WHEN FOOD IS THE ENEMY
Jun. 22nd, 2011 06:40 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
menuplease Note: This first appeared in A News Cafe as a considerably abridged two-part series. Here is the full-length version.
It was not very long ago that celiac disease was virtually unknown. In the US, approximately 1 out of 133 people have it (source: Celiac Disease Foundation). In Italy, land of wheat pasta, it’s estimated that I out of 250 have some form of celiac disease; in Ireland, it’s 1 in 100 (source: foodreactions.org). Worldwide, diagnosis is steadily growing.
Two celiac sufferers have graciously agreed to answer some questions about how they cope with it. May is National Celiac Awareness Month in California; it is hoped that this will educate as well as possibly help someone who may be dealing with symptoms similar to those described here. - 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 taste-buds, 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.
That's not to say all gluten free foods are bad, or that I never buy anything that's a convenience food. You just have to be vigilant, read all the labels, sometimes contact the company for more information, and if in doubt or if it has caused a reaction in the past, don't buy it or eat it.
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.
MP: Are there any restaurants or mainstream food products that cater to the gluten-free market?
Melissa: Yes, there are some wonderful companies that go above and beyond to provide items and service to the gluten free market. My favorite chain restaurant here in Redding is Outback Steakhouse. They have an extensive gluten free menu that is printed out and the staff members there have been trained phenomenally well in my opinion. I've also had positive experiences at Olive Garden and Red Robin. As far as local establishments go, Post Office Saloon and Grill is one of my favorites. When I travel outside the Redding area, I also enjoy eating at Mimi's and PF Changs. When grocery shopping, I've found that ConAgra companies tend to have very reliable labeling, as does Kraft. I also rely on Raley's house brands, as they have very good gluten free labeling.
Moggy:There are some gluten-free restaurants in Ottawa, Ontario, now, actually! At least two Italian restaurants cater to the gluten-free market (one completely and one has an alternate menu), two vegetarian restaurants have a huge selection of gluten-free options, and at least one Chinese place will cook gluten-free "off menu." Boston Pizza and Pizza-Pizza, both large chains, have also started to offer gluten-free meals...and I have to tell you, there isn't much nicer than being able to meals from a big restaurant like a "normal person."
MP: How has your diet evolved? Do you have gluten-free substitutes (i.e. wheat-free pizza crust, rice pasta) or have your eating habits changed radically from before?
Melissa: My diet and eating habits have altered dramatically since diagnosis. As a single person, I was always rather lazy when it came to cooking. It seemed such a waste to dirty a bunch of pots and pans for one person, so I would just grab a sandwich, a bowl of cereal, or fast food. Now, I cook at least 2 meals a day, and the dishes be damned. When I was first starting to eat gluten free, the easiest thing was to plan meals around foods that naturally contain no gluten, such as plain meat, fruits, vegetables, rice, etc.
Since I had no choice about becoming a label reader, I am now much more cognizant of the things I am putting into my body. If I can't pronounce it, or need an under-graduate degree in chemistry to understand what it is, I feel like I probably shouldn't be eating it, and try to avoid it.
I do have some gluten free go-to items that are basically just a replacement for my old wheat-based favorites. Tinkyada rice pasta is the best pasta replacement I have found. I'm also partial to Udi's breads (the sandwich bread is great and won't disintegrate when the condiments hit it; and their cinnamon raisin bread is awesome), and Schar's pizza crusts, crisp bread (very similar to Wasa bread), and hazelnut-chocolate wafer cookies. But I have branched out and tried many things I had never eaten before. New favorites include risotto, quinoa or millet grain salad, and polenta.
Moggy: I never liked bread all that much so the only real substitute food that I have in house is gluten-free (rice) pasta and gluten-free pancakes mixes. Every so often, I'll make muffins or cornbread but I mainly subsist on potatoes and rice for my starches. And I've had to learn to cook with tofu and beans for protein, what with gluten-contaminated meat substitutes being mostly off-limits.
MP: Do you think overall your diet is healthier than before?
Moggy: Well, I do miss gluten but it's mainly for the ease of eating out; it would be nice to be able to have a vegetarian burger at a fast-food joint or my favourite cake (black forest) for my birthday. Or onion rings. Or donuts! I miss donuts! I like to kid with my friends that it's probably a good thing I can't eat gluten because everything gluteny that I actually miss is also actually very bad for me. So, I guess you could say my diet is healthier than it would be otherwise?
Melissa: Yes, I do think I eat much healthier now. I'm not eating nearly as much processed food, so I know my sodium intake is much lower than it used to be. I also favor organic and minimally processed food, so I'm not ingesting nearly as many chemicals and preservatives. And since I don't eat quite as many starchy or grain-based items, I tend to fill up on fruits and vegetables more.
MP: What’s the worst thing about having celiac?
