It was not very long ago that celiac disease was virtually unknown. In the U.S. currently, approximately 1 out of 133 people have it, the Celiac Disease Foundation reports. In Italy, it’s estimated that I out of 250 have some form of celiac disease; in Ireland, it’s 1 in 100, according to foodreactions.org. Worldwide, occurance and diagnosis is steadily growing.
May is National Celiac Awareness Month in California. Two celiac sufferers, one from Redding and one from Canada, have graciously agreed to answer questions about how they cope with it. Huge thanks to Melissa Field and Sam “Moggy” Boswell. – Femme de Joie
Menuplease: How long have you known that you had celiac disease?
Melissa: I’ve known about my celiac disease for a little over two years now.
Moggy: I was diagnosed as a child of about eight years old based on the symptom “failure to thrive.” I was much smaller than my peers (as in, in grade two, my sister outgrew the clothing I was wearing in grade six). My parents took me off gluten as a test and my health improved almost immediately. I should note that, as an adult, I decided I wanted the official diagnosis of celiac (versus a wheat allergy; the symptoms can be very similar), so I went back on gluten for about six months and had the full blood work and biopsy; my blood work was 100% positive for celiac and the biopsy showed enough symptoms that the doctors were confident diagnosing celiac based on the combination of results.
MP: What symptoms were you having before you were diagnosed? How long did you have them before diagnosis?
Melissa: I went looking for answers specifically about my intestinal and digestive system complaints, which I have had off and on all 39 years of my life but which were especially debilitating the last 3 years before diagnosis. I was told on a couple of occasions that it was IBS (irritable bowel syndrome) and that I would just have to learn to live with it. Think of the worst case of food poisoning you’ve ever had, crossed with the worst stomach virus you’ve ever had, and then imagine those symptoms going on non-stop, 24-7, for three years. Learn to live with that, are you kidding me? After finally figuring out that celiac disease was my issue, and beginning a gluten-free lifestyle, I’ve also found that my migraine headaches are gone (which I had suffered from since about age 10), and my skin rashes/eczema/dermatitis have all cleared up (which I suffered from my whole life). I also have much more energy, and don’t sleep 16-18 hours per day on the weekends like I used to when I was sick all the time.
Moggy: I was skinny, ill, very small for my age, and pale … I was one of the lucky ones and diagnosed very early, actually, for which I’m very grateful to my pediatrician. I’ll have complications, no doubt, as I get older but the hope is that catching it when the doctor did actually minimized any longer-term damage.
MP: Tell me about shopping for groceries. Is it easy to spot gluten-free foods or do you have to do detective work to read between the lines?
Moggy: Shopping for groceries has actually gotten easier in recent years, mostly thanks to more people following a gluten-free diet (for fad-diet reasons or because they’ve been diagnosed with a gluten sensitivity of some sort). But we also still have a long ways to go … gluten hides in a lot of things as additives, spices, flavourings, thickeners, syrups. I’m really looking forward to the day when everything is clearly marked “contains gluten”! And not just “may contain gluten”… that’s really not good enough. I hate having to put something back on the shelf because it might be contaminated, when it might not. I’m also vegetarian and many meat substitutes use gluten as a primary ingredient to get the “spongy” texture right … it’s just an extra complication in the grocery shopping adventure.
Melissa: When I first started trying to figure out what was gluten-free and what was not, I was ready to start crying. Everything I ate before, every item I picked up in the store and looked at, it all had wheat in it somewhere. Label reading became my new hobby. Several of the celiac support group websites have comprehensive lists of all the different names and hidden ingredients you have to be wary of when grocery shopping, which are very helpful. I keep updated printouts of a couple of these in my purse, for reference.
For me, I’ve found that the quickest, easiest, and most reliable way to buy gluten-free foods is to buy whole foods (raw fruits, raw vegetables, unprocessed meats, eggs, etc.) and fix everything myself from scratch.
Labeling is becoming better in some ways, and many companies seem to be jumping on the gluten-free bandwagon, but there are issues with many of the highly processed, prepackaged foods. First, the FDA does not have stringent guidelines for gluten-free labeling, and no real testing requirements, so something that may say it is “gluten free” can actually have up to 20 ppm (parts per million) of gluten in it by law, and may actually contain more. That might be enough to trigger a noticeable reaction in one celiac patient, and not in another, but with celiac disease, even if the person doesn’t have overt symptoms, further internal damage is still happening with each exposure to gluten.
I tend to purchase more items that are specifically labeled as having been manufactured and packaged in a dedicated facility that does not handle any gluten items, and items which are more stringently tested and certified as gluten free by an outside organization. Second, most of the processed foods are trying to mimic or replace a normally gluten-filled item, and in order to fool the tongue and tastebuds, the manufacturers can use some pretty bizarre ingredients with little to no real nutritional value. If you look at and compare most pre-made, gluten-free baked goods with their wheat counterparts, you’ll find there is a noticeable lack of fiber, vitamins and other nutrients, and a whole lot of empty calories.
