A Gluten Free Send Off To College

A Gluten-Free Send Off To College First Class: Celiac Disease 101 By Linda Kaplan-Schwab, MHA

This is not a story about a child’s death. Or cancer. Or losing a limb or an organ. This is about a sudden change in a way of life. An unexpected, and unwelcome journey during a pivotal time in a family’s life, and how together, a mother, daughter and son faced a unique challenge as the kids left for college… Pizza. Beer. The freshman 15….proudly earned from pancake breakfasts and all you can eat dining commons…these are just a few of the things that many high school seniors look forward to when they start thinking about going away to college in the fall… My daughter Amanda had come to me last March not feeling well – she was frequently catching colds and was often exhausted. Knowing that she was very busy and under a tremendous amount of pressure waiting for college acceptance letters, I thought she was just severely stressed. I encouraged her to explore some stress relievers like yoga, more sleep, good nutrition, and more exercise.

Two weeks passed, and after diligently trying to relax, she wasn’t improving. I took her to the doctor for a checkup. A physical exam did not indicate anything worth noting, however preliminary blood work indicated she was anemic. The doctor recommended adding iron supplements to her diet and following up in a month if necessary. By mid April, there was little sign of improvement and we were referred to a specialist for additional testing. After a comprehensive exam, the physician ordered a new round of blood tests to rule out [or in] any autoimmune disorders. A week later, we received the lab results…Amanda had been diagnosed with Celiac Disease. Celiac Disease? What is Celiac Disease? She’s been as healthy as a horse (aside from the anemia…), a vegetarian, athlete, honor student, and full of life. From out of nowhere she has Celiac Disease? This just didn’t make sense.

FAST FACTS: Coeliac disease (pronounced /ˈsiːli.æk/; spelled Celiac Disease in North America) is an autoimmune disorder of the small intestine that occurs in genetically predisposed people of all ages from middle infancy onward. Also known as celiac sprue or gluten-sensitive enteropathy – CD results in damage to the lining of the small intestine when foods with gluten are eaten. Glutens are a form of protein found in some grains – specifically wheat, rye, barley, and some oats. The damage to the intestine makes it hard for the body to absorb nutrients, especially fat, calcium, iron, and folate. http://en.wikipedia.org/wiki/Coeliac_disease Nearly 1 out of every 133 Americans suffer from Celiac Disease, according to a new study by the University of Maryland Center for Celiac Research in Baltimore. The research indicates that Celiac Disease is twice as common as Crohn’s disease, ulceric colitis and cystic fibrosis combined. http://medschool.umaryland.edu/celiac/faq.asp FAST FACT: There is no standardization (yet) in current tests for Celiac Disease. A number of tests, sometimes collectively referred to as the Celiac Blood Panel or Cascade, will aid the physician in diagnosis. The tests may include, but are not limited to: Serologic Tests 1. EMA (Immunoglobulin A anti-endomysium antibodies) 2. AGA (IgA anti-gliadin antibodies) Some people do not produce IgA antibodies. 3. DGP (Deamidated gliadin peptide antibody) 4. tTGA (IgA anti-tissue transglutaminase) Tolerance or Measure of Digestion/Absorption Tests 1. Lactose tolerance test 2. D-Xylose test. http://www.csaceliacs.org/celiac_diagnosis.php

An endoscopy and biopsy of her small intestine in mid-May confirmed the blood work results. Simply, the villi in her small intestine, the finger-like projectiles that absorb nutrients, were flat and non-functioning…meaning her body wasn’t absorbing the nutrients from the foods she was eating (hello anemia). The pictures were quite impressive – her small intestines were so smooth, it looked like a Zamboni® machine had just cleaned the ice during halftime of a hockey game. The only way to heal her small intestine and to ward off long-term, life-threatening affects of Celiac Disease (CD), was to be on a life-long diet free of gluten – which is a type of protein that exists in wheat, barley, and rye among other carbohydrates. According to the University of Maryland Medical School, untreated or uncared for CD can lead to problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), lymphoma and gynecological disorders. FAST FACT: Normally, the body’s immune system is designed to protect it from foreign invaders. When people with Celiac Disease eat foods containing gluten, their immune system forms antibodies to gluten that then attack the intestinal lining. This causes inflammation in the intestines and damages the villi, the hair-like structures on the lining of the small intestine. Nutrients from food are absorbed by the villi. If the villi are damaged, the person cannot absorb nutrients and ends up malnourished, no matter how much he or she eats. http://my.clevelandclinic.org/disorders/celiac_disease/hic_celiac_disease.aspx

