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Biopsy


OHtummytroubles

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OHtummytroubles Rookie

Well I broke down and scheduled a confirmatory EGD for 11/19. Any suggestions for what I need to do as far as amount of gluten to consume daily before then? It really does make me feel terrible - sometimes unbearable, but I want confirmation. Even if the EGD is negative I will have peace of mind that nothing is wrong internally with me. They will re-draw a Celiac panel and vitamin levels that day as well, so I want to be sure that I am doing whatever prep work I need to with the challenge.

So far today I had a baked potato w/cheese and a plain grilled chicken w/no bun. Skipped breakfast and will have something for dinner. I know this is not enough or even any gluten at all, so I need to know how much I need to consume to know for sure if I react to gluten or not. Is it 1-2 gluten items a day, 3-4...etc.

I really do not know how I will do it considering it gives me such problems :( I had two "butter cookies" in a little tin yesterday and was in pain all evening. It really didn't digest. Woke up in pain today still....and had to pop some tums to feel a little better. It's going to be a long month. I am seeing a"Dr. Kirby" for the EGD who works with my doctor at the Cleveland Clinic. From what I read he is knowledgeable, so I can at least rest assured that he will be thorough. He has done many Celiac studies and what have you :)

Thanks!

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ravenwoodglass Mentor

You need to consume 3 to 4 slices of bread a day or the equivalent in other gluten foods at a minimum. Do be aware that even with a full month back on gluten your tests can still be a false negative. If you have been gluten free and react strongly to the challenge that is pretty diagnostic in itself.

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    • trents
      Keep in mind, Hannah, that of you are on a gluten free diet and want to get tested for celiac disease, any testing would be invalid until you were back on generous amounts of gluten for weeks/months.
    • Hannah2907
      Hi, the test I did was an online one with list of positive feedback. I initially did the test as I thought I may be lactose intolerant but with the results showing high sensitivity to gluten as well as dairy I thought I’d just ask for foods that may benefit me and my symptoms as well as follow these results up with a blood test with my doctors. It doesn’t specify coeliac, it just showed a very high sensitivity to gluten
    • Scott Adams
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    • trents
      Welcome to the forum community, @Hannah2907! I know this is going to be all very confusing, Hannah, but the first thing to realize is that celiac disease is not an allergy and it cannot be diagnosed by allergy testing. It is an autoimmune disorder characterized by an inflammatory reaction to the ingestion of the protein "gluten" which is found in wheat, barley and rye.  Autoimmune disorders speak to diseases where the body's immunes system attacks the body's own cells. In the case of celiac disease, when food containing gluten is ingested, it triggers an attack in the villous lining of the small bowel. This causes inflammation in the villous lining and produces characteristic antibodies that can be detected in the blood through certain lab tests. This inflammation often (but not always) causes discomfort and other GI distress and always wears down the villous lining. This "wearing down" of the villous lining over time causes increasing inefficiency of nutrient absorption and can cause serious vitamin and mineral deficiency related medical problems. The villous lining of the small bowel is essentially where all the nutrition in our food is absorbed. The damage done to the villous lining can also be detected through an upper GI scoping ("endoscopy") with a biopsy. The endoscopy/biopsy is typically used as confirmation when the antibody blood testing is positive for celiac disease. Celiac disease may also be referred to as "gluten intolerance".  There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity). NCGS is also known simply as "gluten sensitivity" but, unfortunately, many people use the terms "gluten intolerance" "gluten sensitivity" interchangeably. NCGS is 10x more common than celiac disease and shares many of the same symptoms with celiac disease. The main difference is that celiac disease damages the villous lining of the small bowel whereas NCGS does not. There is no test for NCGS. Celiac disease must first be ruled out. Both require complete abstinence from gluten. Some experts believe that NCGS can be a precursor to celiac disease. The immune system pathway of NCGS is not well understood though, like celiac disease, it is not an allergy. My point in all of this is to help you understand that the testing you have undergone for allergies is not effective for diagnosing gluten disorders. You need to get blood antibody testing done that is specifically designed to detect celiac disease. Many people with gluten disorders also must avoid dairy and sometimes oats, even gluten-free oats. 
    • Scott Adams
      Hopefully you saw this article...have a great trip!  
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