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Dr. Guandalini?


rez

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alamaz Collaborator

Gayle & Angel: are both of you still seeing Dr. Ehrenpresis? I'm in Arlington heights and I actually visited that practice and saw another doctor there. I was so irritated at how busy they were and the fact that they lost my x-rays I never went back. Maybe a diff. doctor would be a diff. experience? I'd love to not have to travel into chicago for appts. Also, do you guys know of any groups in the area? Wheaton is really too far for me as I work long hours and driving is usually the LAST thing I want to do in my free time.

Thanks!

Amy

  • 1 year later...

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Dawn235 Newbie

Kandi, Dr. Guandalini is wonderful and very friendly. I also live in Bettendorf and there are no competent doctors in the Quad Cities, that I can find, that know anything about Celiac Disease. I had to go to Iowa City, although the hematologist told me to "have a good life and just do what the Davenport hematologist is doing which was getting intravenous iron one hour one day per week. Then Iowa City called me 2 months later to tell me I had Celiac Disease. I told them I was suppose to have a good life and they had the wrong person. Anyway, I had both of my children tested at our family doctor and my son's bloodwork came back very strong positive. I took him to the only peds GI doctor in Davenport, he had a biopsy that came back negative and the doctor wanted him on a gluten free diet. I refused and took him to Dr. Guandalini and he did genetic testing on both me and my son. My son does not have Celiac in his genes. I then took my daughter to get genetic testing and she does have Celiac in her genes. I now am doing research for my sister that is very sick, 5'7" and 104 lbs and still loosing weight. She has an appt with the University of Chicago in May but in the meantime had bloodwork for celiac that came back negative...but was missing one of the tests that should have been given. Then she had a biopsy last Thursday and the doctor walked into the room and said, "She does not have Celiac Sprue". I was floored!! I know he can not see celiac. I then asked him what about her anemia. He said she is not anemic. I told him it was on the bloodwork he did. He had to go and check and said oh yeah she is a little anemic. But was more concerned with her thyroid being off and recommended her to see a endocrinolgist. We should receive the biopsy results this week but I am not expecting anything to come up. Anyway, ANGEL BENDER, I am curious of the doctor in Geneva, il that you saw. This doctor my sister saw was in Geneva and I am wondering if it is the same doctor. Could you let me know. His name abbreviated was Dr. S. Please let me know. Thanks.

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • 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.
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