Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone Thought Of Making A Packet For Doctors And Patients?


Offthegrid

Recommended Posts

Offthegrid Explorer

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.)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Lisa Mentor

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
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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,054
    • Most Online (within 30 mins)
      7,748

    SteveWW
    Newest Member
    SteveWW
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
    • Colleen H
      Hi everyone  This has been a crazy year so far... How many people actually get entire sensory overload from gluten or something similar ?  My jaw is going nuts ..and that nerve is affecting my upper back and so on ...  Bones even hurt.  Brain fog. Etc  I had eggs seemed fine.   Then my aid cooked a chicken stir fry in the microwave because my food order shorted a couple key items .   I was so hungry but I noticed light breading and some ingredients with SOY !!! Why are we suffering with soy ? This triggered a sensitivity to bananas and gluten-free yogurt it seems like it's a cycle that it goes on.  The tiniest amount of something gets me I'm guessing the tiny bit of breading that I took one tiny nibble of ...yikes ..im cringing from it .. Feels like my stomach is going to explode yet still very hungry 😔  How long does this last?! Thank you so much 
    • Scott Adams
      This is an older article, but may be helpful.  
    • gfmom06
      I have had orthodontic work done. The 3M invisalign material was no problem. BUT my retainers are another matter. They seemed okay for a few months. Now, however, they cause a burning sensation on my tongue, gums and insides of my lips. The burning sensation is now spreading to my throat. I notice it when I breathe. This is annoying and interferes with my enjoyment of eating. I am visiting with my provider tomorrow. We'll see where this goes from here.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.