A grain of truth

Matthew was behaving differently. Up until now, our oldest son had been what seemed to be a normal, happy 5-year-old boy, but lately he had become noticeably grumpy with a sour attitude.

When teachers said “Good morning” to him, he would walk past them and not even acknowledge their greetings. To an outsider, his behavior appeared rude and as his parents, we felt it reflected poorly on our parenting skills. My husband, Jim, and I are both positive people and we just could not understand how our son was so negative and grumpy.

Our friends laughed and told us Matthew’s behavior was okay, but we struggled with how to best handle the situation. He seemed indifferent to any type of discipline or reward and that made it even more difficult. I am a nurse and I had a gut feeling that something just was not right — but I had no evidence to prove it.

Then he began to lose weight. He had been quite chubby and when we brought this to his pediatrician’s attention, he just attributed it to Matthew being very active. We had to agree that Matthew was very active, so we thought maybe the doctor was right. The problem was our son ate ravenously — he would eat three plates of spaghetti and meatballs for dinner. He would eat an entire box of macaroni and cheese and still be hungry. He sometimes complained of a stomachache, but we simply attributed it to the large amount of food he ate at each meal.

Matthew soon began to exhibit focus and attention problems in elementary school. He was eating well and growing, although he was smaller and thinner than other boys his age. It was a constant struggle to maintain his weight and we noticed his ribs were protruding when he would swim with friends.

He soon became pale and gaunt with dark circles under both eyes. When I look back at photos of him, it brings up deep emotions to see him so sick. At the time, whenever I spoke to his doctor, I had nothing defi nite to say. How could I say to the doctor, “I just feel something is wrong?”

I was afraid I would seem like a mom who wanted something physical to be wrong with her child just to justify his bad behavior.

In the fall of 2009, my sister, Mary Sue, was diagnosed with celiac disease. She had been to many doctors for many years and was fi nally diagnosed by a functional medicine practitioner. Functional medicine deals with discovering the underlying cause of disease by looking at things such as environmental concerns, the mind/body connection, and possible genetic factors.

I immediately began researching the disease. Celiac disease isn’t covered in great detail in nursing school, and all we were taught is that the disease’s symptoms are fatty stool, diarrhea, and abdominal pain. My sister had none of those symptoms.

We were also taught that the treatment is to eat only glutenfree foods.

To support my sister, I went out and bought several gluten-free items and, as a family, we tried them… we were sorely disappointed. Poor Aunt Mary Sue.

As I researched deeper, one day I suddenly thought, Matthew has celiac disease. I wasn’t prepared for that realization and hoped it was not true. I kept researching and soon became completely convinced it was true. We had tried the food… it was terrible. What would he eat?

I met with his pediatrician, told him what I had found and was met with skepticism. He asked if Matthew had diarrhea or abdominal pain and I told him no. But because I had worked closely with this doctor in the past, when I asked him to run a battery of

Common Misconceptions About Celiac Disease

Many health professionals were, and still are, taught that gastrointestinal symptoms such as stomach pain, bloating, diarrhea, and constipation are the most common presenting symptoms for celiac disease (CD). Doctors familiar with CD would argue that these symptoms are many times the exception and not the rule. To quote Dr. Peter Green, “Celiac disease can have varied modes of presentation, or can even be asymptomatic, making diagnosis more elusive. A timely diagnosis of CD is essential to treating or preventing its complications.” tests he supported me and sent Matthew to be tested. I found that doctors are basically taught the same things concerning celiac disease in medical school that nurses are taught in nursing school… very little.

CD is not a food allergy. It is an autoimmune disease inherited or triggered by a breakdown in the immune system.

Once you are a “celiac,” you are a celiac forever — no matter what age you were diagnosed. Years ago doctors thought that if you were diagnosed as a child you could outgrow it. Recent research has proven this is simply not the case.

Today, there are more options for gluten-free foods, and of all diseases to have, it truly is one of the easiest to deal with once you master the cure — a lifelong glutenfree diet.

