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Doctors To Avoid (for Celiac And Intolerance)


nu-to-no-glu

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nu-to-no-glu Apprentice

I've been wanting to start a thread to help others, like so many here, that go from Dr to Dr looking for answers. We spend so much time and money to get support. I want to mention that I'm not bashing any dr, but I wish I could have looked on here and seen if anyone else had met these Drs and whether they knew anything about celiac. So here are my suggestions:

In Kansas, these Drs are not well versed in celiac/gluten intolerance (but are in other GI issues):

Dr. Eaker

Dr. Buser

Dr. Pravin Patel


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finally diagnosed Apprentice
I've been wanting to start a thread to help others, like so many here, that go from Dr to Dr looking for answers. We spend so much time and money to get support. I want to mention that I'm not bashing any dr, but I wish I could have looked on here and seen if anyone else had met these Drs and whether they knew anything about celiac. So here are my suggestions:

In Kansas, these Drs are not well versed in celiac/gluten intolerance (but are in other GI issues):

Dr. Eaker

Dr. Buser

Dr. Pravin Patel

In my opinion this is Dr. Bashing. I look to this site for support, and questions ie: product information, new rest info. I do not wish to be part of a web site that will bash doctors for not being versed in Celiac. This is something that a lot of docs are still learning about. It is good to vent regarding something. But to personally name someone is wrong. You have no idea if they have a relative or loved one or a patient on this site.

twe0708 Community Regular

I hear what you both are saying, but if one Dr. is better than another it helps one from wasting their time. It's not that he or she is saying these are bad doctors. They may just be saying that they aren't as experienced with celiac disease as we would want them to be. :)

nu-to-no-glu Apprentice

Ooh, that wasn't the intention at all, if you notice I said that they are very well informed drs, just not as informed in celiac disease. I was trying to be helpful to those who are searching and have limited time and funds, it's not an easy disease and many are not as specialized, hopefully, this won't be the case for long. I don't see it as "bashing" at all, and appologize if you see it that way.

RESO Apprentice

Since America is the country of lawsuits, my opinion would be to change the thread to "doctors who are knowledgeable" and maybe come at it that way. Of course, it's not slander if it's the truth, and I am not the biggest fan of many western docs. I completely understand that your intentions are very good. Just my two cents.

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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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