Every Reason to Feel Hopeful: Progress is Happening for Patients with Celiac Disease
At Ukko, we’re making progress unraveling the challenge of creating a truly safe gluten protein that’s capable of making healthy foods that anyone would enjoy eating. We also know from talking extensively to celiac patients and families that the emotional, social and physical toll can be exhausting. But there is every reason to hope as progress is on the horizon.
In the meantime, in honor of Celiac Awareness Month, we sat down with Dr. Raanan Shamir, Chairman of the Institute of Gastroenterology, Nutrition and Liver Diseases at Schneider Children’s Medical Center of Israel, and Jennifer Iscol, President of the Celiac Community Foundation of Northern California. They shared their respective views on what celiac disease means for patients -- and what they find hopeful about the future.
Go to any restaurant and it’s not uncommon to hear, “Oh, I’m gluten free -- what are my options?”
But as any celiac patient knows, there’s a big difference between gluten free by choice -- and gluten free by medical necessity. For those with celiac today -- roughly one to two percent of the world’s population -- the only real option for relief and recovery is a strict gluten-free diet.
“With a gluten-free diet, there is a 100 percent recovery rate, which is remarkable,” said Professor Shamir, who is also Professor of Pediatrics at the Sackler Faculty of Medicine at Tel Aviv University. “If you have to be sick, there are worse diseases. With celiac, you can look at the glass as half-full: you don’t need drugs with severe side effects to be healthy.”
That said, an accurate celiac diagnosis hinges on getting the required serological tests while one has not abstained from eating gluten, said Prof. Shamir. “The test is really the only way to confirm celiac disease,” he noted. “And it’s important to get it done. For every one symptomatic patient, there are seven without any symptoms who have silent or subclinical celiac disease.”
That diagnosis will help patients reverse the negative effects of celiac in the body, which can be substantial and severe. “Our immune system is designed to see the food we’re digesting as friends, not enemies,”explained Prof. Shamir. “With celiac, the body identifies part of the gluten protein -- gliadin -- as the enemy, attacks it, and produces an inflammatory reaction that destroys the villi in the intestine.
But it’s not limited to only that response. Bone can be affected, osteoporosis is a possibility, autoimmune disorders can be triggered, and even some intestinal malignancies can occur as a result of this inflammatory cascade.”
Jennifer Iscol, president of the Celiac Community Foundation of Northern California, has firsthand experience with the impact of celiac disease -- from the symptoms that raised concerns to testing and a subsequent diagnosis. Fifteen years ago, her son Alex was tested and confirmed to have celiac. “At the time, we’d never heard of it,” Iscol recalled. “But the doctors knew then -- as is still true now -- that a strict gluten-free diet is the only treatment. Fortunately, it doesn’t slow my son down in the slightest and never has. He’s got a very positive attitude.”
Iscol says celiac sufferers can feel legitimately hopeful about the future, given more than two dozen companies are working on non-dietary treatments that could cure the disease or address certain aspects. “Right now it’s a race to be the first to get to clinical trials and then the market,” she observed. “But the reality is there will be multiple solutions, which is good because not everything will work for every person.”
“There are very smart, thoughtful people focusing on this, from researchers and physician scientists to biotech innovators like Ukko and people in advocacy and pharma,” Iscol continued. “Because there’s been so much progress and given the intensive work that’s underway currently, we do expect things to change not in the long term but in the short to medium term.”
Prof. Shamir sees the future similarly.
“In the coming years, there will be drugs that will work on the immune system so it can tolerate gluten again,” he predicted. “That might look like hydrolyzing the protein so people can safely consume it or blocking the harmful immunological response from happening. It could be solutions like Ukko is developing -- gluten that does not cause celiac but has the same qualities as normal gluten for much tastier foods than we have now. The future is bright but the timing is still unknown.”
In the meantime, both Iscol and Shamir highlighted the importance of a support system for celiac patients and their loved ones. “Get connected to a celiac medical center and celiac patient groups,” advised Prof. Shamir. “We know that members of celiac societies or groups are more adherent to their diets and their outcomes are much better. These places help you learn from others, ask the right questions, and get good, useful information.”
Iscol is also a member of Ukko’s Patient Council, a group that brings together patients and their families to offer perspective, ask questions, and ensure their voices and experiences are represented along Ukko’s development journey. “It’s been an ongoing conversation to provide input on the progress they’re making,” she noted. “Ukko appears to approach this scientifically and thoughtfully and we’re able to provide feedback on the patient perspective.”
She noted this aligns with a larger positive trend of most players in the field -- from doctors and scientists to pharma and biotech -- to seek a larger understanding of the patient experience. “I appreciate that innovators are incorporating real-life patient voices at the early stage,” said Iscol. “It is so important to be heard.”
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