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

Newbie Question: How Long Glutening Before Blood Test?


huevo-no-bueno

Recommended Posts

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. :)


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



Celiac.com Sponsor (A8-M):



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!


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



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,089
    • Most Online (within 30 mins)
      7,748

    Clare Durham
    Newest Member
    Clare Durham
    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

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.