NEW TO CELIAC DISEASE

[John Scott]

33 minutes ago, trents said:

How many generations back have these drugs even been available?

I believe that anthelmintic drugs were introduced in the mid 1900s.

[Scott Adams]

I'm not sure, but I think the first ones were around in the early 20th century, and were commonly used in the 1940's and 1950's. Of course, better sanitation, clean water, health inspections in restaurants, etc., have made the use of these drugs decline over time.

[Scott Adams]

I just want to share this research regarding hookworms as treatment for celiac disease:

Quote

Hookworm infection does not restore tolerance to sustained moderate consumption of gluten (2 g/d) but was associated with improved symptom scores after intermittent consumption of lower, intermittent gluten doses.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7678792/

 

[Scott Adams]

For anyone interested, @dixonpete just posted a blog update on his hookworm treatment progress:

 

[dixonpete]

On 12/21/2022 at 9:05 PM, Scott Adams said:

I just want to share this research regarding hookworms as treatment for celiac disease:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7678792/

 

A 94-week study was guaranteed to fail. My hookworms have never lasted longer than 26 weeks - they die off by then or age out, I'm not sure which. If I want continuous symptom relief I have to reinoculate a month or so before that.

[dixonpete]

On 6/14/2023 at 3:03 PM, Scott Adams said:

For anyone interested, @dixonpete just posted a blog update on his hookworm treatment progress:

 

If I hadn't embarked on my hookworm journey I likely wouldn't have a colon right now. If all you have to deal with is celiac disease it's manageable. My cousin doesn't seem to mind being celiac. Celiac disease was maybe 15-20% of my calculation to do hookworms. I simply couldn't take the colitis pain anymore.

[Scott Adams]

There seems to be not good way of maintaining an optimal level of hookworms in every individual, and to me it seems like you go by celiac or other symptoms to determine this for yourself. You may have too many at times, which might not be healthy, or too little, which also might not be too healthy. I say just go gluten-free, which is 100% correct for anyone with celiac disease. It's always best to play it safe when it come to your health. You can keep doing the hookworms for your colitis, but still be gluten-free for your celiac disease.

[dixonpete]

7 minutes ago, Scott Adams said:

There seems to be not good way of maintaining an optimal level of hookworms in every individual, and to me it seems like you go by celiac or other symptoms to determine this for yourself. You may have too many at times, which might not be healthy, or too little, which also might not be too healthy. I say just go gluten-free, which is 100% correct for anyone with celiac disease. It's always best to play it safe when it come to your health. You can keep doing the hookworms for your colitis, but still be gluten-free for your celiac disease.

There's a wide margin of safety for hookworms, probably 10X+, so being a little over probably isn't a big deal. The current methods used by providers and the community these days is to inch up the number of hookworms until there's symptom relief. Finding the right number takes time but once you know, you know.

I could go gluten-free but if I did I wouldn't be able to enjoy the grilled cheese sandwich I'm enjoying right now. I'm satisfied it's the correct solution and both conditions are fixed. It just took time to figure things out.

[Scott Adams]

I eat grilled cheese sandwiches once in a while--just with gluten-free bread. I doubt you'd know it was gluten-free, as gluten-free products have vastly improved over the last 25 years, and have dropped in price, and become widely available. I get my bread at Costco for ~$5 a loaf.

[dixonpete]

34 minutes ago, Scott Adams said:

I eat grilled cheese sandwiches once in a while--just with gluten-free bread. I doubt you'd know it was gluten-free, as gluten-free products have vastly improved over the last 25 years, and have dropped in price, and become widely available. I get my bread at Costco for ~$5 a loaf.

I used to buy gluten-free bread at a well known gluten-free bakery. It always still made me ill. I was reacting to the other proteins in the bread I guess. Without hookworms in me I have a very broad spectrum of food sensitivities.

[dixonpete]

53 minutes ago, Scott Adams said:

I eat grilled cheese sandwiches once in a while--just with gluten-free bread. I doubt you'd know it was gluten-free, as gluten-free products have vastly improved over the last 25 years, and have dropped in price, and become widely available. I get my bread at Costco for ~$5 a loaf.

I guess you could say hookworms would allow me to eat gluten-free bread!

At issue though is you still believe gluten remains a threat while on hookworms. I don't believe it does, for me anyway, as there's no evidence for that. Others in my situation have taken all the tests including biopsies and passed.

I consider celiac disease an unstable, vulnerable state. The immune system is broken. And some gluten exposure is inevitable no matter how careful a person is. Also, having my life defined that way just isn't something I want to deal with.

