Yesterday Kim emailed me this article about Dr. Fasano’s pharmaceutical drug deal.
I wonder what most of you think about this. I immediately joked with Kim, "We should have flirted more with Dr. Fasano!"
When the day comes to start advertising this wonder drug, I think they should definitely leave the part about cholera out of the ads, otherwise people might think, "Didn’t they see I Am Legend?!?! [btw, this movie will scare the jeepers out of you, but I still prefer the 70's version, Omega Man, starring Charlton Heston. The modern one has all the special effects and Will Smith's abs. The older version has more of a story, talking, organized zombies, and an overall campy feel with a groovy soundtrack, but I digress.]
I have to admit that I’m probably not going to be taking a pill until it’s been out on the market for several years, but I’m one of those people that still hasn’t had LASIK surgery. Don’t get me wrong though, I understand this (if it works) might be a very good thing for many people. Well, maybe not for the owners of gluten-free businesses.
What do you think?
I can’t believe this! A pill that could cure us? Even still I don’t think I would take the pill and eat gluten foods….the thought of it makes me ill. I suffered so much that I just have negative association with the food anyway. I had an extreme case though, maybe recently diagnosed people who have a hard time with being celiac could take this. I can’t believe it though!
This pill is not intended to be a cure for Celiac but will supplement the GF diet. It is intended to help patients against the unintended ingestion of gluten, ie cross contamination. So, all those manufacturing GF foods can feel confident in the growth of the market!
If you read Alba’s page regarding AT-1001, it is actually meant to be a pill, when, taken daily, allows the Celiac patients to eat “normally”. Much like taking a pill for hypertension daily to reduce blood pressure. So, not a cure, but rather a treatment. Nobody, though, has ever been able to adequately answer whether this will be true for those who are gluten intolerant–not having Celiac Disease–like myself and my husband. However, there is hope for my Celiac diagnosed daughter.
i am always skeptical about new medications. you never know what the side effects are, especially in the far future. i was diagnosed with celiac disease a year ago, and altho it has been challenging, i have been successful. i feel lucky that our disease is controlled primary by diet and not through artificial means. personally, i wouldn’t take a new drug. however, maybe others are having a more difficult time staying gluten free and would be willing to take medicine.
It’s important to remember that the bodies reaction to gluten is an autoimmune response to something it considers toxic. It tries to get rid of it so it doesn’t make us sicker. If we bypass the bodies natural intelligence with a chemical we may be able to eat a pancake but the immune response is only masked. Further damage in the form of diabetes, rheumatoid arthritis,or neurological symptoms etc. may occur. If drugs really cured disease then why are so many still sick? I think my family will stay gluten free for the time being.
The AT-1001 will stop the gluten from causing the autoimmune response–and thusly the secondary diseases (caused by absorption of gluten). It is a fascinating subject, the how it is expected to do this, to read about.
But, in the end, we ALL will do what we are comfortable with. That is what we do now on the gluten free diet.
Merry Christmas all.
I would only consider taking a pill if I were traveling or might be in a situation where cross contamination is almost unavoidable. But for now I am happy to be eating a diet full of fresh, unprocessed, natural foods…Well, let’s say I do love to indulge in those wonderful Pamela’s Brownies and Namaste Spice Cake and Gluten Free Pantry Muffins along with WholeFoods GF Bakehouse goodies. So vendors are definitely safe!!!
I tried to get into that clinical trial after I moved up to Phoenix at the Mayo Clinic. Since I’m antibody positive, pill cam positive, I didn’t qualify. And I wasn’t willing to do a six week gluten challenge to get a biopsy under general anesthesia (my previous biopsy under local was scrubbed due to my inability to get sedated enough).
I really wanted to do my part to be part of the trial, and was bummed when I couldn’t get into the study. So I’ll be keeping my fingers crossed that this can hit the market sooner rather than later. I’ll be at the store hours before the release to get my first supply when it does.
