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Super Sensitive People

Non-scientific discussions for those who react to lower levels of gluten than most.


528 topics in this forum

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    Wheatwacked
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    knitty kitty

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  • Recent Activity

    1. - trents replied to Neat1's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Maybe celiac, maybe just ncgs?

    2. - sophierecette replied to BadHobit's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Help! I have to eat gluten :(

    3. - Neat1 replied to Neat1's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Maybe celiac, maybe just ncgs?

    4. - Scott Adams replied to BadHobit's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Help! I have to eat gluten :(

    5. - Scott Adams replied to cjjones5969's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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  • Posts

    • trents
      Digestive enzymes won't help with gluten disorders per se but can often help with pancreatic enzyme deficiency related digestive problems. I'm not sure that having an IGA deficiency necessarily predisposes one to decreases in infection fighting ability but that's a good question to ask your physician. 
    • sophierecette
      Thank you for sharing your journey—it sounds like you've been through a lot, and you're being incredibly proactive about your health! Celiac disease and gluten intolerance can be tricky to navigate, especially when there’s conflicting advice from different doctors. It’s great that you’re feeling healthier on a gluten-free diet, but I understand the frustration of wanting a definitive diagnosis. To answer your question about reintroducing gluten for the test, it’s important to follow your doctor's advice carefully. The "gluten challenge" (which is what you’d be doing to trigger an accurate test) typically involves consuming gluten daily for about 6 to 8 weeks. Most guidelines recommend eating 1-3 slices of bread per day (about 3 grams of gluten daily) to ensure enough gluten exposure for the test to detect damage or antibodies. Given your small size, you might want to start slowly with 1 slice of bread or the equivalent (like a small bowl of pasta), but consult your doctor or gastroenterologist for specific recommendations. It's crucial that you maintain the gluten intake during the period, even though you might experience discomfort, to ensure that the biopsy or blood tests can accurately assess whether you have celiac disease. Also, it's helpful that you’ve seen improvements in your health on a gluten-free diet. Keep monitoring your symptoms closely during the gluten challenge, and make sure to communicate everything to your gastroenterologist. Ultimately, the goal is to get a clear diagnosis so that you can make the best decisions for your long-term health. Stay strong through the process—you’re doing great in advocating for yourself!
    • Neat1
      That’s a really interesting idea about IgA deficiency. I’ve had chronic sinus infections for more than 10 years as well. I’ll bring it up next time with my PCM.    in the meantime I’m going to supplement B1 and see if there’s any change. I’m also doing l. reuteri plus a regular multistrain probiotic which seems to be helpful. Do digestive enzymes help at all, or it’s a ymmv situation?       
    • Scott Adams
      For what it's worth, at the time of my celiac disease diagnosis I was also diagnosed with H. Pylori and treated for it with antibiotics. The throat swelling sounds like an allergy that may not be associated with celiac disease--if you can recall the foods you ate before this reaction it might help you track down the culprit, but if you can't it might make sense for you to keep a food diary so that you can figure this out. Also, if going through a gluten challenge to get a celiac disease diagnosis will allow you to get gluten-free food at half price, it would be worth it, but just be sure that you don't also have a wheat allergy that is causing your throat to swell, as you could have both an allergy and celiac disease. PS - You should bring up the throat swelling to your doctor, as they may want to have you do allergy tests.
    • Scott Adams
      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 may be helpful:    
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