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

Doctor Not Following Through


j9n

Recommended Posts

j9n Contributor

I am concerned that my doctor is not following through with me. I am basically left alone. I did get a prescription to a dietitian but I had to ask for it. Last month before changing my diet I was so very sick. I had such horrible diarrhea for a couple of weeks and the pain was so bad I could not even walk, I felt like my intestines were raw. Then I started getting feverish and I have tiny red blood blisters on my legs. I did get an appointment with my gyn who put me on antibiotics and pain meds. I am slowly getting better with a very careful diet and vitamins.

Shouldn't the doctor be watching me for other signs of malabsortion? Right now my diet is pretty limited since I am trying to heal and I am starting to lose weight again. I don't even have a followup appointment.

Also shouldn't my son be tested too? He definitely shows signs. As a child we had a hard time keeping weight on him, he gets pimple like sores on his legs and back and around his mouth that don't respond to antibiotics (I have even taken him to a dermitologist who could not get rid of them). Right now is the first time in his life he is gaining weight. He is almost 16 and is on the high school wrestling team. He eats alot more but his diet is very high protein and not alot of junk food. He does get very tired and sleeps alot, over 12 hours on the weekends.

I am curious what other doctors did after diagnosis. I know I am not going back to this one but I don't know where else to go. Also did they do tests for other food allergies? I seem to be getting more and more sensitive to preservatives. I guess I am not quite sure what to do next.


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

I have had no follow up either, but I was never very sick at all. I think that my internist, the one who DXed me, just wasn't concerned enough by my inconclusive test results (though she accepted the results of the dietary challenge) and otherwise fairly good health to check on anything else. She's just an internist, and isn't _that_ knowledgeable on celiac disease, though she tries, so I figure if I want to get further tested, I'll ask her. You might try asking your doc - or, like you said, finding one who will better treat your case.

gf4life Enthusiast

My GI doctor after concluding that all my test were normal, except my Enterolab test which she dismissed, said I had IBS and she would see me in a year! I was still sick at that point, but was starting the gluten-free diet. I was a little annoyed, since I had wanted some tests to check for nutritional deficiencies, but figured that I could handle it on my own. I'm doing fine, except for the occasional accident with gluten or dairy. But I feel much healthier... I would still like a bone scan and some other tests, but if no one will order them I can't get them done...

I would find a new doctor if possible if I were you, or ask for a follow-up appt. if it is not possible to get another doctor. I personally don't want another follow-up with my doctor and she is the second referral I've gotten. I just don't feel sick enough anymore to go pester the doctors for more tests or a new referral.

God bless,

Mariann

Guest gillian502

I would absolutely insist on a follow up appt, and if they won't see you find another dr. I push for everything I need medically and do not take no for an answer, because I would've lost my life if I had. If you're enough of a pest, they will relent and test you properly, especially if you're as ill as it sounds like you are.

  • 2 weeks later...
eternity Explorer

My son was dx about three weeks ago. His doctor called me and said he was positive for celiac disease and that was it - no follow up, no suggestions, recommendations, nothing. She also did not want to test my other children since she didn't feel they were exhibiting the SAME symptoms. ( I know you can be asymptomatic). I had to insist they be tested and I am still waiting for results.

I was totally left on my on. Someone recommended Betty Haagmans gluten-free book so I used that and celiac.com's list of safe and not safe list to get me started.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,565
    • Most Online (within 30 mins)
      7,748

    Gma Marsh
    Newest Member
    Gma Marsh
    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

    • 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.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • 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.