Man Claims Hookworm Treatment Led to Remission of Celiac Disease

1 minute ago, trents said:

It just seems like there are too many variables involved with this helminth therapy to have any certainty that it is working. You're saying it can take up to two years for it to become effective? How do you even know when it has become effective? What, do you have to get a celiac antibody test every few months?

For me it was pretty obvious, but I had a lot of things wrong with me. Reduction of bowel movements from 6 per day to 1-2 with much better formed, painless stools. I had near global food sensitivities, and now I have a near cast iron stomach. And of course, the ability to consume gluten without wanting to die.

Just now, trents said:

It just seems like there are too many variables involved with this helminth therapy to have any certainty that it is working. You're saying it can take up to two years for it to become effective? How do you even know when it has become effective? What, do you have to get a celiac antibody test every few months?

Helminthic therapy is being used to treat over 160 different conditions, not just celiac, and, in the vast majority of cases, the self-treater knows that it's working when they start to feel better. At that point, the number of variables don't matter any more. Relief is sweet, however long it takes to appear.

@John Scott, could you please explain your connection with helminthictherapywiki.org and Helminthic therapy? Do you sell these hookworm kits to people? You seem to be an avid supporter of this therapy, so it's fair to explain your connection here, and whether or not you gain anything by pushing such treatments.

You mentioned that there is only one type of worm that is safe for humans, but going back in time most humans likely got the wrong kind of worm...is that fair to say? In the cases where they got the wrong hookworms, such parasitic infections were likely a huge net-negative for their hosts, which is why getting rid of them was a huge benefit for most people.

You are now proposing that there is a single type of "safer" hookworm that might cure celiac disease, as well as many other autoimmune diseases, even though the published scientific research so far doesn't support this position--at least for celiac disease. Why should we believe you over the many respected PhD's involved in the study?

1 hour ago, Scott Adams said:

@John Scott, could you please explain your connection with helminthictherapywiki.org and Helminthic therapy? Do you sell these hookworm kits to people? You seem to be an avid supporter of this therapy, so it's fair to explain your connection here, and whether or not you gain anything by pushing such treatments.

You mentioned that there is only one type of worm that is safe for humans, but going back in time most humans likely got the wrong kind of worm...is that fair to say? In the cases where they got the wrong hookworms, such parasitic infections were likely a huge net-negative for their hosts, which is why getting rid of them was a huge benefit for most people.

You are now proposing that there is a single type of "safer" hookworm that might cure celiac disease, as well as many other autoimmune diseases, even though the published scientific research so far doesn't support this position--at least for celiac disease. Why should we believe you over the many respected PhD's involved in the study?

@Scott Adams, I founded the Helminthic Therapy wiki six years ago to share the data I’d begun to gather on this treatment four years previously. I have no financial interest in the therapy and, in fact, it has cost me quite a lot of money, not only what I paid out for the setup of the website, and for its maintenance in the first four years, but also in income that I could have had if I’d spent the past decade on a different project!

My motivation comes from the fact that hookworms saved my life when I could no longer tolerate ANY normal foods whatsoever. I even reacted adversely to intravenous Total Parenteral Nutrition. Twelve weeks after I introduced hookworms, I was able to resume eating a few basic food items. After 18 months, I was back to a full, normal diet and have continued on this for the past 13 years, during which I have carefully maintained my hookworm colony. So I owe my life to the worms, and feel a responsibility to enlighten others to the life-changing potential they represent for anyone with an immune-related condition.

There are currently only four helminths that have been identified as safe for use in therapy, due to them meeting a set of criteria that include the absence of pathogenicity.

https://helminthictherapywiki.org/wiki/index.php/Introduction_to_helminthic_therapy#Therapeutic_helminths 

There may be many other suitable species, but they just haven’t been found yet.

https://pubmed.ncbi.nlm.nih.gov/31153721/ 

All helminths provide their hosts with benefits as well as, in some cases, disadvantages. When researchers surveyed multiple sclerosis patients who had accidentally become colonised by one or more of a variety of helminths, they found that, irrespective of the species being hosted, all had experienced a reduced number of disease exacerbations compared with patients who were helminth-free.

https://pubmed.ncbi.nlm.nih.gov/17230481/ 

So, even if someone were to get the "wrong" worm species, the result would not be "a huge net-negative" for their hosts in most cases. And, today, as a result of the effects of industrialisation, we in the West have the advantage of being able to avoid all the less desirable species and host only those that are benign. This allows us to reap the immune-enhancing effects without any downside.

