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
      131,667
    • Most Online (within 30 mins)
      7,748

    bailey1023
    Newest Member
    bailey1023
    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

    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.