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Shouldn't Celiac3270 Be Back On Line By Now?


Canadian Karen

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strack2004 Rookie

celiac3270, I didn't realize that you had been hospitalized. I am glad to hear that you are home again after your second hospital visit and pray that this surgery will be the answer for you. Cheers, Ruth S. Strack 2004


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debmidge Rising Star

celiac3270, Wishing you a speedy and uneventful (except for happiness and joy) recovery. Rest, then let us know how you are doing.

(By the way, which hospital were you at for this surgery?)

Debbie Midge :)

celiac3270 Collaborator

Columbia Presbyterian -- the same hospital that Dr. Greene and my GI (celiac-specialist) practice at.

And thank you....the swelling went down a little bit with the pill--and I've just been relaxing, posting, and reading (right now it's Bringing Down the House -- a NY Times bestseller that I'm really enjoying right now).....no further incident w/ anything :)

mela14 Enthusiast

Hi celiac3270.....hope you are doing better. Who is the dr that you see at Columbia. I called ther last month to make an appt as I am moving to NJ this week and wanted to see Peter Green. Of course he is very busy and does not take my ins. They suggested that I see an associate. I think her name was Dr Lee.

I didn't make the appt yet but would love to hear about your experience there.

I saw a GI dr in NJ last month and he was OK....not Columbia material though.

Take care of yourself,

celiac3270 Collaborator

Dr. Green doesn't take children so, since I'm only 14, I see Dr. Joseph Levy. Everyone, it seems, who has ever had him has been extremely pleased--he takes the time to talk to you, confident, reassuring, etc. He's only a pediatric doctor, though....I assume that you meant my normal GI, who specializes in celiac, at Columbia

Guest jhmom

celiac3270 I am glad you are back and on the road to a full recovery!!!!!

Take care of yourself and get plenty of rest! :D

FaithInScienceToo Contributor

No more tangled intestines...

Yipee!

Welcome back, celiac3270 -

Gina :)


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ryebaby0 Enthusiast

Awwwww... I feel bad, I haven't been around and didn't know! I'm so glad you are home. FYI -- if you (or anyone else) ever needs any kind of ng tube again (let's hope NOT) ask the nurses for chloroseptic when they place it, and for as long as you have it. Doesn't remove the pain entirely, but for some people it can help take the edge off.

Let's pray this is going to make the difference for you, after so much searching for help! You're the man! :)

Joanna

kactuskandee Apprentice

Welcome Back celiac3270,

We missed you................we need you around so rest and relax and get well soon. Thanks for sharing your experience with us.....but then you are always sharing your knowledge that is above and beyond our expectations and your chronological age.

You had quite and ordeal but we know you were in good hands and that all this will contribute to you feeling much better in the long run.

You have the best attitude I've ever seen!!!

Kandee

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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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