I’m not the only one drawing attention to the design flaws inherent in many of the helminthic therapy clinical trials. Earlier this year, Venkatakrishnan et al also drew attention to this phenomenon.

https://www.sciencedirect.com/science/article/pii/S1383576921002063?via%3Dihub 

Their conclusions is as follows.

"Helminth therapy addresses a fundamental cause of chronic inflammatory disease in Western society. In particular, helminth therapy reverses the loss of helminths in Western society that has left the immune system overreactive and prone to allergic, autoimmune, and neuropsychiatric disorders [17,55]. At the present time, we would argue that the primary “lab” for helminth therapy seems to be within the community of self-treaters. This “biohacking” phenomena of science outside of the established main stream is not unique to helminth therapy. However, given that helminth therapy addresses a fundamental cause of disease in Western society, this particular biohacking endeavor may in fact be critical for public health. Unfortunately, for a variety of economic, regulatory, and practical issues surrounding the conduct of clinical trials, main stream trials have thus far been unable to accommodate the nuances of helminth therapy. Foremost among the issues that clinical trials must address before they can effectively test the potential for helminth therapy are (a) details in formulation of the helminth product that affect efficacy, and (b) the very wide range of doses typically needed within a cohort of individuals."

In addition to using methods developed for the testing of pharmaceutical products rather than living organisms, those researchers who have conducted clinical trials using helminths have only ever worked with very small numbers of patients, so do not have the wealth of experience with this therapy that is available within the community of helminth self-treaters.

"Thus, at the present time, systematic data gathering from individuals self-treating may be the most practical and effective means of evaluating the effects of helminth therapy."

And Venkatakrishnan et al set out nine factors which indicate that results gleaned from the helminthic therapy community are not artifacts due to placebo effects, normalization to the mean, survivor bias, conflicts with commercial interests, or other issues unrelated to the actual benefits and risks of the therapy.

Just to add to John's comment, it wasn't him that claimed that Hookworms could cure celiac disease. I believe the words he used were 'to treat'. It was me that said hookworms were keeping my celiac disease and ulcerative colitis in remission. And that for me, hookworms are effectively a cure for those two conditions for so long as my colony is healthy.

I recently came back to celiac.com expressly to see how many people were using hookworms. I can see in my profile I first signed up in Aug 2008. That would have been about a month after I figured out I was celiac. Obviously I wanted to share the news of my good fortune.

For the last year I've been spending a lot of time in the Facebook Helminth Support Group and have gotten to know John and the other admins well. When I noticed the article I shared the link with him.

John is the world's leading authority in the practical use of helminths to treat autoimmune disease. He's done the lion's share of the work putting together the Wiki that contains information on all aspects of Helminthic Therapy, all the lessons learned by the members, all the relevant research. He is constantly coaching people through the process of getting started with helminths.

It's my personal belief that hosting hookworms would spare most celiacs the experience of being glutened from casual exposure. That alone would have high value, or at least I hope it would. A subset of those people would go back to being normal and be able to go back on a regular diet like I have done. What the exact percentage that would be I have no idea, but for celiac.com 110k membership I have no doubt it would be many thousands.

As I said before, hookworms aren't that expensive, so I think it makes sense to try them at least once as it might be life changing for the person.

As for your comment about me going into spontaneous remission, back in 2019 when my worms died off (I actually saw the white corpses in my stool) I got sick again in short order. General GI distress, gas, and finally soiling the bed got me back to going gluten-free and meat-free again. My case may be anecdotal, but it's a damn good anecdote.

I don't have any intention of causing a fuss. I genuinely like helping people and for me telling celiac and colitis sufferers about my experience definitely falls into that camp. Actually, I tell everybody. I'm that happy to be well again, but at this point here I think I've made my case as best I can.

I suppose some celiacs who don't recover via a gluten-free diet may want to try hookworm infection, but for most celiacs, including myself, a gluten-free diet is a much better choice.

You've implied that going back in time when humans were regularly infected by hookworms we were somehow healthier than we are now, which is just not supported by any evidence. There is, however, strong evidence to support that humans did not start eating gluten and grains until ~12,000 to 15,000 years ago, which is literally a blink of an eye in terms of evolution, so it's clear that not eating grains would be a much better health solution for most people than hookworm infection.

You've also tried to shoot down a scientific study which indicates that hookworm infection will NOT allow a person with celiac disease to resume a normal gluten-filled diet, yet you haven't shared with us any scientific studies which support your claim that hookworm infection can cause celiac disease to go into remission, and allow celiacs to eat gluten normally again. Until you have provided such scientific evidence, all you have is your anecdotal claims and untested hypotheses, which are interesting, but lack any real substance.

