Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Has Anyone Had Any Success With Tso/whipworm And/or Hookworm Therapy?
0

21 posts in this topic

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...

Helminthic therapy

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

2

Share this post


Link to post
Share on other sites
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...

Helminthic therapy

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

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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:

2

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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...

Helminthic therapy

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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 .

0

Share this post


Link to post
Share on other sites

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 !!!!!!!!!!!

0

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,145
    • Total Posts
      919,571
  • Topics

  • Posts

    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,177
    • Most Online
      1,763

    Newest Member
    lolobaggins
    Joined