NEW TO CELIAC DISEASE

[dixonpete]

I tested for gluten reactivity on day 39 after inoculation, found none, and was on a regular diet the next day. It makes sense to wait till the larvae have matured to their adult form and firing on all cylinders before risking a gluten exposure.

You'll find a range of opinion on this topic in the wiki. Some people micro dose gluten over weeks and build up. Some wait months. Others find their gluten tolerance gradually builds over time as they continue to host. Everybody seems to be different.

You should know the success rate isn't 100%. But then what is? On the positive side the risk is very low. I host 25 which is considered to be on the high side, and I've never noticed their presence. If it doesn't work you at least have a story to tell. If it does, your life gets changed.

[trents]

I scanned the wiki link you gave. Couldn't tell for sure but providers' payment guidelines gave clues as to where they are located. Doesn't look like there are any worm providers in the USA, maybe one in Mexico. Looks kind of spendy as well.

I wonder if you can grow your own.

Edited October 26, 2022 by trents

[dixonpete]

I gotta say, for a celiac with probably decades of experience avoiding gluten to deliberately put gluten in their mouth to test reactivity is a mind f***. It's not easy to do. I used to dream all the time about gluten exposures and putting my finger down my throat (in the dream). It's funny how easy you get over it once it's safe.

[dixonpete]

The two providers I've bought from are located in Australia. My last spend was $154 US. I used to pay 2X that annual amount on paying extra for gluten-free food. So in a real way you save money.

Once you start hosting you can harvest the eggs in your stool. I have a friend in the group that does that. You need a microscope and a tolerance for poop, which I don't have. Each female supposedly lays 10,000 eggs a day. If you have one BM a day and host 20 hookworms (10 likely female), that works out to be 100,000 eggs each stool. You'll be rich!

[trents]

Actually, I researched my own question and it's technically illegal to propagate your own hookworms in the USA. But I doubt that would be high on the cops' agenda. Look at "Warnings and Disclaimer" here: https://www.foodsmatter.com/natural_medicine_comp_therapies/helminthic_therapy/articles/how_i_maintain_vibrant_hookworm_colony.pdf

[dixonpete]

I'm not inclined to do it. The eggs aren't infectious till they've gone through a couple of molts. Once they've reached that stage though, look out!

Here's what my arm looked like on Sunday (day 3). It's better now. In a month there will just be a little redness left. Hookworms aren't for the faint of heart.

You have to look at it philosophically. For all its current ugliness, it didn't hurt. And compared to being glutened, it's nothing. And now I get to eat cake. Currently I'm working my way through a pumpkin pie.

It's a weird world where hookworms are a solution to anything, but that's how it is.

[dixonpete]

On 10/18/2022 at 2:48 PM, Scott Adams said:

Welcome! I also eat out regularly, and when I do I take a couple of GliadinX AN-PEP based enzymes which have been shown in numerous studies to break down gluten in the stomach, before it reaches the intestines (Note that they are also a sponsor here, but this is not why I'm sharing this info). 

Is this for bread or for trying to catch gluten contamination? 

Considering it only takes a tiny amount of gluten for someone to get glutened I can't really see how this could work. Surely some gluten gets through.

[trents]

9 minutes ago, dixonpete said:

Is this for bread or for trying to catch gluten contamination? 

Considering it only takes a tiny amount of gluten for someone to get glutened I can't really see how this could work. Surely some gluten gets through.

GliadinX and similar products are designed to neutralize small amounts of gluten like you would get from cross contamination.

[dixonpete]

2 minutes ago, trents said:

GliadinX and similar products are designed to neutralize small amounts of gluten like you would get from cross contamination.

I never took any chances. Whole foods, no ingredient lists, cooked at home. One time in Toronto I spent 15 min negotiating in a restaurant in Toronto and I still ended up trapped in a subway washroom for a couple of hrs before I felt it was safe to go home. That was it for me.

[Scott Adams]

I would only say that if I were in your shoes I'd be doing regular celiac disease blood tests and endoscopies. It's great if this works for you, however, just going by your gut feelings is a poor way to verify that this is actually working. It's a well known fact that some celiacs, after being gluten-free for a long time, go into remission and have little to no effects when they go back on a normal gluten diet, but symptoms will typically return after months or years.

[dixonpete]

1 minute ago, Scott Adams said:

I would only say that if I were in your shoes I'd be doing regular celiac disease blood tests and endoscopies. It's great if this works for you, however, just going by your gut feelings is a poor way to verify that this is actually working. It's a well known fact that some celiacs, after being gluten-free for a long time, go into remission and have little to no effects when they go back on a normal gluten diet, but symptoms will typically return after months or years.

