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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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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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