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

Gluten Free For Starters


skbird

Recommended Posts

skbird Contributor

Hi! I went to my GP last month and he'd told me that I was the most successful person in the past 5 years he's recommended a gluten free diet to, which sort of surprised me. But I've been thinking about it a lot and think it might be because these newly diagnosed people he sees don't get support after diagnosis. So, after considering for a while, I sent him an email last week saying that I'd be happy to talk with anyone he diagnoses and maybe work up a "for beginners" kind of packet, with Celiac.com, books, etc, together to help them out. I have a pretty good idea of where to start with this but thought if anyone else had any suggestions, that would be really cool.

He just wrote me back and is very excited that I would want to do this and has said he'll give me a heads up before giving out my phone number. I think this is a cool thing.

We don't have a support group in my area and I'm not ready to do something like that yet, but maybe if this arrangement works out and helps someone, I'd be in to that. Anyway, any suggestions, references, etc, would be appreciated.

Thanks!

Stephanie


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

This is a really good idea. I've helped some local people informally and others helped me when I started. Forums are a huge help, but there's nothing like having somebody in the area you live.

richard

Canadian Karen Community Regular

Hey Stephanie! I think that's a great idea! Every little bit helps......

Just make sure you include this website in your package - we're always here for help and support......

Hugs.

Karen

Guest imsohungry

What a great opportunity!!! B)

I have found the information from websites and REAL "everyday" people the most helpful. What I received from the nutritionist was useless...wasted 75 bucks there. :rolleyes:

So, I think it is a great idea! (plus it doesn't cost anything for the person you are helping).

I would make sure to include an updated list of companies that label gluten ingredients clearly on their label...that was a HUGE help to me (and another money saver). When I first started out, I didn't think I could buy any "regular" products, so I was buying EVERYTHING from the expensive/specialty section, :o so it is very helpful (and less intimidating) to know that some labels on "everyday" items are clearly marked. ;)

Gosh, the list could go on and on! Good luck to you! :)

skbird Contributor

I think I read somewhere that someone on the same insurance plan I'm on (Blue Shield of CA) said they're not covered for a nutritionist unless they are dx as diabetic! What?!? Like gluten intolerance/Celiac isn't just as important, diet-wise? Then of course getting a nutritionist in the know... that's another thing.

I plan on putting this forum, plus the other two forums I'm on on the list, some of the web sites I've found helpful, and then lists, a book list (making sure I don't put on the books we have noted on this list to have errors or be misleading), which companies don't hide gluten, the deal with oats, and recommendations, like how to make your kitchen safe, how you need your own toaster, new pans (not using old non-stick ones), cross contamination issues, what restaurants have gluten free menus, which ones are gluten-friendly, etc etc etc. I think it will be a fun project and it will make me feel good about passing on info I have accumulated so far.

This will be fun! :D

Stephanie

Guest imsohungry

Yep Steph-

My insurance didn't cover the nutritionist...she was a sweet woman, but I wasted my $$$ big time. :rolleyes:

This sounds like a fun project to do...and if ya gotta have celiac disease, you might as well help others and use all this info. you've spent so many hours to gather...plus, it's got to make you feel good to help others! :)

Much luck. -Julie

jenvan Collaborator

that's awesome stephanie :)


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



Celiac.com Sponsor (A8-M):



Guest kmmolina
that's awesome stephanie :)

<{POST_SNAPBACK}>

That is great Stephanie. What a wonderful thing to do. There is no support group that I know of in my area either and this website has been such a big help. I had been think about doing the same thing with my docotr but I think I'm too new to this yet. But I am going to give him the address to this website. It is awesome and so are all of you. I have learned so much more by reading the postings then I have anywhere else. I feel so blessed that I was led to the website and that somebody at work showed me what the message board was all about. I thought it would be one one of those wierd chat room thing...but it's not....it wonderful.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    2. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

    3. - trents replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

    4. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

    5. - trents replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748

    IleneG
    Newest Member
    IleneG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
×
×
  • 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.