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

6 week challenge; How much gluten?


Pinkdoglady

Recommended Posts

Pinkdoglady Newbie

Hi everyone, I’m new to the forum. I had a positive blood test for celiac disease two weeks ago and I’m waiting for a biopsy date. The Dr advised me to eat gluten until then but how much gluten should I eat ? Or rather, how little can I get away with eating? I’m on the verge of not being able to go to work :( 

 


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Recently updated "gluten challenge" guidelines recommend the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) daily for at least 2 weeks leading up to the test day. That's for those who have been gluten free for a significant time and are seeking an official diagnosis through testing. 

Your case is different in that you have not been eating gluten free and have already tested positive in the blood antibody test phase of diagnosis. I would say, just keep eating like you have been and don't cut back. If it turns out that the endoscopy/biopsy date isn't until far out into the future, you have the option of temporarily going gluten free and then starting backup in time for the procedure. But would give it at least four weeks to be sure.

Parkrunner Newbie

You didn't say how long you have to wait for your biopsy.  I had to wait 5 months.  And then it was another month for my intestines to heal and for me to have the benefit of being gluten free.  Everyone is different.  I know one guy that told me it took 2 years of gluten-free to be free of symptoms.

You have a choice here, wait for the biopsy and endure your symptoms, or simply accept that the positive blood test is most likely, but not necessarily 100%, correct and go gluten-free now.  In retrospect I wish I had not waited for the biopsy, or found another doctor that could perform it sooner.

Read as much scientific based data as you can digest.  There are also a number of good videos on the internet on the subject.

Scott Adams Grand Master

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

  • Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
  • Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

Pinkdoglady Newbie

Thank you everyone for your answers, they were all very helpful, and some very useful links. I am rethinking the value of having the biopsy as I’m not sure it will give any actual benefits. 

trents Grand Master

In some countries, like the UK, there are tangible benefits to having an official celiac diagnosis such as government stipends to offset the cost of gluten free food and supplemental follow-up care. Also, some people find it difficult to stay on the gluten free bandwagon without an official diagnosis. But I hear you. If the toll on your health and livelihood is too great to stay the course with the gluten challenge until the biopsy, it isn't smart to do so.

By the way do you have access to the celiac antibody blood test scores? Along with the reference ranges? We don't know where you live but in Europe it is becoming increasingly common for physicians to declare an official diagnosis of celiac disease based on the blood test alone if the TTG-IGA score is 10x normal or greater.

Pinkdoglady Newbie

Hi

my blood result were

Ser Tiss transglutimate >100

for the endomysial antibody lga is just says positive

I don’t know how celiac this makes me :) 

 


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



Celiac.com Sponsor (A8-M):



trents Grand Master
(edited)

Do you have a reference range for the Serum Tissue Transglutimate? Different labs used different reference ranges so just giving the raw score of >100 is necessarily helpful. And the terminology they employed for that one is unusual. So, I'm not sure if they are referring to what we call "total IGA" or what we abbreviate normally as TTG-IGA? I think it is the latter and the "greater than" symbol suggests it exceeded the scale they were using. If I'm correct in this assumption, that is a very strong indicator of celiac disease and may qualify you for an official diagnosis without an endoscopy/biopsy. It is becoming increasingly common in Europe and the UK to declare an official diagnosis of celiac disease when the TTG-IGA score is 10x normal or greater.

But that aside, your endomysial antibody IGA is positive and that is the most accurate test available for celiac disease. It's a more expensive test to run and isn't run as often as it used to be. It has largely been replaced with the TTG-IGA.

There is no question in my mind that you have celiac disease.

You might want to confer with your physician for greater clarity as well as options.

 

Edited by trents
Pinkdoglady Newbie

Thank you

the reference range was 0.1 to 3.9

trents Grand Master

Okay, then. It definitely looks like TTG-IGA to me and your score far exceeds the 10x or greater that is becoming the new standard for official celiac disease diagnosis criteria without biopsy. 

Talk to your physician about this.

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Lotte18's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      New painkiller, Journavx

    2. - Scott Adams replied to AllyJR's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Confused about my results

    3. - Lotte18 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      New painkiller, Journavx

    4. - Lotte18 replied to FayeBr's topic in Coping with Celiac Disease
      4

      Corn reaction and ataxia

    5. - Scott Adams replied to NightRaven92's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      I am wondering if my symptoms are Celiac Disease related..


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,632
    • Most Online (within 30 mins)
      7,748

    Laszlo
    Newest Member
    Laszlo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/  When I looked this one up I didn't see any gluten ingredients.
    • Scott Adams
      Your situation is actually more common than many realize, and while confusing, there are logical explanations for your test results. The key points are that your biopsy showing villous blunting and increased lymphocytes does indicate intestinal damage typically seen in celiac disease, despite your negative blood tests. This phenomenon is known as seronegative celiac disease, which affects about 10% of celiac patients. Your partial HLA-DQ2 genetic result doesn't rule out celiac either, as a small percentage of celiac patients don't have the complete genetic markers. The fact that you've responded so dramatically to a gluten-free diet is another strong indicator that this is likely celiac disease rather than NCGS, since NCGS doesn't usually cause intestinal damage. Your doctor might consider ordering additional tests like IgG-based celiac tests (tTG-IgG or DGP-IgG), or repeating the endoscopy after you've been gluten-free for a longer period to check for healing. Many celiac specialists would actually diagnose you with celiac disease based on your biopsy results combined with your positive response to the gluten-free diet, regardless of the blood test results. It may be worth consulting with a gastroenterologist who specializes in celiac disease for further evaluation. Your experience highlights why celiac disease can be so challenging to diagnose and why doctors need to look at the whole clinical picture rather than relying on any single test.
    • Lotte18
      Hi all, I have to have gum surgery tomorrow and was wondering if I should ask for this new drug, Journavx, instead of Vicodin.  I tried looking it up online and got, Not gluten free.  There is no gluten in the ingredients for this drug.  ????  Has anyone else had experience with Journavx?  Advice?   Many thanks, Charlotte
    • Lotte18
      Hi Faye,  Sorry I didn't see your post sooner.  I suffered from ataxia as well.  None of my drs. thought it was dairy.  They were wrong.  Turns out lactose intolerance was the cause.  Pancreas just isn't making the enzymes like it used to.  I now drink lactose free milk for the calcium and eat lactose free yogurt by Green Valley, when I can find it.  My ataxia problems vanished.  Hope this helps.
    • Scott Adams
      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.    
×
×
  • Create New...