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

Fecal what? Just learned something new!


Victoria1234

Recommended Posts

Victoria1234 Experienced

So I just found a pub med study from a year ago..... Open Original Shared Link. I only read the abstract and I'm still saying omg, they do what? Not sure how they do it though, was trying to eat dinner when I ran across it, lol. Ok yes, I'm actually 3 years old. Although it is fascinating it can supposedly cure refractory celiac disease.

Abstract

Treatment of refractory celiac disease type II (RCD II) and preventing the development of an enteropathy associated T-cell lymphoma in these patients is still difficult. In this case report, we describe a patient with RCD II who received fecal microbiota transfer as treatment for a recurrent Clostridium difficile infection, and remarkably showed a full recovery of duodenal villi and disappearance of celiac symptoms. This case suggests that altering the gut microbiota may hold promise in improving the clinical and histological consequences of celiac disease and/or RCD II.


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



Celiac.com Sponsor (A8-M):



trents Grand Master

What do you mean by saying you are "actually 3 years old"?

Celiac's Wifey Explorer

 Well....my three year old is totally fascinated by poop, too, and also finds it totally funny.

She likes to rate whether or not her poop is 'de-cust-ing.' (disgusting) Oddly, this is a label only some poop gets.... I guess poop that cures celiac disease would be not de-cust-ing?

I remember reading about fecal transplants a few years ago (not in connection to celiac) and being horror/fascinated like the inappropriate slow drive down / rubbernecking down a highway where you can't help but look...

Just the idea that someone thought of the procedure....and then got medical approval to try it.... is totally bizarre/fascinating. Especially because in several specific serious diseases it seems to really work. (!)

Jonathan Swift would be proud.

(Anyone else remember how often he mentioned poop in Gulliver's Travels?)

Victoria1234 Experienced
3 hours ago, Celiac's Wifey said:

Just the idea that someone thought of the procedure....and then got medical approval to try it....

I know, right!? It's crazy! 

I told my husband I want a fecal transplant from him as his insides are so much healthier than mine. He just gave me a look though. 

Victoria1234 Experienced
7 hours ago, trents said:

What do you mean by saying you are "actually 3 years old"?

Well I guess I meant that my sense of humour is at a 3 year old's level. 

trents Grand Master
5 hours ago, Victoria1234 said:

Well I guess I meant that my sense of humour is at a 3 year old's level. 

Ah, makes sense now. I was thinking that was a pretty articulate post for a  3 year old. 

I 'm thinking a turkey baster would work well for the transfer. People could probably do it at home.

TexasJen Collaborator

Actually, I learned recently that there is a website that teaches people how to do it on their own at home.  I was so de-cust-ed!  I can't even imagine doing something that we know so little about (and is sort of gross) on your own.  But I am very curious about this and hope there is some research on it in the future.  Oh how I would love to eat a real hamburger again!

Thanks!

 


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



Celiac.com Sponsor (A8-M):



trents Grand Master

But what doesn't make sense to me is that this procedure would seem to only transfer microbiota from and into the lower intestine whereas Celiac Disease involves the upper section of the intestine. Do you suppose they crawl up?

cyclinglady Grand Master
11 minutes ago, trents said:

But what doesn't make sense to me is that this procedure would seem to only transfer microbiota from and into the lower intestine whereas Celiac Disease involves the upper section of the intestine. Do you suppose they crawl up?

There a very few bacteria located in the small intestine compared to the colon.  I do not get it either.  Neither do researchers.  This was attempted as a cure for C. diff.  And not a cure for celiac disease.  The patient had refractory celiac  type II which is really bad (rare too) and he probably did not have a lot to lose.  We do not know.   Maybe they were willing to try anything.  Not even sure this was done in the US where experimenting can be a legal nightmare.

This report,  published on PUB MED, was just a clinical report and not some huge research study.  Like the report that one kid finally got her celiac antibodies down by ditching her dental retainer.  Just "one" clinical report does not make it a scientific fact.  

No one knows what really causes autoimmune disease.  No one has a cure.  Lots of theories, but no definitive facts.  Let's face it, studying the GI tract is not glamorous.  Most likely the gut is way behind in research compared to other parts of the body.  

trents Grand Master

Yeah, I think we need to see this kind of experimental therapy be repeated and vetted before people jump on the bandwagon and start ordering home kits.

Victoria1234 Experienced
52 minutes ago, TexasJen said:

Actually, I learned recently that there is a website that teaches people how to do it on their own at home.  I was so de-cust-ed!  I can't even imagine doing something that we know so little about (and is sort of gross) on your own.  But I am very curious about this and hope there is some research on it in the future.  Oh how I would love to eat a real hamburger again!

Thanks!

 

It's very medieval sounding.

Celiac's Wifey Explorer
48 minutes ago, Victoria1234 said:

It's very medieval sounding.

This made me laugh.

Just picturing bleeding bowls, leeches, and people in funny hats insisting that transferring the fecal matter is a great idea....

On the other hand I once heard a fascinating podcast about a medieval monk's recipe/instruction set that when properly followed today creates an incredibly powerful antibiotic that can kill some resistant bacteria:

Open Original Shared Link

I think in the comments people fact checked different parts of it and took issue with some of the story telling, but I still found it interesting....so many things under the sun....

 

Victoria1234 Experienced
24 minutes ago, Celiac's Wifey said:

This made me laugh.

Just picturing bleeding bowls, leeches, and people in funny hats insisting that transferring the fecal matter is a great idea....

