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Newbie Question: How Long Glutening Before Blood Test?


huevo-no-bueno

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huevo-no-bueno Apprentice

Hello, I'm new, and sorry if my post is redundant.

I am getting the celiac panel blood test tomorrow. My doctor, who is generally very well informed and up to date, said I don't have to be eating gluten before the test.

I was IgA-gliadin positive four years ago, but due to all-around ignorance, I was not given the rest of the panel. I was gluten-free for less than a year, and decided to eat it again because I only had the one test. I have now been on gluten for three years.

About three weeks ago, I drastically limited all grains in my diet in an effort to clear up my skin--my whole gluten free experiment from '04 was the last thing on my mind. A bunch of telltale symptoms improved. I told my doctor. She ordered the celiac panel for Monday. This was last Thursday.

During my two weeks without much grains, I ate wheat on two of those days and felt awful. Since Thursday, I've been eating wheat at every meal, since I hadn't had any in about a week or so prior. I feel awful, and I'm wondering if it is bad enough to not get a false negative. Mind you, I'm eating a lot of wheat right now, and prior to my recent almost-gluten-free experiment, I was eating a lot of wheat for three years.

What do y'all think?

By the way, I'm also very allergic to eggs--hence the forum name. :)


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happygirl Collaborator

If the purpose of the testing is to screen for Celiac Disease, then you MUST be eating gluten for the tests to be accurate. The antibodies that are tested are in response to gluten.....take gluten out, and eventually, the antibodies disappear.

If the purpose of the testing is to confirm that you have healed from Celiac Disease, then you should remain on the diet.

I would have a discussion with your doctor about this.

The blood tests include:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

from: www.wikipedia.org (search for coeliac disease)

"The level of symptoms may determine the order of the tests, but all tests lose their usefulness if the patient is already taking a gluten-free diet."

from: 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."

Open Original Shared Link

"If your doctor thinks you have celiac disease, you will probably need a blood test. You will need to follow your regular diet before and while being tested. If you don

huevo-no-bueno Apprentice

Thank you for the links. I will print them out and show them to Dr.

Ursa Major Collaborator

If you have been eating a lot of gluten for three years, and have limited gluten for three weeks (but weren't really entirely gluten-free), and have been eating it again for these past days, you probably will still get accurate test results. Just make sure you get the whole panel done.

If you want to get the biopsy as well, you will have to continue eating gluten until after the biopsy.

Seeing your bad reaction to gluten, you probably should stop eating it again right after the biopsy (without waiting for results first), as at the least you are obviously intolerant to gluten.

huevo-no-bueno Apprentice
If you have been eating a lot of gluten for three years, and have limited gluten for three weeks (but weren't really entirely gluten-free), and have been eating it again for these past days, you probably will still get accurate test results. Just make sure you get the whole panel done.

If you want to get the biopsy as well, you will have to continue eating gluten until after the biopsy.

Seeing your bad reaction to gluten, you probably should stop eating it again right after the biopsy (without waiting for results first), as at the least you are obviously intolerant to gluten.

Thanks. I'm getting the full panel this time. I'm fairly certain it will lead to scheduling the biopsy. I feel way worse after re-introducing gluten than I felt while I was on it. I don't think I can do this much longer. I'd rather stay in bed <_< Hope I can get that done as soon as possible. I'd like to stop eating gluten after the blood test, but I won't.

ravenwoodglass Mentor
Thanks. I'm getting the full panel this time. I'm fairly certain it will lead to scheduling the biopsy. I feel way worse after re-introducing gluten than I felt while I was on it. I don't think I can do this much longer. I'd rather stay in bed <_< Hope I can get that done as soon as possible. I'd like to stop eating gluten after the blood test, but I won't.

Be aware that there are many reasons for false negatives on the blood tests, and biopsy as well. It sounds like you have had a positive reaction to a gluten challenge. There are doctors that will confirm your diagnosis based on that. I also hope they can get you in for a biopsy asap, it is pretty clear gluten is toxic to you.

huevo-no-bueno Apprentice

Thanks for your support here....

I'm still waiting; and this is a three-day weekend so I'm hoping that I get my results in the mail on Tuesday.

In the meantime, I am eating gluten, and I am so bleeping tired and even a bit weepy.

My appointment with the gastroenterologist is Feb. 27. That's not the biopsy, that is just the first appointment. I'm hoping that after I get the bloodwork back I can get in sooner, so I can get all of this over with. I absolutely cannot tolerate being this tired, bloated, etc. The headaches are nauseating. C alternates with D and alternates with "ribbony." I am in a haze at work; I haven't gone to the gym since before the Super bowl; I have this weird sense of doom. The worst part is being so tired, like I can hardly drag myself around.

Ugh.

Cross your fingers that I'm able to get biopsied and through this mess by the end of the week! I know that's an ambitious wish but I want relief!


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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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