiku said:


> Only problem? It makes me BEYOND nauseated. It isn't that it tastes bad, although it is really hard to choke down since it is super gritty/thick and stimulates my gag reflex, but about 10 minutes after taking it I start feeling unbelievably nauseated and my stomach feels like its trying to turn itself inside out. I've taken it three times so far (twice a day) and its awful ._. It causes the nausea for about 5 hours, then I feel ok, but that only leaves me with a few hour frame of time when I'm feeling good. I'm not sure what to do. I want so much for this stuff to work, but how long to I tolerate this until I say "ok, it isn't working and I feel terrible?" My mom says 2 weeks, but that sounds miserable


Can you maybe call the doctor and either have a chat to him or his nurse on the phone about the nausea? They might have suggestions, or maybe a different medication that could be less likely to cause nausea?
Or maybe he could give you some anti-nausea pills to take before you choke down the gritty horrible stuff?


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## Endiku (Dec 6, 2010)

Good idea. I'll give him a call today.


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## Viranh (Apr 7, 2013)

:-( Hopefully the doctor has a suggestion. You could also take a Benadryl or Dramamine. They both work on nausea. They'll make you tired to begin with, but that side effect goes away after a while as your body gets used to it.


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## EmilyJoy (Dec 30, 2011)

Say, you don't happen to have raw honey available to you? By "raw" I mean local unfiltered course strained honey not heated above 110 degrees (I think perhaps some members on here raise bees, and would know what I am talking about?). Here is an short article that would be worth your time to read. The benefits of raw honey It also tells how it helps with allergies, ulcers, bronchitis, and asthma among others.

The raw honey would help your liver cleanse at night having a 4-1/2 hour sugar instead of the regular 2 hour sugar that your body normally uses, therefore helping your liver cleanse 2x as long as it normally would helping to flush the medicines/toxins from your body and give a boost to help you sleep at night. Something like 1 tsp before you go to bed if you are fairly healthy and around 1Tablespoon if you are sick on meds etc.

Also it has to be raw, if you get anything that isn't it will act the same as regular sugar, and it just might be a healthy way to satisfy your sweet tooth cravings without sacrificing your health. 

My Grandpa has been raising bees since he was four, so we tend to get a lot of honey from him, but I do realize not everyone has it around for them... Anyhow just a thought that I had... You might also want to look into Teramin Clay (for people), Barbs Wellness Home Portal to Information and Products, she has been helpful with her Nutrimin clay to help several of my bovine regain their health, obviously I was dealing on the animal side of things but I do know she deals with helping people too.


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## tempest (Jan 26, 2009)

Hmmm, a friend of mine brought this up one day. She's doing research on the Blood Type diet. And she mentioned that according to her blood type, she is supposed to have a sensitive digestive system and low stomach acidity which means that if her stomach gets upset a base, such as milk, will settle it down. Which she had been using milk for years to settle her stomach down.

I don't know if that helps you any but I guess it couldn't hurt to check to see if there is a certain diet that your body is supposed to be following, it also may explain other bodily reactions. It's a far stretch, I know, but I guess at this point it's worth a look.


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## tempest (Jan 26, 2009)

Although, there is no scientific proof that it really works to benefit the body but, I don't know, it's an idea.


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## Endiku (Dec 6, 2010)

Those are all great suggestions, guys! I hadn't even thought of taking Benadryl. It does make me sort of 'blehhhh' when I take it, but if the side effects go away I can totally power through a week or two of that.

I'll have to research the raw honey. I've seen stands for it occasionally but only during certain parts of the year, so I'd have to figure out how to get a constant supply. 

That's very interesting about the blood type! I think I'm an A but I guess I'll have to double check and try to find out more about that diet.

Also, my mom okayed me to try gluten free for a week, beginning next week. Yay!!!


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## amp23 (Jan 6, 2011)

I hope trying to go gluten free will help make you feel better!


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## EmilyJoy (Dec 30, 2011)

About the honey, Grandpa usually sells it late June- Sept/Oct. Don't know the season for TX though.


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## Endiku (Dec 6, 2010)

That's when I'm used to seeing it, in the early fall. So do I just buy a bunch of jars and take a few tablespoons a day or something?


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## EmilyJoy (Dec 30, 2011)

I would say min. of 1 Tbsp before bed, possibly a tsp in the morning. Just don't go too overboard as too much can make you sick (cups at a crack?). 

The storing part is easy, since the raw stuff will never spoil it doesn't need much attention, but it will sugar. To prevent that take what you will use for the week/month out and put the rest in your freezer. It will get thick like taffy but no worries about the jar breaking as honey doesn't expand that much.

I can't emphasize enough you must get RAW honey, a lot of beekeepers around here will say honey processed at 140 is raw, not so, the health values of honey start fading away at 110 and are _gone_ at 140. Question them as to how they extract it, a lot of them use a pump which requires heat. You will want course strained honey.


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## tempest (Jan 26, 2009)

Endiku, I forgot whether or not you had said you were tested for GERD.

Because I'm reading about what can happen if a persons digestive functions don't work the way they are supposed to and it mentions that the symptoms of GERD don't just include heart burn. They can include hoarseness, trouble swallowing, coughing, gagging, and nausea. Which can lead to more serious symptoms and complications such as weight loss, ulceration, bleeding in your esophagus, anemia, and a higher risk of adenocarcinoma of the esophagus.

It also says that large meals and foods such as chocolate, citrus fruits, caffeinated beverages, fatty and fried foods, onions, spicy foods, garlic, and tomato based foods can increase the reflux in GERD.

