Celiac disease?

The Coffee Shop
1

Anybody dealing with this, or know someone who is?

One of my friends’ baby son just got diagnosed. Looking for some good resources, maybe some meal ideas, stuff like that?

Thanks!

2

I am dealing with it right and losing. I just love the wheat too much. It is very livable with and when I get my act together I will give more ideas.

3

I do not have personal conections, but work in Pharmaceuticals treating Ulcerative Colitis, I will check for additional resources on Monday when I get to work, but for now:

The Mayo clinic is a great starting place for info:

http://www.mayoclinic.com/health/celiac-disease/DS00319/DSECTION=1&

And Napghan is an non-profit orginization dedicated to childhood GI disorders,

http://www.naspghan.org/sub/celiac_disease.asp

My colleages were just at a Napghan confrence last month, and I know they have some additional info, so I will to get back to you.

Mark

4

One of my best friend’s mom has this disease. I believe it is Cilliac Sprue or something of that nature. I could have misspelled it. Anyhow, she got this disease about 8 or 9 years ago. In fact, she almost died because she got a lot of the secondary stuff because it affected her immune system. She started a network here in Southeast MI called the Cilliac Sprue Society (or something like that). They have meetings and classes and a support network. She has become VERY hardcore about it. But I guess you sort of have to when your health depends on it. The next time I see her, I’ll find out what her organization is and post the details.

Bernie

5

I have it - being diagnosed was simply the best thing to ever happen to me.

If you have any specific questions I’ll be more than happy to answer.

6

Hi there,

check your pm.

Kale

7

Check your PM. Email me back if you wish…

8

Another good site for general information, also links to recipes.

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

http://www.csaceliacs.org/recipes.php

I looks like several people with personal experience have contacted you, and that you should have access to most of the information you need, but I have one additional point to share. The current treatment for Celiac is the avoidance of Gluten in all forms, but there is currently quite a bit of research into potential medical interventions. Recent advances in the treatment of other immunological diseases such as Rheumatoid Arthritis, Crohn’s, and Ulcerative Colitis, do offer significant hope that Celiac will have therapies available in less than 10 years. Current research into enzymic treatments, peptide analogs; and other biologic therapies, are at an early stage but are very encouraging in paving a way for an alternative treatment for celiac disease.

Best wishes for you friend and his son.

If you have any questions that my ‘nerdy’ background could help with please feel free to ask,

Mark

9

Thanks to everyone for your responses so far. I will forward the info to my friends.

The good news is the boy is home from the hospital and recovering well, while Mom & Dad study up and learn some new recipes!

Another good thing from the Peaceful Tribe!

10

There is article in today’s Wall Street Journal. Let me know if you can’t access this link. I can email it to you.

http://online.wsj.com/article/SB113408786563817920.html?mod=todays_us_page_one

11

not particularly helpful, but i know that it’s incredibly common in finland, for some reason. when you call the pizza shop for a delivery they’ll ask if you want it celiac-friendly.

-mike