6 week challenge; How much gluten?

[Pinkdoglady]

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  

 

[trents]

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]

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]

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]

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]

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]

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  

 

[trents]

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 April 5 by trents

[Pinkdoglady]

Thank you

the reference range was 0.1 to 3.9

[trents]

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.