My GP signed off yesterday on the blood work, but he said without signs of GI issues an endoscopy wasn't warranted. I didn't know celiacs ever went into spontaneous remission. Thought it was a permanent thing.

"Physiologically the inflammation and symptoms go hand in hand, so if you’re asymptomatic then there’s likely nothing going on internally." - from my GP's email yesterday.

Here in Canada the government picks up the tab for medical procedures, so it's his call whether an endoscopy gets done.

 

 

 

[trents]

If the inflammation is low grade it may not produce symptoms but still damage villi over time.

[dixonpete]

2 minutes ago, trents said:

If the inflammation is low grade it may not produce symptoms but still damage villi over time.

No doubt. 

The way I look at it an antihistamine capsule made with gluten would have me on the toilet for two hours. Now pretty much every meal I have is loaded with gluten and there's no reaction. But if the TTG test is off I'm sure he'll spring for the endoscopy.

Btw, I currently weigh 320. If anything, my gut villi are a little too healthy.

[trents]

9 minutes ago, dixonpete said:

No doubt. 

The way I look at it an antihistamine capsule made with gluten would have me on the toilet for two hours. Now pretty much every meal I have is loaded with gluten and there's no reaction. But if the TTG test is off I'm sure he'll spring for the endoscopy.

Btw, I currently weigh 320. If anything, my gut villi are a little too healthy.

It is a misconception that celiacs will necessarily be underweight. Many of us were not, even before going gluten-free. Some celiacs will just consume more calories trying to make up for poor nutrient absorption. The caloric part of nutrition doesn't seem to be affected as much by damage to the villi.

[Scott Adams]

So hopefully your GP knows that most celiacs do not have symptoms, and you can't assume that this means there is no villi damage. Many studies have shown that people without symptoms still share the same health risks.

 

 

 

 

 

[Posterboy]

To All,

I don't have anything to add at this moment......I just wanted to add myself as a follower of this topic....

To see where it leads.....

It is a very interesting topic to say the least!

I haven't had to time to read Scotts summary on Hookworms....but I will when I get a chance.

Posterboy,

[dixonpete]

It's always a good story to bring up in casual conversation. Especially right now when my entry wound is maximally gross. Actually, it's looking much better now.

[trents]

Are the worms sometimes introduced orally?

[dixonpete]

Not that I know of. Hookworms have a life cycle they have to go through. They are programmed for it.

1. Into the skin
2. onto the lungs where they mature for a week
3. travel up the trachea
4. get coughed down the esophagus
5. land and stay in the jejunum

If you swallowed them no doubt they'd try to penetrate the skin in the mouth and esophagus. Not something you'd want to have happen.

[dixonpete]

Frankly I don't know how much experience he has monitoring celiac patients. I do know he's never asked me about my success in adhering to a gluten-free diet. Not that that's a particular issue anymore. I'll broach the idea to him at our next face-to-face meeting. I do know he's big on flow charts and decision trees in standards of care. There's probably a celiac protocol he's following. Unlike the GP that left me struggling undiagnosed for two years with a textbook case of celiac disease, my current GP seems quite competent.

[trents]

Flow charts and decision trees are great as long as the data is up to date. But most of us on this forum will attest to the fact that this is seldom the case. The medical community in general is pretty behind the curve when it comes to knowledge of gluten related disorders.

[dixonpete]

I chatted up the admins over at the Helminthic Therapy Support Group and their consensus was that the majority of celiac hookworm hosts would be spared the catastrophic reactions to casual gluten exposure, but most of those would probably choose to stay gluten-free because they felt better for it. Only a minority would be like me and become completely unreactive to gluten.

[trents]

7 hours ago, dixonpete said:

I chatted up the admins over at the Helminthic Therapy Support Group and their consensus was that the majority of celiac hookworm hosts would be spared the catastrophic reactions to casual gluten exposure, but most of those would probably choose to stay gluten-free because they felt better for it. Only a minority would be like me and become completely unreactive to gluten.

That sounds about right.

[Scott Adams]

@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!

This article may be of interest:

 

[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!

A physician on Quora listed out all the tests for Celiacs and I forwarded that to my GP. So far I've only had the anti-TTG test and haven't heard back yet the results.

Hookworm hosting celiacs in the Helminthic Therapy Support Group have gone through this and have passed those tests with flying colors. I have no reason to suspect my case would be any different. But we shall see.