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):



    Celiac.com Sponsor (A1-M):


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

Cure for celiac, might be in poop?


Zprime

Recommended Posts

Zprime Explorer

I've been following a doctor here in canada who's cured/ fully reversed several cases of celiac disease with fmts  ( fetal matter transplants ).

The patients were able to cure several of their food intolerances, regrow villi and eat gluten again without consequences. 

I've been debating starting a go fund me to get the procedure done, and see if it actually works, if it works I think we may be on the forefront of a possible cure/ treatment , and maybe even eat gluten again worry free.

Anyone here tried a fmt? Had their celiac reversed ?

Would anyone here be interested in me trying this experiment?

 

The treatment here is between 600 - 1000 and not covered by insurance, experimental.

Would the community be interested in helping out?


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



Celiac.com Sponsor (A8-M):



Zprime Explorer

Found a second article where someone has cured from celiac with a fmt. This is exciting! 

Screenshot_20190917-020851_Drive.webp

ravenwoodglass Mentor

The person referred to in the article had C Diff. and Refactory Celiac. This procedure has had some success with folks that have C Diff and I have to wonder if the infection was what was keeping the patient from healing on the diet. Refactory Celiac is pretty rare from my understanding.

It used to be thought that children would outgrow celiac because after complete healing it can take some time for antibodies and symptoms to show back up.  In studies that show patients 'cured' of celiac I would like to see long term studies done.

If you want to persue the fecal transplant route you should talk to your doctor. Your insurance may cover it if the doc considers it a possible treatment of value.

Zprime Explorer
1 minute ago, ravenwoodglass said:

The person referred to in the article had C Diff. and Refactory Celiac. This procedure has had some success with folks that have C Diff and I have to wonder if the infection was what was keeping the patient from healing on the diet. Refactory Celiac is pretty rare from my understanding.

It used to be thought that children would outgrow celiac because after complete healing it can take some time for antibodies and symptoms to show back up.  In studies that show patients 'cured' of celiac I would like to see long term studies done.

If you want to persue the fecal transplant route you should talk to your doctor. Your insurance may cover it if the doc considers it a possible treatment of value.

What I found fascinating is that refacing celiac is much much worse than ' average celiac disease ', so if fmt can cure that, entirely , then it would make sense it would also benefit an average celiac diagnosis, I'm going to start making calls tomorrow, wont stop till this disease is cured.

ravenwoodglass Mentor

Try contacting the doctor you mention. If he is still doing research he might treat you for free if you join the study.

Are you newly diagnosed and still having symptoms? It can take some time to heal and there are many here who can help with that change in lifestyle.

Zprime Explorer
Just now, ravenwoodglass said:

Try contacting the doctor you mention. If he is still doing research he might treat you for free if you join the study.

Are you newly diagnosed and still having symptoms? It can take some time to heal and there are many here who can help with that change in lifestyle.

Absolutely. I will.

Diagnosed in March  but sicker gluten free than on gluten. Developed all sorts of bowel conditions since I no longer have fibre/ bread. 

On about 8 supplements, stressed and depressed all the time, was fine before, only found it because of a routine endoscopy. I dont feel ' healthy ' without gluten, it's so hard to explain. When I did a one month trial on gluten all my symptoms improved including my stools. Even my anti ttga went down, but I get conflicting reports so for now I'm avoiding gluten.

 

I just feel like I was fine, then my gut got messed up. I was healthy at 31. Now I'm 32 and I feel like I won't make it to 33, my body is literally dying / falling apart. f$#% celiac or whatever it is I have

cyclinglady Grand Master

Are you sure your supplements are actually gluten free?  Have they been tested?  New reports on reveal that even prescription genetic drugs are contaminated.  Almost all come from China and India.  The same China that is smuggling in Fentanyl in quantities that could millions of people.  

https://www.cnbc.com/2019/09/17/schwarzman-im-hearing-china-is-working-to-stop-illicit-fentanyl-shipments.html

https://www.cbsnews.com/news/generic-drugs-manufactured-overseas-may-not-be-as-safe-as-you-think/

That aside, unless you have C. Diff or IBD, considering fecal implants for celiac disease is crazy.  Celiac disease occurs in the small intestine where there is little bacteria.  One case study of a refractory patients does not make it a good idea.  This is still considered experimental.  

https://crohnsandcolitis.ca/Crohns_and_Colitis/documents/treatment-statements/FecalTransplantation_Statement_16Nov2016.pdf

You can get plenty of fiber into your diet without bread.  Try eating vegetables.  What did people consume before they started cultivating crops?  

