NEW TO CELIAC DISEASE

[Slayxbella]

Where do I start....... first off I am 28 years old & I've always been a healthy person. 

I first noticed my symptoms in 2020, I felt super tired all the time & also noticed blood in my stool. It worried me but I figured it was due to stress & unhealthy diet & or IBS. The same symptoms got worse by the years, forward to 2021 my symptoms included bloating ( I looked pregnant. Specially night time when laying down to sleep ) , cramp-like stomach pains, extreme fatigue, weight gain, nausea, hair loss, brittle nails, random skin rashes. Now its 2022 and I still have all those symptoms, Ive gone to multiple doctors, to get multiple opinions, my first doctor visit I was diagnosed with Celiac disease via blood work & doctor also told me I was extremely low on Vitamin B, & I was just a bit anemic but not seriously concerning. Doctor recommended I get on a strict Gluten Free diet. However, its been really really hard because I eat out so much. I work 2 jobs & I'm a full time student so its super hard to maintain a good healthy gluten free diet. 

I need someone to guide me through this process and recommendations of what to eat & what not to eat. I am new to this forum & by doing my own research I came across this website (thank god) because I honestly feel so alone in this & nobody seems to take my diagnosis serious. I am also Mexican & I have yet to come across someone from my same background. I feel alone & helpless. 

 

[trents]

Welcome to the forum, Slayxbella!

Yes, eating out is the number one threat to gluten free eating. Even when you order gluten free items from the menu, they may be cooked along with foods containing gluten or handled with the same utensils. We call this cross contamination. The wisest course of action is to pack your own meals prepared at home and take them in a lunch box.

This may help:

 

[Scott Adams]

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). 

Of course it is best to just not eat out, but for those who must, or those who just want to like myself, this option may help.

[Slayxbella]

Thanks so much! I’ve never heard of those before.. where can I buy ?  Is it a powder or pills? How do I take them & when ? Sorry I’m new to this and every type of knowledge & information helps so much !!

[knitty kitty]

@Slayxbella,

Welcome to the forum!

Here's a link to Gliadin X.

https://www.gliadinx.com/?ref=gFe06sbd2VHY

It's available on Amazon.

Edited October 19, 2022 by knitty kitty
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[Polly147]

On 10/18/2022 at 7:09 AM, Slayxbella said:

Where do I start....... first off I am 28 years old & I've always been a healthy person. 

I first noticed my symptoms in 2020, I felt super tired all the time & also noticed blood in my stool. It worried me but I figured it was due to stress & unhealthy diet & or IBS. The same symptoms got worse by the years, forward to 2021 my symptoms included bloating ( I looked pregnant. Specially night time when laying down to sleep ) , cramp-like stomach pains, extreme fatigue, weight gain, nausea, hair loss, brittle nails, random skin rashes. Now its 2022 and I still have all those symptoms, Ive gone to multiple doctors, to get multiple opinions, my first doctor visit I was diagnosed with Celiac disease via blood work & doctor also told me I was extremely low on Vitamin B, & I was just a bit anemic but not seriously concerning. Doctor recommended I get on a strict Gluten Free diet. However, its been really really hard because I eat out so much. I work 2 jobs & I'm a full time student so its super hard to maintain a good healthy gluten free diet. 

I need someone to guide me through this process and recommendations of what to eat & what not to eat. I am new to this forum & by doing my own research I came across this website (thank god) because I honestly feel so alone in this & nobody seems to take my diagnosis serious. I am also Mexican & I have yet to come across someone from my same background. I feel alone & helpless. 

 

Hey yeah I'm the same... recently diagnosed and finding it hard to know what to eat... the worry of cross contamination, I have suffered for years ...low iron...stomach pain...dizziness...  and took me to go to 3 different Dr s until one of them then checked for celiac... I didn't even know what it was..... I got my biopsie results just yesterday and I'm celiac so now going forward must be strict on my diet....  so any tips for me for more experienced celiacs would be great.... thanks so much:-) 

[trents]

6 hours ago, Polly147 said:

Hey yeah I'm the same... recently diagnosed and finding it hard to know what to eat... the worry of cross contamination, I have suffered for years ...low iron...stomach pain...dizziness...  and took me to go to 3 different Dr s until one of them then checked for celiac... I didn't even know what it was..... I got my biopsie results just yesterday and I'm celiac so now going forward must be strict on my diet....  so any tips for me for more experienced celiacs would be great.... thanks so much:-) 

This might help you get off to a good start as eating truly gluten free is not as easy as first meets the eye:

 

[dixonpete]

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.

