From time to time I would like to share some of the incredible emails that I receive. The theme of many of the recent emails that I have been getting is people sharing their struggles to get properly diagnosed. Many times, especially for those diagnosed prior to the last twenty years or so, there is little or no follow up from doctors. Many are told that they would “outgrow” this condition or are simply left to figure things out for themselves.
Kathy was good enough to share her incredible story with us:
“I am 54 years young and my story begins in 1962 as an infant. My heritage is Scottish/Irish. I do not have a memory of this time in my life, just the story from my mom. In those days, there was no blood test for Celiac. I was hospitalized at age one for a week. They thought I might have Cystic Fibrosis. I was finally diagnosed with Celiac as a result of a saliva test. My mom tells me that as soon as I was weaned, my symptoms began…constant crying, bloating, malnourished, horrible diaper poop.
She started making special bread and watching my diet, but it wasn’t long before she reverted to feeding me the same diet as the rest of the family. My mom had six children, had her hands full, and didn’t understand the permanent effects of Celiac.
During childhood, into my twenties and through 2 childbirths, I suffered from bloating, pain, constipation, exhaustion, and allergies.
About age 48, I met a parent at the preschool where I teach. She had just been diagnosed at age 40 and was telling me about her journey. I mentioned to her that my mom told me I used to have Celiac. This parent enlightened me to the fact that it doesn’t go away and I should seriously look into it.
I immediately researched the disease and started my gluten free lifestyle. Within 6 months I lost 30 pounds from the bloating, was pain free, had regular bowel movements, and no longer suffered from allergies.
It has now been about 6 years of living gluten free. My family is very supportive, but dining out can be challenging. I benefit from a few local San Francisco Bay Area gluten free restaurants and bakeries. Both of my daughters have been tested twice, with negative results.”
Thanks again to Kathy for sharing!
If you have a story that you think would help others please share it with us.