Living with Celiac Disease

There isn't a day that goes by that I do not find myself having to explain to someone about my kids food allergies, autism, Graves disease or celiac disease. I really don't expect people to understand about these things unless they are affected by them directly and for the most part I don't mind talking about any of it. What does surprise me is when I find myself having to explain one of these things to someone in the medical field.

Not long ago we had another emergency room visit with our youngest and I had to list his food allergies for them. Later, when she realized that I had a total of seven children, one of the nurses asked me about them. We talked about how two of my children had autism, we talked about food allergies and I listed every food that the kids were allergic to and mentioned that my youngest daughter had celiac disease. That's when I got the question.

"What is that?"

I do not expect to have to explain celiac disease to someone in the medical field unless they practice something like dentistry or ophthalmology. I should not have to explain to a doctor or nurse in the emergency room the nature of a disease and how to treat it, or in the case of celiac disease, what not to do for fear of aggravating it. They should have this information, but as I am finding out, a lot of them do not. In fact, outside of the field of endocrinology most doctors don't have any experience with celiac disease. Because of this it takes the average person eleven years to get diagnosed after the onset of symptoms.

Celiac disease is an inherited autoimmune disorder that affects multiple systems of the body. It is the most common genetic disorder, affecting 1 in 133 people, and also the most commonly misdiagnosed. Those, like my daughter, with celiac can not digest the protein gluten that is found in wheat, rye and barley. Eating gluten sets off an immune response that causes damage to the villi in the small intestines (the hair like projections that are responsible for absorbing nutrients from food).

My daughter just turned nine years old. For as long as I can remember I was always worried about her growth. She never grew. She never gained weight. She didn't talk until she was five years old. Our pediatrician wasn't worried because all of my children are on the small side but when she didn't start talking on time a hearing test was recommended, which came back normal. We also had her tested for autism since two of our other children had been recently diagnosed. She wasn't autistic. About every six months I would ask for a thyroid panel to be run. The pediatrician was always willing to humor me because of the genetic thyroid disorders on my husband's side of the family.

A half a dozen blood tests later, my daughters thyroid panel came back abnormal and further testing showed she had Graves disease (autoimmune hyperthyroidism). She was finally talking by this time but no one could understand her. About 95% of her words were indistinguishable. A visit to a speech therapist told us she had apraxia of speech, a neurological speech disorder where she did not have the motor planning and coordination to carry out the act of talking.

After several months on medication for her thyroid she still wasn't growing, gaining weight and there was no improvement in her speech despite working with her. She was almost eight years old and the doctor was still using an infant growth chart for her.

On one routine visit to the pediatric endocrinologist we got lucky and found out why she wasn't growing. The doctor had just returned from a two week seminar on autoimmune disorders and one of the lectures she sat through was on celiac disease in thyroid and diabetic patients. Having one autoimmune disorder increases your risk of having another, especially celiac disease. At the same time my daughter had started breaking out in an ugly itchy blistery rash. The doctor recognized it, thanks to the seminar, as Dermatitis Herpetiformis, a skin rash that often accompanies celiac disease.

There are only two ways to test for celiac disease. The first is a blood test. If the blood test comes back positive then a small bowel biopsy is usually done where samples of the small intestine lining are taken and studied under a microscope to look for damage. The endocrinologist ordered the blood test that came back negative, but based on the rash and how, in three months she went from a normal thyroid test to one that was indicative of someone having suffered from untreated Graves disease for some time, we put her on a gluten free diet to see how she did. I didn't want to subject her to the endoscope on top of blood tests every few months.

We were already dealing with a variety of food allergies so cutting out one more food wasn't that much of an issue. We were already good at avoiding corn, soy, eggs, milk, shellfish, fish and pork among others. Adding gluten to that list just excluded more food and limited the household diet even more. When you have a large family it's easier to totally avoid bringing into the house anything that anyone is allergic to than risk cross-contamination or someone accidentally eating something they shouldn't and ending up in the emergency room. Rice became a staple food in the house since we couldn't do bread products. Many seasonings were outlawed because wheat was used as an anti-caking agent. No longer did I regularly serve spaghetti, lasagna and pizza. Eating out was a challenge with food allergies, it became even more of a challenge with a child on a gluten free diet.

The first thing that I discovered was that her speech was fixing itself. No longer did I have to ask her three and four times to repeat herself. Three months later at the endocrinologists office we discovered she had gained about five pounds and grew three inches. Today, eight months later, she is on the growth chart where she is supposed to be. I am surprised at how much she has grown and how quickly.

Even though I see it every day it still amazes me that food, something we can not live without, can be so damaging and deadly. It's something that most people don't have to think about. There is no cure for celiac disease, the only thing that one can do is avoid anything with gluten for the span of their life.

My daughter did not experience any of the obvious symptoms of celiac disease that affect the digestive system such as bloating, gas, abdominal pain, diarrhea, constipation, joint pain, or fatigue. She was considered anemic, but that was blamed on her weight and failure to grow. Her symptoms were not recognized because they did not affect her digestive system and were attributed to other things. That was her failure to thrive and speech apraxia. Failure to thrive could have just as easily been her thyroid and the speech apraxia was just accepted and not questioned because of having autistic siblings and neurological disorders already being present in the family.

We got lucky that it was figured out before any lasting damage had been done. Leaving celiac disease untreated results in anemia, infertility problems, malnutrition, a variety of neurological problems due to nutrient deficiencies, osteoporosis, and a higher risk of gastro-intestinal cancers.

In my mind it's worth asking for a blood test to rule out celiac disease in any children who has been diagnosed as failing to thrive as well as anyone with auto-immune disorders and anyone diagnosed with IBS, colitis or other inflammatory bowel diseases. After all, 1 in 133 is a lot of people and the majority of those people are not diagnosed until well into their 50s after years of symptoms and misdiagnosis's.