NEW TO CELIAC DISEASE

[knitty kitty]

Thought this might interest you...

https://www.healthline.com/health/covid-and-parasites

 

[dixonpete]

21 minutes ago, knitty kitty said:

Thought this might interest you...

https://www.healthline.com/health/covid-and-parasites

 

I saw that.

During a period between hookworms in April 2020 I caught Covid-19 when it was really mean. It darn near killed me out of the gate with an over immune reaction that blocked my airway with fluid. By the sound of that article I would have been better off had I been hosting back then.

Suffering from IBD carries a broadly increased risk from a broad spectrum of serious disease from cancer to heart disease because of the increased inflammatory state of the body.

I wish it were a clear-cut decision to host hookworms to resolve. Turns out life isn't that simple. So far I'm still happy with my choice. Real pizza!

 

[knitty kitty]

@dixonpete,

Do you have any long haulers symptoms?

[dixonpete]

4 minutes ago, knitty kitty said:

@dixonpete,

Do you have any long haulers symptoms?

From Covid? Not that I know of. I was left with a partially collapsed right lung but that resolved after a couple of months.

I actually caught Covid again earlier this year (rapid tested). It was little more than a bad cold that cleared up in 5 days. Thanks to it being a different strain and 3 vaccines I suppose.

[knitty kitty]

Did you have your pets at that time? 

[dixonpete]

4 hours ago, knitty kitty said:

Did you have your pets at that time? 

Nope. I restarted May 24th, 2022, and reinoculated Oct 21st, 2022. I'm currently on a 2x a year schedule, spring and fall. Hookworm larvae don't fare well in the winter, so it's important to get doses in before the temp drops.

I suppose people who need to inoculate more frequently must self-harvest eggs from their stool or live in warmer climes.

[dixonpete]

On 11/15/2022 at 2:30 PM, Scott Adams said:

@dixonpete I would only mention, again, that there is a difference between possibly becoming a silent or asymptomatic celiac vs. being effectively cured (which means that the autoimmune reaction no longer happens again when eating gluten).

I recommend that you verify this from time to time via celiac disease blood panel testing, just to make sure, but I do hope it works for you!

I finally got that ant-TTG result back. 2.8. Apparently for that test there's no concern unless it's over 4, so looks like I'm ok.

[Scott Adams]

Yes and no...those without any issues with gluten would likely not score 2.8, so there is still some evidence that your body is mounting an autoimmune response to gluten, but it may not be strong enough at this point to call it celiac disease.

Also, were you eating at least 2 slices of wheat bread per day for 6-8 weeks before this test? If not, this would be another reason why your score might be lower than normal:

 

[dixonpete]

A lot more than two slices of bread per day. Probably the equivalent of 3-4x that with all sources considered.

My GP said the numbers were fine.

 

 

 

 

 

[dixonpete]

The test where I was below 0.5U/ml was the one specific to celiac disease, TRANSGLUTAMINASE IGA ANTIBODIES, so I'm pretty sure I'm good.

[Scott Adams]

That makes more sense...yes, the tTg result looks fine. The IGA is done just to check if you are IGA deficient, and you are not.

[mark12]

On 10/26/2022 at 2:44 PM, trents said:

I edited my previous post and my edit must have been in progress when your reply was in progress. How long after introduction of the worms does it take for the therapy to be effective?

Hi Trent I do helmithic therapy for a range of other AI issues. The number you take is individual so everyone starts low and works there way up. Think of it more in the context of symbiotic relationships. So theres a balance where theres enough to stay and not get pounded to death by your immune system. That will vary by individual. Dr Paul giacomin at JCU does a lot of research including for celiac t2d etc.  https://research.jcu.edu.au/portfolio/paul.giacomin

[Scott Adams]

I'm not in any way endorsing this treatment, as a gluten-free diet is, at least for me, no big deal now, but the Helminthic Therapy wiki and Helminthic therapy and gluten-related disorders have more info, and I didn't realize that there have been published studies on this in relation to gluten issues.

[John Scott]

On 10/25/2022 at 11:05 PM, trents said:

I read a recent update on the hookworm treatment and the results are far from consistent. They are looking at the variables that might effect outcome and also trying to figure out why and how the mechanism works (at least sometimes) so as to be able to deliver it in a different way.

There have been serous issues with the study design of most of the helminthic therapy clinical trials. See this recent paper for more about this.
Socio-medical studies of individuals self-treating with helminths provide insight into clinical trial design for assessing helminth therapy.

