Seeking Advice about Fecal Transplant to Treat Celiac Disease

[Dave-C]

Hi everyone, 
I was recently diagnosed as celiac, based on igA (anti gliadantibodies) found in a lab test of my stools. I’m in my early 40s and I’m of Asian ancestry and I was previously suffering from digestive problems since about 2011 (mainly small intestine bacteria overgrowth SIBO). I had tried a “raw foods” diet briefly in 2011 which likely contributed to the SIBO, and possibly distorted my microbiome to create a strong immune immune response to the igA. I was able to eat gluten products until about my early 30s so this makes me a different type of celiac than one who has the condition from childhood.

 

I was wondering if it’s possible to cure celiac by taking a treatment to reset my microbiome so that it “turns down” the response to igA entering my digestive tract? Maybe a treatment such as fecal transplant might work for me? This interesting article https://www.celiac.com/celiac-disease/a-case-of-refractory-celiac-disease-cured-by-fecal-microbiota-transfer-r4184/
got me thinking that perhaps my type of celiac disease could be cured. Everything research article indicates that celiac is a life-long condition and that I need to just
Avoid gluten food products and eat gluten-free.

 

And can anyone a recommend good gastro-enterologists in Canada or the United States who have been able to cure celiac or who have very promising treatments for celiac? Any recommendations for doctors who specialize in fecal transplants?  Have there been any cases where a celiac patient was cured to the point that they could eat gluten products without any symptoms? Here's another article that suggests the possibility that a celiac could be cured by using fecal transplant https://www.celiac.com/celiac-disease/synthetic-stool-may-advance-fecal-transplant-therapy-for-celiac-disease-r2648/. 

Thanks for any advice!
 

Edited November 16, 2019 by Dave_C

[Ennis-TX]

.Celiac can become active at any point in life, many find they had some kind of stressful illness or life event trigger the gene.
Standard diagnosis is via a full celiac panel then confirmed by endoscope and biopsy, if you doubt your diagnosis I would suggest doing a gluten challenge (12 weeks daily 1-2 slices of bread for blood or 2 weeks for biopsy) and getting the full test and the biopsy.
https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/
https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/
https://celiac.org/about-celiac-disease/treatment-and-follow-up/
If you wish to assume you have celiac or to stick to the diet for it read this as it can be helpful.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
Once you have celiac...there is no cure yet. Til we have the ability to actual edit and turn off the gene via crispr or some other gene editing or we are stuck with it and gluten free for life is they only way for a true celiac.
The diet is honestly not that bad, I even built a catering business and bakery around it. Heck today I made chicken nuggets for lunch and had a breakfast pizza homemade this morning. >.< And everything I eat is low carb, paleo, gluten free, and keto lol But I have other food allergies and complications from not finding my celiac earlier and getting complications.

 

[GFinDC]

Hi Dave,

Welcome to the forum!

I read the first article linked.  It talks about a person with refractory celiac disease becoming better after the transplant.  But that person was still eating a gluten-free diet.  They weren't cured of celiac disease.   But the refractory response was not present.

The 2nd article doesn't contain any examples of curing celiac disease with fecal transplant.  The problem with curing celiac disease is that the immune system has a long memory.  The immune system would have to be retrained to not recognize gluten as an invader.  New gut biota is not going to retrain the immune system.

I did see an article about I think it was measles recently that's interesting.  The article said that measles can destroy the immune systems ability to protect us from various diseases.  That might actually be a way to cure celiac disease I think as the immune system is the problem.  If the immune system didn't react there would be no celiac disease.  Of course measles isn't a real safe medicine.

**************************************************************

https://www.sciencedaily.com/releases/2019/10/191031204630.htm

How measles wipes out the body's immune memory

Study details the mechanism and scope of measles-induced immune amnesia in the wake of infection

Date:

October 31, 2019

Source:

Harvard Medical School

Summary:

A new study shows that measles wipes out 20 to 50 percent of antibodies against an array of viruses and bacteria, depleting a child's previous immunity. A measles-ravaged immune system must 'relearn' how to protect the body against infections. The study details the mechanism and scope of this measles-induced 'immune amnesia.' The findings underscore the importance of measles vaccination, suggesting those infected with measles may benefit from booster shots of all previous childhood vaccines.