I see nothing wrong with the study that was conducted, and I suspect that had the study introduced gluten after a longer time period, for example 6 months and had the same outcome, you would criticize it for not waiting until 9 months. Again, I believe that the experts involved in that study understood how to conduct it properly, and have reported their findings accurately--hookworms are not likely the magic bullet that will allow celiacs to eat gluten again (and humans should probably not be eating it anyway).

Just looking at that study you mentioned to John Scott.

When I did my first inoculation back in late July 2018, my hookworms all died off around late Feb 2019. I saw the bodies. That makes it roughly 30 weeks, just over 1/2 a year.

If the study lasted 94 weeks I would have been forced to withdraw less than 1/3 of the way through. I'd call that a serious study flaw. Plenty of the people in our group inoculate every 3 months because they've found that works best for them. They possibly would have flunked out 1/6th the way through.

John Scott wasn't kidding when he said treatment procedure matters.

Criticizing this study still does not provide real scientific support to the claim that hookworm treatments can allow celiacs to eat a regular gluten diet again.

In science it is up to those who make such a claim, which could be dangerous, to provide the evidence that supports it. So far it seems like it is just a few people who are doing this, and you're the first person I've heard of whose eating gluten again without issues, and so far you've had a single blood test that shows no elevated anti-gliadin antibodies. I would be more convinced to see 100 celiacs doing this who had follow up bloodwork for more than 2 years that showed no issues in a majority of them, but so far there is little to no data on this, with the exception of that study which indicates that eating gluten again isn't an option.

I hope more studies will be done. Perhaps @John Scott could reach out to the authors of this study and work with them on another one?

3 hours ago, Scott Adams said:

Criticizing this study still does not provide real scientific support to the claim that hookworm treatments can allow celiacs to eat a regular gluten diet again.

In science it is up to those who make such a claim, which could be dangerous, to provide the evidence that supports it. So far it seems like it is just a few people who are doing this, and you're the first person I've heard of whose eating gluten again without issues, and so far you've had a single blood test that shows no elevated anti-gliadin antibodies. I would be more convinced to see 100 celiacs doing this who had follow up bloodwork for more than 2 years that showed no issues in a majority of them, but so far there is little to no data on this, with the exception of that study which indicates that eating gluten again isn't an option.

I hope more studies will be done. Perhaps @John Scott could reach out to the authors of this study and work with them on another one?

@Scott Adams, I agree that criticizing the Croese et al study doesn’t provide scientific support for a claim that hosting hookworms can allow celiacs to regularly eat gluten, but that wasn’t my intention, or my claim. In explaining the methodological flaws in their study, I was merely pointing out that the conclusions drawn by these authors cannot be relied upon. And this means that study participants may have seen better outcomes had the trial design been different.

I would very much welcome further studies, but I’m not at all confident that there will be any in the foreseeable future that would employ better methodology in the assessment of the potential benefits to celiacs of hosting living helminths.

Clinical trials cost millions of dollars, and finding someone willing to put up this kind of money to test a living helminth is virtually impossible because living organisms can’t be patented, so backers would  be unlikely to get any return on their investment. The reason that backers have been found for the hookworm trials that have been done so far in England and Australasia is that those who have conducted the research have not really been interested in progressing to the use of living worms to treat patients, but in generating data that would be useful to them in pursuing the development of helminth-derived pharmaceutical products, which, being synthetic, would of course be patentable.

With the vast majority of hookworm researchers either working towards drug creation or the development of a vaccine to eradicate hookworms, they have no reason to design their trials to yield evidence that’s most appropriate to assessment of the worms as therapeutic agents themselves.

But, as Venkatakrishnan et al have pointed out recently, the primary “lab” for helminthic therapy is now within the community of self-treaters, and it’s very clear from the data we have gathered that hookworms do have a valuable role to play in improving the health of people with immune-related disorders, including celiac disease. You might find it helpful to read this paper in full.
https://www.sciencedirect.com/science/article/pii/S1383576921002063?via%3Dihub 

Hosting helminths certainly isn’t going to allow every celiac to freely eat gluten, but the evidence we have shows that hosting worms improves the health of approximately 75% of all those who adopt them, whatever medical condition they might have. There may be some celiacs who will be able to eat gluten without triggering any damage, and there will be others who experience no benefit whatsoever, but it’s likely that many will find that they are able to at least live without the fear of being severely incapacitated by inadvertent gluten exposures - and that alone is quite a big deal!

