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Don't Know What It Could Be Then?


KMMO320

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KMMO320 Contributor

I posted a few days ago about a possible yeast problem...

SInce April of this year, I have been poked and prodded by 4 different doctors, racked up thousands in medical bills and just been sick for what seems, forever. Since 1997, I have been diagnosed with "IBS" and I just lived with it until I started feeling other things like migranes and dizziness, that is where the new drs came in. Initially, I was deficient in vitamin D and Iron, which is why they suspected Celiac. ALl tests came back negative, but with my IGA deficiency, IBS, immune problems, thyroid and all my other symptoms, my Dr was willing enough to say I had Celiac DIsease and to go gluten-free. Prior to the "diagnosis" they put me on vitamin supplements and before even going gluten-free, my levels were all back up.

Well, It has been 2 months, and while my IBS has seemed to settle (FINALLY!), everything else is the same. Nausea, dizziness, shortness of breath, heart palpatations, foggy head. Always after I eat, and it can happen randomly. Doesnt always happen WHEN I eat, but when it does, it is after I eat. Could be an apple, could be a gluten-free sandwich, could be some chips, could be scrambled eggs. I just never know.

I thought it was yeast, then I thought it was sugar, caffeine, salt, dairy.

So, 2 days ago, after being exclusively gluten free, I started eating it again to see what happened. The first day, I ate a bagel and a muffin. Nothing happened. Yesterday, I ate crackers and cheese. Nothing happened. this morning, I ate a muffin. Nothing. I am waiting and waiting....but I have been feeling fine.

Because my tests were all negative anyway, and my vitamin levels went back up on supplements before even going gluten-free and because I am not having reactions, I am thinking maybe I do not have celiac disease after all. I can't deal with any more doctors or medical bills, and I am thinking it is time for experimentation. I just don't even know how to begin. There is no denying that going gluten-free seemed to help my digestive system, I just want all of the other problems to stop too :(


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SMDBill Apprentice

I wonder if you could have an intestinal issue that could be caused by sugar, other grains, or a combination of celiac and something else? However, when you ate foods with gluten and had no reaction, and based on the fact that you were diagnosed based on deficiencies rather than blood or biopsy confirmation, maybe you don't have celiac. That's a pretty good challenge to eat that stuff and the fact that it didn't make you sick-er is really a positive because celiac causes damage. Biggest concern to me would be if you had an internal reaction to gluten but didn't feel it. That would be troubling because you'd never really know when you were glutened.

It's troubling for sure. From the surface of it and with medical tests unable to confirm celiac, it does sound a bit like an allergy to something rather than intolerance or celiac disease. Have you begun to isolate foods and reintroduce them slowly to see what causes a reaction? You'd need a journal to accurately track what you ate and what the ingredients were, but that could possibly give you some insight without further medical bills.

KMMO320 Contributor

Thank you, no I havent begun to isolate, but I think that is my next step. My primary was so sure it was Celiac that I guess I jumped on that idea too because it would be so easy to explain. I think I have a big process ahead of me :(

GFinDC Veteran

Please read this article and the study linked in it. This new research (2012) shows 2 possible additional gluten related conditions exist in addition to celiac disease. They are newly identified and don't show up on celiac disease testing. The symptoms can be very similar though.

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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