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

This is a very small study of very short duration... and it has not been replicated.  It is extremely premature to conclude that this drug is effective or safe.

Even if it reduces symptoms, it does not treat the underlying pathological immune response.

And whatever medication is finally developed and approved will probably be very expensive.  

My hookworms are still working for me.

14 hours ago, M Susan said:

And whatever medication is finally developed and approved will probably be very expensive.  

It certainly will be in the US!

The only thing I have seen that might work is retuximab. It eliminates B cells (which generate antibodies) from the body, allowing a fresh set to be generated from stem cells. There are several case reports of people having therapy for other conditions achieving improvement in their refractory coeliac disease from retuximab. However, it is not safe enough for routine treatment of coeliac disease but it does show that the possibility of immunotherapy exists.

https://academic.oup.com/rheumatology/article/53/10/1906/1816469

1 hour ago, dixonpete said:

My hookworms are still working for me.

Do you have coeliac disease? The trial I saw showed no improvement.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7678792/

"reduction in gluten-induced damage to their intestinal villi"

REDUCTION in damage. Those who got the drug and participated in the gluten challenge had LESS damage than those who got the placebo.  

How much less?
How much damage are those of us who have celiac supposed to accept as normal?
What makes anyone think that damage to this critical part of the body is ever acceptable?

How much of the small bowel was tested?
How can we be certain that serious damage did not happen beyond the part of the small bowel that can be tested?

What was the criteria for this measurement?

Celiac nearly killed me before I was diagnosed. Please give me one reason why I would trust "LESS DAMAGE" as an acceptable measure compared to sticking with a 100% gluten free diet?

What do these people  mean by'' hookworms work ing''?

15 hours ago, sunny2012 said:

"reduction in gluten-induced damage to their intestinal villi"

REDUCTION in damage. Those who got the drug and participated in the gluten challenge had LESS damage than those who got the placebo.  

How much less?
How much damage are those of us who have celiac supposed to accept as normal?
What makes anyone think that damage to this critical part of the body is ever acceptable?

How much of the small bowel was tested?
How can we be certain that serious damage did not happen beyond the part of the small bowel that can be tested?

What was the criteria for this measurement?

Celiac nearly killed me before I was diagnosed. Please give me one reason why I would trust "LESS DAMAGE" as an acceptable measure compared to sticking with a 100% gluten free diet?

I too am skeptical but glad research is being done attempting to find something that works. On the other hand, I have adapted my diet around my celiac and avoiding gluten is working for me. There are many foods that I miss but it is what it is. 

3 hours ago, Caroline Keogh said:

What do these people  mean by'' hookworms work ing''?

Working to reverse celiac disease. The idea is that hookworms were a natural part of gut biome balance in premodern times. Supposedly, the hookworms produce regulatory compounds that keep our immune systems healthy. In modern times we have largely eliminated hook worm infections and removed their regulatory benefit. Supposedly, this is a contributing factor to developing celiac disease. There are some scientific studies to support this but at this time it is still considered to be fringe therapy.

3 hours ago, Caroline Keogh said:

What do these people  mean by'' hookworms work ing''?

Hookworms modify the immune systems' behavior to protect themselves in the gut. The argument is that in the history of the human species hookworms would have always been there, and as such would be a defacto component of the human immune system. Remove them and things can go haywire. That's the theory at least.

I was about to undergo surgery for my ulcerative colitis to get a bag when I decided to try it. I bought hookworm larvae off the Internet and applied them to my skin. Within a month or two they resolved both my colitis and my celiac disease. Both are in full remission. I could bathe in gluten now if I wanted.

The problem is my degree of success is an outlier. For most people it takes longer and the degree of success is less. For some people they get no results at all. Still, for others like myself it's been a miracle cure. 

6 hours ago, dixonpete said:

Hookworms modify the immune systems' behavior to protect themselves in the gut. The argument is that in the history of the human species hookworms would have always been there, and as such would be a defacto component of the human immune system. Remove them and things can go haywire. That's the theory at least.

I was about to undergo surgery for my ulcerative colitis to get a bag when I decided to try it. I bought hookworm larvae off the Internet and applied them to my skin. Within a month or two they resolved both my colitis and my celiac disease. Both are in full remission. I could bathe in gluten now if I wanted.

The problem is my degree of success is an outlier. For most people it takes longer and the degree of success is less. For some people they get no results at all. Still, for others like myself it's been a miracle cure. 

Have you been clinically diagnosed with coeliac disease by blood serum antibody testing and intestinal biopsy? If so, have you had follow up testing since you applied the larvae to your skin? Did you develop a skin rash and have you had stool testing to establish that you are actually hosting hookworm?

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?