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Canadian Karen

Shouldn't Celiac3270 Be Back On Line By Now?

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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 :)


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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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 :)

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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,


Mel

mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!

Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

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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

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No more tangled intestines...

Yipee!

Welcome back, celiac3270 -

Gina :)


"Get busy living

or get busy dying."

From: The Shawshank Redemption

--------------------------------------------------------------

gluten-free since Jan 1 '05

Positive response to diet within days, felt 'alive again' within 2 weeks

Feb 22 '05:

Diagnosed "Celiac Sprue, and IBS" by a GI doc, Dr. David Lin of Danville, CA

via blood testing 53 days after I began the gluten-free diet on my own:

Test results at 53 days POST going gluten-free were:

Gliadin AB IgA = 29.9

Since 30+ = positive for Celiac Disease when ingesting gluten, my doc

diagnosed me with Celiac Sprue then and there.

Gliadin AB IgG was 5.6 at that point

-------------------------------------------

Endoscopy with biopsies, AND colonoscopy with biopsies were done,

only to rule out other possible GI problems (especially intestinal

lymphoma) - My doctor told me the results indicated "no current damage

found" - and that as long as I stay gluten-free, I don't need another

biopsy for ten years.

Follow-up blood testing was done about one year later, by the same

Gastro doc, in Nov '05:

Gliadin AB IgA =26, Gliadin AB IgG <1

Blood testing done again by him, 5 months later (March '06)

He then told me my tests results were back to normal, and "Keep up the

good work! You can't argue with success!" :-)

I now see him one time per year for routine testing to make sure I am

staying gluten-free.

------------------------------------------------------------------------------------------

ADDTIONALLY:

I was also diagnosed as positive for antibodies and autoimmune

response to gliadin by Enterolab, via stool specimen taken 56 days

gluten-free

and I have one of the two genes that 'cause' Celiac Disease:

"HLA-DQ8," via Enterolabs cheek cell test kit

---------------------------------------------------------------------

I began a COMPLETE 'Gluten-free Casein-free' diet in Nov '05, due to:

"positive" for casein antibodies from Enterolab (in Feb '05)

and

"positive" for casein IgG (Elisa) via York Labs' finger-prick blood

test, Sept '05

and continued 'stomach pains,' although nothing compared to before

going gluten-free....

UPDATE: ALL remaining symptoms disappeared within weeks of going gluten-free&CF!

**********************

My PAST illnesses I believe are attributable to Untreated Celiac Disease:

Recurrent ear and throat infections in childhood

Frequent childhood stomach aches, underweight, picky eater

Tooth enamel problems/excessive cavities in childhood

Diagnosed in 20's with non-allergic rhinitis

Two spontaneous abortions (childless)

IBS diagnosis at age 28 (all better post going gluten-free and casein-free)

["Horrible" digestive problems from ages 32-47 - excess gas,

diarrhea gone post gluten-free!]

Reflux diagnosis at age 35 ('reflux' gone post gluten-free)

ADHD diagnosis at age 38 and at age 48 (not as bad with Gluten-free Casein-free diet)

Broke elbow in 2 places, age 39

Osteopenia diagnosed at age 44 (bone scan revealed thinning of spine -

taking Calcium and Vit D now)

Fibromyalgia diagnosis at age 40 (fatigue and pain all gone post gluten-free!)

Minor depression with anxiety diagnosed at age 42 (taking Paxil)

Skin cancer - squamous at age 43 and pre-melanoma at age 45

Adult acne (this, too, went away, but only after going dairy-free)

Topical dermatitis (so bad I needed steroid shots) diagnosed at age 46

(That's gone now, too!)

Excessive bruising of skin began at age 45:

I was told by derm doc AND family physician "That's just thin, aging

skin, nothing you can do about that" (GUESS WHAT?! ...NO unusual

bruising POST going gluten-free! I can now wear skirts and shorts

again!)

SO many years of being sick...

Hopefully, others will benefit from Science, and the increasing media

attention being given to Celiac Disease and gluten-based illnesses,

and will not have to go through what I, and others on here, have had

to go through.

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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


Mom/wife to celiacs dx 12/03 and 12/04

Success is never final and failure never fatal. It's courage that counts -George Tilton

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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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