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

How Long Do I Need To Torture Myself With Gluten Before My Blood Test?


H moma

Recommended Posts

H moma Newbie

I have been Gluten-free for 2 months and feel great. My doctor recently ordered a blood test to verify my self-diagnosis. I know I need to be on a gluten containing diet in order for the test to be accurate, but my question is how long before my test do I need to torture myself with gluten? Are we talking a few days or months? I am wondering if it is even worth it? I don't want to feel like that for months just to verify what I already knew.

Anyone have an exact timeline/suggestions?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

4 slices of bread a day for 2 to 3 months. Even then you may have a false negative. If the blood work is positive the doctor may want you to continue on gluten to get the biopsy which could also be a false negative. Only you can decide if it is worth it. If your doctor is willing to test your vitamin and mineral panels and to schedule a scan for osteoporosis without the challenge then if you have seen great results on the diet you don't really need the doctors permission to eat gluten free. It can be helpful in getting other first degree relatives to be tested, as they should, but sometimes your recovery will be enough to encourage them. Also some doctors will diagnose based on the resolution of symptoms gluten free and the reoccurance of problems when gluten is added back in. You may want to talk to you doctor about that.

Kay DH Apprentice

I started with GI symptoms last September after getting the flu, and some high stress from people trying to kill me on my bike commute home (geez, you think they would leave an older woman on a bike lane alone). I started gluten-free about a month after onset of symptoms (other than the undiagnosed DH symptoms I'd had for a few decades). The Celiac panel blood test 2 months after gluten-free was negative, perhaps because I was gluten-free. Six months after gluten-free I went to a GI for my multitude of symptoms (which were gone when I went gluten-free) and he dismissed all of them and said I have diverticulitis (infected pockets in large colon). He also said I only need to be gluten-full for 1 week before the endoscopy for a positive reaction. Needless to say he was wrong. I was sick for the week before the colonoscopy/endoscopy, the diverticulitis was negative, and he only did one duodenum biopsy in the wrong place and it was negative. Only positive was minor GERD. So, I probably have Celiac but will never know because there is no way I'm going to make myself sick for the +3 weeks of +4-slices-of-white-bread-a-day diet needed to nudge a positive antibody result on endoscopy tests. Make sure that your GI is knowledgeable in Celiac, otherwise you may be wasting your time. Make sure he/she takes multiple biopsies, as well, and that you get the full results. Best wishes on your quest for knowledge. It is not fun, but it is good.

  • 4 weeks later...
helen82 Newbie

I started with GI symptoms last September after getting the flu, and some high stress from people trying to kill me on my bike commute home (geez, you think they would leave an older woman on a bike lane alone). I started gluten-free about a month after onset of symptoms (other than the undiagnosed DH symptoms I'd had for a few decades). The Celiac panel blood test 2 months after gluten-free was negative, perhaps because I was gluten-free. Six months after gluten-free I went to a GI for my multitude of symptoms (which were gone when I went gluten-free) and he dismissed all of them and said I have diverticulitis (infected pockets in large colon). He also said I only need to be gluten-full for 1 week before the endoscopy for a positive reaction. Needless to say he was wrong. I was sick for the week before the colonoscopy/endoscopy, the diverticulitis was negative, and he only did one duodenum biopsy in the wrong place and it was negative. Only positive was minor GERD. So, I probably have Celiac but will never know because there is no way I'm going to make myself sick for the +3 weeks of +4-slices-of-white-bread-a-day diet needed to nudge a positive antibody result on endoscopy tests. Make sure that your GI is knowledgeable in Celiac, otherwise you may be wasting your time. Make sure he/she takes multiple biopsies, as well, and that you get the full results. Best wishes on your quest for knowledge. It is not fun, but it is good.

It took you for a long time to turtune yourself with Gluten before your blood test. I just only need 2 weeks.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,571
    • Most Online (within 30 mins)
      7,748

    Ygomez
    Newest Member
    Ygomez
    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

    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      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
      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
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      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.
×
×
  • 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.