Once we wiped the tears away, and said goodbye to the pizza parties that her upcoming college life at UC Irvine ‘promised’, we began her gluten-free (GF) education and way of life. Her health was far too important to ignore the results of the test, and fortunately she understood the ramifications of ignoring what was upon her. Never to be one to sit on the sidelines, I promised Amanda that I would eat GF with her until she went to college in the fall, so she wouldn’t feel alone and so I, as the head chef in the household, would have a clear sense of what was involved. But after a moment of pause – I kicked myself….WHAT am I doing? I LOVE bread, and pasta, and crackers, and bagels…in fact, I’ve never really met a carbohydrate I didn’t like. Heavy sigh….I made her a promise and I couldn’t chicken out now….. That night, my husband and I went out to dinner with friends. We were seated at a lovely table in a quaint Italian restaurant. The waiter smiled as he placed the giant basket of fresh rolls in front of me….’omg’ as my daughter would say…I can’t eat that. My heart melted right along with the bowl of butter next to the bread. After 10 minutes of reviewing the menu and the pasta, pizza, gnocchi, and lasagna offerings…and everything else I couldn’t eat…I ended up ordering a piece of fish with veggies, and a salad with oil & vinegar dressing…no croutons..and an extra glass of wine. Why on earth did I sign up for this? Over the next few days as we evaluated our food choices, things started to become clear. Avoid, or find GF substitutes for our usual bread, pasta, crackers, cookies, tortillas, bagels, pizza, bread crumbs, cereal, cake, chewy bars, pancakes, waffles, etc. Barley was not a regular part of her diet, nor was rye, so that was easy. At first, it seemed rather straightforward…many/most bread-type products that had been a life-long staple, were suddenly a threat. However, the more we learned about GF choices, the more we were now reading every ingredient label on every product we bought. Gluten, or wheat, shows up in the strangest places and often under unusual or indirect ways. The actual list is quite lengthy, but here’s a sample of some items and/or ingredients that are not allowed or may* contain gluten: Baking powder* Barley Bouillon Cubes* Brewer’s Yeast Canned Soup* Caramel coloring/flavoring Couscous Dextrin Farina Gravy* Malt Marinades* Matzo Miso Modified Food Starch Oats (some…check the label) Orzo Playdough (!) Rye Salad dressing/mayo-type dressings* Seasoned seaweed* Smoke Flavoring* Soy Sauce – most soy sauces are made with wheat Spelt (dinkel, faro) Spices* Tamari sauce* Tempeh* Teriyaki Sauce – teriyaki sauce is made with soy sauce – and most are not GF Toothpaste* Vitamins* Wheat Additionally, we needed to be aware of cross-contamination issues…just because a label says “gluten-free ingredients” doesn’t mean they are safe. They must also be processed in a gluten-free environment to be considered acceptable. Consider the bag of potato chips that is made with potatoes, oil, and salt…seems ok, right? But it was processed in a facility that also processes wheat, so we need to pass on that product. FAST FACT: We depend on food labels to provide facts about the foods we buy, but everyone on a gluten-free diet knows that food labels do not always disclose the presence of gluten. A law passed in 2004, called The Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA), tries to address this problem — and others faced by people with food allergies — by instituting sweeping changes to the way foods are labeled in the United States. In the first phase of FALCPA, which took effect in 2006, manufacturers of any food product that contains milk, eggs, tree nuts, peanuts, shellfish, soy and wheat were instructed to clearly disclose, in plain English, the presence of these allergens on the ingredients label. Congress limited the FALCPA labeling requirements to these 8 allergens because they account for more than 90% of all food allergies in the United States. The second phase of FALCPA — the part most important to people who shop for gluten-free food — has not yet been implemented. FALCPA ordered the Food and Drug Administration (FDA) to develop an official definition of the term “gluten-free” for the purpose of labeling gluten-free foods, along with a rule for manufacturers on how and when to use a “gluten-free” label. The FDA published its “proposed rule” for gluten-free labeling in 2006. While the final rule may be different in some respects from the proposed rule, one thing is sure: It will have an enormous impact on the ease or difficulty with which shoppers can identify gluten-free products. The final rule was to have been issued in August 2008, but it will be delayed as the FDA seeks comments from the food manufacturing industry and consumers. According to the proposed rule, a “gluten-free” label would mean that a food does not contain any of the following: • An ingredient that is a prohibited grain • An ingredient derived from a prohibited grain that has not been processed to remove gluten • An ingredient derived from a prohibited grain that has been processed to remove gluten, if 20 parts per million (ppm) or more gluten will remain in the food • 20 ppm or more gluten The FDA explains on its website that it chose this level because according to published scientific research, current analytic technology can reliably and consistently detect gluten in food at levels of 20 ppm. Source: http://celiacdisease.about.com/od/glutenfreefoodshopping/a/FALCPA.htm Throughout the summer, Amanda and I cooked and learned our way into new habits. I made a GF-only shelf in the pantry. We bought a new toaster that was only to be used for GF bread, learned to keep utensils and pots/pans separate from other foods on the stove while cooking gluten-containing