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

I Want To Prove To Doc That One Must Eat Gluten Before Blood Tests


Karagirl

Recommended Posts

Karagirl Newbie

Hello...

I've been gluten free for 4 years, it has changed my life. I live in a new place, so new doc. This doc wants to re-order all tests and another biopsy as he suspects IBS instead. (I found out the medication I was taking contained wheat starch and I had this one really terrible episode of diarrhea and abdominal pain in November. Pharmacy said, it was gluten free-manufacturer of drug said it did have wheat...so I was taking it for 2 weeks as I got sicker and sicker) Forget the fact that I have lived with this disease and biopsy 4 years ago showed celiac. He ordered the blood work, I asked if I had to eat wheat-and was told no. I've just cancelled all my tests, biopsy...this is nuts...I'm not asking him for a second opinion on a proven diagnosis.

Is there a sight with lab protocol I could copy to educate this doctor? I'm not going back to him, but I also want to write a nice letter explaining why I am confident he is not the doctor for me.

Thank you!


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

From Dr. Peter Green of Columbia University's Celiac Disease Center:

Open Original Shared Link

"A gluten-free diet should not be started until all diagnostic tests are completed, as the withdrawal of gluten can change test results."

This is also re-iterated in his book, Celiac Disease: A Hidden Epidemic

From the National Foundation for Celiac Awareness:

Open Original Shared Link

"It is important to continue eating a normal, gluten-containing diet before being tested for celiac."

From the National Institute of Health's consensus statement on Celiac Disease, 2004

Open Original Shared Link

"All diagnostic tests need to be performed while the patient is on a gluten-containing diet."

Celiac Disease Foundation

Open Original Shared Link

"A person seeking preliminary diagnosis of celiac disease must be consuming gluten."

loco-ladi Contributor

Personally I dont think I would be as nice as you and want to explain to him why... nicely. I do believe he would have heard my thoughts on the matter right after he opened his mouth and all the bull flew out (lol)

But then again I have had my fair share of foolish male doctors tell me I am wrong, granted sometimes I am but that doesn't give them any right to ignore what I think. I now take my own health into my own hands and have found I do a pretty good job and have now found at least 1 doctor who listens objectivly and conciders my opinion and research... to bad I am going to loose them soon (sigh) oh well off to the yellow pages for interviews.

kbtoyssni Contributor

Yeah, I don't think I would have been so nice, either :) Why the heck does he want to re-prove you have celiac? You had a positive biopsy four years ago - that's the current medical "golden" standard - what more does he want??? And say he changes your diagnosis to IBS. Where does that leave you? Probably taking drugs and not feeling that much better. I'm strongly on the side of IBS being a description of symptoms, not a cause of symptoms, and, yes, many celiacs display IBS symptoms. Good for you not going back to him, and for trying to educate him on your way out. It's obvious this guy doesn't know much about the disease.

Karagirl Newbie

Wow...thank you for the excellent links, for the words of encouragement and the support. I have been so angry about this doctor visit. And I've had enough of doctors right now... UGH.

tarnalberry Community Regular

I'd look at him and say "Uh, you're testing me for ANTIBODIES. How am I supposed to have ANTIBODIES if I don't have the thing that causes them to be produced in my system?! This isn't like TB, where you produce antibodies forever and ever."

GlutenWrangler Contributor

I'd tell him to go back to medical school because he obviously didn't learn anything the first time around.


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



Celiac.com Sponsor (A8-M):



nora-n Rookie

Here are some university lectures for your doctor about celiac diesase, over one hour, on youtube

Open Original Shared Link

found at the delphi celiac forum.

nora

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,215
    • Most Online (within 30 mins)
      7,748

    toni tay
    Newest Member
    toni tay
    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

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.