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Help Conflicting Test Results, Still No Diagnoses!


Bette

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Bette Explorer

Hi,

I had a previous topic, under pre-diagnosis, called "Where to Start". I still have no answers, and believe it or not after almost a month, there is still no appt. scheduled for a g.i. doctor (due to either the insurance dragging their feet or the referring physician(my gynecologist, not doing their job!!). Everytime I try to contact a real person, I get directed to a voice message, for which I have left numerous messages, but nobody calls back.

Anyways, I tried to get the ball rolling, I had my family doctor order the celiac panel antibody test, and then in the meantime I had decided to get the genetic test done. I chose Kimball genetics, because of price and ease, but I really wanted Promethius Labs. When I looked into it, Promethius has the most complete up to date testing and literature on the HLA- typing, , but they were out of my price range (my insurance would not cover) and it would have required me to spend another afternoon in my drs. office trying to convince her to order the test again.

So here are my results, well first I should clarify the lab that I went through was supposed to do a celiac panel which was supposed to be:

Panel Comprises:


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    • Scott Adams
      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
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      I had this symptom when I was diagnosed. Are you sure that your diet is 100% gluten-free?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):      
    • Scott Adams
      Based on your results, it seems unlikely that you have celiac disease. A negative endoscopy and the absence of HLA-DQ2/DQ8 genes (the primary genetic markers for celiac) strongly suggest you do not have the condition. However, the elevated TTG-IgA (22) could indicate a temporary immune response or another issue, such as a different autoimmune disorder, intestinal infection, or even a lab anomaly. The presence of DQA1*05 alone is not diagnostic for celiac. Meeting with an allergist and GI specialist is a good next step to explore other potential causes for the high antibodies, such as non-celiac gluten sensitivity or other immune-related conditions. Keep a detailed food and symptom diary to help guide further testing and discussions with your doctors. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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      I had celiac panel done back in October, only ttg iga came back high  (22 with positive being over 3). Endoscopy done in January, it was  negative. Genetic test done after endoscopy, negative for both hla dq2 & dq8. Did show positive for dqa1*05.  Scheduled to meet with an allergist next week. Not scheduled to meet with GI specialist till after allergist. Confused if I have celiac or what caused high the antibodies originally if I do not.
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      Tums is an antacid.  Calcium (also vitamin D) need it acidic for absorption, so you're not really getting any calcium benefit.  Try DGL, it coats rather than counteracts acid. You need acid anyway to digest and get those vitamins. It's usually not too much acid that causes heartburn, it's not enough acid which causes food to rot and ferment in the stomach. Try DGL, everyone I've gotten to actually try it has had great relief. https://www.amazon.com/dp/B001IAJW0K  
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