And also, how is the gluten free food working for you?


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## tempest (Jan 26, 2009)

Of course this book also talks about ulcers and their lesser known symptoms of nausea, vomiting, loss of appetite, and weight loss.


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## Endiku (Dec 6, 2010)

Yes, I've been tested for and do have GERD.

I was also checked for ulcers, and I don't have any. Thank goodness.

The gluten free diet is ok, I think I've noticed a small difference in my energy level and possibly some of the nausea, but it doesn't seem to be significant unfortunately. I'm going to continue it for just a bit longer to see if it is just taking a while for my system to clear itself, then decide from there.

Other than that we're pretty much back with the "well, if you do have something it doesn't seem like something we can fix" type thing, and my dad isn't willing for me to have any more testing and such done which means I need to wait until I have my own insurance before I can resume my investigation. I'm having a pretty bad week this week though. My hair is falling out a lot more and I've got some really painful mouth ulcers right now that are making eating VERY painful, so I'm sure that has to do with the hair loss. I had just started growing back eyelashes, but those are falling out again too. Poo. The new suspension I'm taking is helping some with the burning though so my weight is fairly stable at the moment, so that's good. I'd be able to eat more if it wasn't for the mouth pain.


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## NorthernMama (Mar 12, 2008)

I haven't posted much, if at all on here, but I've been lurking. I can't imagine your frustration Endiku.

Sometimes when I read your posts here, I think that it sounds like a poison in your system. Your last post made me think of radiation poisoning. Crazy, I know, but that what it reminds me of. Have you ever been around any heavy metals, industrial manufacturing, industrial or hospital cleaning, industrial or commercial burning and/or demolition? Demolition of old buildings at all?


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## Endiku (Dec 6, 2010)

I don't believe so, at least not in the past decade or so. When I was little (ages 1-6) we lived in a really cruddy area of town that had all kinds of contaminations and smog, but I don't think there was a lot of demolition. It was an old area town but it had pretty much just been left to itself; no renovations or anything.

I've had a billion different xrays and such, but as far as I know those don't really cause too much adverse side effects, and most of the xrays I've had have been BECAUSE I'm sick, not before I was.


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## NorthernMama (Mar 12, 2008)

I know, it's crazy. It just sounds so much like an outside, man-made invader. Like what chemo does to people. Or arsenic. That terrible naturally occurring poison that can build up in someone's system over years.

I'll shut up now... I don't think I'm helping.


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## Endiku (Dec 6, 2010)

Its always possible I guess! Pretty much anything is possible at this point. Obviously the doctors can't figure it out xD

How would I know if it was something like an outside toxin? I think I've already had just about every blood test you can imagine.


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## Tracer (Sep 16, 2012)

So have you had your scopes yet? I find it hard to believe that they wouldn't see anything at all - they should at least find some inflammation or scarring.

I still think that you could have some kind of autoimmune disease - it sounds like your body is attacking itself like mad, but NorthernMama has a good point and it'd be interesting to follow it up...


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## NorthernMama (Mar 12, 2008)

Endiku said:


> How would I know if it was something like an outside toxin? I think I've already had just about every blood test you can imagine.


A specific toxin needs to be tested for and in order to do that, there would have to be some idea of what to look for as possibilities. I suppose you could offer up the idea to the doctors so they could think about any toxins that could cause the symptoms you have.


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## totalfreedom (Nov 23, 2009)

Lemme say right off.....I didn't read through all the posts. So if someone else also mentioned what I'm going to say then I hope you will consider it's importance.

Endiku - where to start.....instead of writing out a novel, I'm just going to point you in the direction. Google, youtube, facebook, vimeo....Dr. Robert Morse. There is a facebook fanpage that was created by people who follow his advice. And there are many people on there who were in worse condition than you are in who are now able to live a healthy life.

I could go off on a tangent here, but it seems that your doctors have no clue as to what's going on. It's because, they are only taught to diagnose and medicate....for the most part, they don't heal people, they cover up symptoms. Been there, done that...and I got fed up with allopathic doctors so I gave up on them, and I'm in a much healthier place now because of the choices I made.


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## EmilyJoy (Dec 30, 2011)

^^Hear, hear. "Cover up symptoms" is totally correct. Doctors are great for setting broken bones and emergencies, but for long term sicknesses and for keeping people healthy "they don't know nothin' ".


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## Endiku (Dec 6, 2010)

Yes, I had the scopes last month. They saw a small amount of inflammation in my small intestines but apparently not enough to warrant a diagnosis, and then the extreme amounts of bile that have quite literally turned my entire GI tract yellow. I actually have pictures of what the scopes found if it helps, but I'm not sure whether or not I'm allowed to post them...maybe PM. 

I'll also look into that doctor. I'm curious as to how he can help me through just videos though. Does he have a certain lifestyle that he promotes or something?


Weird thing though. I figured out one thing that helps with SOME of my headaches...and that's salt. It doesn't always work but I guess sometimes my electrolytes/salt are low and that is a factor in my headaches or something, because if I eat a bit of table salt (not a whole lot, maybe 1/2 a tsp) it has gotten rid of my headache within 10 minutes. Its kind of crazy  It doesn't help with all of the headaches and not with migraines, but its something!


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## Darrin (Jul 11, 2011)

I've worked a lot of years in clean rooms (12+ hours) where I have to wear clean room garb and the temperature is set at 70 degrees F. I've always got headaches and only just realized last year that the headaches were caused by dehydration (water is available but not convenient). Drinking Gatorade during my lunch break and maybe a second after work keeps the regular old normal headaches away. Sounds like you might be running into a dehydration issue yourself.


