by Tim Hillebrant
This is becoming a common term nowadays. To many, it’s just a fad. It’s not uncommon to hear this celebrity or that sports sensation comment on how they don’t eat gluten. Except to a person with Celiacs disease, or a wheat allergy, eating gluten free is no fad. Its a necessary way of life.
I’m the first to admit that I’m no expert on this subject, but it is one I’m intimately acquainted with. My daughter has Celiacs disease, and has to be on a gluten free diet. We largely eat this way at home to support her with this.
The first question we’re often asked is, what is gluten? Why is being gluten free so important?
Gluten is a protein found within most grains. It is wheat gluten that a person with Celiacs is sensitive to. By comparison, a wheat allergy is when a person has an allergic reaction to wheat. The two are vastly different, as are the symptoms. According to the latest findings, a gluten allergy is a misnomer- something that doesn’t exist.
A person who has a wheat allergy and is exposed to wheat will have antihistamines produced to fight the allergic effect. Much like someone does with an allergy to peanuts, eggs, or shellfish. On the other hand, a person with Celiacs disease instead has no allergic response. The effect of the gluten is in the stomach and intestinal tract. Unlike an allergy, Celiacs disease can be much harder to detect.
For Celiacs, there are various tests that can be used to determine if one has the disease, or carries the gene for it. Reviewing the symptoms a person has with their doctor and testing how they feel when eating a regular diet vs gluten free and examining the results is another, and often used as a method to narrow down what possible maladies might affect a person. Then comes the most invasive method, the biopsy.
For my daughter, we tried both the blood tests and biopsy. When the laprascope was inserted into her stomach and intestinal tract, they found tiny ulcers that lined her esophageal,stomach, and intestinal walls, but the cilia were not lying flat as they expected to find. The blood tests came back that she was a carrier, but not necessarily one with the disease. We started on a gluten free diet, and continued with blood tests while other theories tried. Then, one day, after yet another series of tests were run, we got a phone call. Not only was she now a Celiacs patient, and it was only going to get more progressive as her life went on based on the genetic markers she has. We had to put her on a gluten free diet immediately. To support her, we largely eat gluten free too. It’s easier that way for us.
Within a week or two, we noticed a difference. The sores started to heal, her tummy stopped hurting so much, and she started putting on weight. We’d solved that problem only to encounter another. We all had to change our diet. She had to learn that all the things she liked and used to be able to eat weren’t allowed anymore. There’s the obvious things that kids like such as spaghetti, mac & cheese, chicken nuggets, cookies, crackers, cakes, and bread. But then there was the not so obvious too. We had to become label readers, and learn not only to watch for wheat, wheat starch or gluten, but also things like modified food starch, malt, malt flavoring, certain kinds of caramel coloring, non-certified oats, rye, and barley.
This lead us down the path of discovering just how many things have gluten in them, and how deeply it can be hidden. Nearly all soups on the store shelves have gluten, it’s added as a thickener. Gravies, gravy mixes, cornbread mixes (unless certified otherwise), some packaged meats like sausage, baloney, salami, and even certain brands of condiment sauces and dressings! Almost all pastas are excluded from the menu unless certified gluten free, Breakfast cereals are another big item, as are meal replacement drinks, as well as many candies, ice creams and other deserts. It should be noted that a gluten free diet, or more specifically eating gluten free alternatives to pasta, pasties, breads and the like is not an inexpensive option. So it made more sense for us financially to make the change as a family. This may not be true for everyone.
The home is not the only place where changes had to be made. We now have lists of safe verses not safe restaurants where my daughter can eat. Some restaurant chains are completely banned, others have only few items on the menu to choose from, or we have to make a special request to have items made gluten free. We tend to go to restaurants that have viable gluten free options, and staff who care enough to make sure the items are prepared properly. One interesting note is that when we’re dining out, the manager often comes to our table, usually with one or two of his servers, and we’re queried on the meal, and asked questions about my daughter’s diet and her restrictions. Its clear they’re taking their time to educate themselves by the questions they ask. In one local establishment, my daughter’s name appears on the menu. It’s a small hot dog place, open summers only, that has created a hot dog that’s on a gluten free bun with my daughter’s favorite toppings on it. They call it ‘The Sandy Dog’. Her picture appears on the menu next to it. It’s become a big seller for them.
This outlines just part of what it is to be on a gluten free diet. The challenges are many. We do things like take my daughter’s treats in for her on class birthdays so she can participate safely. Pot lucks are typically out, but we’ll sometimes take a meal to eat while others enjoy the other food provided. We often are asked what happens to my child when get has a gluten exposure. Simply put, it’s not fun for her, but the effects she experiences depend on the kind of exposure and how intensive it is.
A large portion of the Celiacs populace have such symptoms as intense stomach pain, diarrhea, or constipation. It affects the way food is digested and absorbed. Sometimes the effects can be much more severe, resulting in a trip to the hospital for pain killers and muscle relaxants. Thankfully we’ve had few of those trips.
The thing to remember or understand is that Celiacs is not in the mind of the diagnosed. It is a very real thing that causes very real problems for those who have it. Depending on the severity of the diagnosis, it’s not really possible to pick out what you can’t have like one takes anchovies off a pizza, as a celebrity chef intoned a few years ago. In this respect, its more like a true allergy. If you have it, even in small or tiny amounts from a source such as cross contamination, it can cause real problems.
If someone mentions they have Celiacs disease, it’s okay to ask questions. Knowledge is the key to understanding, and with understanding comes acceptance. Celiacs is not transmittable, except by genetics. You can’t catch it like you would a cold or flu. It’s just an auto-immune disease that affects many, and that number grows every day.
Sources and Resources:
Barbara Doherty; LNP; St. Luke’s Pediatric Gastroenterology
Regarding Gluten Free Lifestyles
http://www.livescience.com/39726-what-is-gluten.html (what is gluten, what does it do?)
Pediatric Celieacs Disease
Tim Hillebrant is an author/photographer from Southeast Idaho where he was born and raised. Currently living near Boise, Idaho, Tim is a husband, father, and passionate reader. His other interests include camping, fishing, cooking, movies, music, and trivia. Tim can also often be found helping out with Writers Carnival, where he serves as a member of the administrator’s community support team. You can see other examples of his work at; www.writerscarnival.ca