Pete Dixon

So to clarify, you have now gone gluten-free because the hookworm treatment was not working 100% of the time for you? 

If this is the case perhaps you can go into your old threads on this topic and update everyone there about this change? I recommend this, as you've indicated in those threads that you've had zero issues with gluten since you started this unconventional treatment.

Hookworms don't live forever in the human gut. They are constantly under attack from the immune system and also they get older and less capable and eventually die off exiting via the stool.

With the first batch I did in 2018 I had protection till just after the 6-month mark. Over a couple of weeks I had progressively worse GI symptoms leading to me soiling the bed, at which point I went back to gluten-free.

This last time I noted the passing of the 6-month mark, felt ok and carried on. Then I started noticing issues and reached out to my larvae supplier and couldn't reach him. Eventually I did, but then delivery took another 9 days. By then my GI symptoms had gotten considerably worse, diarrhea multiple times per day, incontinence, slight colitis. So I cut gluten entirely from my diet and the problems immediately went away.

Hookworms last for different times for different people. I know one person who inoculates every month, so I consider myself lucky my window appears to be 6 months. I have two pieces of evidence to support that timing now.

Hookworms aren't vaccines. They don't confer permanent protection. They have to be live and wriggling in the gut to have an effect. If they die off any benefits go away.

I'll do a gluten test July 1st. The next generation should have reached their adult stage by then. I report back then.

Gluten test? Do you get checked for celiac antibodies? You may know this but you need to be eating regular amounts of gluten (two slices of wheat bread daily or the wheat equivalent, according to the Mayo Clinic) or 6-8 weeks before being tested in order to not undermine the test results.

By gluten test I meant not having GI symptoms from consuming gluten.

I've been around this block a few times now. If my hookworms are healthy, then so am I.

In general going by such a "gut test" is not recommended at all. Symptoms in celiacs can change over time, and many celiacs have no little or no symptoms. The only way to check out be using a celiac disease blood panel to see if the autoimmune reaction is ongoing:

I hear you Scott. Protocols exist for a reason. In my case though I've established to my satisfaction that with a healthy colony of hookworms my GI tract does well.

How do I know that? With a healthy hookworm colony my blood tests are fine, my stools are picture-perfect and painless, I have none of the irritation and bleeding that mark colitis, and the frequency of bowel movements are 1-2 per day.

With the contrast of my being well and being GI sick couldn't be more stark. There's nothing cryptic about it.

Running to the doctor every time my gut runs out of hookworms just wouldn't contribute anything useful. I know what the problem is and what's the solution.

I recognize you and just about everybody else have doubts about Helminthic Therapy. I don't. Not in regard to my health anyway.

@dixonpete,

I'm intrigued that the hookworm therapy actually works for you, though not at all tempted to try it myself. Aside from the antibody tests, have you ever tested your vitamin and mineral status, say Vitamin D, Iron, B12 etc. while consuming gluten with a healthy active hookworm colony? Do you supplement with vitamins and minerals while hosting the hookworms?

I take Vit D daily, never had any involvement with B12, I had a complete blood panel done several weeks ago and everything was fine.

I used to have lots of issues with low iron because of blood loss due to colitis (blood in stool) but my iron levels have been fine since I've been using hookworms. In my case they save much more blood than they consume.

Today is June 15th. My colony probably went kaput more than a month ago. Hoping the bread in my freezer will be ok after a month and a half sitting there.

  On 6/15/2023 at 5:18 PM, Rogol72 said:

@dixonpete,

I'm intrigued that the hookworm therapy actually works you, though not at all tempted to try it myself. 

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My decision to use hookworms wasn't based on fixing my celiac disease, that was just a bonus. I was at risk of needing surgery because of ulcerative colitis and the pain was absolutely intolerable.

I was lucky. Hookworms fixed both conditions.

  On 6/15/2023 at 5:32 PM, dixonpete said:

My decision to use hookworms wasn't based on fixing my celiac disease, that was just a bonus. I was at risk of needing surgery because of ulcerative colitis and the pain was absolutely intolerable.

I was lucky. Hookworms fixed both conditions.

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I hear ya. I've had UC brought on by C. Diff post knee surgery, was on prescription pain meds for months for the unbearable pain. I'm glad it's worked out for you.

The few, the proud, the hookwormed.

I first heard about the idea in 2010 but I had to be desperate enough to be pushed to try them. My celiac cousin with presumably the same genetics as me and so likely an excellent candidate has no interest. Says he's perfectly fine being celiac. I like the freedom of choice and freedom from fear of not being celiac.

Standard disclaimer: hookworms don't work as well for most people as they do on me. Most get less reactivity to gluten, only a minority experience no reactivity to gluten like I do. Colitis sufferers on the other hand do quite well with hookworms.

  On 6/15/2023 at 7:50 PM, dixonpete said:

 I like the freedom of choice and freedom from fear of not being celiac.

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You are a celiac and will always be a celiac. You are just masking it. If you were not a celiac then there would be no need for either going gluten free or using helminth therapy.

Semantics. With hookworms on board I display no signs of being celiac. If you buy the argument that humans in their natural state would always be carrying hookworms then it's you the unhookwormed who are unnatural.

For me it's a mute argument. Either I use hookworms or I lose my colon, or I take those ungodly expensive colitis drugs. I ran into one guy whose drugs cost runs 100k a year of which he pays 5k out of pocket. Hookworms cost me ~$400 a year, and could cost as little as $50 a year probably if I harvested my own eggs from my stool.

