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

Does Malabsorption+gluten-intolerance=celiac?

jshelton999

Recommended Posts

jshelton999 Apprentice
jshelton999
Posted

I had a strong positive result from Enterolab for gluten sensitivity: 124 (normal <10) and I've had confirmed malabsorption with very low Vit D, and problems with absorption of my thyroid med (Synthroid).

So does this mean that there was intestinal damage even if the doc didn't see anything more than gastritis in the biopsy? BTW - I have little confidence in my gastroenterologist and suspect he didn't really look for Celiac.

I've been telling my friends and family that what I have is probably Celiac rather than just gluten-intolerance because of the malabsorption issues and frankly, 'Celiac' is better understood term to them than 'gluten-intolerance'...

So what do you think? Might I have Celiac rather than just gluten-intolerance? Can you have these malabsorption issues without Celiac?

Thanks for your feedback...I'm really anxious to get this all sorted out!

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

Celiac.com Sponsor (A8-M):


Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Let me preface this by saying I am not a doctor..... Now, from my understanding, gluten intolerance doesn't produce villi damage and Celiac does (that's why biopsy is the gold standard for dxing Celiac). If you are having malabsorption issues I would think you have villi damage which means you have Celiac. If I am wrong, please, someone correct me.

Jestgar Rising Star
Jestgar
Posted

I think the answer is: it's not clear. And really, it doesn't matter, the treatment is the same. If you want, tell people that you caught your Celiac disease before it had done too much damage, but you were starting to have malabsorption problems.

jshelton999 Apprentice
jshelton999
Posted
  • Author

Thanks for the quick replies! My instincts tell me there was intestinal damage and my doc just missed it. I didn't have a good feeling about him from day one. When I asked him before the endoscopy about looking for Celiac, he wouldn't discuss it, acting offended that I would suggest he look for it...

But if malabsorption can only occur when it's Celiac, then I definitely have Celiac.

BTW - One reason I need to have the exact condition dialed-in is that I'm on LTD and my insurance company needs a diagnostic code or they'll stop benefits. Ideally, I'll heal completely before too long and can go back to work - after 7yrs on disability!

rubyred Apprentice
rubyred
Posted

FWIW, I used Enterolab and tested positive for malabsorption too. But, I was told by 2 doctors that I don't have celiac, even though my endoscopy showed mild blunting of villi. I think soy was causing the villi blunting?? Leaky gut?? I really don't know, never got any real answers. I also had gastritis and my stomach lining was atrophied. I've been gluten-free for a year now. Still don't know what to say to some people sometimes - do I have gluten sensitivity? Did I catch celiac early? I have the gene so I figure even if I don't have celiac, I still need to continue eating gluten-free. I can't really answer your question, but just wanted to share my experience.

CLeeB Rookie
CLeeB
Posted

Just like to chime in to say that I'm in the same boat with the same question. As you can read in my sig, my TtG test was within normal ranges, but i never had the full celiac panel done (stupid policy by HMO - only use the TtG test and then run the other ones if positive). But a comprehensive stool test (Metametrix) showed poor digestion and malabsorption, among other things. And Enterolab showed significantly high levels of anti-gliadin antibodies. Per naturopathic doc's orders, I've been gluten free for a little over a year.

I agree with Jestgar...it's unclear at this point. I just don't think science completely understands how gluten sensitivity/intolerance and celiac link/intereact/insert your favorite verb here. OTOH, I think it does matter for some of us what the label is. Yes, you are absolutely correct, the solution is the same. But dealing with the unknown is not something i think many human beings do very well. And there are a lot of unknowns when it comes to gluten.

FWIW, my naturopath, when i asked her to define my condition as best she could, said "severe gluten intolerance without test-proven villi damage."

Just proves how muddy the water really is.

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

My doctor admitted that he usually doesn't diagnose someone with Celiac unless their villi are completely smooth. Even with a positive blood test. I told him I thought that was dangerous because if someone has completely smooth villi that means they are in the critical stages of Celiac. I asked him why he wouldn't diagnose someone who had mild blunting. He said that's what he learned in med school 30 years ago. I told him times are different now. He said he knows and he is getting updated info from his daughter who is going through med school. So, I guess it all depends on your doctor and how long ago he/she went to med school!!!

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,945
    • Most Online (within 30 mins)
      7,748
    Miyasato
    Newest Member
    Miyasato
    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.