If your diet is super gluten-free clean (including drugs and supplements), you should see your doctor.  You might have other illnesses.  

 


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

You can try adding psyillium husks to your food for extra fiber.  They can be added to just about any food.  You can also look up lists of foods with high fiber to eat.  Things like peas and sweet potatoes are some examples.

We did have one person several years ago who claimed to be cured of celiac disease.  They had a disease and had their bone marrow replaced as part of the treatment.  I never heard if that worked for anyone else.  But bone marrow replacement is a very expensive and dangerous process anyhow and not something to do unless medically necessary.

The immune system is very effective and doesn't forget things easily.  If you can find a way to retrain your immune systems you can cure celiac disease.  But that is not likely.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Jack Common's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      33

      What should I do with these test results?

    2. - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      10

      SkinSafe

    3. - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      10

      SkinSafe


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,328
    • Most Online (within 30 mins)
      7,748

    Food4thot
    Newest Member
    Food4thot
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Itsabit
    • Itsabit
    • trents
      From the article you linked: "Currently, there are no recommended methods to test for non-celiac gluten sensitivity." "No recommended methods" is the key phrase here. Just on the anecdotal evidence of reading many posts on this forum, I think we sometimes see some elevated igg test scores with NCGS. They seem to be mildly elevated in these cases, not high high.
    • Itsabit
      Thank you for your reply. I’m beginning to think of iodine as another culprit in this, as much as I fear it. I will say my rash is extreme and diffuse - it’s everywhere! I first had it on both sides of my neck in the summer of 2023. My PCP and dermatologist at the time, thought it was a reaction to jewelry I was wearing, even though I had been wearing the same necklaces for literally years with no reaction. The dermatologist at the time repeated over and over again that “allergies are acquired.” Which I knew. But I was not reacting to any other jewelry I was wearing. So it didn’t make any sense to me that it would only be from my necklaces. Anyway, it abated on it’s own. Only to come back with a vengeance months later - and I had not worn any necklaces at all. And the rash involved more area. I was put on Prednisone (oral steroid) taper and it worked well, and the itch and eventually the rash went away. Another trip to a different dermatologist at that time, prior to starting the Prednisone, told me to change all of my hygiene products like soap and shampoo, and to slather on Vaseline. None of which worked, hence the Prednisone. Needless to say, the itch and subsequent rash returned - and now spread everywhere, not just the hollows on both sides of my neck. It’s there, on my upper chest and left breast, both upper arms front and back, and elbows, my entire back, down both of my hips and buttocks and the front of my right thigh. Now the back of that right thigh is starting to itch as well. Also my lower right forearm and middle knuckle on my left hand since going gluten free. I’m just itching everywhere all the time. It keeps me awake, or wakes me up when I do fall asleep. I’m trying my best not to scratch, but it’s nearly impossible! I’ve been using a dry washcloth to rub instead of scratching. And I have used cool wet washcloths which help, but only lasts for a few minutes before starting up again. I’m pretty much at my wit’s end. Just waiting for something to indicate what’s really going on so I can do SOMETHING to stop it! 
    • Itsabit
      Reply to Russ H, Thank you for your input. As a nurse for 46 years I was aware of much of this. However, as a new member to dermatitis herpetiformis, I have been reading and researching everything I can about it in order to educate and help myself. I was hoping that the oral Dapsone would help to alleviate the itching. I knew the rash would take longer to abate. Instead of relief from the Dapsone, I had adverse reactions so had to stop it. After 2 months on it, if hadn’t helped with the itching at all, and I understand it usually helps in the first few days if it’s going to. My itch and rash actually got worse on the Dapsone and with going gluten free - which lead me to question whether I was getting glutined from other products I am using. It’s like a huge puzzle trying to put all these pieces together to somehow make it fit and make sense. Right now, myself and my doctor are perplexed. 
×
×
  • Create New...