products, and importantly, made sure to wipe down counter tops and cutting boards with hot water and soap after every use. We are not a meat and potatoes family. In fact, a meat and potatoes eater would do really well on a GF diet! And, gluten-free does not necessarily mean low calorie….there are plenty of GF fattening foods available. Amanda and I have always erred on the side of healthier feasts. She’s a vegetarian and I’m a pescatarian (I’ll eat fish, but no meat or poultry). So, we were naturally open to exploring new foods such as teff-based tortillas, GF veggie burgers, quinoa, rice noodles, and brown rice pasta – which, by the way, really only tastes good if you drown it in marinara sauce and parmesan cheese. We sampled a variety of breads and substituted our favorite cereals and crackers for new ones. Some were surprisingly great (THANK GOODNESS FOR UDI’S THE ONLY GF BREAD WORTH EATING! YUM!), others were acceptable, and some were simply awful. Some breads crumbled instantly while others were so hard you could use them as a lethal weapon. We tried frozen entrees and experimented with new homemade recipes. We discovered brands that were GF friendly while others were clear dangers. We checked out some GF companies on Facebook (and got some pretty decent samples sent to us…), and made some pretty darn good banana bread! The homemade veggie enchiladas (check the label on the canned sauce) with corn tortillas were also pretty good. Mostly, we learned that as in life, that the secret to success was limited to our imagination and our attitude. By focusing on what we could eat, instead of what we couldn’t eat, it made the whole process much more positive and interesting. Living GF can also be expensive if you’re not careful – especially when the rest of your family doesn’t need to eat specialty foods. Making trips to Whole Foods, Sprouts, Mother’s, Pacific Ranch Market, and Gelson’s to find the best selections of GF ready-made products, made for an expensive summer [Note: most grocers are open to product suggestions…just ask!]. And in these tough economic times – after two month
s of eating GF with Amanda, I decided that while my intentions of supporting her were honorable, loving, and educational, it was hard on our budget. So I opted out of a gluten-free lifestyle….or so I thought. In August, Amanda and I contacted our doctors. I wanted her to Celiac levels tested before she left for college to see if eating GF for 4 months had made a difference. And I had my upcoming annual mammogram, and just out of curiosity, I asked to for the Celiac blood test for myself. I mean, I couldn’t possibly have Celiac Disease right? I don’t have ANY symptoms! But what if? FAST FACT: Symptoms of Celiac Disease vary among sufferers and may include: • Digestive problems (abdominal bloating, pain, gas, diarrhea, pale stools, and weight loss). • A severe skin rash called dermatitis herpetiformis. • Iron deficiency anemia (low blood count). • Musculoskeletal problems (muscle cramps, joint and bone pain). • Growth problems and failure to thrive (in children). • Seizures. • Tingling sensation in the legs (caused by nerve damage and low calcium). • Aphthous ulcers (sores in the mouth). • Missed menstrual periods. If you suffer from any of these symptoms, discuss the possibility of Celiac Disease or a gluten intolerance/allergy with your physician. Source: http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease Amanda’s test results dropped significantly. Her tTG-IgA dropped from 100 to 28 (goal is < 5), her Endomysial Ab Titer ratio dropped from 1:320 to 1:40 (goal is less than 1:5), and she was no longer anemic. Removing gluten from her diet had clearly made a profound impact on her health in a very short amount of time. My results? Sure enough – the results came in as positive. Positive. For Celiac Disease. With NO symptoms. How is that possible? The only answer that made sense to me is that I am lucky. Lucky that I don’t have any symptoms, lucky that I found out now rather than later, lucky that I understand what to do, lucky that I don’t need pills, or surgery, or any type of severe treatment, really lucky that my kids’ symptoms were mild or non existent as some people get really, really sick, and lucky that I live in a place and in an age where GF products are available, and that the cure is well, rather inconvenient at times, but not that big of a deal at the end of the day. Goodbye to my favorite foods of the past – now I must develop some new, equally as delicious alternatives. And as apples don’t fall from their trees, it was important that Amanda’s brother Benjamin, a sophomore at Chapman University, also be tested. He had closely watched our gluten-free journey over the summer, and as he had a history of stomachaches as a child, he was more annoyed than surprised that his blood test results came back positive as well. Ben may have an easier time however, as he is a meat eater and thus will have more options. He is now starting his GF lifestyle.

The executive chefs at the University of California Irvine (Ryan Jaranilla @ Pippins Dining Commons) and Chapman University in Orange (Jim Douglas @ Sandhu Dining Commons) have been extremely supportive and accommodating to the kid’s needs. It is comforting to know that they will be well taken care of while they are away. As for me, I am grateful that our medical journey was not worse, and that’s it’s completely manageable through a change in the foods we eat. I am also extremely proud of how my kids have adapted to their new lifestyle without ever feeling like victims. They are simply and wonderfully, taking care of themselves. I look forward to the kids coming home over the holidays, and breaking gluten-free bread with them.

Name: Linda K.-S.
City: Irvine
State: CA

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