Celiac disease and "Textbook" answers

Recently, our son was diagnosed with celiac disease. Here is the textbook definition:

"Celiac disease is a serious autoimmune disorder that can occur in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide. Two and one-half million Americans are undiagnosed and are at risk for long-term health complications."

"When people with celiac disease eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body."

Bottom line for victims like my son?

These are the things that can happen:
 • Anemia, usually resulting from iron deficiency
 • Loss of bone density (osteoporosis) or softening of bone (osteomalacia)
 • Itchy, blistery skin rash (dermatitis herpetiformis)
 • Damage to dental enamel
 • Mouth ulcers
 • Headaches and fatigue
 • Nervous system injury, including numbness and tingling in the feet and hands, possible problems with balance, and cognitive impairment
 • Joint pain
 • Reduced functioning of the spleen (hyposplenism)
 • Acid reflux and heartburn

Textbook.

It’s not a textbook example when three years ago our fifth-grade son complained of stomach aches and cramps and nothing helped.

It is not textbook when for three years we took him to doctors who missed the symptoms of this incurable disease.

It is not textbook when people think that "he’ll get over it in time."

It is not textbook people say "he’s just a picky eater."

It is not textbook when people called him lazy and faking his sickness.

It’s not textbook when your son is so depressed and fatigued that he just doesn’t want to live.

It is not textbook people think that gluten-free is a fad.

It is not textbook that people think that it’s just gluten intolerance, not a real disease, or you can take a pill.

It is not textbook that it took three years to get an answer because my wife insisted to get a different blood test.

Since my strokes, I’m convinced that doctors are well intentioned yet "educated guessors."
My doctors missed the obvious signs of my upcoming strokes caused by my Fibromuscular dysplasia.

The good news is we caught this early. The only cure is a strict gluten-free diet.

The bad news is practical ramifications of this diagnosis are sobering.

How do you tell your 13-year-old son that he can’t have Pizza or run to McDonald’s with his buddies? What can he eat at a birthday party? What about family get-togethers like Thanksgiving and Christmas?

Will friends and family understand or get too impatient with this new life changing event?

We have been reading a lot about food preparation and restaurants since this diagnosis.

Here is a short excerpt that is very helpful: "Home, Safe Home -- Help Clients With Celiac Disease Avoid Gluten Contamination in the Kitchen" by Lindsey Getz

"Although celiac disease is manageable and treatable, a diagnosis can overwhelm patients. After all, the condition necessitates significant lifestyle changes.

"Simply buying gluten-free products is not enough; patients with celiac disease must practice safe food handling, preparation, and storage in their homes. While maintaining a safe kitchen involves a lot of responsibility, dietitians can arm their patients with helpful tips to make the task seem less daunting."

"Flawless Food Preparation and Handling: The gluten-free market has come a long way. Today there are more products available than ever before, and people with celiac disease are realizing they can enjoy many of their favorite foods again."

"But keeping food truly safe means avoiding cross-contamination with gluten-containing products, something that’s not always easy to do in a busy home kitchen."

In addition, there’s a huge cost involved. Three years of expensive doctor visits with no answers. Finally getting an answer through very expensive procedure in the hospital. There will be the follow up and expensive visits with specialists. Finally, cost of gluten free foods are exorbitant.

And honestly, as my son said, "Dad! Most of this food taste like shit."


My son had to go up too just because of my strokes. And now he has to deal with this issue. When he starts to date he will have to explain to his date that he has a disease. "I’m sorry I cannot eat that! It is basically poison to me." How many scenarios will have to endure throughout his whole life?

Today he just want to go to McDonald’s. He said he doesn’t care if he dies.

I know this is new. Emotions are raw and real. I know he’s 13 years old. I know people will just say "he’ll get over it."

And he will.

Where is the textbook for me to help my son?