It's too bad it's such a weird sounding idea, using parasites, that grosses people out. I read the forums. There's a lot of suffering out there a good percentage of which helminths could help with.

  On 6/15/2023 at 8:37 PM, trents said:

You are a celiac and will always be a celiac. You are just masking it. If you were not a celiac then there would be no need for either going gluten free or using helminth therapy.

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A better response would have been, a diabetic using insulin is still a diabetic, but what sense would it be to withhold insulin?

Hookworms are my insulin.

  On 6/15/2023 at 10:23 PM, dixonpete said:

A better response would have been, a diabetic using insulin is still a diabetic, but what sense would it be to withhold insulin?

Hookworms are my insulin.

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Yes, and diabetics also work at changing how they eat.

  On 6/15/2023 at 11:31 PM, trents said:

Yes, and diabetics also work at changing how they eat.

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I've been made desperately ill all while thinking I was being celiac safe. It happens to all celiacs eventually no matter how careful we are.

I prefer not having to worry about such things. I don't find hookworms onerous, and again, switching the topic, I did everything I possibly could to avoid the food effects on my colitis and I never succeeded. The colitis was always there no matter how carefully I ate, and I often had 6 urgent bowel movements a day, and I could never eat meat.

I don't know what you guys are hearing when I discuss this but to me it's an obvious fixing of immune system dysfunction. Having one's GI tract in a perpetual state of inflammation is no bueno.

"Not much to report. My GI issues have all cleared up, but that's probably because I've gone gluten-free for the month of June. My entry wound has almost entirely healed. Aside from a touch of redness it should be 100% in a couple of days. That steroid cream made a huge difference, not in pain or discomfort really but certainly in aesthetics. Previously the entry wound was ugly enough to scare children."

It would scare me and I'm a senior citizen. Sounds like a great opportunity for some antibiotic resistant strain of bacteria to get a foothold someday.

It's the part of the price of admission. I've never heard of the rash creating an issue other than being temporarily unsightly. 15 days on it's almost unnoticeable.

Compare and contrast, a bit of an itch for a few days or 6 months of colitis and not being able in restaurants.

Helminthic Therapy will probably always be niche. Until Scott posted a link nobody from this site had contacted me in months. Disbelief, squeamishness, skepticism are huge barriers to adoption. I thought for a while about starting a side hustle counselling people on how to get started with hookworms. I've totally given up on that idea. I'd starve for lack of business.

Well, I don't have colitis and the gluten free diet works well for me for the celiac disease. I've adjusted to the change in diet over the years and it's the new norm for me. I'm not an extremely sensitive celiac so I don't obsess over cross contamination. I do take reasonable precautions when eating out, ask questions of eatery staff, let them know my needs, etc. and that seems to suffice for me.

I was always super reactive to gluten. Hours of toilet duty on any exposure. Large exposures to gluten were norovirus events.

Was kinda like living life being a firecracker surrounded by matches.

  On 6/15/2023 at 8:49 PM, dixonpete said:

Semantics. With hookworms on board I display no signs of being celiac. If you buy the argument that humans in their natural state would always be carrying hookworms then it's you the unhookwormed who are unnatural.

For me it's a mute argument. Either I use hookworms or I lose my colon, or I take those ungodly expensive colitis drugs. I ran into one guy whose drugs cost runs 100k a year of which he pays 5k out of pocket. Hookworms cost me ~$400 a year, and could cost as little as $50 a year probably if I harvested my own eggs from my stool.

It's too bad it's such a weird sounding idea, using parasites, that grosses people out. I read the forums. There's a lot of suffering out there a good percentage of which helminths could help with.

 

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It's not semantics, if you don't get your antibody levels checked you won't know if your autoimmune reaction is ongoing. A treatment that might mask the symptoms (my doctor gave me many of these) does not mean you are disease-free and that you won't suffer future consequences of not treating the root cause of it--in this case by going on a gluten-free diet. Don't mistake symptom relief as the best medical treatment, as there a lots of drugs, for example steroids, that can also offer symptom relief, but such treatments are not the best treatment.

  On 6/16/2023 at 5:27 PM, Scott Adams said:

It's not semantics, if you don't get your antibody levels checked you won't know if your autoimmune reaction is ongoing. A treatment that might mask the symptoms (my doctor gave me many of these) does not mean you are disease-free and that you won't suffer future consequences of not treating the root cause of it--in this case by going on a gluten-free diet. Don't mistake symptom relief as the best medical treatment, as there a lots of drugs, for example steroids, that can also offer symptom relief, but such treatments are not the best treatment.

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It's been a while, but do you remember me posting my antibody tests last year I think it was? They were A1.

Since my colony stopped functioning last month I figure when I became symptomatic again it's fair to assume any new antibody tests would reflect a problem. Once my colony is back in business such tests should be ok again. As it stands right now 17 days after inoculation if I consumed gluten I would expect symptoms and a test fail because it's still early days.

In my case my symptoms aren't subtle. Severe colitis pain, projectile vomit and diarrhea, stools a disaster. Absent all that I figure I'm ok, but for the sake of the argument I'll ask my GP to rerun the antibody test once I'm successfully back on gluten. As it stands there hasn't been a speck of gluten in my diet this month and I'm doing fine.