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

Gi Doc Said Dont Need To Eat Gluten For Blood Test?

tbradley93

Recommended Posts

tbradley93 Apprentice
tbradley93
Posted

I read on this forum that you need to eat wheat (gluten) to get an accurate result for blood panel. My GI doc said that as long as it hasnt been 3 years w no gluten the test would still pick up the antibodies he is looking for.

I guess it really doesn't matter b/c he said either way the results go he will still do the endoscopy and test my intestines (I think I said that right).

Has anyone got a pos blood panel after not eating gluten for a little over a month? I have had an accident on halloween where I took a bite of a candy bar that had gluten in it.

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

Celiac.com Sponsor (A8-M):


dolly Apprentice
dolly
Posted

I am not a doctor so I don't know for certain, but that doesn't sound correct to me. Hopefully, more knowledgable others on this board will respond. Good Luck!!

Ursa Major Collaborator
Ursa Major
Posted

Unfortunately, this doctor doesn't have a clue what he is talking about. Three years? By then your intestines will be perfectly healed, and you'd be told you definitely don't have celiac disease, even if you do.

After being gluten-free for a month you will likely get a false negative on your blood tests, possibly even on your endoscopy, unless the damage was very severe to begin with.

Yes, you absolutely have to eat A LOT of gluten to test positive. After being gluten-free for a month, probably four slices of bread for about three to six months might result in an accurate test result.

Your only chance of getting accurate results at this point would be to get tested with Enterolab.

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted

The endoscopy is the "gold standard" for diagnosis right now (so I'm told) so as long as he does that you should know for sure. I have read that you have to be ingesting gluten for at least 2 months (I think it was) to get accurate, no fail blood test results. I know my doctor told me that 1 year after diagnosis he will order another blood test for me and as long as I am successful with following the diet then the test should be completely normal. So I don't think the 3 years amount is correct. Like Dolly though, I'm not a doctor. I can only share what I have learned over the last six months. Good luck!

I read on this forum that you need to eat wheat (gluten) to get an accurate result for blood panel. My GI doc said that as long as it hasnt been 3 years w no gluten the test would still pick up the antibodies he is looking for.

I guess it really doesn't matter b/c he said either way the results go he will still do the endoscopy and test my intestines (I think I said that right).

Has anyone got a pos blood panel after not eating gluten for a little over a month? I have had an accident on halloween where I took a bite of a candy bar that had gluten in it.

Ursa Major Collaborator
Ursa Major
Posted
The endoscopy is the "gold standard" for diagnosis right now (so I'm told) so as long as he does that you should know for sure. I have read that you have to be ingesting gluten for at least 2 months (I think it was) to get accurate, no fail blood test results. I know my doctor told me that 1 year after diagnosis he will order another blood test for me and as long as I am successful with following the diet then the test should be completely normal. So I don't think the 3 years amount is correct. Like Dolly though, I'm not a doctor. I can only share what I have learned over the last six months. Good luck!

Well, you don't seem to understand that the blood tests after a year are supposed to tell the doctor if you've followed the diet. If you have been cheating and haven't healed as a result, your blood tests could come back elevated. If, on the other hand, you've been strictly gluten-free, your numbers should be in the normal range.

The three years are garbage. Most people heal perfectly within six months to a year. Only older people with a lot of damage over many years might never heal properly, because of permanent damage. And then of course those unfortunate people who have refractory sprue, who will never heal.

And you can never get 'no fail' blood test results, as they aren't all that reliable. Neither are the biopsies, as the damage is so easily missed.

nora-n Rookie
nora-n
Posted

I think they actually call it refractory celiac disease if there is still damage after three years off gluten...

Sometimes people post on the forums with something like that, but it is rare.

nora

tbradley93 Apprentice
tbradley93
Posted
  • Author

the doc did say that I need to eat wheat the night before the endoscopy procedure. He said that the damage is done right after I eat the wheat product.