* There is extensive evidence that the human immune system functions best when there are benign worms present in the gut.
https://helminthictherapywiki.org/wiki/index.php/Introduction_to_helminthic_therapy#Humans_need_helminths 

* There are numerous researchers who support the use of helminthic therapy.
https://helminthictherapywiki.org/wiki/index.php/Helminthic_therapy_research#What_researchers_say_about_helminthic_therapy 

* Helminthic therapy is very safe and, if practiced as recommended, has no long term side effects.
https://helminthictherapywiki.org/wiki/index.php/Helminthic_therapy_safety 

* Suitable mutualistic, "probiotic" helminths are available now from a number of recommended online providers.
https://helminthictherapywiki.org/wiki/index.php/Helminth_providers 

17 hours ago, dixonpete said:

That makes it roughly 30 weeks, just over 1/2 a year.

I am glad it works for you but I wonder if you are vitamin deficient. Given the typical diagnosis time frame of 10 years for Celiac Disease you are ahead of the curve. But I believe that if a treatment takes more than a short time to show any effects, it is not the optimal treatment. I was so sick I could only lie in bed and listen to TV. Any movement was excruciating. Aspirin relieved my pain enough to watch. 800 mg advil 3 times a day allowed me to sit up and the more potent NSAIDs were no better. By serendipity I got gout and the prednisone treatment also relieved my pain so I could walk about. By the third day I was almost pain free. Two years later I started GFD and started working on my 19 symptoms that night. Sleep apnea was not as bad that very first night. When I started 10,000 IU vitamin D3 it took only three days to improve my mood and reverse a long period of depression.  It did take 6 years to raise my D plasma to 80 ng/ml. 8 Years later I am not affected by cross contamination. A sheet of nori each day started to improve my upper body muscle tone in about a week. A couple weeks of 500 mg each of B1, B3, B5, B12 and Choline has raised my energy level to almost normal. Also lost 15 lbs of belly fat over the summer.

Lisinopril and Amlodipine for BP made me miserable for two months and did not lower by BP, it actually increased it. Hydrozoline makes me walk with the Old Man Shuffle within an hour of dosing, no effect on BP. In contrast I recently (different doctor) started Clonidine and it lowers my BP from 180 to 130 in about 2 hours with no side effects. 

Quote

Helminth infection including infection by schistosomes, modulates the host immune response, manifesting as diminished allergic responses, amelioration of autoimmune disease, and chronic parasitic infection [9–11]. Immunomodulation is mediated by regulatory T cells (TREG) through direct contact stimulation and IL-10 production [12, 13]. While the switch to TH2 which occurs during helminth infection is an effective antiparasitic response, it is unclear whether superimposition of regulatory responses primarily benefits the worms or the host. Downregulation of the inflammatory response would reduce host mediated immunopathology but also reduce protection [9, 14]. These effects are seen as a diminished allergic response, amelioration of autoimmune disease and chronic parasitic infection... In conclusion the study showed that while levels of vitamin A and iron where within normal ranges, there was a deficiency of vitamin D in 67.2% of the study population as well as elevated levels of sTfR in 28.6% of the participants. 

That half a year (7 months) was just the lifetime of my first batch of hookworms. They died en masse for some reason. I would have expected a slower rate of attrition.

If you were referring to my self-diagnosis of celiac disease that was two uncomfortable years. I was just reading recently about the history of the discovery of wheat/gluten as the causative agent of celiac disease. Apparently some researchers never found the cause. I don't really understand that because it only took me 3 weeks of elimination dieting before I figured it out. I suppose it helped that my gluten reactions were quick and extreme making the association easier to make. I went from upwards of 11x being sick a day to zero illness the day after I stopped gluten. It was pretty darn obvious. As were reconstructing the accidental glutenings I had thereafter.

Vitamin deficiency doesn't seem to be an issue. My blood work is fine, I feel good. My diet is pretty varied now. I do supplement with Vit D.

On 12/16/2022 at 1:45 PM, Blue-Sky said:

Hookworms can enter through someone's foot...travel up their leg...eat through their lungs...get coughed up...then swallowed make their way to the small intestine and grow there.  😅😁

They cause major blood loss do to internal bleeding. I am not quite sure how people survive hookworm infections.

In nature, that may be true. However, these hookworm treatments apply limited hookworms directly into the small intestine. They are safe, don't reproduce, and don't cause the problems you're citing.