 

**************************************************************

Edited November 16, 2019 by GFinDC

[Dave-C]

Thanks for your replies Ennis_TX and GFinDC.   Wonderful suggestions! 

I also heard that the University of Washington's Protein Design Lab have been working on a pill to break down gluten in the stomach, thus allowing celiacs to consume gluten. It sounds like they're close to conducting clinical trials: https://www.acsh.org/news/2018/12/26/how-synthetic-biology-could-treat-celiac-disease-13682

[GFinDC]

Interesting Dave.  It looks like they started clinical trials in Sep-2018.  It's been over a year so it seems like there should be some kind of results by now.

There are already enzymes available that claim to break down gluten in the stomach.  DPP-IV is one and it seems there is another, I just don't recall the name right now.  Theses enzyme products are intended to help with minor gluten contamination though, not eating a gluten diet every day.  Say you go to a restaurant and they serve something with minor cross contamination.  These kind of enzyme products might help relieve some of the problem if you took them before eating.  But they don't make it possible to eat gluten regularly without symptoms developing.

Some beers are made with an enzyme that breaks down the barley in them so it is not detectable by currently available means.  But that doesn't mean the fragments of barley remaining are not going to trigger an immune reaction.  These are called gluten removed beers, which is a misnomer as the gluten is still there but is degraded into smaller pieces.

Some people claim that sourdough bread is safe for people with celiac to eat for the same reason.  The fermenting process breaks down the gluten protein into smaller chunks that don't show up in current testing methods.  But same thing, that doesn't mean they are safe for us to consume.  Our immune systems are very active against tiny microorganizms and seriously anal about attacking anything that may hurt us.  Our immune system thinks gluten is a pathogen and so it attacks it and our guts.

https://www.pvpbio.com/pvp-biologics-announces-first-in-human-clinical-trials-for-a-novel-therapeutic-for-celiac-disease/

Edited November 18, 2019 by GFinDC

[MaximilianKohler]

On 11/16/2019 at 10:32 AM, Dave-C said:

I was previously suffering from digestive problems since about 2011 (mainly small intestine bacteria overgrowth SIBO). I had tried a “raw foods” diet briefly in 2011 which likely contributed to the SIBO, and possibly distorted my microbiome to create a strong immune immune response to the igA.

I was wondering if it’s possible to cure celiac by taking a treatment to reset my microbiome so that it “turns down” the response to igA entering my digestive tract? Maybe a treatment such as fecal transplant might work for me? This interesting article https://www.celiac.com/celiac-disease/a-case-of-refractory-celiac-disease-cured-by-fecal-microbiota-transfer-r4184/
got me thinking that perhaps my type of celiac disease could be cured.

Any recommendations for doctors who specialize in fecal transplants?

First of all, you should read this information about SIBO:  https://humanmicrobiome.info/sibo/ It's a very questionable diagnosis that leads many people to harm themselves with misguided treatments.

Regarding celiac, I think it's very likely that FMT can treat it. Have a look through the related research: https://humanmicrobiome.info/intro/#celiac. You will see that multiple studies have shown that "gluten intolerance" is actually intolerance to various other "prebiotic" substances. FMT should be able to restore the microbes required to properly digest/process those prebiotic substances.

The main issue I've come across is that stool donors who are good enough to treat or cure any condition are extremely rare.

FYI, there is no such thing as "resetting your microbiome". Antibiotics are often the suggestion for this, but they do permanent damage that FMT may not even be able to reverse.

FMT is still in the research phase, so I'd be very weary of any doctor claiming to specialize in FMT. Most of the clinical trials are using low-quality donors and getting poor results because of that.

 

On 11/16/2019 at 11:35 AM, GFinDC said:

The 2nd article doesn't contain any examples of curing celiac disease with fecal transplant.  The problem with curing celiac disease is that the immune system has a long memory.  The immune system would have to be retrained to not recognize gluten as an invader.  New gut biota is not going to retrain the immune system.

The gut microbiome plays a major role in regulating the immune system: https://humanmicrobiome.info/immune-system/

Furthermore, the gut microbiome also regulates intestinal permeability. And in many cases, it's a permeable gut barrier that allows various particles and microbes to enter the bloodstream, which then triggers an immune reaction.

