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Celiac Disease Pre-Diagnosis, Testing & Symptoms
If you haven't yet been diagnosed this is the place you can discuss your symptoms and any test results that may indicate that you might have the disease.
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Recent Activity
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- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1Refractory Celiac disease - what to do
Some other things to note and that I am wondering about is that my Mom has Chron's disease and I am wondering if that could interact here somehow. I am also wondering if I should do some form of genetic testing and what the benefit of this would be? Could this tell me my risk for developing Sprue or Lymphoma? I am very worried about this developing into Lymphoma... -
- ehb posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1
Refractory Celiac disease - what to do
Hello, I was diagnosed with Celiac disease about 2 years ago. Since then, I have been on an increasingly strict gluten free diet, and have been in an entirely gluten free household since January 2025 (almost 6 months). However, since my second blood test, my ttg AB, IGA levels have been stuck at ~50 (<15 not detected), fluctuating occasionally between... -
- Gary Libby replied to Gary Libby's topic in Gluten-Free Recipes & Cooking Tips3Newly Diagnosed
Thankyou- 1
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- Scott Adams replied to milana's topic in Gluten-Free Foods, Products, Shopping & Medications1Pepsid alternative
The inactive ingredients list you provided includes pregelatinized starch, which can sometimes be derived from wheat, meaning it may contain gluten. It's best to call them to verify this. https://www.pepcid.com/our-products/max-strength-pepcid-ac-cool-mint -
- Scott Adams replied to Gary Libby's topic in Gluten-Free Recipes & Cooking Tips3
Newly Diagnosed
This category is also helpful for recipes: https://www.celiac.com/celiac-disease/gluten-free-recipes/
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Some other things to note and that I am wondering about is that my Mom has Chron's disease and I am wondering if that could interact here somehow. I am also wondering if I should do some form of genetic testing and what the benefit of this would be? Could this tell me my risk for developing Sprue or Lymphoma? I am very worried about this developing into Lymphoma, and wondering if that's a common thing that happens in these cases?
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Hello, I was diagnosed with Celiac disease about 2 years ago. Since then, I have been on an increasingly strict gluten free diet, and have been in an entirely gluten free household since January 2025 (almost 6 months). However, since my second blood test, my ttg AB, IGA levels have been stuck at ~50 (<15 not detected), fluctuating occasionally between ~47-53. I had a biopsy one year ago (June, 2024), which showed "Duodenum with mild villous blunting and intramucosal Brunner's glands, crypt hyperplasia and increased intraepithelial lymphocytes are seen, no features of collagenous sprue or lymphoma". Since January, I went on a low FODMAP diet to help manage symptoms, but have never cut out dairy or oats completely. I am at a loss for what to do. My doctor has recommended a clinical trial for Amlitelimab, which thankfully doesn't require a gluten challenge, so I am waiting to hear back from them to see if I am eligible. I have gotten no other guidance, advice or options other than that. My symptoms are up and down but feel like they have been getting worse recently so I am feeling more desperate for solutions. I feel like I am not getting the follow up and support that is recommended online in these situations, so I am trying to get a second opinion, but don't know how to navigate insurance and getting an appointment with another specialist. I have heard some people talking about dairy, oats and corn causing a reaction in some patients, but it's unclear if that is a secondary reaction to gut damage or if these things could cause actually trigger the celiac autoimmune response, and no doctors or dieticians have recommended cutting these out. I am also wondering if this could be caused by some other autoimmune disorder, and how I would get tested for that? I guess I am looking for any sort of advice for what to do in this situation, either about participating in clinical trials or finding doctors for a second opinion, or how to get support/information for other dietary changes that could be contributing to this? Thank you in advanced for any information or support!
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By Scott Adams · Posted
The inactive ingredients list you provided includes pregelatinized starch, which can sometimes be derived from wheat, meaning it may contain gluten. It's best to call them to verify this. https://www.pepcid.com/our-products/max-strength-pepcid-ac-cool-mint -
By Scott Adams · Posted
This category is also helpful for recipes: https://www.celiac.com/celiac-disease/gluten-free-recipes/
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