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Misinformation from GI?


Sanders

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Sanders Rookie

I just got back from my first appointment with the GI, and of course, feel more confused :) Anyone have input on the following?

1) I had blood work done through my primary care doc, and had positive EMA and positive GDP, but negative TTG (which I understand is weird, and my doc today couldn't explain why that would happen, and said the TTG is a better indicator, which I thought wasn't the case). Is TTG the best indicator?

2) He said the endoscopy is the "gold standard", of course, and scheduled me to get one next week. I am fine getting one done, in fact I would like to have 100% confirmation if possible, but he told me that if it's negative, that it means I "haven't developed Celiac yet", which from reading these forums, I know to be possibly inaccurate.

3) I pressed him about more info regarding the positive EMA, and that I have read that that is a pretty solid indicator of Celiac, with a very small margin of error. He still seemed to be of the mindset that it could also indicate just a gluten sensitivity. That isn't correct, right? EMA is specific to Celiac, not to gluten sensitivity? I said "so, with my positive blood work, and a positive response to a gluten elimination diet, if I had a negative biopsy, would that mean I don't have Celiac?" and he basically said it could just mean I'm sensitive to gluten, and they would keep an eye out.

I have made an appointment with another GI, and I'm hoping to get some better answers. I'm just frustrated that answers are so hard to get at this level.


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RMJ Mentor

Some doctors won't give a celiac diagnosis without a positive biopsy, no matter what.  I was high positive on five different blood tests (TTG IgA and IgG, DGP IgA and IgG and EMA).  All values went down to normal or very near normal on a gluten free diet. I could not have a biopsy due to other health problems.  My GI will not give me a celiac diagnosis.

nora-n Rookie

The EMA is only positive with celiac

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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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