[knitty kitty]

@dixonpete,

I've come across a couple of scientific studies that show there's minimal benefit in gluten tolerance in Celiacs with hookworms. 

One study concluded Celiacs with hookworms occasionally exposed to small amounts of gluten may show less immediate damage than a Celiac without hookworms, but with loss of quality of life.  

It sounds like you're eating more gluten than an occasional small amount.  It's concerning.

Effect of Hookworm Infection on Wheat Challenge in Celiac Disease – A Randomised Double-Blinded Placebo Controlled Trial

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017366

And...

Randomized, Placebo Controlled Trial of Experimental Hookworm Infection for Improving Gluten Tolerance in Celiac Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7678792/

[dixonpete]

9 minutes ago, knitty kitty said:

@dixonpete,

I've come across a couple of scientific studies that show there's minimal benefit in gluten tolerance in Celiacs with hookworms. 

One study concluded Celiacs with hookworms occasionally exposed to small amounts of gluten may show less immediate damage than a Celiac without hookworms, but with loss of quality of life.  

It sounds like you're eating more gluten than an occasional small amount.  It's concerning.

Effect of Hookworm Infection on Wheat Challenge in Celiac Disease – A Randomised Double-Blinded Placebo Controlled Trial

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017366

And...

Randomized, Placebo Controlled Trial of Experimental Hookworm Infection for Improving Gluten Tolerance in Celiac Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7678792/

Those studies don't reflect real life experience of self-treaters. Some hookworm hosts experience full relief from celiac symptoms and pass all the tests, others not so much. You don't know what basket you fall into until you try.

I used to blow up bathrooms on the smallest gluten exposure. Now? Nothing. Worse was the hour long scream fests from the colitis attacks. I don't miss those.

 

[John Scott]

34 minutes ago, knitty kitty said:

@dixonpete,

I've come across a couple of scientific studies that show there's minimal benefit in gluten tolerance in Celiacs with hookworms. 

One study concluded Celiacs with hookworms occasionally exposed to small amounts of gluten may show less immediate damage than a Celiac without hookworms, but with loss of quality of life.  

It sounds like you're eating more gluten than an occasional small amount.  It's concerning.

Effect of Hookworm Infection on Wheat Challenge in Celiac Disease – A Randomised Double-Blinded Placebo Controlled Trial

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017366

And...

Randomized, Placebo Controlled Trial of Experimental Hookworm Infection for Improving Gluten Tolerance in Celiac Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7678792/

@knitty kitty, please see my previous post and subsequent comments about the 2020 study that you mention.

https://www.celiac.com/celiac-disease/hookworm-infection-no-magic-bullet-for-gluten-tolerance-in-celiac-disease-r6096/?tab=comments#comment-23528

[John Scott]

1 hour ago, knitty kitty said:

@dixonpete,

I've come across a couple of scientific studies that show there's minimal benefit in gluten tolerance in Celiacs with hookworms. 

One study concluded Celiacs with hookworms occasionally exposed to small amounts of gluten may show less immediate damage than a Celiac without hookworms, but with loss of quality of life.  

It sounds like you're eating more gluten than an occasional small amount.  It's concerning.

Effect of Hookworm Infection on Wheat Challenge in Celiac Disease – A Randomised Double-Blinded Placebo Controlled Trial

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017366

And...

Randomized, Placebo Controlled Trial of Experimental Hookworm Infection for Improving Gluten Tolerance in Celiac Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7678792/

I'm re-posting the entire comment that I referenced above because I've noticed that some of the links in that earlier post have expired due to a site migration.

The conclusion by the authors of the later of the two studies you mention above - Croese et al, 2020 (1) - that infection with NA does not obviate the need for a gluten-free diet is rendered unreliable by methodological deficiencies in the trial design.

The trial participants each received two doses of either 10x or 20x N. americanus (NA) hookworm larvae at weeks 0 and 8, and were challenged with gluten between weeks 12 and 42, with an optional 52 week extension for those participants without celiac disease symptoms. However…

* The trial period was of insufficient length. While some of the benefits derived from hosting NA may begin to appear within a few weeks, they do not become consistent until at least 12 weeks, and, in some cases, can take up to 2 years to fully develop. (2)

* Some participants may have received an inadequate number of NA. The level of helminth dosing required to achieve disease remission in different hosts can vary by a factor of 10. (3)

* Dosing with NA may not have been continued for long enough to maintain efficacy. While NA have been reported to survive in hosts for many years, data gathered from the community of thousands of helminth self-treaters show that, in practice, NA may survive for as little as 2-3 months in some individuals, especially those with digestive diseases. (2)

* The worms hosted by some trial participants may have lost efficacy before the end of the trial, due to the possible ingestion of certain dietary substances that can adversely affect, or even kill, NA in some individuals. (4)

A more recent study, by Venkatakrishnan et al (3), has highlighted the fact that some “gold standard” helminthic therapy trials, have, in spite of their double-blind, placebo-controlled design, provided lacklustre or even false negative results due to a lack of adequate consideration of the biology of living helminths and their interactions with their hosts - exactly the points I have made immediately above.

