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News: Celiac.com: When Going Gluten-Free Is Not Enough: New Tests Detect Hidden Exposure

Scott Adams

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Scott Adams Grand Master
Scott Adams
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For the 3 million people in America (myself included) with celiac disease — an autoimmune disorder triggered by the ingestion of gluten — culinary life is a series of intricate leaps, accommodations and back-steps. We peer at labels, know the difference between “gluten-free” and “certified-gluten free” ...

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    • Scott Adams
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By Scott Adams · Posted

      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
    • Scott Adams
      Gluten free thyroid medications

      By Scott Adams · Posted

      I don't believe that site is updated regularly, and it may be unreliable.  You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • KimMS
      Gluten free thyroid medications

      By KimMS · Posted

      Hello! I did a brief search on this and couldn't find recent posts, but feel free to direct me to something if I missed it! I have had a difficult time confirming which thyroid medications (specifically generic forms of Levothyroxine) are gluten-free and safe for celiacs. I am pretty confident the generic manufacturer Mylan is safe, and I have been taking this for almost two years. Recently (I think b/c of a recall), Mylan has not been available at my local pharmacies. The list I typically use for gluten-free drugs (http://glutenfreedrugs.com/newlist.htm) does not list any of the other manufacturers offered by pharmacies in my area (Accord and Macleod). When I do a search, sites tend to say these brands are gluten-free but I can't fully confirm, and other sites say that only Lannett and Mylan generic brands are safely gluten free. I have called manufacturers and they say "there are no gluten ingredients" but they don't have information regarding manufacturing/cross contact. In particlar, Accord said there is gluten present in the manufacturing facilities so they can't guarantee no cross contact. What recommendations do you have for finding levothyroxine that I can mostly be assured is safe for celiacs? It is tricky b/c I found one I was confident in but now I can't seem to get that manufacturer at any pharmacy near me. I don't want to be unnecessarily overly concerned about this, but since it is a medicine I take daily, I want to be pretty certain it is safe (I have both celiac and gluten ataxia so I need to be very careful with any gluten intake and cross contact.)      
    • Wheatwacked
      Newly diagnosed, struggling

      By Wheatwacked · Posted

      Hello @CeliacNew, If you are Vegan to help you feel better, reconsider returning to omnivore.  Actually, since you are already on a very restrictive diet, transitioning to gluten free might be easier for you.  Read the ingredient labels, Particularly vitamin D and Choline require supplements for vegan diet because our primary source is sun, eggs and beef.  B12 also.
    • Wheatwacked
      Multiple symptoms and mixed provider responses

      By Wheatwacked · Posted

      Once you've completed testing and still don't have improvement, start a trial gluten free diet.  Looking for imprvement that may indicate Non Celiac Gluten Sensitivity, which is 10 times more prevalent than Celiac Disease. Deficiencies in vitamins B6, B12, D, and C can manifest as skin rashes.  Virtual guaranty you are deficient in vitamin D.
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