Re: newly diagnosed, more questions & thanks

[Guest guest]

I really appreciate all the responses I've gotten. Thank you. I hadn't thought to just google "celiac kitchen" - too obvious, I guess! I was just looking at the "official" sites (celiac.org, nih, mayo, etc.).

My kids are being tested this week (as are my two sisters and my mom) - the basic antibody tests plus the test for the genetic markers. If they don't have it, and it doesn't threaten my health to do so, I would prefer not to completely limit their in-house diet to gluten-free. All of your suggestions for labeling foods clearly, putting the gf foods on the top shelf in a shared pantry, getting a dust vac and separate colanders, etc, are fantastic. Thank you.

Does anyone have advice about a follow-up plan - that is, after diagnosis and starting the gf diet, what kind of follow-up plan should I expect (demand?) of my physician. I've read that I should have a bone density test. Anything else? I've already had a ton of blood work (including lots to do with liver function) and nothing's unusual except for the one thing that set me on the path of discovering I have celiac (very low B1 levels, which one doctor dismissed as lab error even though a basic google search linked low B1 to my one and only symptom!). I'm at Kaiser and I owe getting diagnosed in 7 months to our refusing to accept there wasn't an answer to why my B1 levels were low and to one nutritionist (who I insisted on seeing) who immediately thought of celiac. So I know how proactive I am going to have to be.

Also, does anyone know of a live support group? I think it would help me sort through some of the emotions I'm having as I start on this gf path. Being careful about my diet isn't completely new to me - I'm a "vegaquarian" (no chicken or meat) - but obviously going gf is much more difficult and, ultimately, more important to get completely right. I'm alternately ok and freaked out.

Thanks again.

Tristan

**************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001)

[Guest guest]

I missed something -- what liver disorder do you have? If you can tell me, I can give you a better idea of where to look for a support group.

I have autoimmune hepatitis. Both CD and AIH were diagnosed at Kaiser in San Francisco, incidentally.

H.

In a message dated 3/25/08 7:32:31 PM, TrVerb@... writes:

does anyone know of a live support group?

**************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001)

[Guest guest]

Oh! "Live" support group - as in, in person; not liver! But thanks for trying to help!

Tristan

In a message dated 3/25/08 9:46:58 PM, flatcat9@... writes:

I missed something -- what liver disorder do you have? If you can tell me, I can give you a better idea of where to look for a support group.

I have autoimmune hepatitis.  Both CD and AIH were diagnosed at Kaiser in San Francisco, incidentally.

H.

In a message dated 3/25/08 7:32:31 PM, TrVerb@... writes:

does anyone know of a live support group?

**************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001)

[Guest guest]

Sorry - I thought it was a typo!

H.

In a message dated 3/26/08 12:12:33 PM, TrVerb@... writes:

Oh! "Live" support group - as in, in person; not liver! But thanks for trying to help!

Tristan

**************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001)