MP: Why do manufacturers add wheat to foods where you wouldn’t expect it, like instant coffee, blue cheese, potato chips, vinegar, etc?
Moggy: I don’t know but I wish they’d cut it out! It seems to be the lazy way out for many manufacturers, somehow. Instead of making a good, solid product, they’re adding thickeners and extra flavouring. It’s definitely a good motivation to cook/bake at home.
Melissa: My personal opinion is that food manufacturers add or use wheat for three reasons. One, it is a taste that most Americans have grown up with and are very accustomed to, so adding it makes things taste good to us. Second, it is a very cheap and easily obtained food item. Third, it has many different uses and is very versatile – it can add bulk, smooth a lumpy texture, thicken something that is too runny, keep sticky or gooey things from adhering to the conveyor belts, etc.
As a side note, food manufacturers are not the only ones who add wheat or gluten to the most unlikely items. Celiac patients also have to be vigilant about checking the ingredients in things as varied as the glue used on envelopes to the flavoring agents used on dental floss, from their vitamin supplement pills to the kind of facial tissues they use, from their hand soap to the type of lip gloss they wear. Anything that goes in the mouth, around the face, or that can cling to your hands and be transferred to your mouth is suspect.
MP: Let’s talk about going out to eat. Do you go out as often as you used to?
Melissa: No, I do not eat out nearly as often as I used to before my diagnosis. Before, I would estimate that fast food made up at least 4-5 of my meals each week, and going out to eat in a sit-down restaurant was at least a weekly occurrence, if not more often. Now, I eat out maybe once a month, and only at certain restaurants.
Moggy: My husband and I still go out occasionally but I tend to stick to the restaurants that have proven themselves and understand what gluten-free means. It means a limited selection of restaurants and, if I get contaminated (read: vomiting and days of recovery) at a given place, I’m not inclined to go back, no matter how apologetic they are. Most restaurants do seem to understand food allergies these days, something else that has changed in recent years.
MP: Is it easy to get restaurants to reveal their ingredients, or is it easier to stay home and cook?
Melissa: Just like manufacturers are doing more to label gluten-free foods, many restaurants and national chains are adding gluten-free menus. And just like with processed foods, there are restaurants that do a great job of handling gluten-free orders, and others that don’t do so well. I’ve experienced just about the full gamut, from waitresses educating me about something I didn’t know regarding celiac, to a kitchen manager getting huffy when I was asking questions because she didn’t feel like she should have to know anything about gluten because “no one in her family has that problem.” Yes, that’s a direct quote, from a food industry ‘professional.’
Another thing to remember is that eating gluten-free in a restaurant can be challenging not only because of the actual ingredients used in the meal, but also because of the issue of cross-contamination. Are the French fries cooked in oil that is also used to deep-fry breaded items? Was the grill cleaned completely between the marinated meat and the piece ordered un-marinated because there is gluten in the sauce? Did the cook change gloves or wash his hands between plating a sandwich and then fixing the gluten-free salad? Was that serving spoon in the salad bar moved from the croutons to the carrots? Any one of these, or hundreds of other possible actions, can expose someone with celiac to enough gluten that they become violently ill. Staff education is vital for a restaurant that is serious about offering gluten-free items that a celiac person can trust and feel comfortable eating. We are literally putting our health and well-being in that restaurant’s hands, no differently than someone who has a peanut or shellfish allergy.
Moggy: It used to be that I’d get mighty strange looks when I asked about ingredients; now, waiters/cooks are much more willing to answer questions. Though, that said, a recent luncheon with co-workers at a restaurant that claimed to understand what gluten-free meant … well, it ended with me very sick. So it’s not perfect. I know celiacs who won’t eat out at all and, to be honest, that’s probably the safest approach … but I’ll spin the wheel every so often for the pleasure of ordering pub nachos, if that makes sense.
Please find Part 2 of this story here.
Melissa is a native of the Redding area, with a fascinating and action-packed career that involves staring at a computer screen for hours on end. She relaxes in her free time with vegetable gardening, cooking, and staring at her home computer screen for hours on end.
Moggy is a slightly eccentric and more than slightly geeky writer/editor/civil servant/part-time bookseller who lives in Ottawa with her comic book creator husband, Von Allan (www.vonallan.com); a very spoiled Siberian husky; and two highly opinionated cats. In her spare time, she stays up too late reading, watching old movies, playing on the Internet, knitting badly, and plotting to hitch a ride into space.
Femme de Joie’s first culinary masterpiece was at age 4, when she made the perfect fried bologna sandwich on white bread. Since then she has dined on horse Bourguignon in France, stir-fried eel in London, and mystery meat in her college cafeteria, but firmly draws the line at eating rattlesnake, peppermint and Hamburger Helper. She lives in Shasta County at her country estate, Butterscotch Acres West. She is nearly always hungry. Visit MenuPlease for more.
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