At the beginning of my journey, I remember feeling alone and scared. I was in constant pain, and desperately seeking answers. During my knowledge quest, I was fortunate enough to connect with many people like myself. They too were hurting and searching for solutions. Together, we were able to sort out the health puzzles we had on our hands. Many late nights were spent scouring medical journals looking for clues, trying to make sense of it.
In 2001 and 2002, information on gluten was not readily available as it is today. Whenever a nugget was found, it was brought back and shared with the group. We gathered around to discuss, analyze and question the collection of findings. Like the primates in the opening sequence of 2001: A Space Odyssey, we slowly learned and evolved, and regained our health.
After negative intestinal biopsies, extensive researching and months of dietary trials, I joined the gluten-free community in May 2003. Since that time, I have not looked back.
All the new learning meant unlearning many of the lifelong behaviors and habits I had acquired. Abandoning gluten goes far beyond a “simple” diet change. I realized just how deeply food permeates every aspect of our lives. Two and a half million years ago, our uni-browed Paleolithic ancestors lived in small groups where food was communally hunted, gathered and shared. Their diet was gluten-free and primarily grain-free until 10,000 years ago when they discovered agriculture. To this day our social interactions rely heavily on food as a catalyst or gathering agent. Transforming those primal instincts can be difficult.
I remember being so lost, confused and frustrated trying to find safe food in the grocery stores. Keep in mind, label reading was difficult because allergen labeling wasn't required yet. I relied upon whole or minimally processed foods with short ingredient lists. It was excellent advice given to me then, and it's some of the best advice I can offer today.
Help and support come in many different ways. It may not come from the people closest to us, our family and friends. This fact elevates the importance of a support group; it can be the difference between success and failure.
In 2008, with the blessing of my wife, Peggy, we started a local support group. If we could pull one person out of the darkness into the light, it’d all be worth it. In 2011, our group would become Gluten Intolerance Group of East Central Wisconsin. At the time, The Gluten Intolerance Group was the only national support agency that recognized Non-Celiac Gluten Sensitivity.
GIG allows our little group to reach beyond the four walls of our meeting room, beyond our town, beyond Wisconsin. This association enables us to do things nationally and globally - something that would be hard to do on our own.
The process of making a difficult lifestyle change comes from within; it’s all about the attitude. As a leader, I try to help others focus on the many benefits of their new life. Positive mental attitude, knowledge, and commitment are the keys to success. Through my own research and through my experience with the group, I have discovered that the more one knows about their condition and their food, the healthier they will be.
Nutritionist and author, Melissa Diane Smith, talks about “the gift of gluten-free.” All those years ago when I was lying on the living room floor in the fetal position, I could not have imagined what was in store for me - besides death. I gave up gluten, the gifts I have received in return is beyond measure.
I realized that I was given an opportunity to use my skills and talents to help others. I discovered talents I didn't know I had. The biggest gem unearthed in me was a passion and a purpose - something that was lacking in my life previously.
I was shown how to use my gift to help others. It was a profound awakening. I know in my heart of hearts, the path that I have traveled is not one I would have chosen. That being said, I cannot imagine doing anything different with my life.
It is my calling to educate, motivate, and advocate.
That was the position I found myself in 2000/2001. It all started gradually, an upset stomach here, some foot pain there, a little more burping and belching than usual. Nothing big, until it got big. When my normally cheerful, energetic, quick to laugh husband was replaced by a pale, thin, ill man I hardly recognized. A person who sat listlessly staring into space not wanting to see friends or attend family functions for no other reason than "I just don't feel good”.
As the complaints increased there was much "encouragement" to see the doctor and get these thing "checked out". The assumption was that a test or two would pinpoint the problem and a medication would be prescribed and everything would be fine.
That’s not what happened. A test or two turned into multiple tests and multiple doctors which did not find the root of the problem. Medications were prescribed that only helped a little or not at all. No real answers were to be found. In the meantime Al continued to get sicker, I felt even more helpless.
I worked in healthcare for God's sake, someone, somewhere must have some idea, something that would make him well again. With increasing frustration and fear, I often found myself crying in the shower so he wouldn't know how afraid I was. I wondered if he were dying as I was just standing by helplessly, watching.
Fast forward to March 2003 where we find ourselves on a white sandy beach surrounded by the beautiful turquoise blue water of Jamaica. When my unwell husband requested a vacation to somewhere warm, I, his loving and dutiful wife made it happen! That March was my turning point.
Al had been doing a lot of research and discovery about this thing called gluten and it's effects on some people. While the discoveries he was sharing with me were very counter intuitive; [read what do you mean crackers and toast can give you a belly ache?] they oddly sounded like him and his symptoms. His gastro doctor was willing to take intestinal biopsies for celiac disease, however the samples did not show intestinal damage. Finding non-celiac gluten sensitivity presented with similar symptoms without intestinal damage, Al started experimenting with a “gluten-free” diet but, the first real evidence I saw happened in Jamaica.
Before the week ended I had my husband back! The energetic guy who was actually looking for a pickup volleyball game! Some may say it was the magic of Jamaica and I won't disagree, but a large part of that magic was the naturally gluten-free diet that he ate.
That week "sealed the deal" for me. Any time that Al would question himself about whether being gluten-free was really the root of the problem or not, my mind went back to that week and the health it brought.
“Do not look back. You are not going that way."When Al started down the gluten-free path, I knew I would walk it with him. There was no question. If this is what needed to happen for him to be well, this is what we would do. I would help him in any way I could, we were a team. We both come from families where whining, fussing or complaining didn't get you very far; you took what was given to you and made the best of it. That's how we took on this challenge. I am not saying it was easy and we did everything perfectly....it wasn't and we didn't.
There were plenty of times the groceries I brought home went to the local food pantry because l had made the wrong choices; gluten-free labeling laws didn’t exist then. Full loaves of bread and bowls of pasta were chucked into the garbage because they were so bad Al couldn't eat them. The first batch of beautiful gluten-free cookies came out of the oven only to disintegrate into dust when I tried to take them off the pan! We learned from those experiences and tried to make things better the next time. We didn’t give up. I think the key word is we, I think that Al has been just as much of a support to me as I have been to him. He has always encouraged my efforts and has been appreciative of them.
As the gluten-free lifestyle became our new normal, it became more important to me that it be “normal”. When I was asked by family and friends about the diet, I always responded there are more things he can have than things he can't.
It also became my goal to show people that gluten-free was not synonymous with taste-free. I have always enjoyed cooking and baking for people. Nothing gives me more pleasure than to have someone eat and enjoy what I have made and then ask me to make it again. Slowly, I continued transforming all Al's favorite gluten-full treats to gluten-free treats. It became my passion to learn new ways of baking so others wouldn’t feel left-out. And then to be able to pass on what I had learned to others just added to my joy. It has become my way of supporting and helping others on their gluten-free journey. In my humble opinion no one, gluten-free or not should ever go without a good cookie or piece of cake!
Branch Snack Coordinator and Helper Extraordinaire