For more about these issues, see: Problems with clinical trials using live helminths: Trialing the human hookworm (NA). (5)

(1) Randomized, Placebo Controlled Trial of Experimental Hookworm Infection for Improving Gluten Tolerance in Celiac Disease

(2) Hookworm dosing and response

(3) Socio-medical studies of individuals self-treating with helminths provide insight into clinical trial design for assessing helminth therapy

(4) Human helminth care manual

(5) Problems with clinical trials using live helminths 

 

 

 

[dixonpete]

Not to belabor the point, but I exist. I read the forums and I'd put my former celiac symptoms up there with anyone here. Hookworms can work for celiac disease, my experience proves it. There is a working mechanism there.

The only question is how broadly efficacious hookworms are when used with best practices. The only way to find that out is to have celiacs try them and report back what happened. That's what the Helminthic Therapy Support Group is for.

A light hookworm infection is generally regarded as harmless and not worth treating. IMO it's an easy choice to make. You can't win if you don't play.

[Scott Adams]

3 hours ago, dixonpete said:

Those studies don't reflect real life experience of self-treaters. Some hookworm hosts experience full relief from celiac symptoms and pass all the tests, others not so much. You don't know what basket you fall into until you try.

I used to blow up bathrooms on the smallest gluten exposure. Now? Nothing. Worse was the hour long scream fests from the colitis attacks. I don't miss those.

 

Doctors who are experts on celiac disease (and much research that has been done on celiac disease) will tell you that you cannot judge the impacts that celiac disease has on your health based on your symptoms alone. Only regular celiac disease blood panels and endoscopies can tell for sure if the hookworms have "cured" you, but you don't do this follow up. Until you do, please don't tout this as a cure, because it's not.

 

[dixonpete]

You've seen my "A1" antibody test and I've told you my GP declined to do the biopsy.

In my blog and elsewhere I've described what my life was like before hookworms and afterward. It's night and day. Some months ago I also sent you a link to a video where an expert in treating people with helminths described his celiac patients passing those tests after hosting hookworms. It does happen, but it's not a cure and I've never said it was. It's remission.

My best guess on average across all celiacs would a dramatic reduction in reaction to gluten, say going from being violently ill from gluten exposure for a couple of hours to maybe just having a slight stomach ache, with a general reduction of the food sensitivities. They'd still want to stay gluten-free, but catastrophic illness wouldn't happen anymore. Some percentage of hookworm hosts do get a free pass on gluten, whether you care to believe it or not. I just can't tell you what that number is.

[Scott Adams]

Don't forget to add that there is absolutely zero science that supports long-term remission of celiac disease in those with hookworm infection who eat gluten daily. I'd need to see long-term studies--several of them that last 5 years or more and include hundreds of participants--before I could be convinced that this is a reasonable alternative treatment for celiac disease place of the gluten-free diet, where the scientific evidence is quite clear.

Since you have both Crohn's disease and celiac disease your situation is very different than the vast majority of people who visit this forum, but I believe you should still be on a gluten-free diet until there is a lot more science on this subject. The few studies that have been done clearly show that hookworm infection does not allow celiacs to eat gluten again, which you and @John Scott (who I believe sells hookworms--please correct me here if I am wrong) spend so much time trying to refute. If only the study had lasted longer...then it would have shown better results, right? I doubt it. I don't think you two are qualified to make such conclusions, and the people who did those studies are. 

[dixonpete]

24 minutes ago, Scott Adams said:

Don't forget to add that there is absolutely zero science that supports long-term remission of celiac disease in those with hookworm infection who eat gluten daily. I'd need to see long-term studies--several of them that last 5 years or more and include hundreds of participants--before I could be convinced that this is a reasonable alternative treatment for celiac disease place of the gluten-free diet, where the scientific evidence in quite clear.

