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

Blood Test While On Gluten Free Diet?

yellowbird22

Recommended Posts

yellowbird22 Newbie
yellowbird22
Posted

I just went to the doc. today. I've been eating gluten free for a month with wonderfull results. After explaining my situation, he said it sounded a lot like Celiac. He drew blood to test for antibodies even though I've been gluten free for almost a month. He said that it could still show antibodies. Has this happened for anyone else?

Anyway he told me to start eating gluten again and we'll do a biopsy in a month unless the blood test is positive in which case I'm dx celiac. I started eating it again earlier today and I've already had D twice in the past 2 hours, my stomach hurts, my body hurts, and I have a headache. I thought it would at least take a few days of eating it again that I'd feel sick! I don't know if I'll last a month....

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
I just went to the doc. today. I've been eating gluten free for a month with wonderfull results. After explaining my situation, he said it sounded a lot like Celiac. He drew blood to test for antibodies even though I've been gluten free for almost a month. He said that it could still show antibodies. Has this happened for anyone else?

Anyway he told me to start eating gluten again and we'll do a biopsy in a month unless the blood test is positive in which case I'm dx celiac. I started eating it again earlier today and I've already had D twice in the past 2 hours, my stomach hurts, my body hurts, and I have a headache. I thought it would at least take a few days of eating it again that I'd feel sick! I don't know if I'll last a month....

Yellowbird:

It never seems to mystify me why doctors recommends that we continue to destroy our intestines.

You may have not been TOTALY gluten free for the month before testing. It is very complicated and it involves your shampoos, creams, lipstick, gloss, soy sauce, Worcester sauce and the list goes on and on. Your blood work may be positive. The blood test will rule in celiac, but it does not necessarily rule it out. It can be a false negative, due to your gluten free status.

Many people here are self diagnosed because they consider a positive dietary response a confirmation of Celiac, is not a gluten intolerance.

If the gluten diet is too much for you to handle. Tell you doctor. He wants you go eat gluten, level your villi, create damage, so he can confirm it through a scope, which it itself is not always conclusive?

If this sounds harsh, it is not my intent. I was close to being hospitalized and was sent to a GI and was diognoses with Celiac...I had no ideas what it was.

Do some reading here. The citizens here are the best in the world and we all share a commonality.

Kaycee Collaborator
Kaycee
Posted

Yellowbird, I had a blood test about a month after starting the gluten free diet, and the results came back positive, but not overly high. The doctor said there was no doubt in his mind that I had coeliac. I have since had two other blood tests at about 3 months and four monts gluten free and they were positive, but the antibody levels were going down.

I think everyone is different, and what happened to me might not happen in your case.

And like you, when I did eat gluten by accident, the reactions happened within two to three hours, as in feeling yuck, headachy and the diarhoea about a day or so later.

So hold in there and hopefully you will have your answer sooner, rather than later.

Cathy

VydorScope Proficient
VydorScope
Posted
I just went to the doc. today. I've been eating gluten free for a month with wonderfull results. After explaining my situation, he said it sounded a lot like Celiac. He drew blood to test for antibodies even though I've been gluten free for almost a month. He said that it could still show antibodies. Has this happened for anyone else?

Anyway he told me to start eating gluten again and we'll do a biopsy in a month unless the blood test is positive in which case I'm dx celiac. I started eating it again earlier today and I've already had D twice in the past 2 hours, my stomach hurts, my body hurts, and I have a headache. I thought it would at least take a few days of eating it again that I'd feel sick! I don't know if I'll last a month....

couple thoughts...

First.. only a month off the gluten, you might still get a positive blood test. So it does not hurt... well not much :) to try.

Second... skip the biopsy. Bisopy can never rule out celiac disease, only confirm a dx, so, IMO its not a real useful test and it is not with out its risks.

Third... You eat gluten, you get sick. You do not eat gluten, you do not get sick, right? So, umm, why would you want to eat gluten? Really the best test in most cases is the diet its self. You just did that and confirmed you do have a problem with gluten. What ever label they want to put on it does not matter in the end. IMO, stop eating gluten and tell the doc your content with the diet testing.

NOTE:I am not a doctor, nor do I play one on tv/internet. Just a father of a 3yr old with celiac disease.

cchhrriiss Newbie
cchhrriiss
Posted

Momma Goose, Do you think that is so important?..."".You may have not been TOTALY gluten free for the month before testing. It is very complicated and it involves your shampoos" I mean shampoo, does it matter? It's hard to find a shampoo that is wheat free, if you have dry hair. I'm not sure? :)

yellowbird22 Newbie
yellowbird22
Posted
  • Author
couple thoughts...

Third... You eat gluten, you get sick. You do not eat gluten, you do not get sick, right? So, umm, why would you want to eat gluten? Really the best test in most cases is the diet its self. You just did that and confirmed you do have a problem with gluten. What ever label they want to put on it does not matter in the end. IMO, stop eating gluten and tell the doc your content with the diet testing.

NOTE:I am not a doctor, nor do I play one on tv/internet. Just a father of a 3yr old with celiac disease.

Yes I totally agree with this. I have been thinking a lot about this today and I have talked with my family about it. It makes SO much more sense to just forget the "official" diagnosis and just do what feels right. It's just such a weird thing when your doc tells you DO THIS and you know that makes no sense. But I should be the last person to listen to docs because 90% of them have diagnosed me incorrectly in the past...

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,561
    • Most Online (within 30 mins)
      7,748
    lamps
    Newest Member
    lamps
    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

    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      Roommate search

      By ckeyser88 · Posted

      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • 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.