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Anyone Thought Of Making A Packet For Doctors And Patients?

Offthegrid

By Offthegrid
in Coping with Celiac Disease

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Offthegrid Explorer
Offthegrid
Posted

I remember I spoke to the doc, he said I can't eat gluten, I said, "but what will I eat?" and he basically gave me no advice and referred me to a dietitian, whom I got to see over a month later.

Has anyone thought of creating a gluten-free information packet for doctors to hand out to patients?

It could include info on local support groups, this forum, local stores to buy gluten-free flours from, ratings of a few gluten-free products, any gluten-free restaurants in the area and the names of the best gluten-free cookbooks.

I wonder if I made something up like this if my doctor would use it. He's super nice, so he might -- I'll see him again in March.

(I'm not involved in the local support group because it only meets every other month.)

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Lisa Mentor
Lisa
Posted

Yes, the Celiac Disease Foundation is doing great work in this area.

I have been a member of the CDF and also serve as a local contact. Through membership you are sent a great newsletter with the current publication material, restaurants, product news, chef's corner, book reviews, helping others, food label undates, etc.... I reference their newsletter quite often here. There ongoing goal is to get information into the doctors offices, healthfood stores and markets.

Please check out their site at: Open Original Shared Link

They do GREAT work.

DebJ14 Enthusiast
DebJ14
Posted
I remember I spoke to the doc, he said I can't eat gluten, I said, "but what will I eat?" and he basically gave me no advice and referred me to a dietitian, whom I got to see over a month later.

Has anyone thought of creating a gluten-free information packet for doctors to hand out to patients?

It could include info on local support groups, this forum, local stores to buy gluten-free flours from, ratings of a few gluten-free products, any gluten-free restaurants in the area and the names of the best gluten-free cookbooks.

I wonder if I made something up like this if my doctor would use it. He's super nice, so he might -- I'll see him again in March.

(I'm not involved in the local support group because it only meets every other month.)

When I got my results back my doctor sat down with me for an hour and went over the specifics of the diet. He gave me a really good explantion of how the gluten attacks the body as well as web references where I could learn more about gluten free eating. He also gave me a list of restaurants in our area with a gluten-free menu, a list of food items that I could find locally and a list of books that he believed to be excellent resources. He also provided a list of sources of hidden gluten and gave me specific brand names of products that were safe. He also gave me the list of the terms that are often found on products that contain gluten, but you would never know it. All of the information was in a handout so that I did not have to worry about remembering everything he said.

He has started a support group for his patients. We get together quarterly for an informative talk on issues relating to gluten (such as other disease associated with eating gluten, nutrition etc.) and everyone brings a gluten-free dish to share and copies of the recipes to exchange. It is a good opportunity to network with others who understand the struggle. Also, when we come across a good gluten-free food we turn in the name of the product, where we found it, and the price to his office. They keep an updated list available to the patients. I would recommend that you suggest the handout to your doctor. I still put mine out if I have a question about something.

Debbie

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