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

Has Anyone Had Any Success With Tso/whipworm And/or Hookworm Therapy?


Bookie53463

Recommended Posts

Bookie53463 Rookie

Hi everyone,

I was just wondering if anyone here has tried TSO/Whipworm and/or Hookworm therapy for their Celiac disease. It seems potentially helpful (granted there doesn't appear to be a tremendous amount of research on it). While trying out different diets might ultimately help me, fixing my immune system so I can live a comparatively normal life is far more appealing...

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

This sounds like one of the worst ideas for treating celiac that I have ever heard of. Please don't try it. If you have celiac it is genetic and those worms are not going to change your genes. Also celiacs have a hard time absorbing nutrients they get from their food until they are healed. The worms are going to make that even harder. The treatment is not approved nor throughly researched. Please don't do it.

  • 3 weeks later...
Integrativedoc Newbie
Hi everyone,

I was just wondering if anyone here has tried TSO/Whipworm and/or Hookworm therapy for their Celiac disease. It seems potentially helpful (granted there doesn't appear to be a tremendous amount of research on it). While trying out different diets might ultimately help me, fixing my immune system so I can live a comparatively normal life is far more appealing...

Open Original Shared Link

I was wondering how you linked the treatment of whipworms specifically to the treatment of Celiac disease?

  • 1 month later...
Bookie53463 Rookie
I was wondering how you linked the treatment of whipworms specifically to the treatment of Celiac disease?

Celiac disease is an autoimmune disorder not entirely unlike Crohn's, IBD, etc. and hookworm/TSO appear to function as a sort of gut specific cortisone (similar to endocort) though with seemingly fewer side effects

  • 1 year later...
Liz617 Newbie

While I agree we should proceed with caution regarding parasitic treatments for celiac disease, the argument put forth below is incorrect. Even if it were true that celiac disease is caused by genes (this is probably only a small part of its cause), it would not follow that treatment required altering one's genes. There are genetic contributions to asthma, but we don;t treat that with gene-therapy. I think we should be open-minded about hookworms' (and other parasites') potential to treat autoimmune disorders. Sure, it's gross to think about having worms in your intestines, but the side effects (e.g., anemia) are manageable and probably less severe than steroid treatments. For me, I'd rather have worms and be able to eat bagels than to remain gluten-free for the rest of my life. Let's encourage further scientific study...

This sounds like one of the worst ideas for treating celiac that I have ever heard of. Please don't try it. If you have celiac it is genetic and those worms are not going to change your genes. Also celiacs have a hard time absorbing nutrients they get from their food until they are healed. The worms are going to make that even harder. The treatment is not approved nor throughly researched. Please don't do it.

VioletBlue Contributor

For me, I'd rather have worms and be able to eat bagels than to remain gluten-free for the rest of my life. Let's encourage further scientific study...

That's a really sad statement. You'd rather carry around a dirty life sucking parasite in your gut then avoid gluten. That's just sad.

ravenwoodglass Mentor

While I agree we should proceed with caution regarding parasitic treatments for celiac disease, the argument put forth below is incorrect. Even if it were true that celiac disease is caused by genes (this is probably only a small part of its cause), it would not follow that treatment required altering one's genes. There are genetic contributions to asthma, but we don;t treat that with gene-therapy. I think we should be open-minded about hookworms' (and other parasites') potential to treat autoimmune disorders. Sure, it's gross to think about having worms in your intestines, but the side effects (e.g., anemia) are manageable and probably less severe than steroid treatments. For me, I'd rather have worms and be able to eat bagels than to remain gluten-free for the rest of my life. Let's encourage further scientific study...

Since celiac disease effects far more than just the gut and the antibody reaction begins the minute gluten enters the system through the mucous membranes in the mouth I seriously doubt that having worms compromising your intestines is going to help with the autoimmune reaction. Celiac is much, much more than just a gut disease. I would not risk brain, liver, gallbladder, lymphoma, arthritis, and other organs just to avoid a tummy upset from gluten. I 'treated' my celiac with hordes of drugs, for the symptoms for years. If you read my sig you can see how far that got me.


