Celiac Disease Awareness Month 2021
Every Reason to Feel Hopeful: Progress is Happening for Patients with Celiac Disease
May 24th, 2021
It’s well known that one of the biggest impediments to staying gluten free is the taste and quality of many gluten-free foods -- a pain point shared time and again by our celiac patient community and their families. This is on top of the emotional, social and physical toll that comes with managing a gluten-free diet, which can be exhausting, a point which is often overlooked and misunderstood by others. At Ukko, we’re focused on solving this problem. We’re creating a new gluten designed especially for people with celiac that will match regular gluten’s ability to produce amazing, delicious, and healthy bread, baked goods, pasta, etc., that everyone can enjoy.
As part of Celiac Disease Awareness Month, we wanted to take a moment to share the progress which is on the horizon and the hope this brings with it.
We sat down with our close advisor and leading celiac disease expert 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 to hear 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 disease patient or person with gluten sensitivities knows, there’s a big difference between gluten free by choice -- and gluten free by medical necessity. For those with celiac disease 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. But the challenge is staying on that diet when gluten-free foods like breads, baked goods and pastas can often taste suboptimal.
“Most patients experience a substantial or full recovery if they can strictly adhere to a gluten-free diet,” 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 disease 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 disease 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 disease, 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 disease. “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 that helps him work through the challenges.”
Iscol says celiac disease sufferers can feel legitimately hopeful about the future, given many companies are working on various treatments. “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 said. “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.”
“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.”
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 blocking the harmful immunological response from happening. It could be solutions like Ukko is developing -- gluten that does not cause celiac disease but has the same qualities as normal gluten for much tastier foods than we have now. That’s important because it’s hard to stay compliant with a gluten-free diet if many of the options don’t taste good or are expensive, which is currently often the case.”
Ukko is developing a gluten specifically designed for people with celiac disease and gluten-related disorders. Ukko’s gluten will enable home cooks, bakeries and food companies to bake delicious, healthy bread, pasta and pizzas that everyone can eat. The Ukko team uses a combination of AI, immunology, and highly advanced protein engineering to create a new kind of gluten. Ukko is able to maintain all of the gluten's good qualities (e.g., taste, nutritional value, etc.) while removing its bad qualities: those that trigger the immune response and damage in people with celiac disease.
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 disease medical center and celiac patient groups,” advised Prof. Shamir. “We know that members of celiac disease 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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