Be sure to check out the Celiac Advocates page for other Person Behind the Passion feature stories.
*SPECIAL NOTE: The stories I share here are NOT sponsored posts. I invited each advocate to share their stories. There was no fee. This is my personal effort to increase awareness and to increase a collaboration of efforts.
Celiac Passion Put Into The Making of a Documentary
Michael Frolichstein was diagnosed with celiac in March 2009. He and I were diagnosed at the same age, 40. And both of us were diagnosed after decades of symptoms. While I wouldn’t wish that story on anyone, what came out of his celiac story is a documentary that is educating a countless number of people. And this documentary, with no doubt, is behind quicker testing and diagnosis for many. I am so very excited to share the story behind the person who created the film, The Celiac Project.
I actually met Michael and his wife, Ellen, in the spring of 2011 at a Gluten Free Event in Chicago. I was there with my book, and they were there to talk about the film they were working on. I didn’t know it then, but our paths would cross again. More on that later.
So now let me share Michael’s story.
Diagnosed After Nearly 3 Decades of Symptoms
Michael’s list of symptoms, that lasted through close to 30 years, included stomach issues, skin problems (Dermatitis Herpetiformis), seizures, brain fog and migraine headaches. He learned that most of the doctors he’d seen through the years had no knowledge of celiac disease. His symptoms led his previous primary care physician to diagnose him with IBS rather than referring him to a gastroenterologist. (This happens all.the.time—-and it makes me crazy!) I have no doubt that this diagnosis–IBS–is delaying many from a correct diagnosis: Celiac.
Knowledge is Everything
I know that every doctor cannot be educated about every single disease and disorder, but gosh!—celiac isn’t rare. It is a relatively common genetic disease, affecting 1:100 people. Why isn’t it on more physicians’ radars?!
“It took me changing doctors and finding a doctor that thought a little outside the box to finally get diagnosed,” Michael said. He didn’t even know she was testing him for celiac. “She listened to my life story for over an hour and picked up on enough clues to do the initial testing.” What an amazing doctor!
She not only impacted Michael’s life, and his family’s (which eventually included more family members being diagnosed)—but by diagnosing this particular man, many more are (and will be) impacted through the documentary he was inspired to create and through his weekly podcast.
Not a Quick Healing Time
At the time when Michael was finally diagnosed, his health had been declining rapidly. This decline in physical health impacted him in other ways as well. “It was affecting me deeply on a psychological and emotional level,” he shared. This is a powerful statement! How many of us can relate? I know I can.
While our stories are similar in some ways, however, the time it took Michael to feel better was much longer than mine.
“It took a few years due to the years of damage to my intestines,” he shared. “But overall most of my issues are gone. I have better digestion and skin and I don’t get migraine headaches anymore.”
His story is a good reminder to those who don’t notice a quick change in their health. “I always advise people who are newly diagnosed and are discouraged either by having to be so diligent about the gluten free diet or that they aren’t feeling much better yet, to be patient,” Michael said. “It’s not an easy change to make, but if you stick with it your health will improve and symptoms will lessen.”
Michael shared that he recently had a follow-up endoscopy that showed that his villi had grown back. He also gets occasional follow-up blood work to be sure his numbers are where they should be.
Transitioning to Gluten Free
Michael was fortunate in that he was sent to a dietitian who specialized in celiac. I wish that guidance was available to everyone who is newly diagnosed. Of course, even with this support, the transition was still challenging. Social situations can still be difficult. “After all these years I struggle in certain social situations, particularly at formal events like weddings.”
“The flip side,” he continued, “is that it is so fantastic to have an answer to what is wrong with me after so many years of being sick and not having answers.”
Even though the social situations can still be trying at times, Michael and his family don’t take chances. “We research restaurants before eating out and read labels. We have a saying, ‘when in doubt…do without!’” Perfect!
At first, when Michael was the only one who needed to be gluten free, they didn’t maintain a gluten-free home. Now that three of them are gluten free, their home is 100% gluten free.
One Diagnosis That Led to More
Michael’s daughter, Jessica, was diagnosed when she was 3 ½ years old. Michael and Cam interviewed her on their podcast, The Celiac Project Podcast, last year after an over-night school field trip. I shared that story here. What a great role model she is!
Ellen, Michael’s wife, is also gluten free, due to having Hashimoto’s disease. *Important Note: She was tested for celiac before going gluten free (and tested negative).
They have another daughter who has been tested numerous times, however her tests continue to come back negative. “Our biggest challenge with her is to make sure that we remember to feed her a small amount of gluten each day.”
