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

Any Treatments In Development For Non-celiac Gluten Intolerance?


CGally81

Recommended Posts

CGally81 Enthusiast

Every test, including the DNA test, for celiac comes back negative. I appear not to have celiac, but take my word for it, I think you'd recognize the symptoms if I listed what happens if I eat gluten. I even gained 2 additional food intolerances (lactose intolerance and fructose malabsorption) while still eating gluten (both problems are mostly gone).

So, I don't have celiac. But I have its symptoms, and gluten is the enemy.

What does this mean? For me and others like me, it means that upcoming treatments and cures for celiac will have no effect on us!

So basically, does anyone here know if there are any developments in treating non-celiac gluten intolerance?


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



Celiac.com Sponsor (A8-M):



Gemini Experienced
Every test, including the DNA test, for celiac comes back negative. I appear not to have celiac, but take my word for it, I think you'd recognize the symptoms if I listed what happens if I eat gluten. I even gained 2 additional food intolerances (lactose intolerance and fructose malabsorption) while still eating gluten (both problems are mostly gone).

So, I don't have celiac. But I have its symptoms, and gluten is the enemy.

What does this mean? For me and others like me, it means that upcoming treatments and cures for celiac will have no effect on us!

So basically, does anyone here know if there are any developments in treating non-celiac gluten intolerance?

As I have little faith in a "cure" for Celiac Disease or any interest in one, I do not think there will be any for gluten sensitivity either. Gluten intolerance IS Celiac Disease but being sensitive is just as bad, from a symptom point of view. Plus, as the medical profession does not recognize anything but villi flattening celiac disease, the odds of them making any strides towards what you ask is pretty much nil.

I know some people do not like to hear this but eating a gluten-free diet is the best cure possible. You eat healthier than most everyone else, if you take the diet seriously and put some effort into it and the rewards you will reap from that alone are huge. Even the treatments in development now are not so you can go back to a gluten filled, bad diet but to protect against CC when not eating at home. I just highly doubt the human body and immune system can be tricked into not recognizing the gluten protein if ingested by someone with celiac disease/GS. Doctors have enough trouble getting a diagnosis right without thinking they can override the immune system.

There are far worse conditions to have in life than this and you also have total control (for the most part) over your own recovery. Maybe someday, 100 years from now, there will be a magic bullet but you still have to eat healthy if you want good health as you grow older. That's something that never changes. At least you were smart enough to figure out your problems and do something about it!

CGally81 Enthusiast
As I have little faith in a "cure" for Celiac Disease or any interest in one, I do not think there will be any for gluten sensitivity either. Gluten intolerance IS Celiac Disease but being sensitive is just as bad, from a symptom point of view. Plus, as the medical profession does not recognize anything but villi flattening celiac disease, the odds of them making any strides towards what you ask is pretty much nil.

I know some people do not like to hear this but eating a gluten-free diet is the best cure possible. You eat healthier than most everyone else, if you take the diet seriously and put some effort into it and the rewards you will reap from that alone are huge. Even the treatments in development now are not so you can go back to a gluten filled, bad diet but to protect against CC when not eating at home. I just highly doubt the human body and immune system can be tricked into not recognizing the gluten protein if ingested by someone with celiac disease/GS. Doctors have enough trouble getting a diagnosis right without thinking they can override the immune system.

There are far worse conditions to have in life than this and you also have total control (for the most part) over your own recovery. Maybe someday, 100 years from now, there will be a magic bullet but you still have to eat healthy if you want good health as you grow older. That's something that never changes. At least you were smart enough to figure out your problems and do something about it!

I know a lot of people say "I would never go back to eating gluten even if there was such a cure." I feel the same way myself. But it would mean I wouldn't have to bring digestive enzymes everywhere I might encounter gluten. It would help me live a more normal life, and maybe have the occasional birthday angel food cake.

The current "cure" in development for Celiac involves exactly what you say - telling the immune system to stop attacking gluten. Basically, the reverse of what we normally think of as a vaccine. I imagine that a cure for non-Celiac gluten sensitivity/intolerance would work similarly.

ravenwoodglass Mentor

I don't think finding a cure for celiac/GI (I believe them to be the same thing) is high on drug companies list of priorities. It is also a genetic difference IMHO not truely a disease. You mention taking digestive enzymes when you think you are going to encounter gluten. I personally don't take them and won't but a treatment for celiac or gluten intolerance would basically be the same sort of thing. For us eating gluten is akin to eating poison, I don't want something that is going to allow me to eat small amounts of poison. These enzymes also address only the gut issue, as far as I know. The reaction begins in the mouth as soon as gluten contacts the mucous membranes so I doubt it would be helpful for those of us that suffer neuro symptoms even if it does keep us from getting D. The best 'cure' for us IMHO is to avoid gluten. That is getting easier and will continue to get easier. We have come a long way just since I was diagnosed 7 years ago. I know many desperately want a 'cure' but I don't think it will come in my lifetime and although acceptance can be tough it is what we need to do at this time.

Gemini Experienced
I know a lot of people say "I would never go back to eating gluten even if there was such a cure." I feel the same way myself. But it would mean I wouldn't have to bring digestive enzymes everywhere I might encounter gluten. It would help me live a more normal life, and maybe have the occasional birthday angel food cake.

If the "cure" came in a pill form, you'd still have to bring pills with you every time you eat away from home, so that won't solve that problem. I understand what you are trying to say but honestly, I live a completely normal life with Celiac and it prevents me from doing very little that other people can do. Honestly...it's all about mindset.

Having an occasional piece of angel food cake would still be a no-no....it's meant for CC issues only. I am an absolute food snob and love high quality, haute cuisine and have yet to find much of anything I can't re-produce in my kitchen gluten-free. I know it's more work but I'm eatin' well these days! ;) The only thing this has been, as far as a pain in the butt sometimes, is the loss of convenience. That is the worst part for me. You have to bring food with you when out for the day in case you get stuck anywhere where there is none. :(

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    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

    • trents
      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
      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.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.