Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
Karagirl
Posted

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
happygirl
Posted

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
loco-ladi
Posted

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
kbtoyssni
Posted

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
Karagirl
Posted
  • Author

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
tarnalberry
Posted

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
GlutenWrangler
Posted

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
nora-n
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,341
    • Most Online (within 30 mins)
      7,748
    Jim Caputo
    Newest Member
    Jim Caputo
    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

    • trents
      Gluten exposure when trying to conceive

      By trents · Posted

      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
    • Skydawg
      Gluten exposure when trying to conceive

      By Skydawg · Posted

      Wondering about some thoughts on how long to wait to try to get pregnant after a gluten exposure?  I have been diagnosed for 10 years and have followed the diet strictly. I have been cross contaminated before, but have never had a full on gluten exposure. I went to a restaurant recently, and the waiter messed up and gave me regular bread and told me it was gluten free. 2 hours later I was throwing up for the whole evening. I have never had that kind of reaction before as I have never had such a big exposure. My husband and I were planning to start trying to get pregnant this month. My dr did blood work to check for electrolytes and white blood cells, but did not do a full nutritional panel. Most of my GI symptoms have resolved in the past 2 weeks, but I am definitely still dealing with brain fog, fatigue and headaches. My dr has recommended I wait 3 months before I start to try to get pregnant.   I have read else where about how long it can take for the intestine to fully heal, and the impacts gluten exposure can have on pregnancy. I guess I am really wondering if anyone has had a similar experience? How long does it take to heal after 1 exposure like that, after following the diet so well for 10 years? Is 3 months an okay amount of time to wait? Is there anything I can do in the meantime to reduce my symptoms? 
    • ShadowLoom
      Gluten Free Cannabis Edibles

      By ShadowLoom · Posted

      I’ve used tinctures and made my own edibles with gluten-free ingredients to stay safe. Dispensary staff don’t always know about gluten, so I double-check labels or just make my own.
    • Scott Adams
      Damage after 13 years gluten free

      By Scott Adams · Posted

      It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.
    • RMJ
      Damage after 13 years gluten free

      By RMJ · Posted

      Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
×
×
  • Create New...