Since you have both Cron's disease and celiac disease your situation is very different than the vast majority of people who visit this forum, but I believe you should still be on a gluten-free diet until there is a lot more science on this subject that the few studies that have been done that clearly show that it doesn't work, that both you and @John Scott (who I believe sells hookworms--please correct me here if I am wrong) spend so much time trying to refute. If only the study had lasted longer...then it would have shown better results, right? I doubt it. I don't think you two are qualified to make such conclusions, and the people who did those studies are. 

I have ulcerative colitis that's greatly, or was greatly, aggravated by food, in particular meat protein, and celiac disease. The colitis is totally gone for sure as shown by regular colonoscopies. I see the celiac disease as gone the same way. Gluten is regular part of my diet now as is meat. It is what it is.

John can speak for himself but I don't believe he sells anything, no books, no hookworms, no nada. He used to pay all the web expenses out of pocket though donations can now be made. Don't know if that amounts to much. He used to be way worse than me, down to only being able to eat medical pablum. Hookworms restored him to health and I don't think he has any food sensitivities for so long as he keeps up his inoculations. He does what he does to help people.

John is at the focal point of all helminthic therapy activity in the world. He knows all the research and researchers, and collects every scrap of available information and puts it in the wiki. I think it's fair to say nobody knows more about the topic than him.

[Scott Adams]

A lot of people say the same thing about me and celiac disease…but I don’t claim to know more about how to conduct celiac disease studies than true experts and trained scientists, and apparently he does.

[dixonpete]

5 minutes ago, Scott Adams said:

A lot of people say the same thing about me and celiac disease…but I don’t claim to know more about how to conduct celiac disease studies than true experts and trained scientists, and apparently he does.

Like I said, a 90+ week study is silly because hookworms typically don't last near that long, not in people with active immune gut problems anyway. So yeah, even I know better than those researchers did in that respect. The Helminthic Therapy Support Group of which John Scott heads has for years coached thousands of people though the process of using helminths and the admins are all helminth hosts themselves. Do I think the group and John knows more than the researchers how to use helminths effectively? Yes I do think that. The protocols have been built over years of trial and error.

There is a paucity of research for celiacs and hookworms. I wish more celiacs would try them so we'd have better numbers. All I can tell you is I know what it is to be gut sick. I was ready to end it. Now I'm totally fine with no meds required and on an unresticted diet. Make of that what you will. 

[John Scott]

3 hours ago, Scott Adams said:

Don't forget to add that there is absolutely zero science that supports long-term remission of celiac disease in those with hookworm infection who eat gluten daily. I'd need to see long-term studies--several of them that last 5 years or more and include hundreds of participants--before I could be convinced that this is a reasonable alternative treatment for celiac disease place of the gluten-free diet, where the scientific evidence is quite clear.

Since you have both Crohn's disease and celiac disease your situation is very different than the vast majority of people who visit this forum, but I believe you should still be on a gluten-free diet until there is a lot more science on this subject. The few studies that have been done clearly show that hookworm infection does not allow celiacs to eat gluten again, which you and @John Scott (who I believe sells hookworms--please correct me here if I am wrong) spend so much time trying to refute. If only the study had lasted longer...then it would have shown better results, right? I doubt it. I don't think you two are qualified to make such conclusions, and the people who did those studies are. 

@Scott Adams. Firstly, I do not sell hookworms! As I’ve told you privately in the past, I make no money whatsoever from helminthic therapy. What I have done is founded the Helminthic Therapy wiki, which is the world’s largest information database documenting the science, management, experience and results of helminth replacement, a form of probiotic self-treatment, not a medical therapy. The HT wiki makes no money for me or anyone else. It is managed by volunteers, including myself, and supported solely by donation.

Secondly, I am not saying that helminthic therapy is a cure for celiac disease or for any other condition. What I am saying is that hosting therapeutic helminths can improve health for everyone, irrespective of their medical condition, or lack of one, and especially if they have a condition that is immune-related.

