Jump to content



Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


  • You've found your Celiac Tribe! Join our like-minded, private community and share your story, get encouragement and connect with others.

    💬

    • Sign In
    • Sign Up

Really Scared


Guest BERNESES

Recommended Posts

Guest BERNESES

Hi Everyone- I'm pretty scared. I saw my doctor about three weeks ago and based on the symptoms I was presenting, she tested me for a thyroid problem and Celiac's. The thyroid came back fine and the Celiac's came back as follows:

Anti Gliadin Ab IgG 22.7 (weak positive)

Anti Gliadin Ab IgA 6.1 (negative)

Endomysial tissue transglutaminase 4.5 (negative)

So with the weak positive, I made an appt with my GI guy and immediately adopted a gluten-free diet. i am still not totally gluiten-free as one of the medications I am on has gluten in it and must be weaned off of very slowly. But I'm getting there. I have noticed some positive changes since going gluten-free.

Saw my GI- thought it would be clear cut but he does not thgink I have Celiac's- based on my symptoms he is testing me for everything from Hepatitis to lymphoma. the two symptoms he is most concerned about are 20 lbs. weight loss in 6 months and night sweats. But the things I've noticed are that my flatulence no longer smells like rotten eggs, I have more energy and i'm starting to look healthier.

Anyway, I had a CT scan on Friday and am waiting for the results. No matter what I plan to go completely gluten-free and lactose free as well (I was diagnosed with IBS two years ago).

But here's the catch- a friend of mine who is a dermatologist recently went to the national conference and attended a seminar on Celiac's for me and I guess in the last three months they've decided that the Anti Goliadin is obsolete and the Endomysial/transglutaminase is much more important.

So I don't know what the heck to think and i am really really scared! Thanks for listening, B

Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Hi -

I am confused...did your dermatologist friend go to a conference on the effects of celiac on the skin? Or on the entire body?

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

My blood test came back 29 for Anti Gliadin Ab IgG. I saw the lab print out. It said <29.9 was 'negative,' but I have now seen somewhere else that 20-30 means weak positive.

Also, I was totally gluten-free for 6 weeks at that point in time, so I HOPE my Gastro doc will see '29' as positive...I have yet to get to discuss the results with him.

I had '0' for Anti Gliadin Ab IgA, but have read that after going gluten-free, it can drop to 0 quickly...but that IgG can take much longer to become negative...

I do not recall what my other test results were....

Anyway, I feel that I am in 'a similar boat'...

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

Just wanted to pipe in here, ask for clarification, and wish you 'the best' in this...

I know that going gluten-free has made a HUGE difference in my health...and I know now from my Enterolab tests results that I need to also go Casein-free, too, but I cannot manage that change just yet...one BIG step at a time...

Best wishes,

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.

Link to post
Share on other sites
Guest BERNESES

Hi Gina- Thanks- I think she may have gone to a forum on skin and Celiac's. But i've been going gluten-free to the best of my ability regardless of the test results and I definitely notice a difference. I'm tyhinking about Enterolab too. Don't understand why they put you through all this when they could just scrape your cheek and test for the gene.

I wish you the best of luck too, Hang in there :) B

Link to post
Share on other sites

Try to relax a little. Maybe my story will help. They tested me for everything from MS to AIDS, lymphoma to lupus, before they gave up and decided they couldn't figure it out. Of course I was negative for all of them except EBV. They checked me for MS every six months for five years they were so sure of it. Turns out the celiac disease had caused the neurological problems, the immune system issues, the glandular problems......... You get the picture. Hopefully they will not find any significant issues. They may very well find several different things, all of which are either treatable or will mediate once you have been gluten-free for a good while.

We will keep you in our thoughts. Let us know how it turns out.

Donna

South Georgia

9 yrs gluten-free

...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

Link to post
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-m):




×
×
  • Create New...