Life Events That Inspired Me To Create This Blog And A 12 Part Series About Celiac Disease And Gluten Intolerance

March 30, 2010 · Filed Under GF Stories 

Recently, another blogger asked me how my blog evolved and what inspired me to write the 12 Part Series about celiac disease and gluten intolerance. I sat down and re-lived my story through words. For me, it re-confirmed how much I have learned, how much I have grown as a nurse and as a person, and how much healthier my family and I are now. All of these positive changes are due to my increased awareness and the maintenance of a gluten-free diet.

My Story

The idea of a blog evolved over time. By the time I was diagnosed in 2004, I was quite ill. I had suffered for 5 years with intermittent IBS, difficult pregnancies, multiple other symptoms, and a variety of diagnosis. I also had 3 little girls, ages 10 months, 2 years, and 4 years. My memory of that time in my life is a bit of a blur. While sick, I tried to find a little time in the evenings once my children were in bed to do some research and one night I came across Celiac Disease. Unfortunately, this is a disease that I only had about 5 minutes of training with in University and it was presented as a childhood disease. The symptoms matched mine so I put myself on a gluten-free diet and felt better. Fortunately, I saw another specialist (I had seen a specialist and had a colonoscopy prior to this) 2 weeks after that and he tested me for CD and everything came back positive. My family was screened and my one daughter’s test came back positive as well.

Since my CD diagnosis, I have been so busy focusing on raising my children, being involved at their school, working at our local hospital and keeping up to date with celiac disease. The sad realization that approximately 97% of individuals with Celiac Disease remain undiagnosed inspired me to fulfill a mission to do my part to increase diagnosis. Working with a variety of patients at the hospital has allowed me to identify potential Celiacs in the hospital population. Many undiagnosed Celiacs have frequent doctors visits and are admitted to the hospital with a variety of diagnosis. I have requested Celiac screening for many patients and luckily the doctors have been receptive to my requests. During this time, I was also mapping out a potential book between 5-6am each morning, prior to my children waking up. Once my youngest entered grade 1, I knew I could begin writing this book (A 12 Part Series About CD And Gluten Intolerance) and I decided to put it on a blog so it would be available free to others globally. I have found my blog translated into a variety of languages on the internet which is very encouraging.

Many are suffering and quite likely many are dying globally due to undiagnosed Celiac Disease and gluten intolerance. This breaks my heart when I think of grandparents being lost, couples dealing with infertility or pregnancy issues (potentially leading to loss of a baby), mothers struggling with illness, children with cognitive disabilities that may affect their ability to achieve their potential in life, and many others who are suffering with a variety of misdiagnosis. This is what I visualized while I wrote the 12 Part Series. I shed tears a number of times just thinking of all the celiac faces. All of this unnecessary suffering could be prevented with early recognition, diagnosis, and the maintenance of a gluten-free diet.

The lack of awareness can be frustrating, but I believe in unimaginable possibilities and that everyone, with Celiac disease and gluten intolerance, can in their own way create change. We can and will get the 97% down to 0!

Shelly

Note: I recommend waiting until CD/gluten sensitivity testing is complete before initiating a gluten-free diet because it may create a false negative. Discuss this with your MD or specialist. Always review your symptoms with a Medical Doctor and your specialists before you make any changes.
If all your celiac tests are negative, then you may still have a gluten intolerance/sensitivity. Celiac disease is only one form of gluten intolerance. Discuss a trial gluten-free diet (and a referral with a registered dietition) with your doctor.

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