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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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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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