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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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    • Sandi20
      Thank you for your feed back and knowledge.  Scott do you know the names of the BIG manufactures who produce most supplements?  Love to research them all and decide on their principles and manufacturing certifications who I want to spend my dollars with if they provide other non private label supplements that are good. 
    • Scott Adams
      I haven't heard of them before, but a significant portion of dietary supplements are produced by a handful of large contract manufacturers. These companies have the facilities, expertise, and certifications to produce supplements at scale, making them attractive partners for brands that don’t have their own manufacturing capabilities. I doubt Forvia manufactures them directly, so it is hard to know if they are just doing clever marketing to a certain malabsorption crowd, or they actually have unique product.
    • Scott Adams
      That’s an interesting observation! The timing you mention does raise questions about the relationship between modern wheat varieties and the emergence of Non-Celiac Gluten Sensitivity (NCGS). Norman Borlaug’s work on high-yield, disease-resistant wheat during the Green Revolution significantly increased global food production, but it also led to changes in the composition of wheat, including higher gluten content to improve baking qualities. While NCGS was formally recognized as a condition in the 2010s (https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-10-13 and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820047/) , it’s important to note that the awareness and diagnosis of gluten-related disorders have evolved over time. Some researchers suggest that modern wheat breeding practices, along with changes in food processing and gut health, may contribute to the rise in gluten sensitivity. However, the exact mechanisms behind NCGS are still not fully understood, and it remains a debated topic in the scientific community. It’s also worth considering that increased awareness and improved diagnostic tools have played a role in identifying conditions like NCGS that may have existed but were previously unrecognized. The interplay between genetic, environmental, and dietary factors makes this a complex issue, and more research is needed to fully understand the connections.
    • Scott Adams
      Here is a recent reply to a Celiac.com email asking for comment about gluten contamination detected in their bakery products: You can read more about it in this thread:  
    • trents
      @Marie70, it is very important that your daughter not begin experimenting with eating gluten free until all testing for celiac disease is complete. Doing so will invalidate the testing. Normally, the testing involves two stages. The first stage is blood antibody testing as per the article linked by Scott above. As you can see from the article, there are a number of tests that can be ordered when diagnosing celiac disease but most physicians will not order a complete panel. At the very minimum, your daughter should request two antibody tests, "total IGA" and "tTG-IGA". The tTG-IGA is considered the centerpiece of celiac disease testing but if total IGA is low (i.e., if she is IGA deficient), this will result in an artificially low tTG-IGA score and possibly a false negative. Many general practitioners are not very knowledgeable about celiac disease testing so we have found we have to be a little assertive in order to get proper testing done. I don't know under the relational circumstances how much input you will have with your daughter about these things but I thought I'd pass the info on to you anyway. The second stage of celiac disease testing involves an endoscopy with biopsy of the small bowel lining which is then sent to a lab for microscopic analysis. This checks for damage to the small bowel lining and is confirmation if any of the blood antibody tests are positive. It is also considered to be the gold standard of celiac disease diagnosis. Again, should her antibody testing be positive, your daughter would still need to be consuming gluten until after the endoscopy/biopsy is complete.
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