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



Celiac.com Sponsor (A8-M):



  • 1 year later...
ursenay Newbie

That's a really sad statement. You'd rather carry around a dirty life sucking parasite in your gut then avoid gluten. That's just sad.

You need to suspend your bias. Far from being "dirty life sucking" parasites, intestinal helminths evolved along with humans (and every other higher animal). It's entirely likely that because of our obsession with sterility and "cleanliness" (a joke if ever there was one) that we've induced diseases like Chron's and celiac that are virtually unknown outside the "developed" world. If you understand how the immune system works, it needs something to do. When we rid ourselves of parasites (which are in many cases essentially harmless), our immune system looks for something to do. In this case, it merrily goes along attacking the intestinal lining giving us the wonderful symptoms of celiac disease.

The research on helminthic therapy for Chron's and celiac, while not voluminous yet, is quite compelling. It makes complete sense from a cellular physiology point of view, and I for one am going to be actively seeking it out now that I know it's available.

Just FYI, the "dirty life-sucking parasites" under discussion are no dirtier nor more life-sucking than the trillions of bacteria that live on your skin, in your hair follicles, inside your nose, inside your mouth, under your fingernails, inside your vagina (if you have one), and from end to end in your intestinal tract. Try killing all those little guys off and see how long you live. I'd give you hours at most, even if it were possible to kill them all, which it isn't.

mommida Enthusiast

Parasitic infections have different stages. When the worm is in an younger stage it is migrating through the body. It is possible that it would reach maturity in a wrong major organ and cause damage there instead of the intended gut lining. During this time your body should respond by making Eosinophils. Eosinophils are white blood cells with (in lay person's terms) a spear normally reserved to fight parasitic infection. Major problem! Eosinophils will damage normal tissue. It can not tell the difference it just attacks. (It is not comparable to a maggot only eating dead, rotting, and/or infected flesh.)The health risk of a parasitic infection IMO would out weigh any benefit.

Search for more information about damage of eosinophils...

Eosinophilic esophagitus

or any other eosinophilic gastrointestinal disorder.

Do you seriously want to risk being put on a feeding tube? :huh:

dilettantesteph Collaborator

You need to suspend your bias. Far from being "dirty life sucking" parasites, intestinal helminths evolved along with humans (and every other higher animal). It's entirely likely that because of our obsession with sterility and "cleanliness" (a joke if ever there was one) that we've induced diseases like Chron's and celiac that are virtually unknown outside the "developed" world. If you understand how the immune system works, it needs something to do. When we rid ourselves of parasites (which are in many cases essentially harmless), our immune system looks for something to do. In this case, it merrily goes along attacking the intestinal lining giving us the wonderful symptoms of celiac disease.

The research on helminthic therapy for Chron's and celiac, while not voluminous yet, is quite compelling. It makes complete sense from a cellular physiology point of view, and I for one am going to be actively seeking it out now that I know it's available.

Just FYI, the "dirty life-sucking parasites" under discussion are no dirtier nor more life-sucking than the trillions of bacteria that live on your skin, in your hair follicles, inside your nose, inside your mouth, under your fingernails, inside your vagina (if you have one), and from end to end in your intestinal tract. Try killing all those little guys off and see how long you live. I'd give you hours at most, even if it were possible to kill them all, which it isn't.

I've done some reading on this too, and it does sound compelling. I would also like to hear from anyone who has tried it. I think I'll wait until it's more proven, if it does get to me more proven, before I'd try it myself.

The only research I could find where it was used for celiac disease found that it didn't work. Does anyone know of any research where it was found to work?

Gemini Experienced

That's a really sad statement. You'd rather carry around a dirty life sucking parasite in your gut then avoid gluten. That's just sad.

