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Better Understanding Of 'gluten Free'


ammaestro

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ammaestro Newbie

I have a few primary questions that I would greatly appreciate some help in understanding:

1. Can a celiac individual safely eat any wheat product, as long as they're marked 'gluten-free'? The larger question therein may be, is celiac a wheat, or a gluten-sensitivity/intolerance?

2. Is celiac a condition that one can 'grow out of'? My instincts suggest and from what I read i expect the answer is no, but I had a pediatrician tell me this when I was about ten years old, and have been eating liberally (largely a non-celiac diet) ever since, which I now believe has caused chronic immuno-issues my whole life.

3. Related to the previous qu, can one be considered celiac with main/chief symptoms of some chronic fatigue and a compromised immune system.? My 'M.O' has always been getting lots of pesky flu and bronchial infections that can last well beyond the norm in duration. I generally don't have any chronic stomach difficulties, or what seems to be commonly known as 'leaky bowel'.

Thank you in advance. Andrew Meyer


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1. A celiac cannot safely eat anything derived from wheat, rye, or barley. Celiac is a gluten sensitivity, and it is almost impossible to remove all the gluten from anything derived from gluten-containing grains. The only exceptions are grain vinegars and alcohols where the final product goes through multiple distillations, and even those bother super-sensitive celiacs. If you're in Europe looking at codex wheat starch breads, they're generally a bad idea. At this point the old codex 200 ppm limit is not considered safe for all celiacs and Europe has a proposal to revise the gluten-free limit to 20 ppm.

2. It is possible, but very rare. Have you considered having the blood tests and endoscopy to see what's going on? It's definitely possible that the long-term onslaught from gluten could have caused other health issues. Celiac does all sorts of bad things to our bodies.

3. Yes, celiac can cause fatigue, other autoimmunity, and immune compromise. You might also ask your doctor about hypothyroidism, as many celiacs have autoimmune thyroid disease. Hypothyroidism causes fatigue and it can cause immunosuppression, along with quite a few unpleasant symptoms.

mushroom Proficient

1. Celiacs have different levels of tolerance to trace amounts of gluten. Gluten free means that it tests to less than x parts per million of gluten. There is no test which tests for absolute zero gluten, about as low as they can go is less than 5 ppm, but they are trying to establish a standard in the U.S. of less than 20 ppm. Most celiacs can tolerate this small amount of gluten, but some cannot. These are the hypersensitives who react to products that are made in shared facilities or on shared lines (which are cleaned thoroughly before gluten free products are run). You do not sound like one of these, so anything marked gluten free is probably okay for you.

2. No, it is a myth that you can grow out of celiac. Doctors used to state this because after childhood celiacs often have a "holiday" period before it hits them again. There have been 1 or 2 isolated instances reported of people "recovering" from celiac disease, but since you are obviously still reacting you should not assume you are one of these extremely rare individuals.

3. Celiac is so hard to diagnose because it comes in so many different guises. Some people have only neurological symptoms, I too used to get every bug going around and they would last for two to three times as long as everyone else and I would also develop secondary infections. I did not have the fatigue but so many do report that. Leaky gut may not cause gastric distress, as I understand it, but allows the penetration of foreign proteins into the blood stream which causes the immune system to go bananas!

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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