[Scott Adams]

Hello @dixonpete, so have you noticed any issues with hookworm infection? Did you do this through a medical doctor? 

[dixonpete]

My GP was interested in the idea and was supportive. He nearly lost his kid brother as an infant to celiac disease so he wanted to see it play out. We did weekly blood tests after my first inoculation to monitor how my red and white cells were doing. My last blood panel with his replacement was fine.

Hookworms leave a mark going in that takes about a month to heal completely, but other than that, nothing. I have no awareness of them.

I do notice my perfect GI health though. Gluten exposure used to cause catastrophic illness, meat was a trigger for colitis and would have me screaming and bleeding, till of course I finally made the association.

Now I can eat anything. My burger from Saturday.

My most recent worm wound from the inoculation last Friday.

[trents]

Wow! This is fascinating. I remember reading about this in theory but now we have a real live example. Thanks for sharing.

[dixonpete]

Mine seem to last 6-7 month before they die off, so I re-inoculate in the spring and fall.

If they do die off, I go back to being celiac.

[Rogol72]

10 minutes ago, dixonpete said:

 

Is there any risk of hookworm infection getting out of control? How many are administered for each treatment? Have you had your TTG levels tested after treatment?

Sorry for the questions, but this is fascinating ... i've got UC in remission, celiac disease and DH.

[trents]

Yes, do you have your antibodies retested to see if the hookworm treatment is really doing the job or are you just relying on improvement in symptoms?

[dixonpete]

I had to look up what TTG was. My doctors have never brought that up. I hail back from 2006, and it's always been gluten-free was the only thing that mattered. I ate only whole foods, lived alone, never ate out, so I wasn't getting gluten from anywhere. The colitis was always an issue though, even once I got rid of meat and nuts like pistachios. There was always a kind of low level inflammation, water discharge, frequent bowel movements. I don't have that anymore.

I use 25 Necator americanus. Most people use fewer, especially when starting out. They don't reproduce in the body, but they do release eggs into the stool. The eggs need to go through a few molts in the ground to become infectious. Modern sanitation kills them straight out. 

[dixonpete]

18 minutes ago, trents said:

I've thought about getting a biopsy done, but it seems like a waste of time and money. Others in the helminthic therapy community have gone down that road and have all come back with a clean bill of health. No secret celiac persists. I have no reason to believe my experience would be any different.

When I used to be glutened it was like getting norovirus. Projectile from both ends. Now there is nothing. Same with the colitis. Meat used to make me bleed and scream. It wasn't subtle. Now there's nothing. One or two quick, perfectly formed, painless stools per day in the morning.

 

[Scott Adams]

1 hour ago, dixonpete said:

Mine seem to last 6-7 month before they die off, so I re-inoculate in the spring and fall.

If they do die off, I go back to being celiac.

We've done several articles on this topic:

https://www.celiac.com/search/?q=hookworm&quick=1&type=cms_records2

and as @trents mentioned, is your doctor doing celiac disease blood antibody screenings, as well as endoscopies, to make sure the autoimmune reaction isn't still ongoing since you're eating gluten?

[dixonpete]

My GPs haven't mentioned that blood test, but I'll ask them about it. Too bad they didn't add it to the last panel, or perhaps they did and didn't mention it to me.

As I said, I hang out with other people who host hookworms, and they had those tests done and came back clean, so I'm not worried about it. I was a super reactive celiac on any exposure becoming devastatingly sick on any tiny exposure. Now I have frosted mini wheat cereal most mornings or regular bread toast with my eggs. Zero reaction. I'm about to have tuna pasta for dinner. My fridge is packed with bread/gluten.

[Scott Adams]

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!