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## Endiku (Dec 6, 2010)

Its possible! So strange though, because I actually drink a LOT of water...way more than the rest of my family does. They drink a cup or two of water a day and sodas, milk, juices, etc., but since I can't drink any of those things I drink at least 8 full cups of water per day- and at least 7 or 8 bottles worth them I'm working outside all day. I drink Gatorade as well (4 cups of it a day right now, because that's what I mix my suspension in) so you would THINK that I wouldn't be dehydrated. 

I'm _always_ craving salt though. That's what gave me the idea of eating the salt by itself in the first place. It doesn't matter how much I drink, what I've been doing, etc., I want salt. Is there such thing as a sodium deficiency? LOL


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## tempest (Jan 26, 2009)

When a person is really dehydrated it's actually a good idea for them to eat salt and drink water. Not a huge amount of salt but a little is okay. What salt does is absorb water and allows you to consume more, it also helps to allow your body to retain water better. Ultimately, you are dehydrating your body in order to hydrate it better. Don't consume too much salt otherwise you will end up dehydrating yourself to the point that you can't keep up in hydrating it and then you'll start to have serious negative side effects.

Over the summer I was doing some high altitude training in the Sierra Nevadas and we went on a hike that ended up being 6 miles more than it was meant to be. We had a lot of heat casualties (some pretty severe) and the Corpsemen would go around and give those heat casualties salt. When they were asked why they were doing that they told us what I said in the paragraph above. And isn't it interesting how a person can actually crave salt? I found out that it kind of tastes like a pixie stick when you're really dehydrated.

A lot of the time, if a person drinks a bunch of water at once it will just go through their body because their body will use what's necessary and then get rid of what was not needed (which is why people will have to use the bathroom a lot not too long afterwards). By consuming some salt, it helps your body retain more of that water. Like I said though, numerous times, don't over consume the salt, as beneficial as it can be, it can be just as detrimental to your health.


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## Endiku (Dec 6, 2010)

Yeah, I have to watch how much salt I do take in because if I crave it, I'm likely to take in more than I should. That makes a LOT of sense with the water though; and explains why when I come back from working outside the first thing I want is something salty to eat.


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## NorthernMama (Mar 12, 2008)

Salt is a tricky thing. If your body actually craves it, you should eat it. But the difficulty is that salt does something funky to our taste buds and pleasure center so you can want it, but not crave it.

Drinking that much water can't possibly be good for you. You must gets lots of exercise going to the bathroom. This whole "drink water to be healthy" binge that society is on was actually started by a marketing promotion from (a) bottled water company(ies). Scientifically, there is little backup for it.

Your specific situation is likely very different though - but is so much water better for you or worse for you than other people??? I wonder... and I have NO idea how to find out, except to try to not drink so much. Maybe after you're done experimenting with the gluten free diet first though. One thing at a time.


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## Endiku (Dec 6, 2010)

That's the weird thing. I don't really need to go to the bathroom more than anyone else that I can tell, and even with drinking as much as I do when I work outside, I VERY rarely need to go while I'm there (which is as long as 10 hours). I figured it was because of the Texas heat/humidity, and that I was just sweating it all out. 

A while back we mentioned how much I drink to the doctors so they checked my liver and kidneys, but they're fine...not sure why else I'd feel like I need to drink all of the time though.

When I don't drink the amount that I do, I feel awful, I get worse headaches, feel lethargic, etc., so I guess I always figured that's what my body needed. It probably has to do with the fact that whatever is going on with my body causes the near-constant diahhrea too- and that dehydrates me fast if I don't drink a lot.


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## NorthernMama (Mar 12, 2008)

Weird with the water. I wonder where it's all going? Sounds like you do need it, and not just for the diarrhea. What is your body's potassium level like?


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## Endiku (Dec 6, 2010)

I'm not sure; I'd have to ask. Likely low though...doesn't potassium help with bruising/muscle cramping? I bruise so easily that its not even funny xD


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## tempest (Jan 26, 2009)

Yes, potassium does help with muscle cramping. If you frequently get Charlie Horses, it's either a sign of dehydration and/or a potassium deficiency. I was just using that as an example.

What potassium does is help with the electrical stimulation between your muscle and you brain. Essentially, it ensures healthy neurons. If there is a bad neuron connection it can cause muscle cramping and spasm (which are Charlie Horses).

Not saying you were having Charlie Horses or anything but in a nutshell that's what potassium does. In the link below from WebMD it states that people with health disorders that affect the digestive system (such as Crohn's disease) are more prone to potassium deficiencies.

Potassium Supplements: Benefits, Potassium Deficiency, Dosage, and More

By the way, how did that gluten free diet go?


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## tempest (Jan 26, 2009)

Endiku, did something big happen just before you started high school? I'm looked back at the beginning of this thread and you said that you were fine until you started high school?

Is there anything that you can think of that may have triggered all of this? And did it happen suddenly or gradually?

Aside from that, maybe you've been overdosing on some vitamins. Although I don't know why you wouldn't be having worse side-effects if you had been overdosing since starting high school. Acute hypervitaminosis A, is what I'm thinking of. Except for the hair loss, you don't seem to have the symptoms of Chronic hypervitaminosis A.


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## Endiku (Dec 6, 2010)

Yep, it all started right when I went into high school...pretty suddenly, too. It wasn't a one day I was perfect, the next day ALL of the symptoms were there, but they all started coming on very fast...within a few weeks of each other. The hair/eyelash loss is the only real 'new' thing, everything else has been happening since then with varied severity. 

