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Don't Know What It Could Be Then?

4 posts in this topic

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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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.


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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 :(


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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


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    • Already had that looking on experience and in the end had to leave the room as it was unbearable just sitting there with people laughing at me not being able to eat, yup people are cruel and really show their colours at times like this. Tbh based on the reactions I've had from people my age so far the kissing thing will be irrelevant as no one will stick around to get that far. Since the diagnosis whenever the gluten stuff has come up I've been belittled and made the butt of jokes. Then even people who previously were OK with it started jumping on the bandwagon too. Seems like the alternative to the "bad ones" is no one, which is even worse @GFinDC it's the time thing that's really getting me down right now. Feel like I've lost out so much already and the thought of losing another year or two to this is driving me crazy, especially when I see others my age making the most of their lives and I know with this I can't do the same.  I'm exactly one of those people you described, never been interested in cooking and vegetarian too which rules out this paleo diet everyone seems to use as gut healing. Just adds to the feeling of being lost in all this and once I close the forum window I'm on my own. Still wondering if to do those Cyrex tests to find out early on which other foods may be problematic. Part of me isn't convinced they're scientifically proven enough to be useful but then others seem to have had useful result. Trouble is it's not cheap and already been drained money-wise by these private hospital visits so have to pick the treatments wisely...
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