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Coping with Celiac Disease
Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.
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Recent Activity
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- trents replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease8Refractory Celiac disease - what to do
Doctors aren't always right. I have been participating on this forum for many years and you wouldn't believe the cockamamie things doctors say about celiac disease to our member base. It's often based on very outdated information and sometimes just plain ignorance. Many doctors neglect to tell their patients not to begin a gltuen free diet before the testing...- 1
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- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease8Refractory Celiac disease - what to do
I have changed my toothpaste, and all hair/face/body care products to be gluten free. When I pick up prescription medications I ask for the full ingredients list to check for possible gluten sources, and don't take advil anymore because they cannot verify it to be gluten free. I am not sure how to change my diet further, but please let me know if you have... -
- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease8
Refractory Celiac disease - what to do
@trents Thank you, but it is still not clear to me what else other than celiac disease could be causing the combination of increased tTg-IGA and villous atrophy? when I asked my doctor about other possibilities, he said it is only celiac disease and gluten that could be causing this. Do you have any advice about how to approach my doctor about this, or what... -
- trents replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease8
Refractory Celiac disease - what to do
When you say you have been in an "entirely gluten-free household" since January of 2025" does that include making sure you have checked that all medications, supplements and oral hygiene products are gluten free? I can also tell you that for some people, it can take several years for their antibody numbers to normalize. -
- trents replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease8
Refractory Celiac disease - what to do
I believe you are falsely concluding that elevated tTG-IGA/tTG-IGG levels can only be caused by celiac disease. I will offer a link here to an article outlining the various blood antibody tests that can be used to diagnose celiac disease. Each one them has less than a 100% specificity for celiac disease:
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I hear you, but I am not sure where to go from here if there is a possibility that it is cause by something other than celiac and gluten. What other things should I be getting tested for and how? If I can't trust the doctors, who can I trust? How can I be sure that it is not from small amounts of gluten that are impossible to eliminate? Would you recommend the Amlitelimab trial? Should I continue eliminating things from my diet? there is so much conflicting information and research, I would prefer to defer to the doctors, but it seems that they don't have many more recommendations for me either...
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Doctors aren't always right. I have been participating on this forum for many years and you wouldn't believe the cockamamie things doctors say about celiac disease to our member base. It's often based on very outdated information and sometimes just plain ignorance. Many doctors neglect to tell their patients not to begin a gltuen free diet before the testing is finished. Others tell them just to cut back on gluten but a little is okay. Think about it. The tTG-IGA test has a 90-98% specificity rating. That means there is somewhere between a 2% and a 10% chance that elevated tTG-IGA levels can be caused by something other than a celiac reaction to gluten. The tTG-IGA antibodies are just an inflammatory response of the immune system, most likely to gluten but a certain percentage of the time to something else. And the villous atrophy is just the result of persistent inflammation, whatever the cause. Why don't you print out the article on blood antibody tests and show it to the doctor and ask him/her what it means that the test is less than 100% specific?
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I have changed my toothpaste, and all hair/face/body care products to be gluten free. When I pick up prescription medications I ask for the full ingredients list to check for possible gluten sources, and don't take advil anymore because they cannot verify it to be gluten free. I am not sure how to change my diet further, but please let me know if you have any other ideas for potential hidden sources.
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@trents Thank you, but it is still not clear to me what else other than celiac disease could be causing the combination of increased tTg-IGA and villous atrophy? when I asked my doctor about other possibilities, he said it is only celiac disease and gluten that could be causing this. Do you have any advice about how to approach my doctor about this, or what to do if it is not caused by celiac disease?
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When you say you have been in an "entirely gluten-free household" since January of 2025" does that include making sure you have checked that all medications, supplements and oral hygiene products are gluten free? I can also tell you that for some people, it can take several years for their antibody numbers to normalize.
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