We have started a Gluten Free - Just Like Me Photo Album on my Facebook page. Send me a photo and a brief story of your gluten free life and I will add it to the album. You can message me on my Facebook page or email me at firstname.lastname@example.org.
Reading these stories and seeing these faces has been very heart-warming for me. A few have even brought tears to my eyes.
Here is our story:
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 beginning of 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. 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 is 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.
Two years later and our lives are redesigned by our new gluten free lifestyle. Even though hours are still spent searching for safe food and even more hours are spent in the aisles of my local grocery stores (I say stores because anyone who cooks gluten free has at least three grocery/health food stores they shop at), I can breathe again.
Since so much effort is put into what we eat, we have decided to all travel down the gluten free path that leads to a healthier diet made up of more fresh everything. Our family is definitely closer together - family dinners are the norm, not a novelty at our house.
The best reward of all - that running, laughing, exploring, fun-loving child that was hidden beneath the illness in my wonderful daughter's inner soul has fully and physically emerged!
One of the first changes noticed was the color of Alex's skin. She had always been so pale. Two months into the diet in the middle of the rainy season in Seattle, my daughter had a tan! I could not figure out where it came from. We were shocked at realizing it was because she was healing. Then came the spontaneous dancing, the little skip across the family room for no apparent reason. Finally bigger changes with five inches of growth in a year and becoming the point guard on her basketball team!
And so in the end, the realization came that God had answered my prayers. God took me on a different path than expected but I did finally have the happy and healthy child that I prayed for every night.
The Silver Lining … in Celiac Disease
My daughter and I share a mutual love of cooking that has been one of the greatest blessings… yes blessings… of celiac disease.
On a quiet afternoon or evening when we have a few hours between soccer games and guitar lessons, you can often find us in the kitchen, the TV turned on to the Food Network, hammering out the ingredients for our latest and greatest gluten free, dairy free food concoction. No matter what our mood when we start, at the end of it we both fall blissfully (yet somewhat exhausted from all the finger licking) onto the stools at the kitchen counter to sample our latest endeavor.
Of course the end result is almost always a reward in and of itself. Like the “Better than the Original Gluten Free, Casein Free Samoa's” We have had a few flops as well, such as the tomato soup that tasted more like thick and hearty pasta sauce. In fact, we ended up using it as pasta sauce.
Even more than the food, it’s the time we spend together doing something we both love that is the greatest reward. This is when my daughter shares her feelings about her friends, her dream of visiting Venice, her struggles with how hard it is to eat gluten free when her friends are eating birthday cake, or even worse, Krispy Kreme donuts. But this is also when she learns how long to sauté onions or whip up a gluten free treat that will please any picky eaters. These are skills that will last a lifetime. And this is the silver lining in celiac disease; The bond that my daughter and I have sealed in the kitchen.
My daughter says she wants to grow up and study cooking in Paris and be a chef. She is only eleven so there are many years for her life dreams to change. But one thing is certain – I know she will never forget the hours we spend in the kitchen, flour flying, creating our latest and greatest gluten free meals.
We have been gluten free for almost eight years now and the GF diet has become easier and easier as more and more products are available. I feel like we lead an almost better than “normal” life. Of course my one wish would be for all of this to go away, but I can also be thankful for the blessings that have come from the gluten free diet. I have no doubt that my entire family is closer together and healthier because of our diet.
The hardest challenge at this point is my very social teenagers social life – kids like to eat out! She actually had a relapse the first part of 2012 from eating out and not speaking up enough. The blood levels are back to normal now and she has learned to always tell the waiter that she has celiac disease and is strictly gluten free.
She is also facing some health challenges. She is missing eight adult teeth so she has had to undergo a series of oral surgeries with more to come. She also still faces some health struggles. Alex has suffered from chronic back pain for over a year now. It was initially believed to be a volleyball injury so she started down the path of physical and sports therapy. After hours of physical therapy, several x-rays and a few MRIs, the doctors decided there were no structural “bone” issues and referred her to a counselor and biofeedback. (Have you ever noticed how doctors automatically attribute teenage girl pain to stress?) Finding no relief in that direction, they did a pelvic scan to check the organs (we have strong renal cell carcinoma in my family) and now she is in Rheumatology. They are drawing more blood and trying Celebrex, and she goes back to her Celiac Doctor next week.
I have had a lot of the same feelings this year that I had in 2005. The good news is she looks healthy and is growing and, despite the pain, is pretty happy. The bad news is she has had at least one doctor’s visit a week and she once again has some underlining illness that we are yet to detect and it is causing Alex a lot pain. I am once again praying for an answer that is manageable.