A Grandparent's Story of Celiac Disease

RENO, NV--(Marketwired - June 11, 2015) - [Editor's note: David Humphrey and Kulani Mahikoa are the owners of Kirkman Group. This story is written from Ms. Mahikoa's perspective.]

It can be a long and winding road that families take when their child has a chronic illness. Our family traveled that road in getting treatment for my grandsons, who both have celiac disease.

Tyler is 14, and Tanner is 12. They are healthy, strong, thriving in school and sports, have lots of friends, are good citizens and are mostly normal -- now. We've featured our family, our daughter Bleu, our son-in-law Ted and our grandsons on our masthead since we created the Kirkman Family Newsletter. Their story is typical of many of our customers' stories who have children with chronic illnesses about which still too little is known.

Tyler was about 5 when Bleu told us that she thought he had celiac disease. Tyler's pre-school classmate had been diagnosed with it. His mom noticed that Tyler had many of the same symptoms and gave Bleu a lot of information to read about the condition.

We knew something was wrong with Tyler from the time he was born. He had abnormal bowel movements; daily bouts of projectile vomiting and eating gave him red cheeks and ears, which were often accompanied by a rash. In spite of his health issues, he was a happy baby and, much like he is now, didn't complain. Even though we didn't know exactly what was wrong with Tyler we started giving him supplements to boost his immune system.

In spite of our work at Kirkman® with chronically ill kids and adults, we knew little about celiac disease. It became a mission to learn everything we could about it. We learned that celiac disease is an autoimmune disorder that can cause damage to the small intestine when gluten from wheat, barley or rye is eaten.

We were fortunate that our job afforded us good contacts in the medical field, however, at the time the diagnosis and treatment of celiac disease was a relatively new area of medical science. We took a trip to L.A. to talk to the director of the Celiac Disease Foundation, who generously shared her time and told us about the latest developments in the field. We learned that the first step in diagnosing Tyler would be a simple blood test but that the confirming procedure is an endoscopy.

The best pediatrician we knew in our area specialized in treating children with autism. He saw Tyler and Tanner and ran a lot of non-invasive blood chemistry tests, including the tTG-IgA test, which is a screening test for celiac disease. Both children tested sky-high in metals and were allergic to just about everything. Although they tested positive on the screening test, a conclusive diagnosis is arrived at by endoscopic biopsy, according to their doctor.

After the screening test, which indicated that both Tyler and Tanner were susceptible to celiac disease, Bleu started to cut out gluten from the children's diet. She admits that eating gluten free was a huge challenge. At that time, she noted, foods that were gluten free weren't as available as they are now.

In our area, the number of pediatric gastroenterologists was limited. Bleu made an appointment with one of them. Proud that her parents worked with children with autism, she mentioned that to the doctor who, after hearing this cancelled the appointment. Really. After that, Bleu could not get an appointment with any pediatric gastro doc in our city. Really!

About that time, a medical expert we knew well was in town to visit Kirkman®. We asked him to take a look at the boys' lab tests. We were shocked to hear from him that Tanner had more serious health issues than Tyler. He urged us to seek treatment for Tanner right away.

Tanner never had the obvious symptoms of illness that Tyler had. Unlike Tyler, whose symptoms occurred after almost every meal, Tanner only had occasional diarrhea and vomiting. Tanner's problems, we thought at the time, were behavioral. When he was a toddler he had frequent temper tantrums. Sometimes these would result in complete meltdowns where he uncontrollably punched and hit the parent closest to him -- usually his mom. Scariest for Ted and Bleu was that when his tantrum escalated he wasn't aware of his surroundings and sometimes would start running, often running out of the house and several times into the street. When my husband and I witnessed these meltdowns we would attempt to discipline him with stern words -- we thought it helped -- what did we know?

Unable to get the boys scoped in the area we lived, we decided to take Tanner to a medical center in Thailand that my husband and I went to for our own health issues. We liked the hospital because it practiced integrative medicine. Even without a prior appointment you could get a full physical, see a heart specialist, dentist, anti-aging doc, gastroenterologist and a plastic surgeon, if you wanted to, all in one day.

Tanner received both an endoscopy and a colonoscopy. The pediatric gastroenterologist that treated him said he had the worst case of impacted fecal matter that he had ever seen. They cleaned out his colon and confirmed that Tanner had celiac disease. Shortly after that, we took Tyler there to get his confirming diagnosis. Bleu and I also took the screening test and we both tested positive.

Tanner was a changed kid when he returned from Thailand. Bleu said that the most striking difference was that he was happy and smiling most of the time, something she had never seen with him before.

After the boys were diagnosed, Bleu became a "warrior mom" about taking gluten out of their diet. She learned from autism moms that only 100% compliance with a gluten free diet works -- 99% doesn't because its that one infraction that can send your child to the hospital. She also became a fanatic about building up their immune systems with supplements from Kirkman®. Individuals with celiac disease often have difficulty absorbing nutrients, so the daily vitamin regimen has become a ritual that the boys never miss.

Ted, the cook in the family, learned to make gluten free bread, cookies, cake and the all important gluten-free pizza. Their family has learned to plan around birthdays and holidays when sweet, wheat treats are plentiful at the boys' school and social events. When classmates have a birthday, Ted often bakes a gluten free cake or cupcakes that the boys can take with them to eat so they won't feel left out. Every Halloween, Bleu and Ted plan a route for the kids that includes neighbors they know who will hand out gluten free treats to the boys, provided by Bleu and Ted. An important activity for the family is grocery shopping, a time where they discover new gluten free foods and spend the time to read every label carefully to determine which foods fit their diet. Ted and Bleu also joined the boys in eating gluten free, so it has now become a family affair.

Now that the boys are older, Bleu said their challenge for the future is to have the kids "own" their diet. "They still want to eat what their friends eat but they know they can't," Bleu said. She believes the strongest motivation for them is knowledge about their disease so that they know why they need to be gluten free and why they take vitamins and probiotics. She added that another important motivator is that they know they get sick when they eat gluten and they don't like it.

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