I really can't think of anything hugely significant that happened though. I've lived in this area since I was 6 or so, my diet didn't change, and I didn't go through any huge trauma or anything. I think I started puberty at the end of my 8th grade year though...maybe that has something to do with it? 

If I am overdosing on a vitamin, I'm not sure where I'm getting it. At the moment I'm not even taking a daily vitamin. I WAS taking a very large amount of magnesium and riboflavin as a last ditch effort to control my migraines, but that only lasted from about March of this year until May when I quit because it wasn't helping the migraines at it was only causing other weird symptoms that indicated overdose of those particular vitamins.

I guess one good thing right now is that the cholestromine(sp?) suspension I'm taking right now is helping me with my appetite and decreasing the diahhrea, but if I take too much/too little of it, I vomit- and I have to take it at a certain time between the times I take my other pills for it to be affective. Kind of annoying since I have to take it 4 times a day, but at least its helping a little. I've put a little weight back on in the past few weeks


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## tempest (Jan 26, 2009)

You don't have to be taking a vitamin supplement. Americans consume so much food that contains large quantities of Vitamin A. In America, Vitamin A deficiencies are almost nonexistent, in fact, it's more common for an American to get an overdosage of Vitamin A.

Puberty might have triggered it. I'm not sure why though. Maybe the sudden influx of extra hormones? And congrats on the weight gain!


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## LovesMyDunnBoy (Aug 11, 2011)

Endiku and I have some similar symptoms, although I think her's a more severe than mine.

I also have migranes, tons of GI issues, joint pain, heart palpitations and lots of other things.

Endiku, I just wanted to share with you what my gastroenterologist has said. They took out my gallbladder on July 11th this year, and I'm still having lots of abdominal pain and nausea. It feels like I've been kicked in the stomach. So she ordered a blood panel to check pretty much every organ in my upper abdomen (pancreas, appendix, spleen I think..) And an abdominal CT scan to check everything they couldn't check with my upper and lower scope. Have they done anything similar for you? Maybe it's something to look into. I'm also having pretty good success with Topamax at the moment for migranes, although it could be luck.
_Posted via Mobile Device_


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## LovesMyDunnBoy (Aug 11, 2011)

Endiku and I have some similar symptoms, although I think her's a more severe than mine.

I also have migranes, tons of GI issues, joint pain, heart palpitations and lots of other things.

Endiku, I just wanted to share with you what my gastroenterologist has said. They took out my gallbladder on July 11th this year, and I'm still having lots of abdominal pain and nausea. It feels like I've been kicked in the stomach. So she ordered a blood panel to check pretty much every organ in my upper abdomen (pancreas, appendix, spleen I think..) And an abdominal CT scan to check everything they couldn't check with my upper and lower scope. Have they done anything similar for you? Maybe it's something to look into. I'm also having pretty good success with Topamax at the moment for migranes, although it could be luck.
_Posted via Mobile Device_


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## Endiku (Dec 6, 2010)

^ and even weirder, LMDB is the same general age as me, in the same general location (ish...). Neither of us have had a good answer given to us by our doctors. Strange much?

ugh, I feel you Loves. They told me the GB surgery would be nothing, but it took me weeks to feel better. I didn't ride for 10 weeks after that surgery, and even then it hurt like crazy. Rebuilding all of that muscle that gets stretched/torn is torture. 

I had a GI tract CT scan back before my gallbladder came out, a HYDA scan, a barium test, and an ultrasound done on all of my major organs and they said they looked fine. I have blood panels done, I kid you not, at least once every 6 weeks or so just to see if they can catch something off. So far the only thing that has ever come back off was a slightly low white blood cell count (nothing huge though, and it righted itself the next time they checked), high cholesterol, and the iron deficiency.

Did they find anything alarming with you? Also, have you noticed any changes in what you can eat (good or bad) since your surgery? I realize it hasn't been long but this was the same time frame in which I started having all of those weirds 'intolerances' to different foods.

Tempest- I didn't think about that. Is there a way to check for an excess amount of vitamin A? I'm assuming blood work? (Good thing I'm not afraid of needles...LOL)


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## NorthernMama (Mar 12, 2008)

Endiku & Loves -- I wonder if it would benefit both of you for your doctors to exchange files/info/experiences.


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## LovesMyDunnBoy (Aug 11, 2011)

I've always been allergic to most fruit and pears were always one I could eat. Well I've apparently developed an allergy to that when I was fine before. Maybe the gallbladder? I'm not sure. I can't eat Subway's Italian Herb And Cheese bread anymore because it makes me sick, along with the majority of fast food now. So I have had a few changes in what I can eat.

As far as bloodwork, they haven't done the most recent panel I was talking about yet but in the past I've had high DHEA (type of testosterone) and I've also had high cholesterol like you. Oh and low vitamin C.
_Posted via Mobile Device_


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## LovesMyDunnBoy (Aug 11, 2011)

NorthernMama said:


> Endiku & Loves -- I wonder if it would benefit both of you for your doctors to exchange files/info/experiences.


That is a good idea. I wish I had another GI doctor in my area.
_Posted via Mobile Device_


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## totalfreedom (Nov 23, 2009)

Have you guys looked up Dr. Morse yet? Maybe get on youtube and search for, The Great Lymphatic System.