[Scott Adams]

SIBO is a common secondary issue in people with untreated celiac disease. Articles in this category cover this:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/bacterial-overgrowth-and-celiac-disease/

[GardeningForHealth]

12 hours ago, MaximilianKohler said:

Regarding celiac, I think it's very likely that FMT can treat it. Have a look through the related research: https://humanmicrobiome.info/intro/#celiac. You will see that multiple studies have shown that "gluten intolerance" is actually intolerance to various other "prebiotic" substances. FMT should be able to restore the microbes required to properly digest/process those prebiotic substances.

The main issue I've come across is that stool donors who are good enough to treat or cure any condition are extremely rare.

FYI, there is no such thing as "resetting your microbiome". Antibiotics are often the suggestion for this, but they do permanent damage that FMT may not even be able to reverse.

FMT is still in the research phase, so I'd be very weary of any doctor claiming to specialize in FMT. Most of the clinical trials are using low-quality donors and getting poor results because of that.

The gut microbiome plays a major role in regulating the immune system: https://humanmicrobiome.info/immune-system/

Furthermore, the gut microbiome also regulates intestinal permeability. And in many cases, it's a permeable gut barrier that allows various particles and microbes to enter the bloodstream, which then triggers an immune reaction.

FMT has a strong potential to either cure or improve many diseases, including Celiac Disease. However, the FDA has only approved FMT for the treatment of C.Diff infection at this time, and FMT is not approved in the United States for any other treatments.

However, I hope that this changes in the future. Preliminary studies have shown benefit of FMT for treatment of a subset of autism here and here, and Phase III trials will begin soon for FMT for that subset of autism. I believe (this is my opinion) that autism is an autoimmune disorder.

Dr. Alessio Fasano states that autoimmune diseases begin with leaky gut/intestinal permeability, so it is probably true that FMT from a or several very healthy, disease-free donors may offer cures or relief of some kind for many who suffer from autoimmune conditions.

While the adaptive arm of our immune system will never "forget" gluten as an antigen, in my opinion if the gut microbiota can be brought back into a healthy state that contains missing microbes discovered by Dr. Fasano's CDGEMM team to be protective against gluten, and also an overall balance of the microbiome is restored, then zonulin will not be triggered upon ingestion of gluten, meaning the intestinal wall is remaining closed and not leaky, and therefore the immune system will not become activated by gluten anymore. 

In such a theoretical scenario, gluten would only become a problem again if/when there is another pathogen inside the intestines that activates zonulin, causing the intestine to open to pass the pathogen to the immune system beneath. So if there was a serious bacteria or virus, then the person would need to avoid gluten during the illness and maybe for a while beyond the illness as well, so as not to have a reaction to gluten (this is all speculation based upon my understanding).

Antibiotics can do permanent damage, but usually not. In an adult, the microbiome usually recovers, unless their microbiome is already very compromised. However, in a child under the age of 3, antibiotics do have the potential to permanently harm the child's microbiome, killing off protective strains of bacteria, causing a life-long predisposition to autoimmune diseases.

[MaximilianKohler]

6 hours ago, Scott Adams said:

SIBO is a common secondary issue in people with untreated celiac disease. Articles in this category cover this:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/bacterial-overgrowth-and-celiac-disease/

What do you think of the contrary information on SIBO I shared which argues that the term itself is misleading, erroneous, and even harmful?

 

2 hours ago, GardeningForHealth said:

FMT has a strong potential to either cure or improve many diseases, including Celiac Disease. However, the FDA has only approved FMT for the treatment of C.Diff infection at this time, and FMT is not approved in the United States for any other treatments.

There are current patient-led efforts to get FMT approved by the FDA. Anyone interested in FMT should get involved.

 

2 hours ago, GardeningForHealth said:

Antibiotics can do permanent damage, but usually not. In an adult, the microbiome usually recovers, unless their microbiome is already very compromised.

Do you have a citation for this? The wiki I shared in my previous comment has a whole page on antibiotics, including dozens of studies and reviews concluding that the damage is permanent and compounds over generations.

[Scott Adams]

Since you keep linking to the same site that has a focus on the microbiome, it's clear that you have a strong focus on the topic, but here it usually comes up in relation to untreated celiac disease, thus I've shared the research summaries that we've done over the years on how the two are related. Like many disorders, including celiac disease, it's clear that more research needs to be done to fully understand both SIBO and celiac disease.