On the other hand I once heard a fascinating podcast about a medieval monk's recipe/instruction set that when properly followed today creates an incredibly powerful antibiotic that can kill some resistant bacteria:

Open Original Shared Link

I think in the comments people fact checked different parts of it and took issue with some of the story telling, but I still found it interesting....so many things under the sun....

 

I LOVE radiolab! Thanks for the link!

ravenwoodglass Mentor
2 hours ago, TexasJen said:

Actually, I learned recently that there is a website that teaches people how to do it on their own at home.  I was so de-cust-ed!  I can't even imagine doing something that we know so little about (and is sort of gross) on your own.  But I am very curious about this and hope there is some research on it in the future.  Oh how I would love to eat a real hamburger again!

Thanks!

 

That could be very dangerous. When done in a hospital setting the fecal material has been treated to destroy anything that might be harmfull. They aren't just inserting raw feces.

It has, from what I read, had some success with folks with Cdiff.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,228
    • Most Online (within 30 mins)
      7,748

    Carole111
    Newest Member
    Carole111
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      I suggest you eliminate dairy from your son's diet next.  Cow's milk protein, Casein, can trigger tTg IgA antibody production, the same as gluten, because casein contains segments of proteins that resemble gluten protein segments.   Mucosal reactivity to cow's milk protein in coeliac disease https://pmc.ncbi.nlm.nih.gov/articles/PMC1810502/ I cannot consume dairy products.  Some people find they can tolerate A2 dairy without a reaction. Corn is another frequently hard to tolerate food because the protein zein in corn also resembles the protein structure of gluten.   Do research in Dr. Derrick Lonsdale and TTFD thiamine.  Taking TTFD really can make a dramatic difference, speaking from personal experience. https://hormonesmatter.com/energy-deficiency-asd/ Keep us posted on your progress!
    • Scott Adams
      It sounds like you're doing everything right with your gluten-free diet, yet still experiencing significant discomfort, which must be frustrating. Since your stool sample came back normal but symptoms persist, pushing for further investigation—like a colonoscopy or biopsy—is a reasonable next step. You might also want to discuss the possibility of additional conditions, such as IBS, microscopic colitis, or other inflammatory issues, with your doctor. Tracking your symptoms, diet, and triggers in detail could help identify patterns. Don’t hesitate to advocate for yourself—if your current doctor isn’t addressing your concerns, seeking a second opinion or a referral to a gastroenterologist could be beneficial. You’re right to seek answers, and I hope you find relief soon. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • marbeg
      Hi all, I was diagnosed with coeliac in August 2020. This was via a blood test, as it was during COVID, so I’ve never had a biopsy or colonoscopy or anything like that.    I have been following a gluten-free diet since and would expect to feel much better, however, I am still experiencing issues with my bowels. Very strict, so I know there’s no cross contamination etc.    It usually seems to be after I have had a bowel movement, my bowels feel on fire, cramping, sore and very uncomfortable. I know it isn’t normal, and isn’t right and I have saw a doctor before, I provided a stool sample and apparently everything was fine- but I know it isn’t.    I am just wondering if anyone else experiences this? What would you advise I do in regards to seeing a doctor, I was thinking of asking for a colonoscopy or biopsy, I just want to know what is going on and why I’m still experiencing this. Any advice is welcome and appreciated.. thank you. 
    • elizabethhousworth
      Thanks. My son has been on B2 for two to three years now. I found literature about B1 earlier and put him on a B1 supplement, but not thiamine tetrahydrofurfuryl disulfide specifically. He also gets D and Magnesium. He goes to his doctor in June and I am going to ask for bloodwork to look for any deficiencies. What I suspect is that he is having a gluten-like reaction to the proteins in other grains. It is well known that a small percentage of celiac patients react to the protein in oats. Oats are in gluten-free Oreos, so we removed them. He got a little better. The science with oats is pretty solid. My son's nutritionist knows about it and it is easily found in PubMed. I suspect my son is reacting to something else. The next thing that I only just removed was corn, at least things with corn protein. I need to give that a couple of months. If that doesn't work, I will try to replace his cheese with goat-milk cheese, although that will be hard.    My son was migraine free for over a year on a strict gluten-free diet before this past fall. I can test his foods for gluten and I have given in to diet rigidity. He eats my homemade refried beans and rice for lunch every day, so his rigid diet contains pretty healthy components. Given his antibody levels (tTG-IgA very low) and that I tested everything under the son that he ingests when his migraines returned and nothing tested positive for gluten, I think he really is gluten-free. So my personal working hypothesis is that he is having a reaction to a similar protein, one in another grain. However, the neurologist sees migraines come and go in lots of normal people, so it might just be that he is now having multiple (3-10) migraines monthly and it is hormonal or weather-related or something that is entirely distinct from an antibody reaction. I just would like them to go away again, as would he.    Thanks again! Elizabeth
    • knitty kitty
      Welcome to the forum, @jamiet06, Yes, it does point in that direction.  Your report says "Correlation with clinical findings and results of serological studies is recommended"  is saying you should undergo a gluten challenge and be tested for antibodies associated with Celiac Disease.   These antibodies are produced in celiac disease in response to gluten, but you have to eat generous amounts of gluten for the antibodies to show up in the bloodstream. A gluten challenge means you eat 10 grams or more of gluten  (4 to 6 slices of gluten containing bread or equivalent or more) per day for a minimum of two weeks.  
×
×
  • Create New...