[dixonpete]

38 minutes ago, Scott Adams said:

I emailed my GP this morning about TTG and the endoscopy. I'm sure he'll go at least for the TTG test.

As for gluten and hookworms, here's a pic of my tuna pasta dinner I was just eating when your notification came in. That's regular wheat spaghetti you see in the bowl. Had you messaged earlier I would have taken a pic of my two regular bread grilled cheese sandwiches I had for lunch.

I was undiagnosed for two years with celiac disease. Towards the end of that time in 2008 I was sick all the time. My record was 11x in one day. My couch was right by the bathroom and plenty of times I didn't get there intact.

I figured out it was celiac myself after getting sick in public after coming home from a friend's place where I had had a sandwich. Bread! I googled it, learned about celiac disease and never deliberately ate gluten again.

The diarrhea stopped the next day but it was a couple of years before I had any degree of gut health, and I still had my diagnosed ulcerative colitis to deal with. I wanted the disability food credit but was unwilling to be sick again for the weeks they would have me eating gluten for the biopsy. Eventually I found a GP who believed me and I got the credit anyway.

Turned out my Dad's sister and her son were celiacs. I had never been told so when I got sick celiac wasn't on my radar. They lived in England and we were never in contact.

I was glutened maybe 20x btw 2008 and 2018. Changed recipes, flour in with pistachios to make the nuts not stick together, a pill capsule I missed checking, undisclosed gluten in ingredients. One memorable time I had frozen yogurt. The gluten-free version was out, so recklessly I bought the regular type because there was no gluten on the label. I was sick for a full day and a half out of both ends, all while trying not to pass out. I had to get friends to walk my dog. Before my self-diagnosis I went to an office dinner party at the boss's house where lasagna was served. I was holed up in his bathroom for a couple of hours while the party was going on being sick. I had to go back the next day with a toothbrush to get all the sick out of the cracks in the tilework.

To anyone who claims I was never celiac, all I can say is you don't have my memories. 

Here's a video where the topic is discussed. The practitioner treats his patients with Necator americanus, the same hookworm I use.

https://www.youtube.com/watch?v=k-MfF2u5GR0

No one would deliberately infect themselves with hookworms without a very good reason, and plenty of people do exactly that.

 

 

 

 

[trents]

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.

[dixonpete]

The stats I hear is 70%+ of celiacs become unresponsive to gluten when hosting hookworms.

I'm on my third batch now. My first experience with them was in 2018. After they died off in 2019 I became celiac again and had to go gluten-free.

I know the research results are iffy. Real world experience is different and far more positive. I couldn't be happier that I use them, despite the mess my arm is right now from the entry wound. Celiac was one thing, my colitis was another. Now I don't have to deal with either condition.

I'll report back if those tests get done.

[trents]

If someone was interested in trying this hookworm therapy for celiac disease, how do you go about finding a practitioner who will administer it and do follow-up? I mean, I suppose do it yourself hookworm kits are not yet available on Amazon.

Also, dixonpete, in your experience, how long does it take for the therapy to be effective once these critters are introduced into your body?

Edited October 26, 2022 by trents

[dixonpete]

1 minute ago, trents said:

If someone was interested in trying this hookworm therapy for celiac disease, how do you go about finding a practitioner who will administer it and do follow-up? I mean, I suppose do it yourself hookworm kits are not yet available on Amazon.

Look up The Helminthic Therapy Wiki. There's a provider section with reviews. The guy I use doesn't have a website that I know of, but he accepts payment by PayPal and offers tracking. I email him and then pay him. 11 days later I have my larvae.

You have to watch out for the cold though. Shipping larvae in the winter risks ending up with dead frozen worms. It happened to me. They'll get replaced for free in the spring but better to order in the warm months. I use the long range weather forecast to figure out when it'll be safe. Where I live the first week in May is where it's consistently over 5C at night.

As far as help the admins in the Facebook Helminthic Therapy Support Group are amazing. There are a few people doing online consulting with helminths listed in the provider section. Some I think are people like me who have gone through the process and host helminths themselves and realized there was a market for their experience.

If you carefully read the Wiki you'll know everything there is to know.

 

[trents]

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?