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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,065
    • Most Online (within 30 mins)
      7,748

    Hoops
    Newest Member
    Hoops
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
    • Colleen H
      Hi everyone  This has been a crazy year so far... How many people actually get entire sensory overload from gluten or something similar ?  My jaw is going nuts ..and that nerve is affecting my upper back and so on ...  Bones even hurt.  Brain fog. Etc  I had eggs seemed fine.   Then my aid cooked a chicken stir fry in the microwave because my food order shorted a couple key items .   I was so hungry but I noticed light breading and some ingredients with SOY !!! Why are we suffering with soy ? This triggered a sensitivity to bananas and gluten-free yogurt it seems like it's a cycle that it goes on.  The tiniest amount of something gets me I'm guessing the tiny bit of breading that I took one tiny nibble of ...yikes ..im cringing from it .. Feels like my stomach is going to explode yet still very hungry 😔  How long does this last?! Thank you so much 
    • Scott Adams
      This is an older article, but may be helpful.  
    • gfmom06
      I have had orthodontic work done. The 3M invisalign material was no problem. BUT my retainers are another matter. They seemed okay for a few months. Now, however, they cause a burning sensation on my tongue, gums and insides of my lips. The burning sensation is now spreading to my throat. I notice it when I breathe. This is annoying and interferes with my enjoyment of eating. I am visiting with my provider tomorrow. We'll see where this goes from here.
×
×
  • 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.