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

Celiac Disease Vs Gluten Sensitivity - Please Help!

cami

Recommended Posts

cami Rookie
cami
Posted

After >10 yrs of health issues (mainly diarrhea, bloating, periodic weight loss, loss of energy, anemia, excema etc) which both I and my Dr thought were related to some GI-problem, I believe I have identified the cause... Dr thought IBS first, then some other food intolerance. About a year ago I started to suspect gluten. After removig it totaly from my diet I got SO much better. Called the Dr again, who was supportive and ordered test & a biopsy - went back on gluten for a couple of monthe (which was horrible). Tests came back borderline and the biopsy was clear, som my Dr said: "No celiac disese, but you may be sensitive to gluen anyway, so you might want to cut down..." But whenever I have pasta or bred it starts again. Not directly, but within a week or so. So, I called my Dr again and she said: "Actually there is no such thing as gluten sensitivity... There is celiac disease, which you don't have..." Please help me out:

1) Is it scientifically proven thet non-celiac gluten sensitivity really exists?

2) If yes, can I eat pasta etc every now and then or do I need t be as strict as someone with celiac disease?

I would really appreciate your opinions on this!!!

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

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

I think you already know the answer to this. Gluten makes you sick. You can't eat it. Your doctor can only say that there was no evidence of destruction to your villi on the pieces that they took. There is no way to know what's going on in the rest of your intestine. Also, even if you aren't destroying your intestine, gluten makes you sick. You can't eat it.

tarnalberry Community Regular
tarnalberry
Posted

Well, there's no scientific definition of non-celiac gluten-sensitivity. So technically, there can't be "proof".

There is, however, scientific evidence of villious atrophy concordant with celiac disease that resolves on a gluten free diet in the absence of the celiac genes. There is scientific evidence of varying levels of villious atrophy. There is scientific evidence of false negatives for both the blood test (varying reasons, including insufficient damage to the intestines and high references ranges in some labs) and the biopsy (again, varying reasons, including varying levels of damaged required to be categorized as damage and the chance of missing patchy damage by only taking a few spots to biopsy). And, there is scientific evidence that YOUR BODY does not like - at the least - wheat containing items. (The dietary challenge is a VALID DIAGNOSTIC TOOL.)

The problem with the label "celiac disease" is that some doctors are *very* literal. The classic diagnosis requires specific levels of damage to sufficient amounts of the intestines. Kinda like asking "are you bald?" to someone in the middle of balding. There isn't room in the literal definition for "gluten damages me, but not bad enough to pass your test, yet".

You know you don't do well with wheat - so listen to your body and get rid of it from your diet. Whether it's more than just wheat... well, you haven't talked about reacting to other gluten sources, so my suggestion would be to test them. That runs you the risk of making you feel crappy again, so it's a very personal decision.

Chicklet Rookie
Chicklet
Posted

I have this book ~ Open Original Shared Link and the author makes a case for gluten sensitivity before celiac. It's a good book you might want to see if your library has it or you might want to buy it.

Sensitive or celiac a gluten free diet is a must.

Nancym Enthusiast
Nancym
Posted

Isn't it amazing how our bodies can speak to us so clearly, so compellingly, yet we don't trust them as much as some doctor who spend 11 minutes in medical school on the subject celiac disease, 20 years ago. :P

cami Rookie
cami
Posted
  • Author

Hi everyone,

thank you so much for you replies. Point taken - I should trust my body! I just need to know... Sure, I feel crappy if I eat pasta for a couple of days, but, is it dangerous.. I mean, REALLY dangerous. I'm thinking of the kind of illnesses that I read are connected to celiac disease: cancer, arthrithis etc...??

Jestgar Rising Star
Jestgar
Posted
Hi everyone,

thank you so much for you replies. Point taken - I should trust my body! I just need to know... Sure, I feel crappy if I eat pasta for a couple of days, but, is it dangerous.. I mean, REALLY dangerous. I'm thinking of the kind of illnesses that I read are connected to celiac disease: cancer, arthrithis etc...??

The only way you'll ever really know is by getting one of these. Is it worth it?

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.

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. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley...
    2. MogwaiStripe
      - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease. Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/
    3. Scott Adams
      0

      Tahini Swirl Fudgy Brownies (Gluten-Free)

    4. Butch68
      - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too. is this everyone’s experience? Can I drink it? I get dermatitis herpetiformis and don’t get instant react...
    5. trents
      - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,216
    • Most Online (within 30 mins)
      7,748
    Athenablue
    Newest Member
    Athenablue
    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

    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Gluten Issues and Vitamin D

      By MogwaiStripe · Posted

      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Guinness, can you drink it?

      By Butch68 · Posted

      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.