Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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):
    GliadinX

    Celiac.com Sponsor (A1-M):
    GliadinX

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

A Question About Gluten Intolerance V. Celiac

emcmaster

Recommended Posts

emcmaster Collaborator
emcmaster
Posted

I've not been formally diagnosed. I had a colonoscopy & endoscopy in July 2005, but the doctor said he didn't find anything. I went gluten-free as a last resort to heal my pain in April '06.

My question: Is it possible that there wasn't enough damage done when my doctor did the tests? Does gluten intolerance (because I'm positive I have at least that, if not celiac) do damage to the villi as well? Is it possible my doctor missed it?

Thanks :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Little Northern Bakehouse
Food for Life

Celiac.com Sponsor (A8-M):
Food for Life

CarlaB Enthusiast
CarlaB
Posted

It is possible your doctor missed it. The blood tests and biopsy can prove you have celiac but cannot rule it out. Dietary response is the best indicator. The current tests only can pick up celiac when it is relatively progressed -- the intestine is already damaged badly. Even then it can miss the damage as every square inch of intestine is not necessarily affected ... they can take the biopsy from a healthy spot. If you stopped eating gluten and got healthy, you need to be gluten-free. Whether it's celiac or gluten intolerance is only a matter of semantics. Technically speaking, since they found no damage in me (I was already gluten-free and did an inadequate gluten challenge), I'm gluten intolerant. However, my symptoms are those of a so-called classic celiac and I have autoimmune antibodies, so the gluten is doing more damage than just causing me discomfort.

oceangirl Collaborator
oceangirl
Posted
  CarlaB said:
It is possible your doctor missed it. The blood tests and biopsy can prove you have celiac but cannot rule it out. Dietary response is the best indicator. The current tests only can pick up celiac when it is relatively progressed -- the intestine is already damaged badly. Even then it can miss the damage as every square inch of intestine is not necessarily affected ... they can take the biopsy from a healthy spot. If you stopped eating gluten and got healthy, you need to be gluten-free. Whether it's celiac or gluten intolerance is only a matter of semantics. Technically speaking, since they found no damage in me (I was already gluten-free and did an inadequate gluten challenge), I'm gluten intolerant. However, my symptoms are those of a so-called classic celiac and I have autoimmune antibodies, so the gluten is doing more damage than just causing me discomfort.

Hi, Elizabeth!

I had an endo and colonoscopy after being mostly gluten-free for 3 months and they were negative. I, too, did a gluten challenge, but lasted only three days as the pain was so severe I almost went to the hospital. I was "diagnosed" by Enterolab as "having two genes for gluten intolerance." (same as Carla- DQ1,1 subtypes 5, 6) No one can convince me that gluten is not damaging to me. My list of symptoms prior to giving up gluten has twenty things on it. I am still not great, but at least 3/4 of those symptoms are gone.

Good luck and feel well.

lisa

emcmaster Collaborator
emcmaster
Posted
  • Author

Thanks Carla and Lisa!

I have autoimmune thyroiditis/hypothyroidism, which was diagnosed when I was in high school. I hadn't had my thyroid tested in a while when I tested last fall. The tests came back that my antibody levels were in the 600's (from what I understand, normal is 35 or lower). Do you think this is a cause/effect of the celiac/gluten intolerance? Both of my parents have hypothyroidism.

oceangirl Collaborator
oceangirl
Posted
  emcmaster said:
Thanks Carla and Lisa!

I have autoimmune thyroiditis/hypothyroidism, which was diagnosed when I was in high school. I hadn't had my thyroid tested in a while when I tested last fall. The tests came back that my antibody levels were in the 600's (from what I understand, normal is 35 or lower). Do you think this is a cause/effect of the celiac/gluten intolerance? Both of my parents have hypothyroidism.

Elizabeth,

Ooh, I don't know but it seems there have been people on here talking about their thyroid issues. Do you have a knowledgable celiac/intolerance doctor? It seems you should check with a doctor. Sorry I'm not more help- maybe someone else will post.

lisa

emcmaster Collaborator
emcmaster
Posted
  • Author
  oceangirl said:
Elizabeth,

Ooh, I don't know but it seems there have been people on here talking about their thyroid issues. Do you have a knowledgable celiac/intolerance doctor? It seems you should check with a doctor. Sorry I'm not more help- maybe someone else will post.

lisa

I don't have a knowledgable doctor right now, but I'm looking around for one. I'm going to see another thyroid specialist next week, and I'll definitely ask him, too.