By 1990, it had become clear from scientific studies (all citations are available in the HT wiki) that, while autoimmune, inflammatory and allergic conditions had escalated in developed countries during the twentieth century, in line with the gradual reduction in the numbers of helminths being hosted by these populations, these conditions had remained much less common in parts of the world where helminths are still prevalent. This is revealed in the following distribution graphic prepared at the start of this century by the late Prof Robert Summers.

http://static.cdn-seekingalpha.com/uploads/2012/5/12/1122334-13368327296724055-Iggy-Igette_origin.webp

It was this realisation that gave rise to the idea of reintroducing safe, "therapeutic" helminths into patients who have developed immune-related conditions, in the hope that this intervention might rebalance their immune system and help restore their health. And science has provided a number of indications that helminthic therapy might offer benefits to those with celiac disease, including the following study, whose authors concluded that: "Necator americanus and gluten microchallenge promoted tolerance and stabilized or improved all tested indices of gluten toxicity in CeD subjects."

https://www.jacionline.org/article/S0091-6749(14)01010-0/fulltext

Helminthic therapy does not "cure" any condition - it only provides disease remission for as long as there are active, adult worms present in the gut to modulate the host’s immune response. For a few with celiac disease, helminths may provide full remission, while, for many others, it offers a reduction in adverse response to gluten, a benefit that can make life a lot easier for celiacs by significantly reducing the effects of accidental exposures.

Further evidence that hosting therapeutic helminths can provide benefits for those with celiac disease is provided in the anecdotal reports at the following link.

https://htwiki.mywikis.eu/wiki/Helminthic_therapy_personal_stories#Coeliac_/_celiac_disease

To insist on waiting for, "long-term studies--several of them that last 5 years or more and include hundreds of participants" is completely unrealistic. Living helminths cannot be patented, so it is extremely unlikely that anyone will put up the necessary finance (many millions of dollars) knowing that there is little or no prospect of a return on their investment.

The studies using hookworms that have been done to date have been mounted by research teams whose primary focus is the identification and eventual synthesis of helminth-derived molecules to create pharmaceutical products. ("Drugs from Bugs") They have to run trials using human subjects because hookworms don’t mature outside the human gut, so the researchers need blood from colonised human volunteers in order to advance their research. These scientists have little, if any, interest in ever using living helminths as a therapy, which greatly reduces the chances of them conducting their trials in a way that would provide a realistic assessment of the true therapeutic potential of these organisms. (See my previous post in this thread for more about the conduct of trials involving hookworms.)

This is why thousands of sick individuals such as @dixonpete and myself have taken matters into our own hands. We simply couldn’t wait the many years that helminth-derived product therapy (HDPT) will take before it becomes available to the clinic. And, when it does, there is no guarantee that the resulting drugs will be as free from long-term adverse side effects as helminthic therapy is.

Helminth replacement therapy is available now. It’s safe, it’s simple to use as a self-treatment and it has many benefits. As one team of researchers stated last year,

"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 . 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."

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

[John Scott]

2 hours ago, Scott Adams said:

A lot of people say the same thing about me and celiac disease…but I don’t claim to know more about how to conduct celiac disease studies than true experts and trained scientists, and apparently he does.

@Scott Adams

It isn't about who knows more. It’s about being free to look at all the available evidence objectively and understanding all the factors involved, many of which are set out in detail at the following link. But, in order to understand this yourself, you do need to actually read the details.

https://htwiki.mywikis.eu/wiki/Helminthic_therapy_research#Problems_with_clinical_trials_using_live_helminths

Even "true experts and trained scientists" are restricted in various ways in what they are able to do, and I’m not the only one to be able to see the significant flaws in many of the helminth trials to date, as is made clear in the following quote.

"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."

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

Venkatakrishnan, et al, elaborate on this elsewhere in the same paper, e.g.,

"Unfortunately, clinical trials approved by regulatory agencies probing the effectiveness of helminth therapy have been limited, in part by intellectual property rights [24] and regulatory issues [25]… current regulations are designed for testing of pharmaceutical compounds that are extremely well defined in terms of their physical/chemical properties. A given species of helminth, on the other hand, may be cultivated in dozens of ways and may have genetic variation. Characterization of the clinical impact of each individual variation would be a cost-prohibitive endeavor. Unfortunately… factors associated with formulation of therapeutic helminths may have profoundly impeded at least some clinical trials performed to date. 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."

[Scott Adams]

None of anything you've said so far justifies the need for @dixonpete to eat gluten--nada. The safe bet, given the lack of science supporting the safety of someone with celiac disease being able to eat gluten again after hookworm infection, is to not eat gluten--the scientific studies done so far also support this position. The only real excuse I hear is that he doesn't like gluten-free food and would miss gluten too much, and has become asymptomatic when he eats gluten now. As mentioned, asymptomatic celiacs are quite common, and no symptoms does not equal no disease. @dixonpete gets regular colonoscopies, but NOT regular endoscopies--until this happens and no signs of disease are present, touting here that hookworms make it safe for him to eat gluten is irresponsible--and you're both now being warned to stop doing this on this forum.

Neither of you have presented any real evidence that hookworms effectively treat celiac disease.