Individuals should not start a gluten-free diet prior to confirming the diagnosis of celiac disease. It is important to confirm the diagnosis first, for you and second, because if you are truly celiac, there is a good chance someone else in your family is too (initially think children and parents).

Matthew tested positive for celiac disease. I was overjoyed to find a cause for his illness, but still very apprehensive concerning his future diet. Later, Matthew’s doctor told him that I knew more about celiac disease than he did. Although this may sound disappointing, it is often true that doctors aren’t fully educated on the intricacies of this disease. I applaud this doctor for recognizing my passion and listening to me in our time of need. A good physician will do that.

An endoscopy revealed that Matthew’s intestine, stomach, and esophagus were visibly flat and inflamed. He had no folds in his small intestine and the villi — the tiny hairlike projections that absorb nutrients — were shrunk and flattened. This was why our son was malnourished; his body could not absorb the nutrients in his food.

Celiac disease is an autoimmune disorder found in persons who are intolerant to the gluten protein found in the grains wheat, barley, rye, and oats. His body was attacking his small intestine and this reaction came from a protein that was in virtually everything we were eating: the spaghetti, macaroni, cereal, and sandwiches. It was everywhere.

Although initially a diagnosis of celiac disease can be devastating because you have to alter your diet so dramatically, there is light at the end of the tunnel. There are many foods you can still eat. Plus, there are gluten-free (g-free as we like to say) flours available to help you recreate your favorite foods. Matthew says that when he found one he liked, it tasted even better than the “gluten-y” version he once liked.

Today, Matthew is a healthy 14-year-old boy who stands 5 feet 2 inches tall and weighs 90 pounds. He has embraced the g-free diet better than we could ever have imagined. He looks so healthy and says he feels great. If you ask him, he will tell you that he grew up thinking that feeling “bad” was normal. He has been healed for three years now. His mood and attitude have slowly improved and he has a wonderful sense of humor.

I am so thankful for the doctor who diagnosed my sister’s problem; otherwise, Matthew might still be suffering today. If you, your child, or someone you know or love has problems similar to Matthew’s, ask to be tested for celiac disease as soon as possible. Our lives have changed… and so can yours.

If you have celiac disease and live in Lake County, you have support!

For more information email Gail Harrison at gailsgalley@ yahoo.com, Samantha Spiker at gfreemaven2b@ embarqmail.com, or call 610.248.3203.

Facts About Cd

1 percent of the world’s population has celiac disease. It is the most common genetic disorder of humankind.

1 in 133 Americans are believed to have celiac disease.

95 percent have yet to be diagnosed.

Classic symptoms taught in medical school:

• Abdominal cramping/gas

• Chronic diarrhea or constipation (or both)

• Steatorrhea (fatty stools)

• Anemia – unexplained, due to folic acid, B12, or iron deficiency (or all)

• Unexplained weight loss with large appetite

Symptoms in children:

• Developing slowly, not gaining weight, losing weight

• (Under 3-years-old): growth failure, diarrhea, projectile vomiting, bloating

• (Older): crankiness, irritability, difficulty concentrating, personality changes, poor memory

Other non-intestinal symptoms:

• Dental enamel defects, osteopenia/osteoporosis, fatigue/ weakness, infertility in both males and females, depression, mouth ulcers, bruising easily, delayed puberty, tingling/ numbness in hands or feet, migraines, malnutrition (can be under or overweight with this), weight loss or gain, joint pain, and seizures

• Effects if left untreated — vitamin and mineral deficiencies, pancreatic insufficiency, gall bladder malfunction, intestinal lymphomas and other gastrointestinal cancers

SOURCE: http://www.celiac.org/index.php?option=com_content&view=article&id=6&Itemid=25; http://www.celiacdiseasecenter.org/C_Do ctors/C03-Diagnosis.htm http://celiaccenter.ucsd.edu/aboutcdadults.shtml; http://www.celiaccenter.org/children.asp; For doctors who are interested free CME for Celiac Disease is available at: http://celiaccmecentral.com/