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

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):

Celiac.com Sponsor (A8-M):


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
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
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
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):

Celiac.com Sponsor (A8-M):


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):


  • Member Statistics

    • Total Members
      131,951
    • Most Online (within 30 mins)
      7,748
    SY8
    Newest Member
    SY8
    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

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • 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.