In honor of my sweet girl and today's special mention as Celiac Disease Awareness Day, I am going a little off brand today and sharing our story. I say a little off brand because Celiac Disease actually effects 1 in 100 and many of those cases are undiagnosed. When my daughter was diagnosed at age 5, we were told that most people are symptomatic for 7-12 years before a diagnosis. This is insane to me because the initial diagnosis for us was done with a simple blood test. The diagnosis was then confirmed through an endoscopy with biopsy, which is a low-risk outpatient procedure.
What is Celiac Disease?
Celiac Disease is an auto-immune disorder, which can case a variety of symptoms. When someone with celiac disease eats gluten, which is protein found in wheat, barley, oats or rye, the body undergoes an immune reaction. This is not the same as an allergic reaction. With celiac disease the immune response occurs in wall of the small intestine, and specifically the villi which line the small intestine and are responsible for the absorption of nutrients as food passes from the stomach through the intestines. If these villi are damaged, they cease to be able to do their job, and the person with celiac disease ceases to get the nutrients they need to grow and live healthy lives.
People with celiac disease are 2x more likely to develop coronary heart disease and 4x more likely to develop a small bowl cancer. It is also associated with a host of other auto immune diseases like multiple sclerosis (MS), migraines, anemia, infertility and a host of other things as well including a short stature.
There is no cure for celiac disease, however it can be managed and the damage to the small intestine reduced, by the complete elimination of gluten from ones diet.
Our Story
After year of slow or no growth in our preschooler, she began complaining of random stomach aches. I passed them off to a stress tummy because she was starting kindergarden and I was pregnant with her little sister. The stomach aches did not abate and she was in the 20th% for heigh and weight by that point, so her doctor ordered a blood panel to test for celiac disease. The blood work indicated that yes she was having an immune response. We then consulted with a pediatric gastroenterologist and scheduled a endoscopy with biopsy which confirmed the suspected diagnosis.
There are a whole host of symptoms for celiac disease, some of which she has had, others not so much:
Failure to thrive
Short Stature
Brittle bones
Delayed growth/delayed puberty
Vomiting
Chronic diarrhea/constipation
Tummy aches
Fatigue
Irritability
Eczema/skin rashes
Damaged tooth enamel
Canker sores
Anemia
In general, the symptoms are associated with malnutrition because the body is unable to absorb the nutrients via the small intestine.
Living Gluten Free
Because we are a family of 6 and all the children were fairly little but fairly independent, we chose to go completely gluten free as a family for a while. Prior to doing so however all 1st degree relatives needed to be tested. This unfortunately revealed a host of other family members (cousins, aunts, grandparents) who had not yet been diagnosed with Celiac Disease. Thus our diagnosis changed the way we ate in our home, but also how family in 2 other homes ate as well.
Once all the testing was done, we set up our kitchen as a completely gluten free kitchen. Sauces that have soy-sauce for instance had to go (it is made with wheat). Breads and mixes and cereals and all the obvious stuff was given away as well. Rather than substituting with the less tasty GF breads right away (they are less tasty!), we tried to break a little carb addition and hope that our mouths and our minds would forget how good gluten breads tasted. I also found a whole host of new recipes to try out and add to the rotation rather than trying to adapt old favorites as gluten free. For instance instead of attempting to make my favorite chocolate chip cookies gf, I found a recipe for gf monster cookies and gf lemon cookies that are both amazing.
After a short while, I realized that having the entire family gf was not financially sensible. Gf substitutes are generally twice the price of the non-gf foods, and frequently are not as filling. I committed to cooking all our family meals as gf, but then also had gluten breads or cereals or baked goods for her non-gf big brothers and father. The boys were a little older so we made a deal. I would allow them to eat gluten in the house as long as they were careful not to cross contaminate. If she started with symptoms or her bloodwork showed gluten exposure we would go back to completely gluten free. As my daughter got older, she has began to really take responsibility for her diet and when she wants specific gf foods or baked goods she has figured out how to make them and make them well enough that even the boys want whatever she creates.
As the years went on, it became much easier to eat gluten free. With the popularity of the low-carb or no-carb diets, options like lettuce wraps reduced much of the stress. Packaging began labeling things GF making it easy to find the right foods. In the last few years some grocery stores even have gf sections.
If you are switching to a gluten free diet, there are 5 tips to help.
If you are not on a gluten free diet, and just reading this for your own edification, that is awesome! I will leave you one more though regarding how to support those around you who struggle with celiac disease. Please recognize that it is not a choice - it is a medically restrictive diet that is exhausting to maintain. It is frustrating not to have the pizza and cake at every single birthday party. It is frustrating to have to explain why you aren't eating when everyone else is digging in at a social gathering. It is anxiety producing to go to functions, weekend retreats, summer camps, friends houses and not know if you are going to be able to eat anything they provide. It is nerve wracking to travel and know that you have to pack all your own food because that special meal you requested may or may not be available, and that town may or may not have gluten free options, and your waiter may or may not have a clue what it means to be gluten free. Living with celiac disease is stressful and frustrating, but can be a beautiful way to grow in self-control and temperance. My daughter learned at an early age that just because something looks tasty and she is hungry and it is right in front of her, that doesn't mean she should eat it. This is the way she was created, beautifully and perfectly for a unique purpose, and this cross will help her to grow in holiness if she perseveres and accepts it. This is her journey and I am so lucky to be on it with her.
Thanks for stopping by!
