Meet Greta, an adorable 6 year old girl who is starting first grad this year. At age 15 months, Greta began to wake in the night with abdominal pain. This was also around the time that gluten was introduced into her diet in a substantial way. Greta's grandfather and first cousin were diagnosed with Celiac disease, so her mom did a trial of a gluten free diet. No more gluten - no more night time abdominal pain. At her 18 month check-up, Greta's doctor encouraged her parents to keep the gluten free diet. He didn't feel an endoscopy was worth the "trauma" and the wait to get into a pediatric gastroenterologist was over a year where they lived in Canada. Complicating the matter more, Greta lost all her verbal skills. She was diagnosed as Autistic at age 2 years, 2 months. She is now on a gluten free, casein free, soy and corn free diet and is thriving - and even beginning to talk again! She loves music and her big sister Audrey who always thinks to ask if food is safe for Greta.
I think I was glutened again the other day. ugh! Crabby and angry yesterday. Achy and reflective today. Maybe I'm overthinking - but probably not. I usually feel very blessed to have been diagnosed with celiac. I feel that having lived undiagnosed for a lifetime (40 years) and then experiencing the power of the change in my physical and mental health gave me the passion and the drive that hasn’t diminished in the thirteen years since my diagnosis. But sometimes I wonder what life would have been like had gluten not ever affected me. And more, I wonder what life would have been like had gluten not affected those in my life who we never knew and may never know have been (or possibly are now) being affected by gluten.
A person doesn’t have to be obviously ill to be affected by gluten. If I visited the doctor today and described what I feel , “achy all over” and “like I have a bit of a hangover” even though I didn’t drink yesterday, or the day before, or the day before that. And then if I proceeded to tell the doctor that I felt angry and hateful yesterday and a sense of overall crabbiness, he’d just tell me to rest or to exercise or to take this pill or that. What I feel with gluten is not something that sounds like “sick” – it is just “less than well.” But it affects my body and my mind in the way that a shoe that is one size too small affects the person wearing it, minute by minute, hour by hour, day by day. And I lived this way, minute by minute, hour by hour, day by day – and year by year – for forty years!
I made other people’s life miserable. I could be oh-so-nice. I was oh-so-shy. I was often oh-so-sick (asthma as a kid, IBS as an adult) – but not all the time. And I could be such-a-bitch! And I wonder what my impact with loved ones would be if I wasn’t that crabby person, if I wasn’t that person who got into such heavy arguments with my mom, with my sister, with my first husband, with my kids. And I wonder how emotions and an underlying sense of “not feeling the best” affected other family members. Because honestly, what I feel was something I often thought was “normal.” A person can’t know there are colors if they live a life in black and white. So how many other family members were living (are living) with that constant thorn in their side? I do believe both my parents were gluten intolerant at a minimum. My mom didn’t live long enough to see me diagnosed properly with celiac. My dad did go gluten free eventually and benefitted positively for a short period of time.
Ahhhh…. I feel so much sadness when I think about the family I have but miss terribly. I miss the bond I thought we once had. I feel “not worth their effort” all too often, and certainly much more strongly when I am under the influence (meaning “glutened”, lol). You see, it doesn’t matter how old a person gets - family is family, and family is missed when they aren’t around.
I was the first in my family to be diagnosed with celiac. I've often felt others don't want to dare to think they have “it.” My son is gluten intolerant, and I thank God I discovered this while he was young enough and under my “control” for him to discover what it feels like to be gluten free. My dad was gluten intolerant. My sister is gluten intolerant, and gluten free, as is one niece. And more recently another niece diagnosed with celiac. So how many others in my immediate or extended family are now, or will be in the future, affected by gluten? I have 3 other siblings and 2 other children and a multitude of other relatives. But unfortunately, too often, if a doctor doesn't diagnose something (celiac) it (gluten) isn't thought to be an issue. Some (or maybe many) might have learned to live with that thorn in their side, when a change in diet could make that sun shine oh-so-much brighter on their lives too. Maybe I’m wrong. Maybe no one else is under the “influence of gluten” – but . . . ???? Who knows.
Our lives and our choices don’t stay isolated within ourselves. I am just blessed to have had that experience of knowing the difference in how I used to impact others and how I can impact others now. But it is so damn discouraging sometimes to know that others in this world are living under a cloud that could so easily be removed. Because when one person lives under a cloud, those they live with, those that are around them, can't help but to get rained on.
(Over 80% with celiac are still not yet diagnosed!)
To those I rained on (and still rain on from time to time) – I am sorry.
And more---to those who are helped through my words and through my gluten clouds---I am grateful for that rain.
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Our inspirational journey also includes the frightening reality that hospital food isn't always safe for those who need to be gluten free.
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