IMU-856 Shows Promise as a Potential Treatment for Celiac Disease

You obviously had very bad symptoms and I am glad you are on the mend. You might not have coeliac disease though. You may have an inflammatory bowel condition that is antagonised by gluten. Gluten is highly immunogenic. Many people with active coeliac disease develop extreme intolerances to foods in addition to gluten. Milk is a common example. Milk used to make me extremely ill - much worse than gluten, but now I can consume it without problem. I think this is because my gut has healed. I am sceptical that hookworms can treat coeliac disease because of its mechanism. It is plausible that hookworms can treat inflammatory bowel conditions. Perhaps a hookworm infection has allowed the gut to repair permitting you to tolerate gluten? This is why it would be informative to see any change in your serology. I can understand your not wanting to resume eating gluten for an endoscopy. I refused but managed to get diagnosed on my symptoms and serology.

I spent a good 10 years dodging gluten. When I got caught it wasn't subtle. My last gluten exposure was a big one with the reaction lasting a day and half. I had to sit in the bathtub for hours to catch all the vomit and diarrhea being projected out of me. It was gluten. Also, as I said, my symptoms were identical to my formally diagnosed relatives. It's kind of a slam dunk.

What makes my case interesting, besides the hookworms, is that obviously my ulcerative colitis (which was diagnosed with a camera) and my celiac disease were connected at some level otherwise the hookworms wouldn't have been able to fix both conditions. I've never seen that talked about anywhere. Animal and nut protein for the colitis and gluten for the celiac. Both turned off like a switch.

In the Helminth Therapy Support Group there are other celiacs who have also been put into remission. There are also some who haven't. You won't know which camp you'll fall into till you try.

I don't doubt your symptoms or reaction to gluten. It would be nice to have blood work to narrow it down as there is a whole spectrum of gluten related disorders.

3 minutes ago, Russ H said:

I don't doubt your symptoms or reaction to gluten. It would be nice to have blood work to narrow it down as there is a whole spectrum of gluten related disorders.

I also had one bout of Dermatitis herpetiformis. Not sure why it only occurred once. Weirdest skin condition ever.

On 5/25/2023 at 10:15 AM, dixonpete said:

I've told this story before here, but I guess it bears repeating.

For two years straight I was sick multiple times a day was catastrophic diarrhea. Towards the end I was hitting over 10x a day. I rarely left my apartment and was considering suicide. My GP wasn't any help. One day after getting sick after a sandwich I finally figured out the association. The diarrhea stopped the next day but the blood and mucus took a good six months+ to resolve. I also had colitis which complicated things but having the diarrhea stop was fantastic.

I refused to take the biopsy because I wasn't willing to restart eating gluten. Whenever I was accidentally exposed I got terribly sick. Turned out my aunt and cousin were both celiacs with the same symptoms. That was good enough for me. This was in 2008.

Probably 20x I was glutened btw 2008 and 2018 till when I started doing hookworms. Horrible, incapacitating reactions - accidental exposures with a good reason for being fooled each time. The colitis remained terrible. Lots of screaming. Turned out eating meat and nuts caused most of that.

The rash for the hookworm entry is awesome. It looks horrible and blistery but heals without a scar. I've got a new shipment coming in in a couple of weeks and this time I'm going to try using some antihistamine cream. I'm never had a stool test but I did have a colony collapse once and saw a whole bunch of worm carcasses in my stool. I use 25 Necator americanus at a time.

It's been a night and day difference since I've been on hookworms. No colitis unless I eat pistachios. I'm still lactose intolerant but other than that I have no food limitations. Bread with most meals.

I've got a guy I email 2x a year and pay him by PayPal. An envelope with the larvae gets shipped out by courier.

It bears repeating. Sometimes hookworms work for celiac disease, more often though gluten reactions are simply less. I lucked out. Crohn's and ulcerative colitis tend to do better with hookworms. Maybe it was because I had both celiac and colitis I did so well on them, who knows?

Hi, so glad that hookworms helped you. I've given them a couple of tries but I have gut pain that I need to use medications for and I think those medications killed them (I can't not take the meds since the pain becomes too much and I can't wait the months that it can often take for the worms to start making a difference. I know different doses work for different people. What dose do you do?

1 hour ago, Guest Kitty said:

Hi, so glad that hookworms helped you. I've given them a couple of tries but I have gut pain that I need to use medications for and I think those medications killed them (I can't not take the meds since the pain becomes too much and I can't wait the months that it can often take for the worms to start making a difference. I know different doses work for different people. What dose do you do?

I was doing 25 larvae every 6 months which was handy coordinating with the cold weather here in Canada. This last cycle I managed to wait too long and aged out my hookworms and had to go gluten-free again. I just did my first gluten test today and so far so good (famous last words). I think I've exceeded the time that I reacted last week when I had an accidental gluten exposure. That was day 23. This was day 30 post-inoculation.

If things continue to go well (as in not getting sick) I'll try a pinch of bread tomorrow. Going forward I'll be going with a 25 larvae 5-month cycle.

Did you talk to John Scott about your issues? Maybe try one of the other helminths?

I've been keeping a blog on this platform about my adventures with hookworms.