I'm going and try to avoid continuing to push this information out here, because I know that not everyone is going to accept it without resistance. But I could run down through your list of symptoms and tell you what's happening and why. But as I said earlier...."I could write a novel", and I don't wanna.  Not to get too down on allopathic doctors...but the reason they have no clue as to what's going on is simply because....they have no clue. They aren't taught how to heal the body, the majority of their teaching is written by the pharmaceutical industry. So basically they are taught to diagnose and medicate to see if they can cover up symptoms for a little while until another one pops up....then they diagnose and medicate again....until eventually one day you wake up and your taking 20 different medications. And I'm only posting again because I know how bad it sucks to feel terrible all the time as it continues to get worse...and the doctors just keep saying...."hmm, well try these pills".

If you follow the teachings of Dr. Morse I can guarantee that you will begin to feel better. And there are many others that have taught this throughout the years. I only mentioned him because he has a LOT of information out there with a competent group of people on FB helping one another out who have been in worse condition than what I've seen commented on here.

And I've heard so many people say, "I would rather die than change my diet..." And sadly I've witnessed this over and over. But even worse than that is watching all those people suffer as they approach ever closer to that final doorstep. And I just had to post one more time because it realllly sucks to feel terrible all the time. Though, I try to avoid posting a lot about health and diet simply because, many times people will jump out of the woodwork to flame me when they've never even walked the path.

There's only one route to health and there are no shortcuts. You simply have to decide if it is worth it to eat certain foods and continue to suffer and get sicker.....or learn how to improve your diet and eat what the body is designed for and feel fully alive and healthy. That which heals you will also make you stronger. 

"Let food be thy medicine, and medicine be thy food." - Hippocrates

Now I'm gonna jump back into the shadows before I get flaming arrows hurled in my direction. LOL


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## tempest (Jan 26, 2009)

Totalfreedom, why are you worried about getting flamed? I think I may have missed your reasoning somewhere.

And yes, through blood work. Although, now that I'm looking at this overdosing thing a little more and basing it on how long this stuff has been going on with you. If you did have an overdosage of Vitamin A, you'd probably be dead by now. I'm not so sure anymore. I'm running out of possible ideas.


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## LovesMyDunnBoy (Aug 11, 2011)

tempest said:


> I'm running out of possible ideas.


Join the club with my doctors and family, as well as Endiku's I'm sure! Maybe boucing our ideas off each other could help.
_Posted via Mobile Device_


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## Endiku (Dec 6, 2010)

TotalFreedom- no flaming here...I'm pretty much done with allopathic doctors. I haven't checked that guy out yet, but I'll do it! I just got busy and forgot, I'm not blatantly ignoring your suggestions, I promise. Someone could probably suggest that I eat cow dung milk shakes (please don't) and I'd do it (ok, maybe not...) at this point. 

Tempest- so either I'm incredibly resilient (sp?) or not ODing on Vitamin A. My guess is the latter, since nothing about me screams 'enduring.' LOL.


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## Wallaby (Jul 13, 2008)

Another thought: have you ever just had straight allergy testing done? Or seen an allergist?


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## Endiku (Dec 6, 2010)

I haven't had the allergy ****** done, no. Should I try that?


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## Viranh (Apr 7, 2013)

Your symptoms fit what I know about autoimmune diseases. I have several, and I have found that Dr.'s like to treat them as if they are all individual problems rather than from the same source. They're all caused by a fundamental malfunction of the immune system, and there is good research showing that if you have one autoimmune disorder, you'll get others. However, they are still all treated individually rather than treating the whole system. That makes me furious. I have heard of many people who managed to treat with careful diet and exercise. This doesn't make them go away, but reduces symptoms. 

I am mostly treated with a gluten and dairy free diet, but that's because I have Celiac disease, so avoiding those make my immune system less active and moderates my other symptoms. I know a healthy, whole food diet and exercise help, but I haven't got the time and money to keep up with it always. I still have migraines and monthly lady problems, but not as bad as before. 

I think that a natural doctor willing to listen to you and treat you as a whole person might be able to help. Until we have some serious advances in medicine, there are not any cures for autoimmune diseases. I think they can be managed if the whole person is treated. It's just a matter of finding what works for you. Even if you don't have an autoimmune disorder, I think treating the whole person rather than several sets of symptoms might be helpful. Above all that, naturopaths tend to actually listen to their patients.


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## LovesMyDunnBoy (Aug 11, 2011)

Have you ever thought about a type of parasite/bacteria? It seems like they can cause a variety of symptoms. I don't mean like the tapeworm kind, there are types that attack red blood cells. Or maybe Lyme Disease? I also suspect an autoimmune disorder with myself, I wouldn't doubt if that's your problem too. Unfortunately, it seems like these are the things that are hard to diagnose. Most parasite/bacteria type cases are diagnosed when the person ends up in the ER with some kind of attack. 

I hope you find what's wrong!
_Posted via Mobile Device_


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## Endiku (Dec 6, 2010)

We had considered a parasite and I think they checked for them back a year ago or so, but that doesn't mean I don't have one. I don't even remember what they did to check.

I really do want to find a naturopath doctor. It sounds like a good next option. I think at this point though, my parents are done with paying my bills since nothing is being found, so I'm going to have to wait until I can pay for it myself.


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## Wallaby (Jul 13, 2008)

Endiku said:


> I haven't had the allergy ****** done, no. Should I try that?


That might be something to consider, if it's at all possible.

My mom is deathly allergic to, what feels like, 'everything' under the sun [all meat except for turkey, all dairy products, nuts, most fish, most kinds of beans, eggs, many types of vegetable, etc, not to mention a MYRIAD of environmental allergies - I'm pretty sure she's a Celiac too but she refuses to try the diet...not that I really blame her since being a Celiac AND having those other limitations would make eating next to impossible]. 
Back when she was eating those things [before I was born] she had alllll kinds of physical manifestations - anorexically skinny while eating a TON, severe severe eczema+other skin stuff, violent mood swings centered around meal times, she was constantly sleepy, and [in her case, obviously this wouldn't have come up for you! haha] she had had 5 unexplained miscarriages in a row - just to name a few.

