Man Claims Hookworm Treatment Led to Remission of Celiac Disease

12 minutes ago, Blue-Sky said:

In this trial hookworms were ineffective as a treatment or Celiac disease for over 2>gram a day of gluten but helpful for lower amounts.

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

That's what the study authors concluded based on the the data they obtained, but the trial design was flawed. Most of the clinical trials conducted to date have been seriously flawed because the researchers used methodology designed for testing synthetic drugs rather than living organisms. If you're interested, the problems with this and other similar trials are detailed here: 

Problems with clinical trials using live helminths
 

2 hours ago, Scott Adams said:

Yes, in fact the average human lifespan has more than doubled in the last 120 years, which can be attributed to better medicine, vaccines, fertilizer, pesticides, access to clean water, better nutrition, increased crop yields, etc.

Still, if hookworms can provide what might be the first true cure for celiac disease and allow, at least some of them, to eat gluten again without issues, it's definitely worth more study and research. My thought here is that it is important to discover the source of exactly how the infection regulates an overactive immune system, and perhaps that could lead to a drug or vaccine that would provide the same effect, without the need to host a parasite.

How the worms actually do it is quite complicated, and still not fully understood. One researcher who has been working on this for several decades has told me that the worms are particularly resistant to yielding up their secrets! For example, they excrete/secrete an entire "orchestra" of chemicals - at least 200 of them. Quite astonishing!

What we do know already is covered here:

The effects of helminths on the immune system

A number of scientists are agreed that the worms themselves will likely always be superior to synthetic helminth-derived medications.

Living helminths are better than helminth-inspired drugs 

22 minutes ago, John Scott said:

That's what the study authors concluded based on the the data they obtained, but the trial design was flawed. Most of the clinical trials conducted to date have been seriously flawed because the researchers used methodology designed for testing synthetic drugs rather than living organisms. If you're interested, the problems with this and other similar trials are detailed here: 

Problems with clinical trials using live helminths
 

I am not convinced that the study was poorly designed. I don't have time to go through all of the claims on that site you linked to but it doesn't seem to me to be giving a very balanced picture at all.

It is easy to say for example that a trial needs more time to get positive results but it is more likely the worms aren't very effective for treating celiac disease for most people.

I am also very suspect of the claim that the body needs this particular organism to function.

It is very easy to explain why developed countries have more autoimmune conditions compared to other countries because of other causes.

https://www.theguardian.com/science/2022/jan/08/global-spread-of-autoimmune-disease-blamed-on-western-diet

It also concerns me that helminth infections are not always beneficent. There was a reason those meds were developed to kill them. Just because we develop the capacity to live with them does not mean we live better with them.

Wait, something from the article, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7678792/, linked above referring incidentally to the prevalence of celiac disease:

"The condition is becoming increasingly diagnosed and is estimated to affect 2% of many ethnically diverse populations (5,6)."

For some years now, we have been operating under the 1% statistic for the prevalence of celiac disease.

1 hour ago, trents said:

Wait, something from the article, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7678792/, linked above referring incidentally to the prevalence of celiac disease:

"The condition is becoming increasingly diagnosed and is estimated to affect 2% of many ethnically diverse populations (5,6)."

For some years now, we have been operating under the 1% statistic for the prevalence of celiac disease.

"More recently, a study from Finland, found even a higher prevalence of biopsy-proven celiac disease (2.13%) in older people (52-74 years of age)." - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3227015/

I read somewhere else recently a figure of 2.7% celiac incidence by the time people reach end of life. If I come across the source I'll come back and post it.

We published a study done years ago that was done on the blood from US solders in the 1950's which was has been stored since then and it was determined that there was indeed a lower overall rate of celiac disease in the 1950's compared to today, so yes, it does appear that the rate of celiac disease is increasing.

3 hours ago, trents said:

It also concerns me that helminth infections are not always beneficent. There was a reason those meds were developed to kill them. Just because we develop the capacity to live with them does not mean we live better with them.

Helminthic Therapy only advocates for the use of the most benign and controllable helminths, not the ones that are generally seen in the wild that cause blindness, elephantiasis, etc. Wikipedia claims there are 68 species of hookworm (https://en.wikipedia.org/wiki/Hookworm#Species), HT only advocates for one, Necator americanus. Dog hookworms, for example, can't penetrate the deeper levels of human skin and create all kinds of nastiness in humans (google for images for "dog hookworm humans").

The way I look at it, it's a matter of choosing your poison. The cost and other downsides of being a host to hookworms vs the pain and disability of inflammatory bowel disease. If the relief from IBD that you get from hosting isn't substantial then you don't continue to do it and the hookworms die off by themselves (or you take a couple of pills to kill them). Pretty simple.

