No therapies other than a gluten free diet for life exist for celiac disease. The gluten free diet is insufficient for many to induce complete healing. I’m only talking about healing here. Any exposure to gluten causes damage. A crumb of gluten damages the system as if a celiac sufferer had eaten a piece of bread. The only way to improve our situation is participation in clinical trials!
The explosion of gluten free products and lax gluten free labeling enforcement in the US has made having celiac exponentially more difficult. Our fast paced lifestyle, food on the go, and movement away from cooking has left those with celiac dependent on processed gluten free foods. Some manufacturers are conscientious when providing gluten free foods. Some are out to make a buck on the gluten free diet trend.
New Clinical Trial
Anyway, before I go too far down that path, I was searching on ClinicalTrials.gov and found a new clinical trial just published today. Scientists are investigating a drug currently under development for Ulcerative Colitis. The study is out of Stanford University and here is the link for the study. It is a Phase 1 study which indicates early research into the safety of the drug. This seems to be another potentially gluten degrading enzyme, but it is hard to tell from their study design.
I’m on the east coast and this study in being done in California. I’ll reach out to find more about the study. Again, the study just was posted today, so there is more research to be done.
The most interesting thing is that the company that has drugs of a similar name (PTG-300 and PTC-200) . They don’t mention PTG-100 on their site. A search of the press releases on their website does not yield results with the keyword “celiac”.
I could be wrong. A different company could be the source of the drug. I have questions into the researchers at Stanford and information requested from the company.
Participation
I believe in science. Participation in clinical trials will help move the ball forward on celiac research. If we don’t volunteer to participate, change doesn’t take place. As much as I like to think my ranting and raving on social media will get a drug to market faster, that’s not how it works. So, I want you to find a research study in your area to help move research forward.
I also live this principle. I have responded to the survey at BeyondCeliac regarding celiac patients and their experience with Covid. I’m also participating in an observational study regarding immunity and Covid. They will track me for two years to see how my immune system reacts to having Covid. I would donate convalescent plasma if they asked, but I’m unable to donate plasma.
A similar study is conducted with a different enzyme but similar action, latiglutenase at the Mayo Clinic. In addition, AN-PEP has also been studied extensively and there is a lot of promise that gliadin contamination can be broken down before it touches the small intestine.
Yes but Latigluenase has published mixed results. AN-PEP is an option too. This is the first step.
I very much agree with you.The mixed result with latiglutenase was that it did not show any difference compared to the placebo in a study for FDA approval. The problem was not the product but the study time was too short for an inflammatory reaction to happen with the placebo and therefore both groups did equally well. AN-PEP is possibly a better option anyway. There are many more studies and it appears to work better because it is one single enzyme and not two like latiglutenase that depend on each other. The manufacturer of AN-PEP (DSM) does not want to got through the FDA process and wants to keep it as a dietary supplement. . My children have been taken AN-PEP for years and their blood test results have stayed perfect.
An-Pep is not FDA approved and any studies I’ve see on have not shown to be really effective. In one study, Marsh scores increased in two out of sixteen participants due to placebo, so the study was deemed invalid. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3793137/ There is no scientific evidence that in the human body An-Pep works.