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Trusting Your Instincts

A Story About Celiac Disease

August 8, 2008

When you are a working parent, and your kids wake with a sniffle or a fever, you are immediately concerned. Unfortunately, a working parent goes from concern quickly to wondering who will call in sick to work and /or how many sick days do you have left? This is the story of how my daughter became diagnosed with Celiac Disease and my incredible working parent guilt for not having seen her symptoms more clearly.

I had organized a play date to meet at our house every Friday. Well, the truth is we would go from one home to another, but Fayth would nap for hours and usually through the play dates. I was surprised by how tired she was all the time, but I was thrilled that she still napped, since I was exhausted after such a long week of work.

Then Fayth’s body started changing. You wouldn’t have noticed, but I could. Her tummy was ballooned; yes, I know girls have the little balloon between the ages of 2-4, but I was sure this was not normal. I took her to the doctor later that month – I couldn’t get off work, contracts etc., but the doctor told me it was fine and that I had a problem with fat – maybe I had issues. I was so insulted but did not say a word. Good Catholic that I was – who questions a doctor?

One month later, Fayth started to vomit after every 4th meal. After 2 months, she started to vomit and have crazy bowel movements. They were stinky – really smelly and white. I went back to the doctor’s office, and I was told she had the stomach flu. OK. I was leaving for China that night.

Two months later, Fayth could no longer walk. She was like a doll – limp, not moving very much. I went back to the doctor’s office. She was screaming as the doctor pushed her belly in – he said this was normal. I was tearing, and I must have looked crazy. I was beside myself….She was “fine” – I started thinking it must be in my head. Maybe I need to take a break from work because clearly I was not thinking straight.

On Fayth’s 3rd birthday, she cried through the whole day. I told my husband, “I can’t take it anymore”. That night, he went online and discovered a disease called Celiac disease. We spoke online to a mom in a chat room who described every symptom. Fayth had become very pale, her skin was hanging, and her bones were protruding through her skin. I know it sounds crazy, but it is only in pictures much later that I was able to see this. That night I told my husband that the doctor’s office did not listen. I really believed that if a dad went in and lost his temper, it would make the difference. In this case, it did. Fayth was admitted to the Children’s Hospital, and the Chief of the Children’s Gastro took one look at her and knew that she had Celiac’s.

Fayth is my rainbow. Concerned that she may have had brain damage after one year of lost growth, we are pleased to say that she is growing quite well. Celiac is a challenge, although it gets easier every year.

Margaret, Montreal Quebec, Canada

Important Information about Celiac Disease

Unfortunately, this story is a typical occurrence when it comes to diagnosing Celiac Disease. This disorder disrupts the body’s ability to digest gluten products, thus causing damage to the small intestine and preventing the absorption of nutrients. The affected individual eventually becomes malnourished no matter how much food is consumed. That is why Fayth had a bloated stomach but was so pale and thin. Her parents were feeding her well, but she was literally starving to death.

There are many different symptoms of Celiac Disease. The most obvious ones occur in the digestive tract and include diarrhea, constipation, gas, bloating, weight loss or gain, and foul smelling stools. But Celiac Disease can also cause fatigue, joint pain, muscle cramps, mouth sores and tooth discoloration, an itchy rash, and in some cases, seizures. Then there are those people who show no symptoms at all.

Diagnosis is difficult because Celiac Disease is so similar to other illnesses, such as Irritable Bowel Syndrome, Crohn’s Disease, and Chronic Fatigue Syndrome. A blood test is needed to measure levels of Immunoglobulin A (IgA), anti-tissue transglutaminase (tTGA), and IgA anti-endomysium antibodies (AEA), and the doctor may recommend a bowel biopsy. Testing for antibodies in children under the age of 5 may be unreliable, but oftentimes Celiac Disease is an inherited trait.

The treatment for Celiac Disease is to follow a strict gluten-free diet, which can be difficult since gluten is found in so many foods. Once these foods are removed, the intestines can begin to heal, and the individual’s health should improve, although in extreme cases, it is possible that the intestines will never heal. Gluten must then be avoided for the rest of a person’s life in order to stay well. A gluten-free diet means eliminating foods made with wheat, rye, and barley. Luckily, there are many dietary options today in regular supermarkets, because this disease is so common. You will also find many choices on our website on our safe food list and restaurant policies pages.

Research from the National Digestive Diseases Information Clearinghouse (www.digestive.niddk.nih.gov)

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