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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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    • melthebell
      Will definitely keep you posted. We live in Japan and will fly to Australia for the endoscopy end of April so until then, for the next ten weeks, we will just start adding gluten daily. 2 slices of white bread a day is what the guidelines seem to say.    But I welcome advice from members here who have done successful gluten challenges. I know they are not always successful.    I have also read I should monitor his growth. Is that really a concern for 10 weeks of gluten consumption? He is growing and has always followed his curve but he’s no basketball player at 20-25th centile. 
    • trents
    • trents
      @melthebell, keep us posted. We are learning more and more about gluten disorders as time goes on. One of the things that has become apparent to me is that gluten disorders don't always like to fit into the neat little pigeon hole symptomatic and diagnostic paradigms we have created for them. There seems to be a lot more atypical stuff going on than we once realized.
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      Thanks very much for taking the time to write. I have been reading a lot about this and it definitely is not straight forward. My first port of call is the gene test - probably should have had it done before we left Australia because they don’t run the test in Japan. So I’ve ordered a third party test kit and just swabbed his cheek. Then we start the gluten challenge and see how it goes. 
    • melthebell
      Thank you everyone for t thank you for sharing your story. I’m borderline obsessive in making sure my kids get tested; my parents are convinced undiagnosed celiac in childhood stunted some of my growth and cause tooth enamel issues.  We now embark on a gluten challenge which comes with its own problems and I know diagnosis after being gluten-free can be difficult to secure. But I will absolutely persevere. 
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