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

Doctors?


blueshift

Recommended Posts

blueshift Apprentice

I don't quite understand why someone should go to the doctor for diagnosis. Every time I went to them I got nothing but shrugs and " irritable bowel syndrome" like everyone else here..When I threw all my symptoms at them, they just called it "normal" and a part of getting old..Besides, I passed my physicals, didn't I?

By knowing that my niece was diagnosed with it...that another niece has had 7 spontaneous abortions, along with gut problems in siblings, myself, etc..I couldn't fathom going back to them with anything to do with my gullet..

The symptoms are fading fast..Isn't that enough? The test involves taking some into my body and I will not tolerate my bowel obstructing again like it has daily for the last 56 years..I feel better than ever and will not tolerate eating that poison again.


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

Yea...those types of doctors aren't the ones you want to go to. I go to a doctor because he can monitor the medical aspect of this much, much better than I can and because my doctor is EXTREMELY knowledgeable about celiac disease... (part of the Celiac Disease Center at Columbia University).

But go with your gut! :lol: (no pun initially intended, but then I thought it was funny)

If you feel good without gluten, then that's reason enough to stay gluten-free.

ianm Apprentice

I don't have an official diagnosis and doctors were of absolutely no help to me. I am healthier at 37 than I was at 17 and that is all that matters.

plantime Contributor

If you accept the diagnosis your body is giving you, you don't need a doctor's. I am glad you are feeling so much better!

skbird Contributor

I'm not officially diagnosed, either. I did tell my doctor I was feeling better after going gluten-free for two weeks and asked if I could have tests and he said that actually, seeing a change on a diet is as good a diagnosis as any other - keep it up for 6 months and reevaluate. At that time I did the EnteroLab test and found some answers to how I have been feeling so that is good enough for me. I haven't gone back in to see my doctor since I went gluten-free but have been thinking of going in to discuss this with him. I have been trying to decide if it's worth paying for the appointment to get his stamp of approval or not, and I'm just not sure that's the case. I'll probably go in eventually.

Stephanie

marycubs Rookie

Hi -

I also was disappointed in the way two of my doctors were so quick to label it IBS and then just say 'deal with it'. As my health got worse I investigated the web and self diagnosed myself and did find a GI that knew of the disease and did a biopsy to confirm.

I've decided to try to educate people I know about celiac disease. (I've labeled myself the Ambassador of celiac disease) :P I sent an email to my primary doctor informing him of the diagnosis and my disappointment that it wasn't found earlier. I also told him that celiac disease is more common than originally thought of and I hope that as he sees patients in the future that he will remember celiac disease as a possible diagnosis.

He responded positively - said that he is open to his patients 'teaching' him. I know many doctors may not be open to our feedback - but I feel that if all of us with celiac disease make the effort to educate the health care professionals, our families and friends, than over time people will become more aware of this disease.

Mary

lovegrov Collaborator

Mine is a mixed tale. I got DH while I was in my 20s and although my doctor tried and tried to get me to go gluten-free, he also never told me about the celiac link. None of my doctors did. All I knew was that dapsone took care of the DH. I wish I had known more earlier.

However, when I DID suddenly get very ill from celiac, my GI did quickly find the reason and he told me to go gluten-free for the rest of my life. None of this stuff about going gluten-free for a while and then trying to eat gluten again. In addition, doctors for ALL of my first-degree relatives readily agreed to test them. My father, who had no obvious symptoms other than DH, was positive on everything.

richard


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,598
    • Most Online (within 30 mins)
      7,748

    Caroline Alexandria
    Newest Member
    Caroline Alexandria
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
    • Scott Adams
      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
    • Scott Adams
      I understand why that feels concerning. Some Schär products use specially processed wheat starch that has had the gluten removed to meet strict gluten-free standards (under 20 ppm in the U.S. and EU), which is why they can legally and safely be labeled “gluten free” for people with celiac disease. However, wheat must still be listed in the ingredients and allergen statement because it is derived from wheat, even though the gluten protein has been removed. For individuals with a true wheat allergy, these products are not appropriate—but for those with celiac disease, properly tested gluten-free wheat starch is considered safe under current medical guidelines. That said, it’s completely reasonable to prefer products made without wheat starch if that gives you greater confidence, and clearer front-of-package communication could certainly help reduce confusion for shoppers.
    • elisejunker44
      I have enjoyed Schar's gluten free products for years. However, some items Do contain Wheat and are not clearly labeled on the front. Indeed the package states 'gluten free' on the front, and it is not until you read the ingredient label that one see's wheat as the first ingredient. Some celiacs may be willing to take a chance on this 'gluten free wheat', but not me. I strongly feel that the labeling for these wheat containing products should be clearly labeled on the front, with prehaps a different color and not using the 'no gluten symbol on the front. The products are not inexpensive, and also dangerous for my health!
×
×
  • 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.