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

Bookie53463

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Bookie53463 Rookie
Bookie53463
Posted

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...

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ravenwoodglass Mentor
ravenwoodglass
Posted

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
Integrativedoc
Posted
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
Bookie53463
Posted
  • Author
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
Liz617
Posted

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
VioletBlue
Posted

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
ravenwoodglass
Posted

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.

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  • 1 year later...
ursenay Newbie
ursenay
Posted

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
mommida
Posted

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
dilettantesteph
Posted

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
Gemini
Posted

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
dilettantesteph
Posted

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
cavernio
Posted

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
ljubljanan
Posted

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
ljubljanan
Posted

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
dilettantesteph
Posted

I'm looking forward to hearing how it goes.

ncdave Apprentice
ncdave
Posted

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
dilettantesteph
Posted

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

cahill Collaborator
cahill
Posted

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
cahill
Posted

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
plumbago
Posted

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...

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For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. 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      Is this celiac?

      By Wheatwacked · Posted

      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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