::Cook Healthier, Eat Healthier, Be Healthier
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 days on end. 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 IVs 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, of course not wanting anything serious. The first round of tests 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, lifelong, 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 they days where 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 lifestyle. A new diet and lifestyle she would have to life with forever.
Two Years Gluten Free
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 go-to grocery/health food stores), I can breathe again.
Since so much effort is put into what we eat, my family has 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 and in the middle of the rainy season in Seattle, and my daughter had a tan! I could not figure it out. 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.
My Middle Child’s Journey to Gluten Intolerance
My Middle Child’s story starts years ago – signs that something was not right started as early as preschool. Alyssa was a very sweet, robust, happy, easy going toddler, but she seemed to be sick all of the time with colds, strep throat, and bronchitis. The doctor at that point in time shrugged it off and said “well, she will have a stronger immune system when she grows up.”
Fast forward to around third grade when I started to think there was something not quite right – it was hard to pin down, but she just seemed "spacey." (There's a great medical term for you!) We would joke about how she “lives up in the stratosphere of the clouds,” and is always daydreaming. In some ways, we loved it because her creativity seemed to flow from the clouds and down to the earth in the form of her wonderful drawings and stories, and creative playtime. She was also a very easy child because she was so easily distracted by her own thoughts. But schoolwork (even at that young age) was starting to prove challenging. She would reverse letters in her spelling words, had sloppy handwriting and seemed to take longer to learn some basic things. She was also still suffering from a lot of minor colds, sore throats etc.
I remember thinking then about getting her tested…but for what? Things did not seem right, but they were not extreme enough to justify some kind of intervention. By this point in time, Alex was diagnosed with Celiac Disease. Of course we were all immediately tested for it and the Middle Child's test came back normal.
Fast forward to 5th grade and we have just spent the night at the Emergency Room (it was Valentine’s Day) because Alyssa had so much pain in her stomach that they thought it was her appendix. Four hours later following an MRI, and the diagnosis is extreme constipation. The prescribed treatment was two months on Miralax. Once again the test for Celiac Disease was negative.
Not satisfied with the Western Medicine's answer to take Miralax and “eat an apple a day,” I took Alyssa to a naturopath to see if we could find some more conclusive answers. The naturopath ran the ELISA screen which came back that the Middle Child is allergic to dairy, had a small reaction to gluten, and we ran a gene test which showed she has one of the Celiac genes.
The validity of the ELISA test is controversial, but I am also allergic to dairy, and dairy might contribute to constipation, so we took her off dairy. Dairy seems to have been the answer to some of the problems, as she does not suffer from constipation anymore and she does well on limited amounts of dairy.
Fast-forward again to middle of 6th grade when stomach issues seem under control, but we still have the recurring minor illnesses. She missed around 17 days of school in both 5th and 6th grades. But more pressing at this point is the living-in-the-clouds issue – lots of day dreaming, doodling, messy and disorganized. I was spending one to two hours a night “helping” her with her homework and organization. She actually is very bright. It was more the disorganization and the minor mistakes. For instance, in math she understood the concepts but would make small arithmatic errors that would result in the entire problem being wrong.
In my own heart, I knew I could not keep carrying her like I was, so I decided to back away and let her stand on her own feet with her school work. The result was abysmal – she literally brought home a string of grades in the 30th to 50th percentile. She also took the standardized test at school where she scored in the 99th percentile on vocabulary but the bottom 10% on math. That just didn't add up.
At that point the school recommended that we have her tested for learning disorders. I scheduled the testing and we looked around at some alternative schools, at the same time that little voice in the back of my head is whispering gluten. Yes, gluten, take her off the gluten.
When someone asks me what it is like when I eat gluten, I say it is like I am drunk. Literally I can’t focus, have a terrible time driving and the next day, looking back on my glutenized experience, it was like I was intoxicated for the day. In fact, I believe medical research is starting to back up my own anecdotal experience. So I thought “why not” – I couldn’t focus when I had gluten, so maybe that is her story too.
I take her off gluten – not really to the extent that my oldest daughter is gluten free, but close. Everything we eat at home is already GF. I start sending GF lunches to school, but I let things go when it came to birthday parties, etc. Remember she has consistently tested negative for celiac disease.
The results – a miraculous turn around in her “with-it-ness.” She literally landed back on earth – still occasionally day dreams and still doodles a ton, but she turned her grades around to being an A-B student, all of the spelling errors are gone, her handwriting has improved, she has an A in math (last year she had a C-). There are definitely still some small issues – she loses a lot of things, her room is still a mess – but I can see a new child emerging out of the clouds.
No Bad Days
We have been gluten free for more than eight years now. In some ways, the GF diet has become easier and easier as more and more products are available. I feel like we lead a better than “normal” life with no truly bad days. 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.
How is the Gluten Free Teen?
My oldest daughter who was diagnosed with CD back in 2005 is now my Gluten Free Teen. The hardest challenge at this point is her very busy 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 to the waiters about the fact that she has CD and the steps that need to be taken to keep her food free from cross-contamination. She grew a backbone and cut back a little on eating out and her levels are back to normal now.
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 has also suffered from a variety of issues such as chronic back pain, heart palpitations, high calcium levels, etc. It seems like every month we go back to the doctor for another blood draw that leads to something else not being quiet right and yet another round of testing.
I have had a lot of the same feelings this year that I had in 2005. The good news is Alex looks healthy and is growing and, despite the other issues, is pretty happy. The bad news is she has had doctor’s visits all the time and she once again has some underlining issues that we have yet to determine. I am once again praying for an answer that is manageable.
How is the Middle Child?
My Middle Child is completely GF and doing really well in 9th grade at an academically challenging college-prep school. Still somewhat disorganized (I think it is by choice) but she has become completely independent in her schoolwork. I was honestly pretty sad when we had to take her off gluten too – I know it seems silly since we are already so close to her being completely GF anyway. But I know how challenging it can be at times, and I was hoping to spare her from those challenges. Not wanting her to be disappointed in her food selections keeps me in the kitchen coming up with new GF recipes.
Who am I?
I am a Gluten Free mom and cook currently residing in the beautiful Pacific Northwest with my husband and three children. I am not a doctor or a nutritionist. I am just a mom who is raising her family and living gluten free, although it was not always so.
I spent my early years growing up in Iowa and Texas. I graduated from the University of Iowa with a degree in Political Science and then from the College of Law. After law school, I moved to Chicago where I married my husband of 20+ years. I practiced law for five years in Chicago, then spent two short years in Kansas City where our first daughter was born.
It was not long until a good job opportunity in Seattle presented itself to my husband and so we relocated to the Pacific Northwest. Our second daughter was born in Seattle, and then we adopted our son from Guatemala.
When our oldest daughter was diagnosed with celiac disease in 2005, we all went GF to support her new diet. After being on the GF diet for a week, I suddenly felt better than I had my entire life. Subsequent testing showed that I carry the gene for celiac disease. Not wanting to get back on gluten to have further testing, and realizing that regardless of the test results gluten made me feel awful, I have never been officially diagnosed with CD but I eat 100% GF. I underwent the ELISA testing which showed I have a diary allergy. Cutting all gluten and dairy out of my diet has given me a new life. I feel better than I ever have and people can’t believe that I'm in my late 40s.
I consider myself extremely fortunate to be able to stay at home and raise my kids. They are God's greatest blessings. When I am not strolling the aisles of Whole Foods looking for the latest and greatest gluten free item, I enjoy oil painting, exercising, boating with my family, skiing, reading, hiking and enjoying No More Bad Days!