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New To Forum- My Issues, Getting A Biopsie...


Cathou

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Cathou Newbie

Hi everyone,

I'm so glad to have found this forum! I've been feeling like a hypochondriac because I'm constantly talking about how bad I feel around co-workers and hubby. I can't remember when it all started but I'd say in the last 2 years... but gradually until there was cause for concern in the past 6 months.

I have food allergies and the worst offender is WHEAT! I have this condition called "Exercise Induced Anaphylaxis" which is most likely food dependent and triggered by foods that I'm intolerant (or allergic) to. So I have to carry an epipen with me at all times. The symptoms I get when this happens are: Hives, swelling of the face and difficulty breathing (feels like asthma). Anyway, since the allergy test diagnosed the wheat allergy (about 2 yrs. ago) I continued eating wheat not thinking that it could also be the culprit of other issues I have.

For the past 6 months, I've been bloated 24/7 and look like I'm 5 months pregnant. I'm either constipated or have diarrhea. Have difficulty digesting all the time but also hungry all the time! Although I exercise 4-5 days a week, I don't lose weight. I started reading on gluten and celiac and feel like if I don't have Celiac, then I MUST have some kind of intolerance.

Went to see a GI 2 weeks ago, she and my general doctor both believe I have IBS but the GI has scheduled an endoscopy right away for end of March. I had stopped eating Gluten last month to see if it helped my situation (which I think it did) but of course, she put me back on it for the test. Now I'm worse than ever (the bloating) and I can't wait to do the biopsy so that I can quit eating Gluten again. On my 3 weeks off gluten, my bloating diminished - although it was still there - and I actually lost a few pounds. I really feel it was helping... I also think I might be lactose intolerant... The GI told me that a good test I can do at home is drink 3 glasses of cow's milk and that if I'm LI, I'll have cramps and feel really bad. I haven't done it yet... She suggested that I start using fiber supplements


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    • NoriTori
      @Scott Adams No one said anything about eating gluten consistently until testing, the appointment was scheduled and an address was given. I don't even have access to the results as it stands. I was just told "everything looks fine, but slight irritation." I don't know if they took a biopsy because I have no access to the results. I don't know how many samples they took (I recently learned they're supposed to take more than one), I don't know what things looked like internally, it was just word of mouth and I didn't know any better to pry and get copies of everything. And I know! I also have chronic Anemia, never truly resolved UNTIL I went gluten free, and low vitamin D (fairly normal in black community), and low creatine (also resolved with gluten free diet). I plan to request a new dermatologist! As well as a referral to Gastro. Food/symptom diary is a great idea though. I have no way of cooking as it stands, so even just the basics wouldn't work for me.
    • trents
      @NoriTori, "gluten intolerance" is a general term that can refer to either celiac disease or NCGS. NCGS is often referred to as "gluten sensitivity" for short. Though, admittedly, there is still a great deal of inconsistency in the use of terms by the general public.
    • NoriTori
      @trents A gluten intolerance is a real possibility! I never ruled it out, but am keen on finding out the EXACT cause. I'd want testing done again to be sure it's not celiac, or SIBO (which I've considered) or other digestive disorder. Celiac seems the most pertinent considering its implications.
    • sillyac58
      Thanks so much Scott. I would be incredibly grateful to the gluten gods if eliminating oats was the magic cure. In the meantime, it's nice to have moral support! 
    • trents
      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
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