If you’ve seen Michael’s documentary or if you listen to his podcast, you will know that his nephew was also diagnosed with celiac. Sam’s story, including the testing process, was shared in the documentary, The Celiac Project.
The three family members with celiac have their own “little club,” now. “We have our own little inside jokes and use it as an excuse to sit together at restaurants, etc,” Michael shared.
A Celiac "Gift"
I always like to hear of something fun, unique, or amazing that folks get from their diagnosis. “I would say the greatest thing about my diagnosis truly is the incredible people that I have met,” Michael shared. “By making a documentary and podcast around celiac and gluten issues, I have met the most amazing, fascinating and resilient folks. Many have become good friends and I wouldn’t trade these relationships for anything!”
For those of us who spent decades with undiagnosed celiac, we can’t prevent the wonderment of how differently life would have been had we been gluten free during those years we spent sick. While Michael said he tries not to, he did share that, “sometimes I think that it would have been nice to have gotten my diagnosis earlier in life. What would my life have been like had I been diagnosed in my youth? Years of not feeling well and not having answers took a toll on me emotionally and psychologically. I try not to dwell on this and use it as fuel to move forward in a positive way, helping to raise awareness so others don’t have to wait so long for a diagnosis.”
And yes, there is a “gift” in Michael’s un-diagnosed years. His drive to help prevent those same un-diagnosed years from having to be someone else’s story is a gift to others. Thank you Michael!
*I appreciate his documentary SO MUCH that I offered a local screening in my area. And Michael came down from Chicago to attend our event. You can read about it HERE.
A Celiac Wish
Michael shared that he wishes that the psychological effects of celiac disease were easier to deal with. The impact of those un-diagnosed years, and then: the social situations, the continuing issues with questionable labels, and having to be aware always, once diagnosed. It all requires continued self-care, self-advocacy, and self-reflection.
Michael shared, “For me a lifetime of illness has created residual trauma, but with my daughter who was diagnosed at a very early age, I also see that she carries a significant amount of stress and anxiety. It is hard to tell at times if this stress is due to the stress of hyper-vigilance or other issues around celiac disease.”
If you listen to Michael and Cam’s Celiac Project Podcast: 2 Guys Talking Gluten Free, you know that these kinds of topics are often included. I frequently find myself responding to my phone as I listen, nodding my head or shouting out, “EXACTLY!” as though I’m actually part of the conversation. He and Cam cover areas that we can all relate to.
The health and energy Michael experiences now that he’s gluten free means he can enjoy activities like racquetball and working out. “I certainly feel better,” he said, “but I wish father time would slow down a bit.” (Me too!)
Enjoying Food: Michael shared that he enjoys going out for a nice steak dinner from time to time. As for pizza, their family makes “fantastic GF pizza using Chebe bread mix.” (What’s Chebe you ask?—This has been my go-to for pizza crust for over 19 years!)
He shared that eating in general has gotten easier. “Even in the time since I was first diagnosed 11 years ago, there has been a boom in great gluten free products that help both me and my daughter to feel “normal,” especially when it comes to foods like pizza or pasta.”
2020 Celiac Vision
I asked Michael what his Celiac Vision was for 2020.
“I hope that strides continue to be made in celiac research and labeling laws. We have been told for a while now that new treatments are coming soon. It finally does seem like we are getting closer. Maybe 2020 will be the breakthrough year?
“Personally I want to keep advocating and spread more awareness of celiac disease through my podcast and documentary. I have always thought that sharing our personal stories is the best way to educate and ultimately make positive change in the world.”
“When I finally got diagnosed I knew almost instantly that I wanted to do something to raise awareness about celiac disease, as I had suffered silently all my life not knowing what was wrong with me. I didn’t see any type of film on the subject, so as a filmmaker I felt that telling the story of what celiac disease really looks like would be beneficial not only for people suffering, but for their families and the public to understand the struggles we face daily.”
“The podcast started after I met my podcasting partner, Cam Weiner, at a local screening of the documentary. My goal with the podcast was to expand on the topics that I had started with the film.
“A podcast is the perfect format to do just that. We feature an array of unique guests on the show and it is amazing to be able to hear from other people who are making a positive impact to help support our community with celiac and gluten intolerance.
“On some episodes, Cam and I might examine specific topics related to having celiac disease or talk about new treatments and studies, while on lighter shows we spend time talking about positive things that bring us together as a community.”
Be sure to check out Michael’s website: The Celiac Project (which includes links to his Podcast and information about his film).
(You can also connect with @CeliacProject on Facebook, Twitter, and Instagram)