Her doctors couldn't figure it out and the only way anything got discovered was she got the allergy picks, reacted to pretty much everything they pricked her with, doctors freaked out :lol:, and she went on a serious elimination diet where she only ate potatoes for a month [a predetermined "safe" food], started getting better, then began adding in foods that she hadn't reacted to in the tests - one at a time, one a week.
About 6 months later she got pregnant with me and things went nuts again [just because her doctors had her eat things she was allergic to, to make sure I got proper nutrition]...but I came out mostly fine! haha

Anyway, she still has mild "issues" but they're survivable issues and she feels pretty good on a daily basis. 
And, at least in her case, she has so many sensitivities that her whole 'thing' is actually considered to be an auto-immune disease in and of itself. 

Just a thought. :hug:
Have you ever kept a food journal?
Is there a time of year when you feel better? Do you feel better statistically inside or outside? Or the same everywhere? Better or worse at home vs somewhere religiously cleaned, like that hospital you went to?


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## Endiku (Dec 6, 2010)

Wow, that's insane Wallaby! My mom had that done due to severe asthma, and she was allergic to just about everything (except foods thankfully) as well. Animals, pollens, pretty much all trees, dust... the doctors flipped out when they saw how swollen her back was!

I'll definitely mention it to my parents and see if they're willing to give it a shot (HAHAHA, literally...) Thanks for the suggestion!


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## Darrin (Jul 11, 2011)

Endiku said:


> Wow, that's insane Wallaby! My mom had that done due to severe asthma, and she was allergic to just about everything (except foods thankfully) as well. Animals, pollens, pretty much all trees, dust... the doctors flipped out when they saw how swollen her back was!
> 
> I'll definitely mention it to my parents and see if they're willing to give it a shot (HAHAHA, literally...) Thanks for the suggestion!


Uhoh, you do know that allergies are often genetic? I have all the same allergies as my dad plus a couple more. Might be getting close to finding out what your problem is.


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## Endiku (Dec 6, 2010)

Are they? o.o I didn't know that. Even more reason to start investigating this further...you just might be on to something guys!


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## NorthernMama (Mar 12, 2008)

You know, if your parents aren't able/willing to pay for more tests, how would it go for you if you made your own elimination diet? Start with just one thing and water, and only spice is salt (given the earlier discussion). Rice is a good staple, or potatoes as suggested. I wonder if there is information about a very simple, basic diet on the internet somewhere. 

My concern would be if this would make things worse since no one knows what's causing all this... or will it provide some answers? Tough decision unless you have some educated support to help you decide whether/how to do something like this.


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## Endiku (Dec 6, 2010)

Good points NorthernMama, I'd be willing to try an elimination diet if it didn't do any harm to me, but how do I know?


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## NorthernMama (Mar 12, 2008)

Ya, that's the tough part. For someone that has no issues to try it, no big deal, but for you... I dunno... Can you run it by your doctor next time you have an appointment? Or will the idea get shut down before you even have a chance to talk about it? Maybe there is a nutritionist on the local health and/or food council. We have one in a nearby town.

I tried to find something on the internet, but didn't have much luck. Other than finding out that rice is the basis of many diets (gee, surprise)... There are minimalist diets out there. Beans, rice, fish, seaweed... I forget what else. I think there was a page about 7 foods to survive on, or something like that.


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## Endiku (Dec 6, 2010)

My GI doctor would probably shut it down the second I mentioned it, but I can totally research a nutritionist and see about contacting them. I'm sure _someone_ would be willing to talk to me, right? 

Beans, rice, fish, and seaweed sounds like the diet of my ancestors xD I'm partially Vietnamese, and that's what a large portion of my family from Vietnam eats. Maybe I should just become a die-hard traditionalist!

I'm not going to lie though, last time they prepared me some food for a 'traditional nam birthday party dinner' I nearly died. So.Much.Raw.Meat ._.


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## totalfreedom (Nov 23, 2009)

Okay...I know I said I would quit trying to push this information out here.....but.....I lied. 

The reason I thought I would be flamed is because.....in general I have received lots of resistance when I begin to mention that people need to look to their eating habits and let go of their medicating doctors to improve their health. I wasn't trying to imply of anyone in particular....just in general, someone usually pops out of the woodwork and begins slandering what I've said. And in every instance it's someone that's never even experienced what I've recommended.

Endiku - The reason you crave so much salt is because your adrenal glands are weak. And so are your kidneys. Craving salt is a very large hint that your adrenal glands are weak. And the reason you crave so much water is because your body is trying to dilute the salt so that you don't poison yourself. I think you also said that you get major headaches if you omit salt??..?? It's because your body has gone to great lengths to encase that excess salt in your system so that, again, you don't poison yourself....and when you remove the salt from your diet, all the excess which has been trapped and encased in your body begins to be released. And it causes pain as you're body is quickly trying to get rid of it, but it has a hard time getting rid of all that excess because the pathways for eliminating them are.....for lack of a better word....clogged. So now that excess material begins to re-circulate through your system, causing you pain as your body once again works to protect itself.