I agree! Far from being a biased answer, this IS what you said it is....sad. Anyone who thinks that introducing a parasite into your gut so you can eat a bagel again, has bigger problems than Celiac Disease. Why would anyone be so attached to a piece of bread? :blink:

dilettantesteph Collaborator

I agree! Far from being a biased answer, this IS what you said it is....sad. Anyone who thinks that introducing a parasite into your gut so you can eat a bagel again, has bigger problems than Celiac Disease. Why would anyone be so attached to a piece of bread? :blink:

That would be sad. Some of us get glutened pretty often from unintentional gluten ingestion. It would be pretty nice to not have that happen anymore.

cavernio Enthusiast

I wouldn't do that.

a) it's unclear if it will actually work

B) it may, as mommida says, not stay in your intestines. If it moves, not only will it definitely NOT help, it can embed in your liver or something.

c) seems likely that wherever you'd buy these eggs from aren't actually going to be eggs, or they won't be viable eggs. Something ridiculous like 50% of drugs bought off the internet (not sure where else you'd find such an odd therapy) are fake

d) even if it stays in your intestines, and you start to feel better, and it reduces or even stops your body's immune attacks to gluten, it will damage your intestines and will also absorb nutrients that you still need. Sounds like borrowing from Peter to pay Paul...

e) you have a freakin worm living in you....ewwwwwwwwwwwwww. And you'd know about it. Every little pain or gurgle and I'd be like 'omg, it's the worm'

f) if it turns sour, there's not necessarily a clear cut, easy way to get rid of the damned thing(s). There are drugs, but like most things, its hard to find something 100% effective.

g) I've read quite a few opinions, some from GI's, that say that the vast majority of US citizens already have parasites living in them. I mean, all it takes is 1 bite of undercooked meat, your hands not washed properly once.

You have to take any info about these types of things with a grain of salt. The vast majority of stuff I've read about germ theories and us not having enough of them so our immune system decides to attack something else, is correlational research by epidemiologists, not microbiological studies in controlled environments.

Just for example about what to worry about when thinking about field data, when I was doing reading about iron deficiency on the internet, there was one guy's website that was like hit 3 or 4 or something, who was determined that north american's are all killing themselves from having too much iron. His data didn't seem falsified or flawed in anyway, but his interpretation of it was questionable. He had data from a large number of mexicans who were anemic or something, and found they also had less heart disease, less cancer, fewer health problems overall, etc. compared to americans. But would you say that low iron caused all those benefits? EVEN if it did, knowing the negative of effects of being anemic, would you want to be anemic?

  • 8 months later...
ljubljanan Newbie

No, but i am going to get it in about a month!! So excited. Ill let you know how it goes.

For all the naysayers who have commented: Do your research!!

Hi everyone,

I was just wondering if anyone here has tried TSO/Whipworm and/or Hookworm therapy for their Celiac disease. It seems potentially helpful (granted there doesn't appear to be a tremendous amount of research on it). While trying out different diets might ultimately help me, fixing my immune system so I can live a comparatively normal life is far more appealing...

Open Original Shared Link

ljubljanan Newbie

Clearly you have done No research on this. The worms used re supposed to stay in you for 5 years to 10 years depending on the type. The quantity dispensed is at such a low level that the world health organization does not suggest treatment even if you got them not on purpose.

I wouldn't do that.

a) it's unclear if it will actually work

B) it may, as mommida says, not stay in your intestines. If it moves, not only will it definitely NOT help, it can embed in your liver or something.

c) seems likely that wherever you'd buy these eggs from aren't actually going to be eggs, or they won't be viable eggs. Something ridiculous like 50% of drugs bought off the internet (not sure where else you'd find such an odd therapy) are fake

d) even if it stays in your intestines, and you start to feel better, and it reduces or even stops your body's immune attacks to gluten, it will damage your intestines and will also absorb nutrients that you still need. Sounds like borrowing from Peter to pay Paul...

e) you have a freakin worm living in you....ewwwwwwwwwwwwww. And you'd know about it. Every little pain or gurgle and I'd be like 'omg, it's the worm'

f) if it turns sour, there's not necessarily a clear cut, easy way to get rid of the damned thing(s). There are drugs, but like most things, its hard to find something 100% effective.

g) I've read quite a few opinions, some from GI's, that say that the vast majority of US citizens already have parasites living in them. I mean, all it takes is 1 bite of undercooked meat, your hands not washed properly once.

You have to take any info about these types of things with a grain of salt. The vast majority of stuff I've read about germ theories and us not having enough of them so our immune system decides to attack something else, is correlational research by epidemiologists, not microbiological studies in controlled environments.

