A conversation overheard recently between 2 diabetes health professionals went something like this…..
“My patient was stunned when doc put him on synthroid for his thyroid condition He’s had type 1 for 23 years and has never been exactly compliant He’s a smart guy. He should have anticipated some changes”.
“Oh sure, if you have 1 autoimmune disease, you’re bound to have others. They find each other. That’s the nature of autoimmune.”
I faded into the crowd, head down, pondering what I had just heard. The timeliness of this was quite coincidental since I just finished reading Celiac Disease by Peter H.R. Green M.D. and Rory Jones. It happens that celiac is an autoimmune disorder along with thyroid, type 1 diabetes and others. Autoimmune compromises occur when the body’s own defense system spots a target (itself) and foolishly wages battles and wars until it has destroyed itself.
Statistics reveal that celiac disease affects nearly 1 out of every 133 people. That is quite astounding unto itself. However, the great majority go undiagnosed. Symptoms such as fatigue, skin irritations, gastric problems, bloating, joint pain, bone loss and anemia are treated separately with a laundry list of medications. The reason for this is that celiac is very difficult to diagnose.
What exactly is celiac disease anyway? Celiac is an autoimmune disorder of the gastrointestinal tract which damages the tiny finger-like projections in the small intestines called “villi” which are the workhorses responsible for absorption, digestion and protection. Villi help pass nutrients into the blood stream. When compromised, the absorption of necessary nutrients becomes difficult. The culprit to blame is gluten, the storage protein found in wheat, rye and barley. What happens is that the immune system attacks the villi as gluten enters, mistakenly perceiving gluten as an enemy invader. The autoimmune army inflames the villi, making the absorption of nutrients impossible. Eventually the villi, exhausted from fighting, acquiesce and flatten, losing the battle.
During the course of reading Celiac Disease, I decided to try a gluten free diet to help understand the ramifications of living with this condition. At first I thought is would be a snap since I rarely buy packaged or processed foods. However, when it came to dealing with my love affair with bread and pasta, things changed quite dramatically. It meant going out on the hunt to find gluten free products and restaurants. I found some good products at local health food stores and some pretty good stuff at Whole Foods. I also found a restaurant in my neighborhood in Greenwich Village (NYC), Gus’ Place on Bleecker Street that was the first to offer a gluten free menu. Sheran and Gus Theodoro, proprietors of the restaurant told me it all started when a customers’ daughter was diagnosed. The gluten free menu caught on and now, seven years later, it continues to flourish. They prepare gluten free foods in a separate kitchen to avoid contamination.
After 2 weeks on this diet I realized how much thought and care it takes. It was a lot of juggling and calculating new carbs which I was not familiar with, and adding more rice, potatoes and corn into my diet for that carb bulk I crave. I also gained a broad respect for those who live with celiac and parents of children who put so much time and energy into making the celiac lifestyle work. This is one of the recipes I enjoyed making several times during my GF time. I varied the fish and fruit according to what was good in the market.
Celiac Disease in Real Life
I spoke with several parents whose type 1 children have celiac. They all mentioned certain basics: stocking a celiac pantry, worrying about cross contamination, learning how to go over labels with a fine tooth comb and educating their children and other family members on the celiac life style.
One Mother, Heather Kyllo, has 2 children with type 1. One of them has celiac also. Kyllo says “I would take a third child with diabetes before I took another with celiac. Diabetes, albeit a very complex condition, is manageable with the right tools. Yes, it can be fatal if mistakes are made but those mistakes are usually catchable. Celiac is very difficult to manage while at the same time maintaining a “normal” life. There is no “normal” in fact, once diagnosed with celiac. It is greatly misunderstood and misdiagnosed. People don’t understand that a “little bit of gluten” WILL hurt them. We have done the best we can to help our teenage son to deal with the diagnosis and to give him the tools he needs to make the right decisions. However, we cannot and do not live in a bubble. There are 3 of us in this house who do not have to make the sacrifices he makes and he understands that. I do my best to make sure he has something comparable to our waffles and pizza so he doesn’t feel left out. We have 2 toasters, 2 butter dishes, 2 peanut butters, 2 jams. I buy squeezable containers whenever possible to avoid cross contamination.”
Heather buys very good GF products from a GF bakery in Seattle, DaVinci’s Café. “It’s very expensive but worth it to see the smile on Chad’s face when he is delighting in the tastes and delicacies.” Heather generously offered a favorite gluten free brownie recipe from her collection. I have tried it and it is very good! NOTE: Be sure to check your bg and bolus adequately.
When I spoke with Bonnie Silvester, whose husband has celiac and daughter has type 1 and celiac, she offered this advice: “Don’t panic! Feel grateful that you got a proper diagnosis. Also, it is a ‘wonderful diagnosis’ because you don’t have to take medications to get healthy and feel so much better. It is just ‘food’ avoidance. But, honestly, this is advice for after you’ve had celiac for awhile. You WON’T be able to feel this right away, but celiacs are actually very lucky because they can’t eat all the junk foods like McDonalds’ burgers and Krispy Kreme donuts. But there are plenty of substitutes available.”
At home Bonnie cooks gluten free but when the family goes out to restaurants she and her son eat “gluten”. Eating out and going to events can pose problems though, that is why Bonnie always packs a cooler filled with gluten free products. It eases the stress of worrying if there is wheat in the soy sauce or other hidden glutens. Getting doctors to prescribe the TTG test for celiac can also be difficult. Bonnie spent much time and frustration fighting for diagnosis for her young daughter. Early on she attended support groups and meetings which helped her learn about what tests to ask for at the doctor’s office, how to cope, places to shop and about food substitutes. The Silvester family has healthily integrated celiac into their lifestyle avoiding fast foods and opting for nourishing snacks such as yogurt, cheese, fresh fruits and vegetables. When little 9-year old Rachel ingests gluten she exhibits symptoms (vomiting and low bg’s) for up to 4 days. She knows to avoid glutens and won’t even walk into a fast food eatery.
A few favorite items Bonnie finds at the grocery store are Sun-Bird fried rice Packets and Pamela’s Best Waffles as well as a good selection of GF products at Sprouts, a local health food store. She mail orders breads from www.glutino.com. Their very favorite is corn/cheese bread. She orders a dozen loaves at a time and freezes them. The following GF recipe is one that Bonnie prepares to the delight of the entire family.
There is a plethora of information available on celiac. Here are just a few you can start with if interested. Each of these will lead you to more:
University Celiac Disease Center at Columbia University - 212 305-5590
University of Chicago Celiac center - 773 702-7593
American Celiac Society - 504 737-3293
Celiac Disease Foundation - 818 990-2354
Gluten Free Living Magazine - 914 741-5420
Cyber Kitchen Recipes:
|Grilled Halibut and summer Fruit Relish (2 Servings)|
2 fresh halibut (or other white fish) filets, 6 oz. each
|Gluten Free Fudge Brownies|
8 T. unsalted butter
|Gluten Free Salmon Cakes with Ginger Sesame Sauce (4 servings)|
6 slices GF sandwich bread, crusts cut off
Nutritional Value: 1 cake = 396 cal, 18 carb grams, 20 fat grams, 35 grams protein, 3 grams fiber