I call myself the Gluten Free Mom and the information that I provide is valuable to anyone who is on a gluten free diet for whatever reasons. But for us, we are Gluten Free because my oldest daughter was diagnosed with Celiac Disease eight years ago.
For those of you who do not know, Celiac Disease is an autoimmune disorder that is triggered by gluten. Undiagnosed, it can have life threatening complications.
Although there have been great advances in the last several years, more still needs to be done. Up to 90% of those with Celiac Disease still do not know that they have it!
In addition to a lack of awareness, one of the reasons that Celiac Disease is hard to diagnose is because it can present with up to 300 different symptoms. And some people do not have any symptoms at all.
In light of this day, I thought I would share our story of how we were diagnosed with Celiac Disease.
No one ever forgets the day you find out your child has a genetic, life-long, life changing autoimmune disorder.
Alex, now a healthy, beautiful, vibrant 17 year old, was once a non-thriving, somewhat depressed, shy and often sick child. We really are not sure when it all started. She entered the world on Leap Day as a bubbly almost ten pound baby with hair you could almost braid. Looking back now, there seem to be several instances that were somewhat unusual; she was a colicky baby; the projectile vomiting in the ER in Iowa one Thanksgiving; the pot belly stomach; the not too infrequent "blahness" when other children were running, laughing, exploring and having fun. Whenever the subtle signs started, by the time Alex reached third grade her illness became more serious.
She was so addicted to Pepto Bismal that she would drink it like it was chocolate milk. The doctors attributed it to school-related stress. Sometimes the stomachaches were so bad she could not play in the games with her basketball team – these pains were attributed to nerves. She was frequently constipated – the doctor said she needed to pull her underwear all the way to her ankles when she went to the bathroom.
And then the flu-like symptoms began. At the beginning of third grade, every two months she would get what seemed like the flu and vomit for four to five days. We took her to the doctor who would run your standard blood tests. They would all come back normal, not even anemic. The doctors answered our questions with "it is just the flu; it has been a bad season." The almost ten pound baby was now so thin and dehydrated you could count her ribs and she had to have IV's to be rehydrated.
Finally, when she had the "flu" for five days in June, it was time to go to the doctor and not leave until we had some kind of an answer. They did stomach x-rays and ran additional blood tests. As an afterthought, as he was walking out the door, the doctor threw in a test for "celiac" - a word we would soon get to know very well.
We left to go on a summer trip but all I could do was pray for an easy answer. Not wanting anything serious. The first round of test from the blood work came back normal again, but I still had a nagging feeling that not all was well.
Then the call that answered the nagging feeling - one of the tests, something called celiac was positive. Silly what? How do you spell it? Autoimmune? Gluten what?
Thanks largely to the Internet; all of our questions were soon answered. Even while we waited through more tests that summer, more blood draws to test for absorption, the endoscopy at Children's Hospital . . . I did not want to believe it but deep down I knew that Alex had celiac disease. And finally we received the news (on the day that Alex also fell and broke her arm). The endoscopy was conclusive for celiac disease.
As a parent, my prayer every night was for my children to be healthy and happy. So how could it be that my daughter had a genetic, life long, life-changing disorder? Why did she have to live a life that would now be "different" and more difficult?
Yes, what parent would not be relieved to know why their child had been sick? Even better yet, the illness was completely treatable by something as natural as a change in diet; but oh, what a change.
It sounded simple enough; just eliminate gluten from your diet. While no longer eating wheat flour was challenging enough for an elementary-aged child, determining what we could eat in this gluten-laden world was a monstrous task. Especially back in 2005 before Gluten Free became a household name. Our transition to the gluten free life was before you could find gluten free pizza crust and even gluten free bread. Eating out at restaurants was soon to become a rarity for our family. It initially took hours of research to determine just what we could put on our plates for dinner. So much more than a diet change, going gluten free was a lifestyle change!
Even though I ached inside for a pizza delivery van on Friday night, I made the commitment to be as positive as possible on the outside so that Alex could accept her new diet and life style. A new diet and lifestyle she would have to life with forever.
I started this blog to help those on the Gluten Free diet and to help spread Awareness of Celiac Disease.
Help to spread Awareness by sharing your story in the comments below or on my Facebook page. Maybe someone will hear your story and realize they should get tested!