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  • Recent Activity

    1. - trents replied to jkinloch's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Difficulty with doctors

    2. - jkinloch posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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      Difficulty with doctors

    3. - Scott Adams replied to FayeBr's topic in Coping with Celiac Disease
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      Corn reaction and ataxia

    4. - Scott Adams replied to Dora77's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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      Is it safe to eat? (airborn flour)

    5. - Scott Adams replied to Tyoung's topic in Related Issues & Disorders
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      High Folate Levels


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  • Posts

    • trents
      Welcome to the forum, @jkinloch! That is unusual because celiac disease is a genetically based autoimmune disorder. One the latent genes are triggered such as to produce active celiac disease they are "on" permanently. Celiac disease doesn't go away.  But first, let's establish some fact-based history before we speculate any further about how this change of tune by the GI doc came about. So, first of all, how did this GI doc arrive at his original dx through normal celiac testing protocols. Typically, this involves two stages of testing. The first is a blood test looking for antibodies that are specific for celiac disease. The second is an endoscopy with biopsy looking for damage to the lining of the small bowel that celiac disease causes. Were either  or both of these done years ago. If so, what were the results? Were these tests repeated when he/she recently declared you to not have celiac disease? Are you sure you did not misinterpret what the doc said to mean you no longer had celiac disease when what he really meant was that your celiac blood antibodies had now returned to normal and the lining of hour small bowel had now healed. That would not be the same as "not having celiac disease". 
    • jkinloch
      Has anyone else had a gastroenterologist diagnose you with Celiac Disease years ago, only to tell you in 2025 you don't have Celiac Disease?  I'm really frustrated about this.  The doctor tried to make me feel better by saying, "Well, you can eat bread again.  That's good, right?"  I am mostly upset about the 8 years of insults from restaurants for ordering gluten-free, horrible treatment from airlines for being gluten-free, and how much work I have gone through making sure that not even a grain of gluten enters my body.  I don't even know what to do at this point?  Anyone else?
    • Scott Adams
      Corn protein (zein) is considered safe for those with celiac disease, however, some people may have a separate food intolerance to it. 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.  
    • Scott Adams
      It’s great that you’re being so cautious about gluten exposure, especially since you’re asymptomatic and rely on diligence to stay safe. Regarding your mom’s gluten-free dough preparation, there is a risk of cross-contact if gluten-containing flour was used in the same area, even if surfaces and hands were washed. Airborne gluten flour can settle on uncovered food, utensils, or surfaces, so it’s possible that your gluten-free dough could have been contaminated. For peace of mind, it might be best to avoid eating it this time and discuss with your mom the importance of preparing gluten-free items in a completely separate, clean area to avoid cross-contact. As for whether gluten dough should be made in the house, it’s generally safer to avoid it altogether if possible. Gluten flour can stay airborne for hours and settle on surfaces, increasing the risk of accidental exposure. If gluten-containing baking is necessary, it should be done in a separate space with thorough cleaning afterward, and gluten-free items should be prepared first. Regarding EPI (exocrine pancreatic insufficiency), celiac disease can sometimes lead to EPI due to malabsorption and damage to the small intestine, which can affect pancreatic function. It’s worth discussing this with your doctor, as they may want to run tests to confirm EPI and explore treatment options. It’s encouraging that your blood work for antibodies is negative, but since you’ve had negative results even when consuming "may contain gluten" foods, it’s possible that your antibody levels aren’t highly sensitive to low-level exposure. Replacing basic spices like pepper with certified gluten-free options is a good step, as even small amounts of gluten can cause damage over time, even if you don’t feel symptoms.
    • Scott Adams
      It sounds like you’ve been through a lot since your celiac diagnosis, and it’s great that you’re paying close attention to your health and lab results. Regarding your folate levels, it’s interesting that they’ve jumped from 4 ng/mL to >24 ng/mL. Since you mentioned you only took supplements for a short time, it’s possible that your diet changes since going gluten-free have played a role. Whole foods like leafy greens, legumes, and certain fruits are naturally high in folate, and if you’ve been eating more of these, they could have contributed to the increase. However, such a significant jump might also warrant a discussion with your doctor to rule out other factors, like how your body is absorbing nutrients post-diagnosis. As for the acid reflux, it’s not uncommon for people to experience new digestive symptoms after going gluten-free, especially if their gut is still healing. Celiac disease can cause inflammation and damage to the digestive tract, and as your body adjusts to a gluten-free diet, it might take time for things to settle. Some people also find that removing gluten can shift their gut microbiome, which might temporarily lead to issues like acid reflux. It’s good that you’re avoiding processed gluten-free foods, as they can sometimes be harder to digest. You might want to explore whether other foods (e.g., dairy, acidic foods, or high-fat meals) are triggering the reflux. A few things you could consider: Keep a Food Diary: Track what you eat and any symptoms to identify potential triggers. Smaller, Frequent Meals: Eating smaller portions more often can sometimes ease acid reflux. Probiotics: These might help balance your gut microbiome as it adjusts to the gluten-free diet. Follow-Up with Your Doctor: Since your folate levels and acid reflux are both notable, it’s worth discussing these changes with your healthcare provider. They might want to check for other underlying issues or adjust your treatment plan.
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