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    • Russ H
      Note also that the amount of problematic protein (gliadin) that is found in breast milk of women having a normal gluten containing diet varies but is very small. Although the study referenced below says 'very high', the amounts detected vary between undetectable and a maximum of 1.2 parts per million. Breast milk is considered safe for infants with coeliac disease even if the mother consumes gluten.   https://pubmed.ncbi.nlm.nih.gov/9867098/
    • trents
      Welcome to the forum, @Pua! Yes, many, many forum participants have been in this same boat. That is, suspecting celiac disease and testing the waters by going gluten free but then realizing they undermined the ability to bet tested for it by doing so. It's a very common mistake??? but a completely understandable decision making sequence. The symptoms you describe in both you and your son are strongly suggestive of celiac disease or at least NCGS (Non Celiac Gluten Sensitivity). It is also true that a high percentage of those with celiac disease (one small study found it to be 50%) react to CMP (Cow's Milk Protein) like they do the gluten in wheat/barley/rye. And about 10% of celiacs also cross react to the protein in oats (avenin).  Although it doesn't seem prudent at this point to seek testing for celiac disease since it would require you and your son to be eating regular amounts of gluten for weeks leading up to the test, it might be helpful to seek genetic testing to see if you and he have the genetic potential to develop celiac disease. If you don't have any of the celiac genes, you should look at NCGS instead. Genetic testing doesn't require a "gluten challenge". Are you nursing your son? You might look into a hypo allergenic baby formula called Neutrogena.
    • Scott Adams
      Aloha! It sounds like you've been through so much with your own health and now your son's too—I completely understand why you're questioning celiac for all of you. Your symptoms and family history really do line up with what many experience with celiac disease. It’s common for it to be missed by doctors who end up treating the symptoms separately, as you described. For toddlers, celiac can definitely show up as constipation, stomach pain, poor growth, rashes, and recurring ear infections, just like your son is experiencing. In little ones, the digestive system can be especially sensitive, and gluten can trigger a wide range of symptoms that often go undiagnosed. Since you’ve already cut gluten and are seeing improvements, that’s a pretty strong indicator that gluten may be the underlying cause for both of you. Some families do choose to stay gluten-free without testing, especially when the gluten challenge feels too risky or uncomfortable. As for progression, yes, celiac can worsen over time if untreated, which might explain why your dad’s health is more severe. It can also look different from person to person, so it’s not unusual for you and your dad to have varying symptoms. If you do want to explore testing without a full gluten challenge, you might consider genetic testing (HLA-DQ2 and HLA-DQ8), which can show if you or your son are at risk, though it won’t confirm celiac on its own. If you did want to confirm this with blood screening unfortunately you would need to eat lots of gluten daily for 6-8 weeks leading up to the test.
    • Scott Adams
      I just want to add that many celiacs do not have any obvious symptoms, but still have the same health risks if they continue to eat gluten. Unless all of her first-degree relatives, including yourself, are screened for celiac disease, there is not way to be sure that other relatives don't also have it (some studies have shown that up to 44% of first degree relatives also have celiac disease). This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      I don't know of any that are certified gluten-free.
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