If you want to get better you need to only put things into your body that which it has been designed for. In one short answer to what that would be, from my current understanding and experience.....fruit. Lots of fruit with some bitter greens, herbs and very small amounts of nuts, seeds, and fats. But to really get your body back online and functioning again stick with the juicy fruit at first. Fruit will begin to break down your clogged up lymph system and get it functioning again. It will get your kidneys to begin working again. It has good fiber for your GI tract. And speaking of that..... https://www.youtube.com/watch?v=MVyRwm_v6xs Though I didn't want to recommend fasting from where you currently are because it would likely be an unpleasent experience. If you stick to the fruit for a short while....then you can consider going on a fast. And expect there to be ups and downs.....you'll feel very good some times, but other times as your body begins to release all those trapped up poisons in your body....you will feel terrible. The best thing to do is rest in such instances until your body passes em.

Here's one more person who IMO, you should study. Arnold Ehret.
These three would be my current suggestion.
Dr. Robert Morse
Arnold Ehret
Loren Lockman

And I'm sure that from your position it's hard to just take a strangers word....so I suggest you study, study, study. And it's probably especially tough when you hear so many different opinions. But I'm speaking to you from personal experience and my current understanding through researching others who are on the same path. I studied health for over six years.....diligently. I spent roughly 30 hours a week studying health and healing the body....for over six years. After all those years of studying and experiencing what I had studied, I came to one simple answer, and let go of everything else......eat what the body is designed to eat....and allow it to rest, via fasting periodically to remove the excess. Basically, nourish it properly, and quite trying to stuff this or that into it trying to remedy anything, and allow it to do what it already knows what to do.....heal.


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## Endiku (Dec 6, 2010)

Totalfreedom- I appreciate all of your detailed replied to this thread. Thank you for taking the time to consider my 'case' and recommend to me what you know!

I love the idea of getting back to what humans were originally created to eat, but what about in cases such as mine, where fruits are actually one of the things I avoid the most because of how sick I feel when I eat them? I can sometimes handle a greenish banana because they're still very basic, and if I'm careful I can eat a few pieces of apple or grapes, but all other fruits make me feel absolutely awful. Oranges, pineapples, mangoes, and strawberries are the worst- but they all cause my bile to intensify and reflux to get really bad. I have no clue why. I also can't eat nuts at all because I'm just plain allergic to them. I throw up, cough, and shake when I eat them. I do eat a lot of unprocessed seeds (pumpkin and sunflower are my favorite), and I can handle small bits of certain herbs and fat, but if I eat too much of either one, my body fight back because my gallbladder was (stupidly) removed last year. What would you suggest? Just power through eating that kind of thing anyways (except the nuts... It is definitely NOT a good idea for me to eat those if they don't even stay down) with the assumption that my body will realize its normal to eat those things? Or avoid those too, and go a different route? What about meats, eggs, and vegetables? I eat a lot of eggs (mostly the whites since my cholesterol is naturally high) and vegetables since they don't seem to bother my stomach a lot. 

Also, would that kind of diet require me to quit all of my medications? I'm not saying I wouldn't try it, because I actually might, I'm just trying to figure out how big of a thing we're talking about.

Your explanation about the salt and water is very interesting though. Sounds like I'm actually hurting myself more by giving myself what I 'feel' like I need...hmmm. So should I be only allowing myself to take in so much water and salt per day, even if I feel bad if I don't drink more? It would eventually stop hurting, right?


I'm very interested if you can't tell. I'm just not sure how much of this I can do being that I am still a minor and under my parents authority.


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## totalfreedom (Nov 23, 2009)

The likely reason that the fruits are causing you pains is because it's the cleanest thing you can eat. Especially when it's ripe and grown properly. When we go from eating processed foods our whole lives to eating the cleanest things for our bodies.....we don't feel well because we are no longer putting the processed stuff in. And the body finally jumps on the opportunity to begin cleaning house. But the issue arises when the body doesn't have enough clear pathways to eliminate the stored excess, so all the released accumulations begin to circulate through the blood. Then the body goes back into overdrive to protect itself. This is where those pains come from when we are cleansing. If you want more insight or understanding on this process then you could study rehab clinics and why people go through withdrawals.

I would recommend a transition diet if it's currently difficult for you to eat much fruit. Ehret and Morse talk about this a bit. Perhaps eating fruit during the morning and as far into the day as possible, then in the evening eat steamed veggies. And I will admit.....it can be a little unpleasent for a short while. For me I had a few days of not feeling so well then days of feeling great, and this continued for a few weeks. But the days of feeling great kept growing and the days of feeling unpleasent quickly became less and went away. The harder you cleanse your body by eating cleaner and cleaner the quicker and more extreme your body will.."detox". So you can always slow that process back down with some cooked food.....sometimes it's things such as steamed veggies or simple salads that will work. But there are also some that when they reach a place of pain that they just can't stand, they will eat a little bit of processed food to practically halt the body from cleansing itself and it will make the pains stop. A few weeks ago someone on the fb page tore into a bag of chips because her headaches were too much for her. In my case I've even used burritos. :grin: LOL

I would also recommend staying away from the nuts, "not that you need anyone to tell you that your body doesn't agree with them". The body is already overburdened from an excess of protein consumption in our society and it's the last thing it needs right now in the majority of situations.

As far as eating fruit....do you know of any that do currently agree with you? Watermelon would be great, so would dark grapes. Morse talks about those two a LOT, and it's because they cleanse very well. And for the most part it's currently pretty easy to find some at that are ripe....well I guess if you live in the northern hemisphere anyway. The watermelon is great on the kidneys and the dark grapes are very good for the lymphatic system. And when eating fruit, make it a point to try and select what is currently ripe and in season.

As far as the salt....yes you are correct. Though I wouldn't intentionally limit your daily water. Drink what you desire.

