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

Information For Doctors?


lonewolf

Recommended Posts

lonewolf Collaborator

Hi all,

I'm taking all 4 of my kids to the pediatrician tomorrow with a request that they all be tested for Celiac. I'm already getting the feeling that the clinic thinks I'm a little crazy. I rarely take my kids in for anything, my 14 year old hasn't seen any doctor for 2-1/2 years, my 12 year old not for a year and the younger ones only once or twice in the past 2 years. The nurse who called me several times obviously knows absolutely NOTHING about celiac disease and can't figure out why I want them tested if they don't have serious problems with diarrhea. So, my question is...

Does anyone know of a brochure or simple 1-2 page write up about celiac disease that I could take with me to show the doctor? I have lots of information, but I don't want to go in with the WSJ article and have him think that I'm just a hypochondriac. I still haven't been tested, because when I called my doctor weeks and weeks ago, they said they couldn't get me in until the 22nd. Funny, when I've needed to be seen in the past (it's been at least 2 years since I've been myself) I've been able to get in within a couple of days. I wanted to get tested first and then be able to tell the pediatrician that I have celiac disease (or gluten intolerance or something they will believe) and I wanted my kids to be tested. There is no question that I have a problem with gluten, but I have no "offficial" diagnosis.

If my kids were younger, I'd just put them on a gluten-free diet, but you can't just do that to 12 and 14 year olds without good reason. They are agreeable about being tested, and say they will stick to gluten-free if they have to, but only IF they have to. Those of you with kids know that you can't make a 14 yo do something they don't want to do without a REALLY good reason.

Any suggestions? I know this is a late request, but the appointment time kind of snuck up on my with my hectic week last week.

Thanks,

Liz


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



Celiac.com Sponsor (A8-M):



Nantzie Collaborator

I have found this from the NIH (National Institutes of Health), which is a .gov rather than a .com to be a very concise, clear, and relatively inclusive description of celiac. The NIH is part of the U.S. Department of Health and Human Services. So if a doctor won't take that as a credible resource, I don't know what it would take.

Open Original Shared Link

I took this with me to my first doctor's appt and used a pink highlighter to highlight my symptoms and some key points I wanted the doctor to notice. Turns out my doctor was very open about testing me and I didn't need to drive any points home, even though she didn't know much about it. So I was very lucky.

Hope everything goes well.

Nancy

lonewolf Collaborator

Thank you!!!

Liz

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. - Anne G posted a topic in Related Issues & Disorders
      0

      celiac disease and braces

    2. - trents replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    3. - HAUS posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    4. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    5. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,434
    • Most Online (within 30 mins)
      7,748

    Malia Ana
    Newest Member
    Malia Ana
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Anne G
      Hello, My 17 yr old daughter was diagnosed with celiac disease 2 yrs ago. She does not have gum disease and no history of cavities. Her dentist is recommending braces for her lower teeth but I read it may worsen gum recession or possibly increase cavity risk which I know are already issues for patients with celiac. Has anyone here had braces and did it cause any problems or issues with gum recession?  Her dentist seemed oblivious that celiac patients are at higher risk of gum disease /cavities. Her bottom teeth are crooked but are pretty hidden even when she smiles. Thank you!!
    • trents
      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
×
×
  • 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.