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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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  • Posts

    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Test interpretations

      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Need advice for some relief!

      By suek54 · Posted

      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      Test interpretations

      By MicG · Posted

      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Test interpretations

      By trents · Posted

      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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