Jan Frey, shown with her doctor, Dr. Robert Reif of WellSpan Neurology, is starting a support group for people on a gluten-free diet.
Jan Frey, shown with her doctor, Dr. Robert Reif of WellSpan Neurology, is starting a support group for people on a gluten-free diet. (Submitted photo)

The symptoms that Jan Frey started exhibiting in 2011 looked like strokes at times, and at other times they looked like epilepsy, dementia or multiple sclerosis.

She doesn't remember, but her husband, Kirk, says that she would sleep for up to 20 hours a day.

During her few waking hours, she was functioning in a zombie-like state.

Doctors were able to connect the Spring Garden resident's symptoms to a concussion she had in 1997.

Dr. Robert Reif, of WellSpan Neurology, identified her condition as hemicrania continua, a frequently misunderstood condition in which a person will experience a constant headache, sometimes as the result of a concussion, as in Frey's case.

"I was having continuously the symptoms that looked like a concussion, always on one side of my head and always involving mental clarity and neurological deficits," said Frey, 58.

After Frey kept spreadsheets detailing her symptoms and rating the pain on a scale of 1 to 10 for several months, a doctor looked at the results and recommended that Frey try a gluten-free diet. The gluten-free diet had been very helpful for several of his patients in the past who showed symptoms similar to Frey's.

"I had that in the back of my mind all along, so I tried a few things, and I thought well maybe it is making a difference, but I wasn't sure," said Frey.

At her doctor's recommendation, she also joined the I Can! Challenge, a 12-week program developed by Aligning Forces for Quality - South Central Pennsylvania to give people guidance and support for improving their health.

Aligning Forces for Quality - South Central Pennsylvania is a regional coalition that brings York and Adams county patients, doctors' offices, hospitals, community organizations, employers, and insurers together to address health care quality, access and cost.

The I Can! Challenge program taught her a lot about the diet, like the fact that even ice cream contains gluten, she said.

"It turns out that by monitoring things that were happening, I noticed that my blood glucose numbers increased when I had a grain product," Frey said.

Her numbers were stabilizing when she was not consuming grains.

When Frey heard gluten-free specialist and national speaker Dr. Tom O'Bryan tell an audience that by cheating on the diet one time a month, a person is non-compliant, she felt like he was speaking right to her.

She knew it was time to really buckle down with the gluten-free diet.

In the past year that she has committed to eliminating gluten products from her diet, Frey has seen significant health improvements.

Her neurological condition is almost completely cleared up, and after walking with a cane for 11 years, she now walks on her own.

Frey plans to share her experiences at the Gluten-Free Support Group she is starting together with Ryan Swank, assistant director of Brain Balance.

The first meeting will be held from 7 to 8:30 p.m. Tuesday at Brain Balance, 2300 Carlisle Road in West Manchester Township.

"My motivation in this is to help people who either know nothing or just need the support," Frey said. "When I started this I didn't know anything. I didn't know what questions to ask, and now that I've been doing some studying, I've got recipes that work and I want to share that."

"I've talked to people in grocery stores who say 'I don't have a clue what to do,'" said Frey.

Anyone interested in learning more about a gluten-free diet or in sharing advice is welcome.

For more information, email glutenfreegroupyork@gmail.com or visit www.facebook.com/glutenfreegroupyork.

- Reach Chelsea Shank at 505-5432 or cshank@yorkdispatch.com