It sounds trite to say that life is a journey, but that is exactly what it is to me. I view my life as a series of journeys to different points of understanding. One of my current journeys is one that reaches to the core of who were are as human beings, how we deal with food.
Six years ago, a beautiful baby boy came into my life. He was six pounds and some odd ounces with blond hair and blue eyes. Robert became sick and wasn’t gaining weight. A photograph of him as a baby sitting in a serving bowl on the kitchen table with a look of resignation on his infant face spoke volumes to me. For Robbie, food was not friendly and not life sustaining. He is still smaller than most kids his age.
I spoke to my sister often and she described the terrible things the little guy was going through. Robbie was suffering daily and finally the doctor put him on a very restricted diet. Nearly everything was taken out only to be reintroduced one food at a time.
Food…the very same food, I ate as a baby, was hurting my nephew and as it turns out his mother. My sister, his beautiful mother, discovered that she was a Celiac. The diagnosis seemed to be the answer to so many things, especially, why my sister suffered so many illnesses and headaches. It also came at the same time that she discovered another truth, she had Asperger’s Syndrome.
Another diagnosis and more questions answered. But, that is her story… her journey. Robbie was also diagnosed as a Celiac. Thus my family was introduced to the world of gluten free cooking. Words like cross-contaminated and dextrose became common place in our homes.
Three years down the line, I ordered a pizza. My Friday night treat and the next day, I felt like well…like poop. It wasn’t the first Saturday; I spent feeling like I had been run over by my own stomach. Fatigue had been an issue for me for years. Weeks would go by when it seemed that I couldn’t get enough sleep.
Pasta, my ideal comfort food, only made me feel worse. The fatigue didn’t go away and for the first time I was also feeling bloated. My symptoms were very similar to my Celiac friends. So I decided to go without wheat for a week and then a month.
I felt better that first week and in the next month, I was still tired, but there was a remarkable change in my energy level. Still I was reluctant to get tested for Celiac Disease since my sister had told me it would involve having a colonoscopy. So I delayed and delayed getting tested and doing my best to avoid the dreaded gluten.
Three, almost four years, later, I finally got tested (a nice painless blood test) and discovered that I am not a Celiac. I was sure that it would come out positive and strangely I was disappointed. I thought when getting the test that it would validate my choice to eat gluten free. Then I looked up gluten intolerance and discovered that this fit me.
When I spoke to my doctor, he was non-committal on the issue and basically said that if not eating wheat or gluten made me feel better than do it. I compare it to the old joke about the man who went to the doctor and said “Doc, when I do this, it hurts.” The doctor responded then “Don’t do that!!”
It hurts to eat gluten so I don’t do it. All of this brings me to the door step of my current journey: living a gluten-free. I live just fine without wheat in my diet. I will be sharing some of the tasty treats I now enjoy in my gluten free blog; which will coming out soon.
8 thoughts on “What no Wheat? How do you live?”
I was the child who looked as though she could have been in a concentration camp. No one had ever heard of wheat allergies or gluten intolerance (there is a differance) when I was a child. I was just the “stubborn” little girl who “picked ” at her food. My grandmother realized that it was wheat I was avoiding. This just made her more creative. She’d break up pieces of bread and put it into other foods. My natural instincts were very keen. I could soon detect flour in gravey. Years went by. As an adult I finally convinced myself that everyone else was right and I needed to somehow incorporate wheat into my diet. Ha! It took a while but the hives finally attacked me where they knew it would work……my mouth! A trip to the ER……epynepherine (sp?) shot ……allergist…..and eeh gads…..dr says if she had put the scratch on my back it would have killed me!!! Celiac disease?….perhaps……wheat allergy definitely. Gluten free choices on today’s market are a mixed blessing. It’s great to have choices……yes, pizza is good……..however, now there are more ways to shovel those calories in.
Toni, I love your attitude and view of life. You are a blessing to have as a friend.
I have a friend who’s sone was just recently diagnosed with a wheat allergy. She was dispairing about how she was ever going to manage to feed a growing boy without wheat. But having seen your posts and pictures over time on FB about all the yummy food you manage to eat I was able to reassure her some. And I helped her to feel more confident that this isn’t devasting news. I’m grateful to you for that. When you get the gluten free blog going, I’ll be sure to send her a link!
Thank you, Sabrina… I do love food and haven’t really suffered from the lack of wheat. I think your friend will find that the food that he is getting now will actually benefit more from the food he does get. The blog should be up within the week.
I saw your post when you commented on my blog! My daughter isn’t Celiac, she’s on the celiac diet for autism. No wheat (or gluten of any kind) and no dairy. It can be done! She’s been on it for almost six years. SHE is the one who won’t eat any of the forbidden foods because she knows it will make her feel sick.
My favorite part of it is telling people, “She can’t eat bread,” because most of the time someone will respond, “Can she have toast?”
I get those types of questions as well. I find sometimes I end up being their source for information on the allergy. My nephew, Robbie, has autism and he doesn’t the same thing with his diet.
i too am a celiac but have Dermatities herpetiformis – both contact and digestion types. So if I use Oil of Olay body wash, which has gluten in it, my arms are covered with hundreds of fever blisters. Somehow my system absorbed that stuff and then it took months to heal.
So i don’t eat anything with gluten and I am equally careful with what i put in my skin – special toothpaste, no licking envelopes to seal them and specialty products to ensure that my skin stays healthy.
it’s a pain in the butt but totally worth it, since i feel so much better when i’m totally clean.
thanks for the blog – it’s great information. Celiac’s disease is one of the fastest growing undiagnosed syndromes around.
Thank you for response. I didn’t actually know about Oil of Olay, but this explains why it never cleared up my skin. I have in the past made a body scrub using olive oil and sea salt. It feels a little weird, but I don’t break out.