In my case I went from a life of pain and disability and only being able to eat from a list of 12 or so food items to being a normal human being again. I just finished a piece of delicious blueberry pie. It was great. But absolutely I can tell you some people choose not to continue hosting after trying it because it didn't help or help enough.

4 hours ago, Blue-Sky said:

In this trial hookworms were ineffective as a treatment or Celiac disease for over 2>gram a day of gluten but helpful for lower amounts.

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

Thank you for sharing this. I see nothing about this study that would indicate that it was flawed, or that the results can't be trusted. On the contrary, it seems to indicate that hookworms are not a magic bullet for most celiacs, and that @dixonpete should definitely be doing regular celiac blood panels to make sure his antibodies don't start going up again. 

It is well known that some celiacs will go into remission after going gluten-free for many months or years, and if they start eating gluten again it could take years for some to start reacting to it again. It possible that @dixonpete going through such a remission.

6 hours ago, Blue-Sky said:

I am not convinced that the study was poorly designed. I don't have time to go through all of the claims on that site you linked to but it doesn't seem to me to be giving a very balanced picture at all.

It is easy to say for example that a trial needs more time to get positive results but it is more likely the worms aren't very effective for treating celiac disease for most people.

I am also very suspect of the claim that the body needs this particular organism to function.

It is very easy to explain why developed countries have more autoimmune conditions compared to other countries because of other causes.

https://www.theguardian.com/science/2022/jan/08/global-spread-of-autoimmune-disease-blamed-on-western-diet

 

I doubt you will be convinced that the study was poorly designed when you admit to not having read the details at the link I gave you. I wrote that analysis of the reasons why so many trials using living worms are flawed, and I was careful to make sure that all the points made would be clear to anyone who actually takes the time to read them.

Regarding being "very suspect of the claim that the body needs this particular organism to function", this isn't what I said. What I did say is that the human immune system needs the presence of worms in order to be able to function *optimally*. 

"Independent lines of evidence, including epidemiologic studies, studies using animal models and clinical observations, point to the idea that we need exposure to helminths in order to avoid biota alteration and immune hypersensitivity."
Between a hygiene rock and a hygienic hard place

"All immunocompetent humans need regular exposure to helminths in order to maintain optimal immune function and avoid risk for inflammation-associated disease."
Production and Use of Hymenolepis diminuta Cysticercoids as Anti-Inflammatory Therapeutics

3 hours ago, Scott Adams said:

Thank you for sharing this. I see nothing about this study that would indicate that it was flawed, or that the results can't be trusted. On the contrary, it seems to indicate that hookworms are not a magic bullet for most celiacs, and that @dixonpete should definitely be doing regular celiac blood panels to make sure his antibodies don't start going up again. 

It is well known that some celiacs will go into remission after going gluten-free for many months or years, and if they start eating gluten again it could take years for some to start reacting to it again. It possible that @dixonpete going through such a remission.

In this Croese et al, 2020 study (1), the trial participants received two doses of either 10x or 20x N. americanus (NA) 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. Based on the data, this trial’s authors stated the conclusion that infection with NA does not obviate the need for a gluten-free diet. However, the trial design was undoubtedly flawed.

* The trial period was too short. 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 develop fully. (2)

* Some participants may not have received an adequate number of NA. The level of helminth dosing required to achieve disease remission in different hosts varies by more than 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 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 hookworms 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)

In 2022, Venkatakrishnan et al (3) highlighted the fact that some “gold standard” helminthic therapy trials, in spite of their double-blind, placebo-controlled design, have 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’ve made 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) Helminthic therapy research: Problems with clinical trials using live helminths

8 minutes ago, John Scott said:

In this Croese et al, 2020 study (1), the trial participants received two doses of either 10x or 20x N. americanus (NA) 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. Based on the data, this trial’s authors stated the conclusion that infection with NA does not obviate the need for a gluten-free diet. However, the trial design was undoubtedly flawed.

* The trial period was too short. 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 develop fully. (2)

* Some participants may not have received an adequate number of NA. The level of helminth dosing required to achieve disease remission in different hosts varies by more than 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 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 hookworms 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)

In 2022, Venkatakrishnan et al (3) highlighted the fact that some “gold standard” helminthic therapy trials, in spite of their double-blind, placebo-controlled design, have 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’ve made 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) Helminthic therapy research: Problems with clinical trials using live helminths

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? Sorry, I'm not interested in this until the process gets more refined and more reliable. I'll just keep avoiding gluten.