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

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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.