Anyone looking for "helminthic therapy" delivered as a synthetic pharmaceutical product will have to wait for many years, and probably decades, before these are ready for the clinic. The living worms are ready for use right now, and some researchers are convinced that these will always be the better option.
Living helminths are better than helminth-inspired drugs.  

[John Scott]

On 10/26/2022 at 4:44 AM, trents said:

I edited my previous post and my edit must have been in progress when your reply was in progress. How long after introduction of the worms does it take for the therapy to be effective?

This varies hugely between individuals.
Consistent improvement can begin anytime from 3 to 24 months.

[John Scott]

On 11/17/2022 at 8:17 AM, knitty kitty said:

Thought this might interest you...

https://www.healthline.com/health/covid-and-parasites

 

The four species of worm used in helminthic therapy are, strictly speaking, all "mutualists", not "parasites" - a distinction not fully appreciated by many working in the medical field. Mutualism is a type of symbiotic relationship between individuals of different species where each organism benefits from the other. The four "therapeutic" helminths are also all benign, i.e., they're non-pathogenic.

You may be interested in reading more of the science regarding helminths and COVID-19.
Helminthic therapy and COVID-19.

As you will see from this, someone who contracts SARS-CoV-2 and develops COVID-19 may recover from the illness more quickly and face a reduced risk of fatality if they are hosting helminths.

[Craig Simms]

Has anybody made the correlation of using a drug that prevents worms from absorbing nutrition in the human body to kill the worms and actually causing the human to no longer absorb nutrition once treated with the drug, triggered by a protein such as gluten. You will find that each and every Celiac has either consumed the drugs or their predecessors consumed the drug. Once the hookworm is reintroduced it would appear that the trigger "gluten" is no longer affective. Ever wonder why Celiac Disease is the only autoimmune disease in the world that the trigger is known? I would say that when the drugs to eliminate parasites in the human body were developed they did not realize that they were condemning the recipient to malabsorption which is pretty much identical to the behavior of hosting worms but instead of worms causing the malabsorption it is now gluten.  Oddly enough, introducing worms reverses the effects of gluten, have worms developed a way to beat the drugs that use to destroy them?

[Craig Simms]

On 10/25/2022 at 2:20 PM, Scott Adams said:

Given that there is no known cure for celiac disease, not even hookworms have proven in studies to allow you to eat gluten when you have celiac disease, it would definitely make sense for your doctor to do regular blood panels and probably even an annual endoscopy. 

Let us know how things go!

Curious Scott, how many relatives have you lost to Celiac Disease? Lost my brother 3 years ago, my mother and father, 12, and 20 years ago. My family only got diagnosed when my 2 year old son was dying after being misdiagnosed as having Cystic Fibrosis and a brain tumor. Turns out I had to threaten his doctor to test him for celiac disease before our family found that we were all Celiac. I did further research and found many relatives misdiagnosed that subsequently died. I was absolutely miserable before I diagnosed myself, I recall doctors telling me that I was only borderline after my TTg and shouldn't go gluten free, as my health got worse I was misdiagnosed with White Matter Brain Disease subject to ALS and was told I was going to die. That was 20 years ago. If helminth treatment helps then it could isolate the onset caused by drugs introduced to rid the human body of parasites.

[mark12]

9 hours ago, Scott Adams said:

I'm not in any way endorsing this treatment, as a gluten-free diet is, at least for me, no big deal now, but the Helminthic Therapy wiki and Helminthic therapy and gluten-related disorders have more info, and I didn't realize that there have been published studies on this in relation to gluten issues.

Heres one funded by the coeliac foundation in AU

Note: IF they can do this AND its effective its likely to be 10+ yrs away  

 

Coeliac Australia - Project Grant

Hookworm therapy for restoring tolerance in coeliac disease

Indicative Funding

$86,110 over 1 year

Summary

Parasitic worms have an amazing ability to manipulate the immune system, and our research group recently discovered how they may hold the key for treating inflammatory diseases such as Coeliac Disease. The aim of our reseach is to further develop this novel therapy in a clinical trial and study the mechanism of how worms control the immune response, including identifying the molecules that the work produces that could be produced as a pill-based medication for treating coeliac disease.

Investigators

John Croese, Paul Giacomin, Tony Rahman and Alex Loukas (Australian Institute of Tropical Health & Medicine, The Prince Charles Hospital, College of Public Health and Medical & Vet Sciences)

[dixonpete]

1 minute ago, mark12 said:

Heres one funded by the coeliac foundation in AU

Note: IF they can do this AND its effective its likely to be 10+ yrs away  

That was actually part of my calculus. I was in my late 50s. Not wanting to wait till my life was almost over before I got fixed.

