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

Going About Things The Wrong Way?

coconut12

Recommended Posts

coconut12 Newbie
coconut12
Posted

Hi!

I was wondering if anyone here has skipped the blood test and biopsy and gone straight to the enterolabs test?

I'm considering doing this because I went to a dr. who suggested celiac and told me to go gluten-free. I did about 10 days ago, and am no longer bloated and gassy and have only had ONE migraine since! I had been having migraines almost daily.

Now that I'm off gluten and have seen such an improvement, I'm reluctant to go back on it. I don't want to go back to the migraines at all.

So, I was wondering if I can stay gluten-free, take the enterolabs test and still get accurate results?

Thanks for any help.

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

Enterolabs says they can detect antibodies for a little while after going gluten free.

But you already have a very positive test - dietary response. You can, if you want, choose to stay gluten free based just on that. Enterolab doesn't diagnose celiac disease (just gluten intolerance) because it's not an intestinal biopsy. But the diet requires no prescription.

coconut12 Newbie
coconut12
Posted
  • Author

Enterolabs says they can detect antibodies for a little while after going gluten free.

But you already have a very positive test - dietary response. You can, if you want, choose to stay gluten free based just on that. Enterolab doesn't diagnose celiac disease (just gluten intolerance) because it's not an intestinal biopsy. But the diet requires no prescription.

Thanks for your response!

I'm thinking that I'm just going to forget getting an accurate test. I went back on gluten so that I could have the bloodwork done and maybe a biopsy, and I'm feeling like I'm dying. I know that's an exaggeration when I think about it logically, but that's how I feel.

I can't believe how bad I feel. I feel like it's hard to breathe and my whole body hurts. My vision is blurry. I have no interest in doing anything.

I'm really frustrated because I have been going to my family doctor for about a year telling her that something was really wrong, then I went to a neurologist for migraines and was diagnosed with peripheral neuropathy and even that didn't get a reaction from her. I went to an integrative medicine doctor a few weeks ago and he suggested celiac and to go gluten-free. I did, and had an immediate return of my interest in things and some improvement in the numbness in my toes (maybe due to the magnesium and b vitamins he put me on)--not to mention, I only had one migraine during the time I was gluten-free. But I know if I don't get a firm diagnosis my family doctor is not going to believe me.

I'm confused about what I should do. But I don't think I can continue to eat gluten in order to get a diagnosis. Am I just being a wimp?

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. melthebell
      - melthebell replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Persistent isolated high DGP-IGG in child despite gluten-free diet

      Thanks very much for taking the time to write this. I have been pretty worried so appreciate reading any advice. Yes, the endoscopy will include a biopsy, and we have hopefully found a good pediatric gastro to guide us through it all. Will also run the HLA typing - I have the swabs ready to go.
    2. trents
      - trents replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Persistent isolated high DGP-IGG in child despite gluten-free diet

      Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years...
    3. melthebell
      - melthebell posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Persistent isolated high DGP-IGG in child despite gluten-free diet

      Hello community; it's nice to have found you. I am a 42 year old biopsy confirmed celiac. I have had it since I was 18. Well managed on a gluten free diet. No idea if I have the gene (presume I do) as never tested. Diagnosed as was anaemic and had a high celiac market (can't recall which), and a positive biopsy. Asymptomatic. Given this, I regularly...
    4. trents
      - trents commented on Scott Adams's article in Winter 2026 Issue
      4

      Why Celiac Diagnosis Still Takes Years—and How to Change That

      @par18, I don't totally disagree with what you say in theory. But like many things in life, one size doesn't fit all. While a formal diagnosis of celiac disease or NCGS is certainly not essential since, in the big picture of things, eliminating gluten is the antidote to either, there are some other considerations that give importance to seeking a formal diagnosis...
    5. Jmartes71
      - Jmartes71 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      Domino's and Mountain Mike also has glutenfree pizza.However the issue is the cross contamination. Not worth a few minutes of yum yums i n the taste buds with a painful explosion later.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,498
    • Most Online (within 30 mins)
      7,748
    genliu
    Newest Member
    genliu
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • melthebell
      Persistent isolated high DGP-IGG in child despite gluten-free diet

      By melthebell · Posted

      Thanks very much for taking the time to write this. I have been pretty worried so appreciate reading any advice. Yes, the endoscopy will include a biopsy, and we have hopefully found a good pediatric gastro to guide us through it all.  Will also run the HLA typing - I have the swabs ready to go.
    • trents
      Persistent isolated high DGP-IGG in child despite gluten-free diet

      By trents · Posted

      Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years to manifest to the point of being detectable and where symptoms are minimal or absent. At 10 years old, his immune system may not be mature enough het to trigger the usual IGA responses that the IGA celiac tests are designed to detect.  I would also have genetic testing done to confirm that he has or doesn't have the potential to develop celiac disease. The genetic profile can also offer insight into the type of celiac disease a person will develop if they ever convert from latent to active. Take a look at table 2 under the section "Types of Celiac Disease" in the article found in this link: https://pmc.ncbi.nlm.nih.gov/articles/PMC9980758/  Genetic testing is available from 3rd party labs. I think you just have to send in a cheek swab sample.
    • melthebell
      Persistent isolated high DGP-IGG in child despite gluten-free diet

      By melthebell · Posted

      Hello community; it's nice to have found you. I am a 42 year old biopsy confirmed celiac. I have had it since I was 18. Well managed on a gluten free diet. No idea if I have the gene (presume I do) as never tested. Diagnosed as was anaemic and had a high celiac market (can't recall which), and a positive biopsy. Asymptomatic. Given this, I regularly test my two children. My eldest is the child in question. First tested at age 5 due to slight anaemia. Everything negative except for a slightly high DGP IGG (slightly elevated at 25). Not IGA deficient. Did a biopsy with a pediatric gastro, was negative. Next test at age 8. Everything once again negative, high DGP IGG at 116 U/ml this time. Living in a country now with no celiac knowledge so decided to whack him on a gluten-free diet and see how he goes. Next test at age 9 after a year on gluten-free diet. Everything once again negative, high DGP IGG at 174 U/ml this time! On a gluten-free diet. Final test was a week ago at age 10, on continued gluten-free diet. Once again a positive DGP IGG, this time over 250 U/ml. On a gluten-free diet. what the heck is going on with my kid? We have seen a pediatric gastro via telehealth, who was equally puzzled and suggested doing a gluten challenge and an endoscopy, which we have schedule for end of April. Kid is otherwise fine. Energetic and growing well. No significant gastrointestinal symptoms. Has anyone encountered something like this before?
    • Jmartes71
      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      By Jmartes71 · Posted

      Domino's and Mountain Mike also has glutenfree pizza.However the issue is the cross contamination. Not worth a few minutes of yum yums i n the taste buds with a painful explosion later.
    • Scott Adams
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      I don't recall seeing "many people here recommending RO water," but reverse osmosis (RO) water is water that has been purified by forcing it through a very fine membrane that removes dissolved salts, heavy metals, fluoride, nitrates, PFAS, and many other contaminants. It is one of the most thorough household filtration methods available and can be especially beneficial in areas with well water or known contamination concerns. While RO systems also remove beneficial minerals like calcium and magnesium and may produce slightly “flat”-tasting water, most dietary minerals come from food rather than drinking water, so this is not usually a health concern for most people. Overall, RO water is very clean and safe to drink, and it can be a smart option where water quality is questionable, though it may not be necessary in areas with well-tested municipal water.
×
×
  • 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.