Please remember that 10% of Celiacs have Refractory Sprue & that the GF diet in not sufficient in preventing the autoimmune response. They must take anti-rejection (transplant) meds to protect them. I am able to stay well just on the GF diet, but my daughter has been on Cyclosporine for the last 16 years. She has no hope of safely getting pregnant on these meds.
These meds can do much damage to the kidneys, as well.
An alternate meds would be welcomed greatly.
Please remember that 10% of Celiacs have Refractory Sprue & that the GF diet in not sufficient in preventing the autoimmune response. They must take anti-rejection (transplant) meds to protect them. I am able to stay well just on the GF diet, but my daughter has been on Cyclosporine for the last 16 years. She has no hope of safely getting pregnant on these meds.
These meds can do much damage to the kidneys, as well.
An alternate med would be welcomed greatly.
I think I’d wait a while to see how this drug does in the short and long term studies. As with almost all drugs there will be side effects or possibly other conditions that might develop because you take the drug.
Happy Holidays!
Sheltie Girl @ Gluten A Go Go
Hi girls. Yes, maybe you should have put the flirt mode into high gear. Cute Dr. Fasano will soon be the zonulin zillionaire. He deserves it though; he’s done so much for the celiac community. Good for him.
Having said that, I will take a pass on drug therapy for celiac disease. We’re lucky enough to have the only (at least I think so) autoimmune disease in which we know the precipitating factor — and it’s food. How cool is that? My drug of choice is to avoid gluten and eat steamed kale, quinoa salad, grilled salmon, and Dagoba dark chocolate instead.
But to sum it up — zonulin is a protein that acts as a control mechanism in the intestine. It facilitates passive diffusion of stuff (scientific term) across the epithelial barrier and into the bloodstream. People with active celiac disease have higher levels of zonulin, which appears to play a role in immune function by allowing the cell junctions to open and stay open. Then antigens slip through and stimulate antibody responses, which is not good. Elevated zonulin levels may be predictive of increased autoimmunity in people at risk. But, the good news is that people who adhere to a GF diet and take care of themselves show decreased zonulin levels. Good, good.
So, no — I have no desire to take drugs when I can use food as my therapy. Yum!
Happy gluten-free holidays everyone!
Of course I’d love to be able to stay healthy simply on the GF diet, but as someone with refractory sprue, I’m afraid that’s not possible. I appreciate the fact that I ( and others like myself) may have a potential drug to help us at some point in the future. Having been on anti-rejection meds for years, I was so hopeful that I could just be on the GF diet after finally getting diagnosed with Celiac. However, every attempt to taper off the meds has put me into severe relapse. It has become evident that I need the meds to survive. Count yourself blessed if you don’t have to take meds, but some Celiacs do.
Yes, Toni — I do count myself blessed for sure! And my heart goes out to those like you who suffer from refractory sprue, Crohn’s disease, MS, diabetes and the list goes on. That is why scientists like Dr. Fasano are so important in the understanding of this and other autoimmune diseases. I have a huge amount of respect for those working on treatments for people who aren’t able to find relief from diet and lifestyle changes alone. Studies are also underway leading to the identification of additional genes that, when combined with the HLA DQ genes and environmental influences, precipitate intestinal barrier malfunction (facilitating celiac, etc.). My daughter may be one who will benefit from AT-1001, but in general, positive lifestyle changes, nutrition therapy, and exercise should be the first step in healing. From that point, it’s definitely nice to have more options!
I agree, Melissa. I was so excited with the prospect of just using food as medicine, however, in my case (and others) that has not been enough. It has been an emotional roller-coaster for me- the excitement of potenially getting off the meds and then the sheer disappointment of seeing my body go into release when trying to taper off the meds. No doubt- the Cyclosporine has saved my life! I just pray that a safer, effective med could be developed that might come with fewer contraindications.
Count me as one who will not be taking the pill. I feel better than I have in years just by changing my diet. I can do that on my limited budget. And since I have no health insurance, I don’t think I could justify the cost of it when diet can work well for me.
I’ll be a Guinea Pig… Where do I sign up..
Maybe I am one of a few who overall does not feel better.