I didn't mention it before, but I pay about $400 a year for my hookworm larvae. Sounds like a lot I know, but I figure I save twice that by not having to buy gluten-free pasta and other gluten-free foods.

[Rick W]

On 10/24/2022 at 4:41 PM, dixonpete said:

I host hookworms. They put my celiac disease and ulcerative colitis into remission.

Plenty of people don't like the idea of worms in their belly. For me it was a choice of that or having my colon removed. Seemed like a lesser evil, and it worked. I'm on a regular diet now, with lots of gluten.

I was diagnosed celiac back in 2006, lived totally gluten-free all those years except when I was accidentally glutened. My aunt and cousin are celiacs as well with the same extremely high reactivity to gluten as I had.

What can I say? Life is better with hookworms.

I have heard of this for helping asthma. What got me was he would send them to you. But, he had to harvest them. I've seen what they do to animals. I'll pass.

 

[dixonpete]

3 hours ago, Rick W said:

I have heard of this for helping asthma. What got me was he would send them to you. But, he had to harvest them. I've seen what they do to animals. I'll pass.

 

There are different species of hookworms, some are friendlier than others. Not acknowledging that is kind of like equating a grown lion with a kitten. Necator americanus in particular is well adapted to humans and tends to only cause issues when excessive numbers are used.

In addition to celiac disease I also suffered from ulcerative colitis. The colitis would have me screaming in pain for hours at a time. And now that's gone. And I get to eat pizza.

The only discomfort I get from hookworms is the tingling from the entrance wound. That, and the mark can be unsightly for a week or so till it heals. Other than that, nothing.

From the wiki: https://helminthictherapywiki.org/wiki/Helminthic_therapy_safety#The_safety_of_NA

[Scott Adams]

15 hours ago, Craig Simms said:

Has anybody made the correlation of using a drug that prevents worms from absorbing nutrition in the human body to kill the worms and actually causing the human to no longer absorb nutrition once treated with the drug, triggered by a protein such as gluten. You will find that each and every Celiac has either consumed the drugs or their predecessors consumed the drug. Once the hookworm is reintroduced it would appear that the trigger "gluten" is no longer affective. Ever wonder why Celiac Disease is the only autoimmune disease in the world that the trigger is known? I would say that when the drugs to eliminate parasites in the human body were developed they did not realize that they were condemning the recipient to malabsorption which is pretty much identical to the behavior of hosting worms but instead of worms causing the malabsorption it is now gluten.  Oddly enough, introducing worms reverses the effects of gluten, have worms developed a way to beat the drugs that use to destroy them?

No, I've not seen a correlation between hook or tape work drugs and celiac disease in any studies, nor do I know of a mechanism (or a link) that would explain how such medications taken by my dead grand or great grand parents would somehow trigger celiac disease in their offspring.

[Scott Adams]

15 hours ago, Craig Simms said:

Curious Scott, how many relatives have you lost to Celiac Disease? Lost my brother 3 years ago, my mother and father, 12, and 20 years ago. My family only got diagnosed when my 2 year old son was dying after being misdiagnosed as having Cystic Fibrosis and a brain tumor. Turns out I had to threaten his doctor to test him for celiac disease before our family found that we were all Celiac. I did further research and found many relatives misdiagnosed that subsequently died. I was absolutely miserable before I diagnosed myself, I recall doctors telling me that I was only borderline after my TTg and shouldn't go gluten free, as my health got worse I was misdiagnosed with White Matter Brain Disease subject to ALS and was told I was going to die. That was 20 years ago. If helminth treatment helps then it could isolate the onset caused by drugs introduced to rid the human body of parasites.

I'm sorry to hear about your son, and that you've encountered doctors who gave you bad advice--or doctors who didn't recognize celiac disease in your relatives soon enough...this is why I started Celiac.com, and have published over 6,000 articles on celiac disease, and have replied to posts here on a daily basis for over 25 years. I have relatives now who likely have celiac disease, yet don't want to be tested because they claim that they could never go gluten-free. It's also likely I have some relatives who have died from complications due to undiagnosed celiac disease.

The evidence shown in studies is not that the drugs used to treat worm infections cause celiac disease or any other disease (and especially not in their offspring), but that the lack of hosting parasites like hookworms, which apparently can help suppress certain autoimmune reactions, might cause some people to get autoimmune diseases like celiac disease. Infecting people with certain autoimmune diseases with hookworms might help suppress their autoimmune reaction, which is very interesting, and apparently some people like @dixonpete are willing to see if this approach might work for them. 

[trents]

How many generations back have these drugs even been available?