If you want more specific help from people with WAY more experience than I have, then contact Dr. Morse's office. The last I heard he was very busy helping people with intense sicknesses so you may not talk directly with him. And to be honest I don't know if it will cost money or not. Though you can always email him of your situation and I'll bet, that he will do a video response to you. You can also get on fb and look for Dr. Morse fan club....there are many people on there who are very knowledgeable that have gone through some very tough times who are great when you need some insight and support. And I will admit....my knowledge is limited to my situation and the things I've remembered which I felt were important.


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## tempest (Jan 26, 2009)

The only thing I'm going to disagree with you on in that last post is the amount of protein in nuts. Sadly, even though there is protein in nuts, it's not a significant amount and it's not the purest and most healthy way to get it.

That's all though. You bring up some very interesting information.


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## EmilyJoy (Dec 30, 2011)

^^ I would recommenced not eating store bought fruits if at all possible. The reason why is my brother gets headaches from eating store-bought apples, but not from apples fresh from the tree. Our rabbits refuse to eat store-bought apples, but they will eat apples from the tree so greedily they have slobber running from their mouth. Mom thinks the apples from the store (and possibly other fruits) are sprayed with stuff to make them ripe and are waxed to make them keep longer. Ever put a fresh apple along side a store bought apple? Which one do you suppose spoiled the fastest?

And also I would try to get some (cooked...)meat into you, our bodies were made for it. Possibly you might want to eat more fish, because of your background, but I defiently would not omit meat, no matter what the fads are.


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## Darrin (Jul 11, 2011)

EmilyJoy said:


> ^^ I would recommenced not eating store bought fruits if at all possible. The reason why is my brother gets headaches from eating store-bought apples, but not from apples fresh from the tree. Our rabbits refuse to eat store-bought apples, but they will eat apples from the tree so greedily they have slobber running from their mouth. Mom thinks the apples from the store (and possibly other fruits) are sprayed with stuff to make them ripe and are waxed to make them keep longer. Ever put a fresh apple along side a store bought apple? Which one do you suppose spoiled the fastest?
> 
> And also I would try to get some (cooked...)meat into you, our bodies were made for it. Possibly you might want to eat more fish, because of your background, but I defiently would not omit meat, no matter what the fads are.


My dad doesn't get a headache but store bought apples do upset his stomach. What we found out is they coat apples with a protective coating prior to shipping and that coating is what his body doesn't like. Wash that coating off prior to eating and I bet the problem will go away.


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## totalfreedom (Nov 23, 2009)

EmilyJoy said:


> ^^ I would recommenced not eating store bought fruits if at all possible. The reason why is my brother gets headaches from eating store-bought apples, but not from apples fresh from the tree. Our rabbits refuse to eat store-bought apples, but they will eat apples from the tree so greedily they have slobber running from their mouth. Mom thinks the apples from the store (and possibly other fruits) are sprayed with stuff to make them ripe and are waxed to make them keep longer. Ever put a fresh apple along side a store bought apple? Which one do you suppose spoiled the fastest?



I also specifically avoid store apples for just this very reason. I've heard that many times the apples are picked under ripe and they will store them for months on end in warehouse fridge's. I bought some apples from the store last year....and I saved a couple of them, until about a month ago when I tossed em into my compost heap. They still hadn't gone overly mushy or sour. They definitely wax them and spray them with chemicals. To get even more detailed in this story.....I purchased those apples in early spring....last year....that was roughly 16 months. And who knows when they were actually picked and how long they were stored for. :shock:


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## EmilyJoy (Dec 30, 2011)

^^Maybe peeling them would help? I still say buy locally grown apples if at all possible. Also I would highly recommenced inter-library loaning a book by Sally Fallon called, "Nourishing Traditions; The Cookbook that Challenges Politically Correct Nutrition and Diet Dictocrats." Also are you on any kind of probiotics? They help get the gut bacteria going again.


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## Endiku (Dec 6, 2010)

ugh, just lost my whole post.

You make a very good point and with some more research I think I really would like to try to do that. Being healthy without any more surgeries, guessing games, and symptom-masking sounds wonderful. I think I would have to do it slowly though, since, as you said- the withdrawal period can be terrible. And if the saltless headaches are any indication of the pain...it will be terrible for a while. Maybe if I do it slowly though, I'll be able to do it without having any lying-on-the-floor-I'm-going-to-die days. I honestly just can't afford any days like that between my job, two horses (completely self care boarding), family, college/high school, and other teenaged things xD 

Its something I think my parents would have to really think on and agree to, though, because at least in my area, organic home-grown foods are SO expensive. Everything we eat is walmart, H-E-B, Kroger type quality, and I shudder when I think about what is in most of it...especially the meat. That's actually why I avoid most meat at the moment. I eat deer that one of my friend kills (I buy it off of him) every hunting season, and I'm forced to eat the processed chicken my mom buys, but that's about it. I love meat, but I don't love the junk that the meat is fed and injected with. The eggs I eat are farm-fresh from the place where I board my horses, so they aren't a problem. The chickens are fed a natural diet and are very healthy/forage for themselves mostly. The fruit though...again, all Wal-Mart, HEB stuff. No wonder it makes me feel sick...

I'm going to look more into this and bring it up as an option to my parents. It will cost a lot more and be a lot more work, but I'm old enough to prepare my own meals separately so maybe they'll agree. If not, its something I'll try when I move out, if nothing else.


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## EmilyJoy (Dec 30, 2011)

^^The fresh eggs are a way+. Deer meat is a great option as well.


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