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A while back, I wrote about my own challenges of living with gluten sensitivities. Last week, a chance encounter led me to Kelly LeDonni, whose personal experience was dramatic in every respect. Like so many others before them who have faced health challenges, they found a solution to their problem and shared it with others. I look forward to the day when I can benefit from her innovation as I eat out in my own city and travel across the country.

 

LeDonni Family-Disney AUG 5

It is my pleasure to introduce you to another disruptive woman, entrepreneur Kelly, with her husband Ben, twin girls Gianna (Gigi), Isabella (Bella) and Joseph (Joey, AKA GI-Joe).

Kelly, you and I have something in common: neither of us can eat gluten and remain healthy. In my own experience, it was five years, a building set of symptoms and a visit with a very forward-looking physician- Dr. Mark Hyman – to be diagnosed. I hear that’s more common than not. What was your experience?

Unfortunately, I did not have a forward thinking doctor but did have an adamant husband and a chance encounter with a woman whose advice changed our lives forever.  Let me explain.

Shortly after my husband and I married in 2005 we set out to start a family. Unfortunately, this wasn’t going as planned. Two miscarriages left us devastated.

To find refuge from stress, I turned to gardening. It was during this time that I coincidentally met a woman named Linda. In this random (or perhaps not-so-random) meeting, Linda shared some life-changing information.

Linda, too, had multiple miscarriages. In her medical work-ups nothing suggested the cause for her inability to carry a child to term. In her 40s, on her own, Linda decided to go on a strict gluten-free diet. After 6 months of avoiding gluten, Linda conceived her only child. She urged me to immediately get tested for Celiac Disease. She warned me not to put it off. Was this a sign from the universe, I wondered?

As a child, I never suffered from stomach problems. Apart from some mild bloating, I experienced only 2-3 stomach aches per year. Nothing about my physical condition screamed Celiac.  I didn’t even understand what it was. I even believed IBS and Celiac Disease were the same.  I didn’t think I’d be a perfect candidate for Celiac.

That mirrors my experience. I would have said I had a ‘cast iron’ stomach. Nothing bothered it when I was younger. My symptoms started quite late in life. Since then, I’ve heard there are 100 symptoms that trace their origins to gluten sensitivity. For me, the most obvious symptom was joint pain. But infertility? I’d not heard about that.

After a second miscarriage, it is standard for fertility doctors to conduct a series of tests (genetic and chromosomal) to assess the cause. When I asked my fertility doctor to test me for Celiac, she assured me there was no correlation between gluten sensitivity and infertility. I was hesitant to insist,  but my husband was adamant that I be tested. All my blood work was fine, except for one result: I was positive for Celiac Disease.

I was in shock.  I saw an Endocrinologist immediately, learned more, and after a stomach biopsy, Celiac  was confirmed. I went on a gluten-free diet the next day and the healing began…

What led you to create a new business to help folks like us? Of all the things you could have done, what made you pick food labeling?

I took my diet extremely seriously, with the ultimate goal of getting pregnant. It worked. After 8 months of being gluten-free diet, I was able to get pregnant and stay pregnant via IVF. I gave birth to twin girls.

Seeing how my diet influenced good health, I knew that even a minuscule crumb of gluten could cause cross contamination. For me, this meant violent vomiting 10 minutes (almost to the second) after unintentionally ingesting gluten.

Despite my vigilance and discipline, unintentional cross contamination continued to occur in my own kitchen, especially when visitors, friends, family members prepared food and ate there.

My husband Ben and I faced another complication. Our twins were 30 week preemies and unfortunately, one got Spinal Meningitis at the hospital through a PICC line.  She was on a ventilator and breathing tube for over a month; it ultimately scarred her throat.  A tracheotomy was recommended until her throat could heal and reconstruction airway surgery could be performed.  After 4 1/2 months in the NICU, we returned home with 24/7 nursing assistance. Even foods eaten by the home-care nurse could contaminate my kitchen and make me sick.

Monitoring my kitchen and keeping it gluten free was not easy. Even though the nurses were very careful  they were using our utensils. Their glutenous Mac-and-Cheese, for example, sometimes overflowed in our microwave.  To minimize cross contamination risks, I found it helpful to label all of my gluten free items using a sharpie.   But sharpie markers run and masking tape doesn’t always stay on containers.   After lots of labeling fears, an idea came to me – a gluten free labeling company!

refriglabels-- kelly aug 5I wanted Gluten Free Labels to help people like me who cannot eat gluten. The selection of gluten free labels, tags and flags provides added protection for kitchens and peace of mind for cooks and gluten-sensitive people.  Labels lower the risks of cross-contamination and raise awareness of Celiac Disease and gluten intolerance. I want to help people with gluten sensitivities live a more vibrant life – a life where they don’t have to constantly fret over the safety of their food, enjoy well-being, and aren’t sidelined by gluten attacks. I want them to be able to enjoy food and festivities and optimize their health at the same time!

Some people have other food sensitivities; have you considered branching out to help those with nut or dairy sensitivities?

Yes, we have thought about it since oftentimes people with gluten sensitivities often have other intolerances as well.  It is something we are willing to explore in the future but, for now, we want to keep our business focused on gluten-free branded labeling tools.  I genuinely want to help others like me with gluten sensitivities live better lives with our products.  Our dishwasher safe labels, oven safe tags and toothpick flags have helped me reduce my risk of getting sick by providing added protection to my own and other family-member’s kitchens. Perhaps one day soon I’ll be able to say the same thing about the restaurants I frequent.

If you achieve your dream at Gluten Free Labels, what will that mean for people in this country, and perhaps elsewhere that gluten causes poor health?

The world is already changing. Since I’ve been diagnosed, awareness has grown but I still can’t go to any restaurant or friend’s house and be sure I’m eating safely. I play Gluten Roulette every time I go out to eat and I don’t think it’s fair.  I want Gluten Free Labels to be available  for restaurants, school cafeterias and home kitchens to prevent cross contamination, make it easier for cooks and make it possible for Celiacs and others who are gluten sensitive to enjoy a meal without fear. Chefs are doing a better job of accommodating those with food sensitivities and I hope that anyone who entertains in their own home will do likewise. I want to make it easier for all of them.

The photo here is your family at Disney. How did you fare there?

The chefs at Disney were well aware of gluten sensitivities and were careful to prepare food that I could eat and I’m grateful for that. It would have been a wonderful extra bit of reassurance for me and my family, however, if my meals had come from the kitchen with a flag on it to reassure me that everyone who prepared and plated the food were aware of the need to avoid cross-contamination.

You’ve experienced the nightmares of Celiac. If you had a good dream to help compensate for all that, what would it be?

I am so grateful for the series of random events that led to that one extra test and my diagnosis. Though my diet and life changed drastically, my diagnosis gave me power over Celiac.  Awareness of my disease empowered me to create a healthier, happier life.

After I stopped eating gluten, I learned to find foods that would support my body and health. Sure, a journey without gluten has presented many challenges. Yet, the journey has also been one of positive transformation, enormous healing, and many blessings.

I’ve also had a third baby – a wonderful little boy.

Perhaps in some way, I’ve helped other women as well, since I am happy to report that the infertility office that monitored me then, now tests for Celiac Disease as a part of their standard testing.

Kelly, to that I’ll add, may you also help others like us in just the way you envision – lead healthier lives, enjoying meals outside of our own kitchens with friends and family, free of cross-contamination risks.

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