It's a G-Free Life
Everybody's talking about it—gluten-free (GF) foods and the G-F diet—but the most surprising buzz surrounds those living with special needs. It seems both children and adults who've said so long to the protein (found in wheat, oats, rye and barley) are feeling better, acting better and leading more productive, happier lives without it.
Simply put, gluten acts as a poison to certain people's delicate digestive systems, keeping them from utilizing their food for nourishment. This condition can take the form of gluten intolerance, gluten sensitivity or the more severe celiac disease (CD). According to a 2009 Mayo Clinic study, as many as one in 100 people are now affected, making it four times more common than it was just 50 years ago. Researchers are now examining why the occurrence of gluten sensitivity is rising—some studies point at better diagnosis and wider awareness, while others are examining the changes in our diets.
But if you find yourself among those, who, increasingly, can't tolerate gluten, the news isn't really all that unpalatable. Abstaining for life may sound harsh, but easy-to-get ingredients and menus help provide a fairly smooth transition to the diet. And, unlike with many other diagnoses, rather than leading to thousands of spent dollars on prescription medications, "celiacs" can often reestablish health with just an overhaul of their pantry and refrigerator.
My G-F Life
Ten years ago, when I began having debilitating migraine headaches and muscle fatigue, I suspected gluten was the culprit. Although most people wouldn't look to such a common American staple as the cause of symptoms like these, I already had a basic understanding of the problems gluten could cause and recognized some of the lesser-known signs. Considered autoimmune disorders, CD and gluten sensitivity are genetic disorders that run in my family. But nearly a quarter of a century ago, when my mother first realized gluten was making her and my brother ill, CD was still highly misunderstood by the medical community and was infrequently diagnosed…unless a person was showing extreme signs of malnourishment.
Diane McConnell, North Richland Hills mom to James, 12, is one of the founders of the North Texas Gluten Intolerance Group (NTGIG) and teaches a monthly "Celiac 101" class for newly diagnosed patients. James was the first in the McConnell family to obtain a CD diagnosis about eight years ago, but Diane also tested positive for CD and her husband's results indicated gluten intolerance.
But, Diane says, "Since James did not suffer from 'textbook' symptoms, we spent years visiting doctors who didn't think to look for celiac. He had severe constipation and intolerance to dairy products. His immune system was always fighting some sort of cold and he was never well. James also presented with emotional issues like severe separation anxiety and tantrums that he didn't seem to be in control of," says McConnell.
Even today, physicians might recognize the classic symptoms of CD, which include diarrhea, bloating, weight loss, anemia, chronic fatigue, weakness, bone pain and muscle cramps, but may not be aware that CD frequently presents with other symptoms—some that do not involve the small intestine.
According to Dr. Nicholas Ogunmola, a pediatric gastroenterologist with Fort Worth's Cook Children's Medical Center, "Celiac disease can [also] present with…growth and pubertal delay, anemia, rashes and intracranial calcifications."
Yet other symptoms include: "constipation…premature osteoporosis. Children may exhibit behavioral, learning or concentration problems, irritability…dental enamel defects or projectile vomiting…rheumatoid conditions, migraine headaches, nerve problems such as tingling of hands, difficulty walking or other conditions that are unexplained and/or do not respond to usual treatment," according to the North Texas Gluten Intolerance Group. "Overweight persons may also have undiagnosed celiac disease."
If you recognize any of the symptoms above, CD can be confirmed with fairly simple tests. Dr. Seshagiri Rao, a board-certified allergist in Plano, explains, "[Serologic] tests measure an abnormal immune response in individuals." And when indicated, gastroenterologists may confirm the suspected diagnosis through an intestinal biopsy.
The Down syndrome/autism connection
In 2003, a National Institute of Health study found that a whopping 23 percent of children with Down syndrome also had positive blood work for CD.
These statistics don't surprise Teresa Koch, a Fort Worth advocate for those living with Down syndrome. After reading that CD is much more common in the Down-syndrome population, her daughter's pediatrician, Dr. Frank McGehee decided to run a CD screen on all his patients with Down syndrome. This is how her daughter Rebecca, 8, was diagnosed, says Koch.
These days, Koch says she encourages fellow parents in the Down-syndrome support group she attends to get their kids tested on a regular basis, "especially if they're having health issues," she emphasizes.
Plano parents Stephanie and Gary Crow had their 11-year-old son, Collin, tested. He, too, received a dual diagnosis of CD and Down syndrome. They put him on the G-F diet and Crow now admits, "I did not realize how washed out [Collin] was looking until he started to get better." Within eight months, Collin grew four inches and gained 22 pounds and he no longer had diarrhea, his skin was not as dry and, she says, he was not as tired as he used to be.
