March 18, 2021, was the first day of the NIH’s Accelerating Progress in Celiac Disease Workshop. This workshop is a direct outcome of our advocacy efforts in Washington, DC, in particular the inclusion of report language in NIH’s appropriation budget by our legislative partners on Capitol Hill. (Thank you for your support of this work!) It is anticipated that an important outcome of the Workshop will be the issuance by NIH of a Notice of Special Interest for celiac disease. An NIH Notice of Special Interest describes “research topics in a specific scientific area… and points to active funding opportunity announcements (FOAs) through which investigators can apply for support”. This is a huge opportunity for celiac disease researchers to access federal biomedical research funding.

I was honored to be invited by NIH to talk about the unmet needs of celiac disease from the patient perspective as part of the workshop’s opening panel “Celiac Disease Overview”.

As part of the preparation for my presentation, we asked our patient community to share their stories about living with celiac disease and, as always, I was deeply moved by the responses we received. As the parent of a child with celiac disease, the testimony of parents hit me particularly hard:

Our 2-year-old with a family history of celiac disease was put on a gluten challenge and after only 3 weeks had lost 4 pounds and could barely get through the day. The GI refused to diagnose him until he finally completed a gluten challenge at age 3. We are scarred from having to keep feeding him gluten when it made him so sick.
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Our 7-year-old missed 33 days of school due to inadvertent gluten ingestion. The school’s solution is to have him sit at a cafeteria table by himself.
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Our daughter gets a meal from her dorm cafeteria that’s “safe” for her to eat. 2 hours later she is uncontrollably throwing up, pooping her pants, and other floor members are upset they can’t use the bathroom. The paramedics come and ask if she is having a drug overdose. They put her in the shower, leaving her pooped pants for all to see, and wipe up the vomit on the floor. For the next several days she sleeps through class, has foggy brain so she can’t do her homework, her anxiety is through the roof with the humiliation, and she says she would rather die than continue on like this.

These stories are why we work so hard to bring an end to the suffering caused by celiac disease. And this is why we continue to ask for your support. Thank you for all that you do.

Together we can end this disease.

To Our Health,

Marilyn G. Geller
Chief Executive