I almost missed this Halloween with my 3 1/2 and 1 1/2 year old. I was so sick in bed, crying because all I wanted to do was help Olive with her elephant costume and walk from door to door with Wyn holding his hand, while laughing with Aaron about our son’s LL COOL J halloween costume. They drove down the drive way while I was curled in a ball, sick as a dog. But I couldn’t stand it. I jumped out of bed, (as you may be able to tell from my outfit shown above:) threw on shoes and my good ole Art’s hat and drove to Leland to find them and join them. I refused to let what ever was wrong with me take my memories away from me, take my time from me, take my life from me.
It is really hard to play four square with my kids when I feel like a turkey bone is stuck in the base of my throat. It is a challenge to smile with customers when I am so dizzy I almost fall down. It is not easy to explain a basketball offense to my middle schoolers when I am experiencing shortness of breath, nausea, and pain and numbing in half my body. It is almost impossible for me to muster up positivity and vigor in facing my day packed with meetings when I haven’t eaten due to no appetite and feeling shooting pulses to my head, chills to my body, and feeling like I may need to go to the emergency room because I just know I am not right…I know that something is seriously wrong.
I have been dealing with these scenarios and symptoms for at least 10 years. They most likely started even back in college, when I lived in Ireland and lived on bread, butter and Guinness. The heartburn. The fogginess (beyond the day-after-effects-of-several-pints). But after I had Olive, I started experiencing these episodes…heart racing, dizziness, sick to my stomach, shortness of breath, shakes and chills. It really freaked my out. So much so that one time I called Aaron home from work to take me to the Emergency Room. $3500 later, no diagnosis. Well, actually that is not true. The doctor asked Aaron if I was under a lot of stress. Many of you may know that I choose to be busy…and I have a lot of passions, between my family, my businesses, my love for outdoors, my volleyball and basketball teams, my music…so after Aaron semi-explained that to the doctor, he diagnosed me with stress and anxiety. Ugh. Really? I don’t feel stressed. I don’t feel anxiety. So down this road we went…trying to sort out why I was feeling this way.
1 in 133 people in the US have celiacs disease. 82% of that estimated 3 million people are not diagnosed. Now, I am not blaming the doctors. It is a difficult diagnosis to make and not until the last 5 years or so has it even been on any doctors radars. But it is real and it is extremely difficult to manage and sort. It has been a long road of this diagnosis from this doctor and that doctor, as well as my own self diagnosis… but it has landed on that I had severe vitamin D deficiency and celiac disease, which the two commonly go hand in hand, along with thyroid issues and other auto immune disorders.
What is celiacs disease? According to the Celiac Disease Foundation, “When people with celiac disease eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body. The only treatment currently for celiac disease is a strict, gluten-free diet. Most patients report symptom improvement within a few weeks, although intestinal healing may take several years.” If left untreated or undiagnosed, this auto immune disorder can lead to all sorts of health issues and even death. There is plenty of information on the web about how this can be hereditary, can involve deficiencies in vitamin D & B, as well as Iron. People can have a LONG list of different kinds of symptoms or no symptoms at all. The more I research about Celiac the more I am amazed at this disease.
This has changed my life, and Aaron, Olive and Wyn’s life. I have been eating gluten free for a year now, but am still learning at what works and doesn’t for me. In the beginning I thought I could touch it, be around it, and just wash hands and I was ok. This I have learned is not the case, and I have learned the hard way. And for now, as I heal and get good at being a healthy celiac, I don’t eat out (my favorite thing to do!), I am not eating dairy and staying clear of corn, and not drinking alcohol, using specific pans and cutting boards in my home, planning way ahead for my daily meals…along with many other lifestyle and eating changes. I will say though that I am still learning how to do this. How to be my best self as a celiac…how to feel like myself again.
I want to shout out to all those before me who have had to figure this out on their own. It is scary and debilitating. I am grateful to finally know what is wrong with me. I am grateful to be able to discover how to manage my own health with out having to medicate. I am grateful for everyday that I feel somewhat close to being healthy as I continue to figure out what foods work and don’t work for me. I have a deep compassion for those who have this disease, or any disease really and spend endless hours working to feel the very best they possibly can. One must choose themselves…and be diligent. I am practicing…I am learning, as I hope to do for the rest of my life. I have only touched on the journey that I have endured with this auto immune disorder and have only shared a glimpse of what gluten can do to people.
So…the great news for me is I can cook. I can cook vegan. I can cook gluten free. I know food…and I know that choosing healthy, local, organic, clean, unprocessed food is the best for my body, the earth, and all people. As we offer many gluten free options at the restaurant, it is impossible to grant celiacs a complete worry free meal at The Cafe because we do have gluten breads and other flours in house. However, our production facility is GLUTEN FREE!!!! All our products are gluten free (All hummus, sauces, veggie&black bean burgers, granola, salt your sweet, coffee cake mix&pancake mix, balsamic, redwine, and creamy tahini vinaigrettes!) I am proud to be involved with a company that cares about best selves in so very many different ways!
Cheers to your best self, feeling great, and learning what makes you thrive!