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

Celiac.com Sponsor (A8-M):


Ridgewalker Contributor
Ridgewalker
Posted
the doc did say that I need to eat wheat the night before the endoscopy procedure. He said that the damage is done right after I eat the wheat product.

:o Well, now THAT is definitely wacky. . :( So he's saying you don't need to eat gluten for a blood test, but you do for an endoscopy- but just right before the procedure? This is nonsense.

First of all, it takes consistent ingestion of gluten to raise antibody levels and cause intestinal damage.

Secondly, what would that prove? That gluten still causes damage? ie- That you still have Celiac? Of course you do, you have it forever.

:( I am generally hesitant about badmouthing doctors, but this one truly sounds like he doesn't know what he's talking about.

The only point of having further endoscopies would be to see how well you're healing- which, with your level of damage, I don't blame you for wanting to do, for your peace of mind!

Edit-- Actually, I have no idea what level of damage you have, or if this is your 1st endoscopy- got you mixed up with someone else there for a sec ;) Sorry. Doesn't really affect anything else I said above.

nora-n Rookie
nora-n
Posted

Some researchers take biopsies and then expose the biopsies to gluten or lgiadin and then measure the antibodies with immunfluorescence.

Only then would the test be accurate, if you happen to be a subject in one of these studies......

They do not do that in us ordinary patients (yet)

The researchers are also in the middel of studies for a new test, where you must have been gluten-free for at least a week and then they measure freshly activated T cells in resposne to gluten:

Open Original Shared Link

nora

Joss Rookie
Joss
Posted

Your GI man must have gone to school with my idiot doctor because he told me that if I am truly gluten intolerant, there are always detectable traces of gluten anitbodies. I tokld him he was an idiot, nicely of course.

ravenwoodglass Mentor
ravenwoodglass
Posted
The endoscopy is the "gold standard" for diagnosis right now (so I'm told) so as long as he does that you should know for sure.

The endo may be the gold standard for diagnosis but it is not as accurate as you think. The endo and blood tests can tell you that you definately have full blown celiac but they can not rule it out if they are negative. Also many GI do not recognize the many forms of damage that are seen before you get to the point where you are almost dead. I have actually heard a GI tell a family member that they were not celiac...yet. The guy said if they wanted they could keep eating the gluten until the biopsies showed positive. Celaic has to be one of the few disease in the world where doctors want us to be almost ready to die before they will confirm we have it.

The best diagnostic tool, IMHO, is your bodies reaction to being gluten free and then perhaps a SHORT gluten challenge (until you react) after your problems have resolved a bit. Enterolab is also another valid route to diagnosis, and you don't have to be poisoning yourself to do the tests.

Tequila Newbie
Tequila
Posted

I was symptomatic for a week before i got the blood tests. My mother has celiac so I knew what to look for, didn't even see the dr. Just called her and told her to order the tests. They were all positive. I'll never know if they would have been positive the week before, but I had sudden onset of digestive symptoms. So hard to know how long they had been building up. Anyway, I went gluten-free right away. It was pretty easy since I knew what to do. Not that its that easy getting used to eating rice bread :D . Three months later all blood tests negative, and biopsy was negative also after three months. Hope that helps. I have also heard varying ideas on how long you must ingest gluten. I've heard that the damage can appear immediately. Not sure about that, but sure feels like it does. For sure the blood tests would take longer, it takes a while for the immune response to build up. How long that is I'm not sure, I have not read a study on that. I would have offered to be a guinea pig but the GI docs don't seem to be interested in learning anything new.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to KathyR37's topic in Coping with Celiac Disease
      3

      New here

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    2. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    3. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      3

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
    4. Scott Adams
      - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      3

      New here

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are fee...
    5. KathyR37
      - KathyR37 posted a topic in Coping with Celiac Disease
      3

      New here

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,814
    • Most Online (within 30 mins)
      7,748
    ColbyBowlin
    Newest Member
    ColbyBowlin
    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
      New here

      By trents · Posted

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      New here

      By KathyR37 · Posted

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
×
×
  • 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.