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My 18 yr. old daughter was diagnosed with Celiac Sprue a couple of weeks ago. It's been kind of a relief to finally have an answer to why she can't gain weight and has been so sickly, but since she already has several other medical problems (Stickler's related back & joint problems as well as Von Willibrand's disease) it was not like we really needed another medical condition to contend with. We will cope, as we don't have a choice.

I'm sure all on the list can appreciate how much of a shock all the changes she will have to make are, but just the one week I have been on the list has given me hope that this adjustment will not be as difficult as first anticipated. Never the less, we are somewhat at a loss to know where to begin.

I would like info on any stores that sell GF products in Oregon & local resources for coping. We are in the Portland Metro area. 
We do have a Trader Joe's out here, and Nature's Fresh NW, neither of which I feel comfortable shopping at (especially Nature's) but will do so if that is necessary.

I also have names of several contacts in the Portland Metro area from the Oregon contact list and will be trying to contact them soon, but would greatly appreciate input from those in the young adult age bracket on how she can cope.

Also, my mother-in-law, who is an excellent cook, has volunteered to make bread for my daughter, but needs recipes. Any suggestions?

Please feel free to reply off list.

Sincerely,

Shelly Moore - President 
Oregon Chapter National Marfan Foundation.

(Tentatively Stickler diagnosed, along with 3 kids {ages 18, 16, 15} also tentatively Stickler diagnosed, husband Marfan affected.)

Have-A-Heart for Marfan's! 
Learn More about Marfan's Syndrome at http://www.marfan.org 
Also visit the Oregon web site at http://oregonchapternmf.homestead.com 

Stick together to help those with Stickler's Syndrome! 
Visit the Stickler Involved People's site at http://www.sticklers.org/sip/

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