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Even More Confused


mars817

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mars817 Rookie

I went gluten free for 3 weeks, I am pretty sure I didn't get any gluten during that time. My tummy problems never went away, stayed about the same really. I decided to test and had a slice of bread, assuming my stomach would get really upset but it didn't. So does that mean maybe I don't have an issue with gluten? Do I need to go longer than 3 weeks before I test? (background: lots of symptoms, brother diagnosed, I have celiac gene but neg blood tests and pill cam study was normal)


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    • trents
      @gfreenc, there is no gluten in milk, whether human or bovine. Gluten is a protein in certain grains but it is broken down into various amino acids during digestion before it gets into the bloodstream and thus it will not wind up in milk. 
    • Scott Adams
      It is definitely possible for you to be sensitive to maltodextrin, even it if is gluten-free. In the United States, maltodextrin is occasionally made from wheat, but it is still considered gluten-free by FDA standards. Here’s why: Why Maltodextrin is Gluten-Free: Highly Processed: Maltodextrin, regardless of its source (corn, rice, potato, or wheat), undergoes an extensive processing method that removes proteins, including gluten. The final product is essentially pure carbohydrate. FDA Standards: For a product to be labeled gluten-free in the U.S., it must contain less than 20 parts per million (ppm) of gluten. Maltodextrin derived from wheat is processed to meet this threshold, making it safe for individuals with celiac disease or gluten sensitivity. Source Labeling: In the U.S., food labeling regulations under the Food Allergen Labeling and Consumer Protection Act (FALCPA) require wheat to be listed as an allergen if used in the product. This helps individuals avoid wheat-derived maltodextrin if they are allergic to wheat (a separate condition from celiac disease). Bottom Line for People with Celiac Disease: Maltodextrin is considered safe for people with celiac disease or gluten sensitivity, even if derived from wheat. If the product is labeled gluten-free, you can trust it adheres to strict FDA standards. However, if you’re still concerned or sensitive to trace amounts, you can opt for products where maltodextrin is explicitly labeled as being derived from non-wheat sources, such as corn or rice.
    • Scott Adams
      Miso can be gluten-free, but it depends on the ingredients and how it's made. Miso is a fermented paste made primarily from soybeans, salt, and koji (a mold used for fermentation). Some varieties also include grains such as rice, barley, or wheat. Rice-based miso is typically gluten-free. Barley or wheat-based miso contains gluten and is not safe for those with celiac disease or gluten sensitivity. Even if miso doesn’t list gluten-containing grains, cross-contamination is possible during processing. Look for a certified gluten-free label to ensure safety. Check the ingredient list and packaging for terms like: "Barley" or "wheat" (contains gluten) or "Certified gluten-free" (safe for celiacs). Brands like Miso Master Organic offer certified gluten-free miso varieties, making it easier to find a safe option. If you’re unsure, opt for miso labeled as gluten-free and confirm with the manufacturer if needed. Always double-check ingredients to avoid any accidental gluten exposure. We have it on our forbidden list because in many cases it can be difficult to know for sure whether it's gluten-free. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping.      
    • Scott Adams
      It sounds like you’re navigating a lot of testing and trying to make sense of your results. While I’m not a medical professional, I can share some insights that might help. A calprotectin level of 2500 is quite high and typically indicates significant inflammation in the gastrointestinal tract. This could be due to a variety of conditions, including celiac disease, inflammatory bowel disease (like Crohn’s or ulcerative colitis), or other causes of gut inflammation. The celiac testing results will be important to help rule in or out celiac disease as a cause. Your kidney-related results (stage 3a CKD and GFR readings) are worth discussing further with your doctor. While these levels indicate reduced kidney function, they don’t necessarily mean immediate issues, but they should be monitored closely, especially if there’s ongoing inflammation or another underlying condition contributing to it. As for the milk allergy testing, it’s good to have that information, as dairy can sometimes contribute to symptoms in people with celiac or other gut issues. While waiting for the celiac test results, it might be helpful to keep track of any symptoms you’re experiencing, especially related to diet, and share those with your healthcare team. It’s also worth asking your doctor about follow-ups for the kidney results to ensure you're addressing any potential contributors to inflammation or kidney function. I hope you get clarity soon from your test results. It’s great that you’re being proactive about your health, and you’re definitely not alone in this journey. Take care and keep us posted on how things go!
    • gfreenc
      I had the same epiphany several years ago while traveling in Iceland.  I normally try to limit, but not completely cut out, dairy.   However, in Iceland if you want to eat fresh, local food, that means fish, red meat, and dairy.  All of their dairy and livestock are pasture raised by small family farms.  I thought that my guts would be angry from all that dairy but I felt just fine.  Similarly I noticed that I can eat Jeni’s ice cream here in the states without any issue.  Their ice cream is all famously from grass-fed milk. While I haven’t done a rigorous study or trial, I have anecdotally noticed a difference when I eat grass-fed vs regular dairy.  If some babies react to gluten in their mom’s breast milk, why wouldn’t we celiacs react to cow’s milk after they eat gluten? I don’t think it’s just about general inflammation or that eating “paleo” is the answer (for anything, ever.). There may also be something to the A1 vs A2 cow debate, also.  Either way, whenever possible I buy grass-fed dairy (and meat- it’s good!)
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