Beyond Down syndrome, many children who fall on the autism spectrum also benefit from G-F diets. Because individuals with autism-spectrum disorders (ASD) suffer from intestinal dysbiosis, a bacterial/microbial imbalance, these kids are also responding amazingly well to gluten-free and casein-free diets. (Casein is the protein found in mild and dairy products, not to be confused with lactose, which is the sugar found in milk.)
Rao tells us why: "Often in children with an ASD diagnosis, their dysbiotic gut breaks down gluten in a way that causes opium-like derivatives to be produced. These derivatives can trigger behavioral issues and learning deficits," he explains.
Plano mom Nagla Moussa, whose 22-year-old son, Alvin has ASD, agrees the diet can work wonders. She says, "A few weeks into taking away casein and gluten, Alvin's chronic diarrhea began resolving, he stopped having bowel movements six to seven times a day and was no longer cramping or bloating." And she says other positive side effects began to show; he seemed more aware and cooperated more, which made it possible to do many other interventions that were not working well previously because of his behaviors. "We also noticed his seizures slowed down, to the point we were able (under his doctor's supervision) to wean him off of the seizure medication," she says. "This was nothing short of a miracle for us." Alvin has now been GFCF for 15 years.
Tammy Snively, McKinney mom of Jake, 6, also swears by the GF diet (her son also has ASD). "One of the best interventions we did…was going on the GFCF diet," she says. "He didn't cry, tantrum, open and close doors and tiptoe as much as he had just days before. He felt better. [And] when he started feeling better, his awareness increased, which opened the door for new learning."
But it's not just those with Down syndrome and ASD disorders who are benefiting from a G-F diet. According to the Juvenile Diabetes Research Foundation International, CD occurs in one out of every 10 people with type-1 diabetes. And, while there isn't a great deal of evidence in medical studies yet, many people suffering from various chronic inflammatory conditions are finding great relief from pain and other symptoms through the F-G diet; this can be true for people living with severe conditions like chronic fatigue syndrome, multiple sclerosis, Crohn's disease, fibromyalgia and irritable bowel syndrome to less taxing, yet still serious conditions like Psoriasis, a variety of other skin rashes and even basic allergies.
Although it may seem over-whelming in the beginning, adapting your family meal plan to abstain from gluten or both gluten and casein is completely doable. To begin with, Koch encourages parents to utilize the Internet and a favorite bookstore. "I have found a lot of information in books and on the Web; www.celiac.com is one of my favorite resources. We also subscribe to Gluten-Free Living and Living Without magazines, as well as the Journal of Gluten Sensitivity," she details.
Then, "Educate your family," says Jennifer Cinquepalmi, Dallas mom of three and author of The Complete Book of Gluten-Free Cooking and Gluten-Free Deliciously. Discussing the diet with your kids, in an age-appropriate fashion, can be powerful. Teach, in general, about the condition and, more specifically, highlight the benefits for each of your children as individuals. "Secondly, feed them so they are content. My children enjoy pancakes, waffles, a variety of yeast breads, fabulous cakes, gooey brownies, tasty side dishes, varied main dishes and on and on." She contends that all of her kids have, "felt the difference in their energy, mental clarity and stamina [after abstaining from gluten-rich foods]."
Utilize your local health food stores and markets, as these stores often have staff members who are well versed in the art of G-F shopping and cooking. And sign up for classes offered by area experts like McConnell and Cinquepalmi. Market Street locations throughout the area offer cooking classes with Cinquepalmi throughout the year (www.marketstreetunited.com/culinaryschedule).
By connecting with knowledgeable, supportive people, you and your family can dive right in.
"A support group makes a world of difference, not just in learning [how to implement the diet], but emotionally, too," says McConnell. That's why she says, she cofounded the NTGIG.
In the end, going G-F may be an adjustment, but for many families raising children with special needs, the results are worth it.Sidebar 1: Symptoms of Gluten Intolerance
DFW area, 972/442-9328
Lone Star Celiac GIG
DFW area, LonestarGIG@dfwceliac.org
North Texas GIG
DFW area, 817/929-9227
Sidebar 3: Where to find gluten-free ingredients*
Fort Worth, 817/989-4700
Family Health Market
Newflower Farmers Market
Sprouts Farmers Market
Cedar Hill, 972/637-5108
Flower Mound, 972/874-7380
Sunflower Shoppe Natural Foods
Fort Worth, 817/738-9051
Whole Foods Market
Highland Park, 214/520-7993
*Be sure to ask at the Customer Service desk for guidance on your first GF trip!