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Shouldn't Celiac3270 Be Back On Line By Now?

Canadian Karen

By Canadian Karen
in Coping with Celiac Disease

Recommended Posts

strack2004 Rookie
strack2004
Posted

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
debmidge
Posted

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
celiac3270
Posted

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
mela14
Posted

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
celiac3270
Posted

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
Guest jhmom
Posted

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
FaithInScienceToo
Posted

No more tangled intestines...

Yipee!

Welcome back, celiac3270 -

Gina :)

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ryebaby0 Enthusiast
ryebaby0
Posted

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
kactuskandee
Posted

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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      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver.  😺 I react to nutritional yeast the same way as if I were glutened.  Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten.  The proteins in rice, corn (maize), and chicken meat have them as well.   Some people with Celiac might tolerate them without a problem, but I need to avoid them.  For those still having symptoms, cutting these out of our diet may improve symptoms. 
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      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      Thank you, that is helpful! 
    • Scott Adams
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      By Scott Adams · Posted

      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
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