Re: Celiac Disease

[Guest guest]

Hi Shauna;

I'm very sorry to hear of your Celiac disease diagnosis. Although I

have no experience with the gluten-free diet, I recall that Tim

Ronlein posted an article on Celiac Disease a few months ago (see

Message # 61203).

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

[Guest guest]

Thanks . I did read Tim R's message from March but it wasn't clear to

me if he has been diagnosed with Celiac or if he was referring to other

members. I am hoping that Tim will reply - though I know he has a lot on

his plate right now.

I also read through some of the abstracts on your website. (Thanks!)

I should clarify that I haven't been *officially* diagnosed yet - the

biopsies will say for sure. I am curious how often the anti-tissue

transglutaminiase antibody is a false positive in PSC patients or if the

writing is on the wall.

And to think last week I was complaining about salt-free crackers! I think

salt-free rice cakes are what I now have coming...

The not-insignificant good news is that the endoscopy revealed no new

varices and no bleeding.

Thanks for your reply,

Shauna (29, AIH'86, Crohns'95, PSC'99, listed @ listed, MELD =18)

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[Guest guest]

I was diagnosed with Celiac Disease in 1997, at the same time as my PSC

was diagnosed. Since then, we realized that my mother is also a celiac

sufferer.

Anyway, the first year or so, the diet seems just horribly restrictive, but I

promise you that eventually it becomes as easy and natural as any kind of

diet alteration.

I've had so much success on the diet that subsequent endoscopies and

bloodwork show no sign of the disease at all - complete remission just from

eliminating gluten from my diet!

So I hope your biopsies prove you don't have it, but if you do, I'll be glad to

help in any way I can. Most importantly, by Bette Hagman's Gluten Free

Gourmet cookbook and start ordering from missrobens.com.

Take care.

[Guest guest]

Dear , Tim R., Dave et al.,

Thanks to all who replied to my Celiac disease post. Yesterday I received an

email from my doctor with the report that I dodged the Celiac bullet and that

the biopsies looked " quite normal. " I was quite surprised since I had

managed to convince myself otherwise.

, I am glad to hear that you have had so much success with the gluten

free diet. In the time between my biopsies and yesterday's email, I did

manage to learn that there are quite a few resources for those with celiac.

This was very encouraging.

Best Wishes,

Shauna (29, AIH'86, Crohns'95, PSC'99, listed @ Duke, MELD =18)