Tests are now underway in Philadelphia on a medication that could change the lives of those with celiac, & for many people who aren't yet, aware they have it:
Jax Lowell doesn't only KNOW about celiac disease.
She literally wrote the book on how to live with it., "The Gluten-Free Bible."
But it ravaged her body for years before she knew what it was.
Lowell describes her plight before her diagnosis, "I had to be 90 pounds, I had to have 2 bones broken a-traumatically from lack of calcium, pernicious anemia. You name it."
For those with celiac, the small intestine can't digest gluten - a protein in wheat, barley, and rye.
It triggers an immune reaction that, over time, cripples the absorption of vital nutrients.
Dr. Anthony DiMarino, a gastroenterologist at Jefferson University Hospital says, "You can lose 50, 60, 70, or 80 per cent of the absorptive capacity of your intestine."
Celiac causes severe stomach symptoms - chronic diarrhea, pain, and bloating, but can also lead to brittle bones, anemia, diabetes, and infertility in women & men.
Celiac isn't rare - perhaps 1 in 130 of us have it - it's about as common as high cholesterol.
But it is often misdiagnosed.
A few years ago, we reported on Flyers & Sixers owner Ed Snider's 20-year ordeal before he got the proper diagnosis.
A gluten-free diet is the current approach to treating celiac, but that's a challenge, because gluten is used in many processed foods.
And it can take the fun out of eating, as Lowell remembers, "I really wasn't interested in food, because I associated food with not feeling so well."
Help could be on the horizon.
Lowell is taking part in nationwide tests of AT-1001, a medication that blocks gluten.
Here's how it works:
The body produces a compound called zonulin - the gatekeeper between cells lining the small intestine.
Too much zonulin, and the gates get stuck open, allowing a flood of gluten proteins.
Which triggers the crippling immune reaction.
The new drug, obstructs the zonulin, keeping the cell gates closed.
Dr. Anthony DiMarino, is overseeing tests of the drug, at Jefferson University Hospital, & says so far, he's been impressed.
Dr. DiMarino says, "It doesn't have any side effects, 'cause as soon as it stops blocking the junctions, it seems to be destroyed by the body."
The drug won't totally replace a gluten-free diet, but Jax says it does allow for a more normal life.
Lowell says it would be an amazing step forward, "We can have a little more control of our lives, by letting go of control. With a pill, you can be more spontaneous, you can travel."
Trials for AT-1001 are open. For more information, contact Angela Gordon, Celiac Study Coordinator , at 215-955-7979.