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Minimum gluten for challenge for EGD biopsy


Katerific

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Katerific Explorer

My EGD is in 2 1/2 weeks.  Since I am super-sensitive to gluten I am wondering if there is a minimum amount of gluten that would make the biopsy positive.  I tested 1/4 tsp of vital wheat gluten and was very ill with vomiting that day and then felt really crummy for about a week afterward.   Does it make sense that a severe reaction is causing antibodies and so perhaps a smaller dose would also work?  I keep thinking about wanting to get a definite diagnosis but I don't want to be so sick in the meantime.

I have been gluten-free to the best of my ability for about a month and yet I still have many symptoms and don't feel well.  How long to feel better?

  • 3 weeks later...

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Scott Adams Grand Master

If you are getting an endoscopy to test for celiac disease you need to eat at least 2 slices worth of wheat bread daily for at least 2 weeks before the test, otherwise you may end up with false-negative results.

If you are this sensitive to gluten, can I as why you need to get this test? Why not just go gluten-free?

Katerific Explorer

I had my Colonoscopy and EGD yesterday.  I ate 2 slices of bread for 2 weeks.  I had bad nausea for several hours every day.  The doctor didn't see any small intestine damage but took biopsies.  He suspects Microscopic Colitis and took biopsies of the large intestine.  When I told him I was having watery diarrhea for almost a year at 10 times a day for many days, he right away said MC.  Either way, no more gluten for me.  

Katerific Explorer

Pathology report shows collagenous colitis in the colon and moderate intraepithelial lymphocytes in the duodenum, but no villous atrophy.  I talked to the GI doctor for 30 seconds before and after my procedure while I was coming out of anesthesia.  My primary care punted me to the GI doctor, so nobody really put much thought into my TTG test results, my genetic report, history or my symptoms.  Today, the GI doctor's nurse said no follow-up unless the Budesonide doesn't work and said celiac biopsy was "non-specific".   She gave no dietary recommendations.  I'll take the medication and based on my own research, go gluten-free and dairy-free since both are bad for MC and Celiac.  Oh, and I'm going to get a new primary care doctor. 

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    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
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