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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,566
    • Most Online (within 30 mins)
      7,748

    Rrenee2990
    Newest Member
    Rrenee2990
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
×
×
  • 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.