A mother and son share their story of celiac disease

May 13, 2025

Marilyn and Henry want to help others who are living with celiac disease

This video features a real patient and his mother sharing their personal experiences in their own words. Individual experiences may vary. This information is available to the general public for disease awareness only; it should not be used for diagnosing or treating a disease. Please consult your health care provider for advice.

This article is developed by Takeda. Henry and his mother, Marilyn, have received compensation from Takeda for their participation.

Content Warning: This article includes a personal experience mentioning a suicidal thought and may be distressing to some viewers. If you or someone you know is experiencing suicidal thoughts, call or text 988 to reach the Suicide & Crisis Lifeline or chat online at 988lifeline.org and connect with a skilled, compassionate crisis counselor.

“At 15, we had a child who was so malnourished because he could not absorb the nutrients due to the damage from celiac disease that he literally could not get out of bed,” says Marilyn about her son Henry.

That’s when Henry received a celiac disease diagnosis. Marilyn made sure Henry stopped eating gluten.

“Three weeks after following a gluten free diet, Henry stood in our kitchen and he said to me, ‘Mom, my brain is no longer telling me to kill myself.’ No parent should ever have to experience a child who was going through that much trauma,” she says.

Henry, now in his early 30s, has learned to manage his disease. But because there is no treatment for celiac disease, he must devote much of his time and energy actively avoiding gluten.

Dan Leffler, M.D., executive medical director and global clinical lead of Takeda’s celiac franchise, has seen first-hand the emotional burden celiac disease can have on patients. “Many people with celiac disease experience depression and anxiety because of social limitations, how strict they need to be in their diet and the fear of accidental gluten exposure.ⁱ”

For some patients with celiac disease, the gluten-free diet may be enough to manage their symptoms. But for about a third of people with aggressive celiac disease who are more sensitive to gluten exposure, the gluten-free diet is not enoughⁱⁱ. “Celiac disease is a serious, lifelong disease with no approved treatment beyond a gluten-free diet,” says Dr. Leffler. “Takeda’s commitment to addressing unmet needs is fundamental to who we are as a company. We have deep roots in gastrointestinal and inflammatory diseases, and I am hopeful we can make an impact on the millions of people living with celiac disease.”

Marilyn’s desire to make an impact for people like her son is so strong, she became Chief Executive Officer of the Celiac Disease Foundation. Henry is also an active advocate, sharing his advice with others living with celiac disease.

He is grateful for research underway to better understand his disease.

“I have a lot of hope, when it comes to what's on the horizon for celiac disease,” says Henry.

References

i. Ho, W. , Atkinson, E. & David, A. (2023). Examining the Psychosocial Well-Being of Children and Adolescents With Coeliac Disease: A Systematic Review. Journal of Pediatric Gastroenterology and Nutrition, 76 (1), e1-e14. doi: 10.1097/MPG.0000000000003652. ii. Al -Toma A et al. United European Gastroenterol J 2019;7:583-613.34

Takeda does not have any product approved for the treatment of celiac disease at the time of publication.

A mother and son share their story of celiac disease | Takeda Stories

A mother and son share their story of celiac disease

References