Thanks for all your help, Lisa!

Elizabeth

melie Apprentice
melie
Posted

Hey Elizabeth,

I do not have a 'formal' celiac diagnosis from the med. community, but one from Enterolab, and that combined with my response to the diet told me all I needed to know. It is very possible a healthy spot was biopsied, and if you had a blood test too, false negatives are very real. I also have autoimmune thyroiditis which was diagnosed 8 years before the celiac, and they are strongly correlated one to another. IE, it is recommended if you have thyroiditis, you should also get checked for celiac. I don't know which one came first though, if the celiac 'leaky gut' thing somehow triggers another autoimmune response or the other way around? I am still pretty new to all this...

Melie

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Holidaily Brewing Co.
Little Northern Bakehouse

Celiac.com Sponsor (A8-M):
Daura Damm

Aerin328 Apprentice
Aerin328
Posted

Elizabeth,

Not sure about the thyroid issue but as Carla articulated an endoscopy can definitely miss celiac disease damage. Go to Enterolab if you need test results: www.enterolab.com . Otherwise try going gluten-free for a few months and the results on your health should be proof enough.

Good luck!

Christian

Archived

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

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


  • Member Statistics

    • Total Members
      130,341
    • Most Online (within 30 mins)
      7,748
    Norine Miller
    Newest Member
    Norine Miller
    Joined
  • Celiac.com Sponsor (A20):
    Daura Damm

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):
    GliadinX


  • Celiac.com Sponsor (A21):
    Food for Life


  • Upcoming Events

  • Posts

    • Wheatwacked
      Am I celiac or not?

      By Wheatwacked · Posted

      Just like you cannot be a little pregnant, you cannot be a little Celiac.  Here is an article I found that explains what the numbers mean. Are You Confused About Your Celiac Disease Lab Results? Here is another article about the non traditional symptoms of Celiac Disease. What Are the Symptoms of Celiac Disease? I've been taking 10,000 IU vitamin D3 since 2015.  My blood tests every 3 months for 25(OH)D have never gone above 93 ng/ml, even in the Florida summer.  70 - 100 is the body's natural homeostasis level. Surge of information on benefits of vitamin D "“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said...
    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Interesting! Recent labs I had done did show that I was low in Vitamin D so I just began supplementing, it’s hard to tell so soon but it does seem to have a positive affect! Thanks for the input!
    • Scott Adams
      This Roller Coaster Ride Needs to Stop

      By Scott Adams · Posted

      Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG IgA antibodies are not something to brush off, especially when combined with your long list of debilitating symptoms that clearly worsen with gluten exposure. A negative biopsy does not necessarily mean you don’t have celiac disease—it’s entirely possible that damage was missed, especially since biopsy results can vary...
    • Wheatwacked
      Am I celiac or not?

      By Wheatwacked · Posted

      While a definitive causal link remains unclear, vitamin D's known role in immune modulation and intestinal barrier integrity suggests that it plays a significant role in the development and progression of celiac disease.  Reduced 25(OH)D levels are associated with celiac disease.  In celiac disease, gluten can damage these tight junctions, and vitamin D may play a protective role in this context. 
    • Ginger38
      This Roller Coaster Ride Needs to Stop

      By Ginger38 · Posted

      I have posted a lot on here and find that the support , advice and information here is much more helpful than anything else.. ever. I am really tired of the back and forth advice in the medical community and I am beyond frustrated and over all of it currently. I will try to keep this as brief as possible. I have positive TTG IGA antibodies - and I have had these every time I have been tested. The first time they were positive I was told I did not have celiac and couldn't have celiac but I was gluten intolerant and to go gluten free. I did this for about 3-4 months, dedicated I might add, and I did feel better. However, my blood glucose went up drastically and since I was already pre-diabetic...
×
×
  • Create New...