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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    2. - tiffanygosci posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Aldi Pueblo Lindo Yellow Corn Tortillas

    3. - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    4. - trents replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    5. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,974
    • Most Online (within 30 mins)
      7,748

    LRB
    Newest Member
    LRB
    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

    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
    • Mari
      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
×
×
  • 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.