Just for example about what to worry about when thinking about field data, when I was doing reading about iron deficiency on the internet, there was one guy's website that was like hit 3 or 4 or something, who was determined that north american's are all killing themselves from having too much iron. His data didn't seem falsified or flawed in anyway, but his interpretation of it was questionable. He had data from a large number of mexicans who were anemic or something, and found they also had less heart disease, less cancer, fewer health problems overall, etc. compared to americans. But would you say that low iron caused all those benefits? EVEN if it did, knowing the negative of effects of being anemic, would you want to be anemic?

I wouldn't do that.

a) it's unclear if it will actually work

B) it may, as mommida says, not stay in your intestines. If it moves, not only will it definitely NOT help, it can embed in your liver or something.

c) seems likely that wherever you'd buy these eggs from aren't actually going to be eggs, or they won't be viable eggs. Something ridiculous like 50% of drugs bought off the internet (not sure where else you'd find such an odd therapy) are fake

d) even if it stays in your intestines, and you start to feel better, and it reduces or even stops your body's immune attacks to gluten, it will damage your intestines and will also absorb nutrients that you still need. Sounds like borrowing from Peter to pay Paul...

e) you have a freakin worm living in you....ewwwwwwwwwwwwww. And you'd know about it. Every little pain or gurgle and I'd be like 'omg, it's the worm'

f) if it turns sour, there's not necessarily a clear cut, easy way to get rid of the damned thing(s). There are drugs, but like most things, its hard to find something 100% effective.

g) I've read quite a few opinions, some from GI's, that say that the vast majority of US citizens already have parasites living in them. I mean, all it takes is 1 bite of undercooked meat, your hands not washed properly once.

You have to take any info about these types of things with a grain of salt. The vast majority of stuff I've read about germ theories and us not having enough of them so our immune system decides to attack something else, is correlational research by epidemiologists, not microbiological studies in controlled environments.

Just for example about what to worry about when thinking about field data, when I was doing reading about iron deficiency on the internet, there was one guy's website that was like hit 3 or 4 or something, who was determined that north american's are all killing themselves from having too much iron. His data didn't seem falsified or flawed in anyway, but his interpretation of it was questionable. He had data from a large number of mexicans who were anemic or something, and found they also had less heart disease, less cancer, fewer health problems overall, etc. compared to americans. But would you say that low iron caused all those benefits? EVEN if it did, knowing the negative of effects of being anemic, would you want to be anemic?

dilettantesteph Collaborator

I'm looking forward to hearing how it goes.

ncdave Apprentice

I was told the FDA has banned this treatment in the us, But you can all ways hop a airbus or drive across the Mexican border.

dilettantesteph Collaborator

I wouldn't try it without some good evidence that it works. I'm not going down to Mexico any time soon.

cahill Collaborator

As someone who has celiacs and recently had to deal with intestinal parasites , I am shaking my head in disbelief.

That anyone would intentionally inflict that kind of pain and suffering on their body is just plain insane .

cahill Collaborator

No, but i am going to get it in about a month!! So excited. Ill let you know how it goes.

For all the naysayers who have commented: Do your research!!

After having intestinal parasites I am convinced that I would rather be gluten free FOREVER than deal with parasites EVER again !!!!!!!!!!!

plumbago Experienced

This was introduced as a topic a little while ago, with citations of people who have tried it. Too bad it wasn't picked up there, but anyway...

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. - trents commented on Scott Adams's article in Kids and Celiac Disease
      2

      New Study Reveals Age and Racial Gaps in Pediatric Celiac Testing

    2. - Russ H replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Positive biopsy

    3. - Scott Adams replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Positive biopsy

    4. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New "Glowing Bacteria" Pill Could Transform Gut Disease Detection (+Video)

    5. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      7

      Help understand results

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

    • Total Members
      133,001
    • Most Online (within 30 mins)
      7,748

    bonniebeebe143
    Newest Member
    bonniebeebe143
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility to coeliac disease it should be possible to give a diagnosis. There is a bit more here: Seronegative coeliac disease
    • Scott Adams
      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • trents
      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
    • wellthatsfun
      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
×
×
  • 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.