Moggy: The most inconvenient thing is, well, the inconvenience...having to check everything before I eat it, being nervous of trying a new restaurant, and wondering if I remembered to check the ingredients on something a few bites into a meal. But the worst thing is probably the expense; the long-term consequences of Celiac Disease are kind of scary and the short-term consequences of gluten are awful (projectile vomiting awful) so it's important to stick to the diet...but how people on limited incomes do this, I'll never know. Gluten-free food runs dollars higher than regular; in some cases, almost double. $3.99 for a gluten-free version of a $1.49 package of regular noodles, $8 for a gluten-free version of $3 box of breadsticks, etc. I have a similar complaint with the fact that eating a diet heavy in fruit/ veggies/ organics/ whole grains is more expensive than a junk food diet; I know the gluten-free and healthy eating crowds are smaller so the food is more expensive...but it would be nice if the government could do something to help people who are trying to do good things for their bodies. In Canada, I can claim a tax credit for gluten-free foods (with a letter from my doctor confirming my Celiac diagnosis) but it's a complicated and bureaucratic process and I'm sure most people don't do it because the effort isn't worth the pennies you get back. It's all very frustrating.
Melissa: For me, the worst thing is not any of the ongoing health issues, or the foods I can't eat any more and miss. The worst thing is how celiac disease can limit a person's social life. Eating out or eating at a friend or family member's place can be more stressful than relaxing, so you just skip it. Church potlucks are impossible to navigate safely, so you leave early or don't bother to go at all. Cakes, cookies, donuts, and other goodies brought into the office by well-meaning coworkers can be a temptation hard to pass up, so you hide in your cubicle and hope the crumbs are cleaned off the table before you have to go to a meeting in that room.
I'm very blessed, with family and close friends that made the effort to learn about my dietary limitations and are willing to work with me in doing what's safest for me - whether that's letting me shop with them and show them safe ingredients to use; allowing me to help them prepare part or all of the meal; agreeing to go out to a restaurant that I know has a gluten free menu I can trust; or, letting me brown-bag my own food to a gathering. I've made the choice not to let celiac turn me into a recluse, but I can fully appreciate how difficult that can be for others. So much of what we do socially revolves around food.
MP: Anything else you’d like to add?
Moggy: I'd like friends and family of Celiacs to understand that this disease is not a dietary choice; I've heard of people sneaking wheat flour into baking because "otherwise the food doesn't turn out...and so-and-so never notices!" Celiac Disease isn't like a peanut allergy; chances are you won't see your victim get sick right in front of you. They'll get sick later that night or the next day...it'll be vomiting like you've never seen before, diarrhea, fatigue, fogginess, and more. You'll have made the next few days or week (or longer) a misery for them. And you'll have done internal damage! If you feed a Celiac gluten, you are contributing to a future of increased cancer risks and osteoporosis and assorted other medical disasters. So just don't do it! We like to be able to eat something at a dinner we've been invited to, of course, but I'm pretty sure I speak for my fellow Celiacs when I say we'd rather go hungry than get poisoned. And that's the best way to look at it: gluten is poison to a Celiac, pure and simple.
Melissa: While discussing celiac and the gluten free trend, it's important to recognize that not everyone who chooses to eat gluten free has celiac disease. Some people have an actual wheat allergy, some have gluten sensitivity, some have found that a gluten free diet helps alleviate symptoms of other auto-immune disorders (such as rheumatoid arthritis or fibromyalgia), and some just feel better doing it for no readily discernible reason. However, for those of us with celiac, it's not a choice, it is a requirement, and the only option if we want to stay as healthy as possible. Celiac disease doesn't have a cure;
there is no medication we can take, no surgery we can have, nothing else we can do to fix the underlying problem. Avoidance of all gluten, from any and every source, is the
only way we can manage our disease.
Melissa is a native of the Redding area, with a fascinating and action-packed career which 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.
It was not very long ago that celiac disease was virtually unknown. In the US, approximately 1 out of 133 people have it (source: Celiac Disease Foundation). In Italy, land of wheat pasta, it’s estimated that I out of 250 have some form of celiac disease; in Ireland, it’s 1 in 100 (source: foodreactions.org). Worldwide, diagnosis is steadily growing.
Two celiac sufferers have graciously agreed to answer some questions about how they cope with it. May is National Celiac Awareness Month in California; it is hoped that this will educate as well as possibly help someone who may be dealing with symptoms similar to those described here. - 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 taste-buds, 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.
That's not to say all gluten free foods are bad, or that I never buy anything that's a convenience food. You just have to be vigilant, read all the labels, sometimes contact the company for more information, and if in doubt or if it has caused a reaction in the past, don't buy it or eat it.
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.
MP: Are there any restaurants or mainstream food products that cater to the gluten-free market?
Melissa: Yes, there are some wonderful companies that go above and beyond to provide items and service to the gluten free market. My favorite chain restaurant here in Redding is Outback Steakhouse. They have an extensive gluten free menu that is printed out and the staff members there have been trained phenomenally well in my opinion. I've also had positive experiences at Olive Garden and Red Robin. As far as local establishments go, Post Office Saloon and Grill is one of my favorites. When I travel outside the Redding area, I also enjoy eating at Mimi's and PF Changs. When grocery shopping, I've found that ConAgra companies tend to have very reliable labeling, as does Kraft. I also rely on Raley's house brands, as they have very good gluten free labeling.
Moggy:There are some gluten-free restaurants in Ottawa, Ontario, now, actually! At least two Italian restaurants cater to the gluten-free market (one completely and one has an alternate menu), two vegetarian restaurants have a huge selection of gluten-free options, and at least one Chinese place will cook gluten-free "off menu." Boston Pizza and Pizza-Pizza, both large chains, have also started to offer gluten-free meals...and I have to tell you, there isn't much nicer than being able to meals from a big restaurant like a "normal person."
MP: How has your diet evolved? Do you have gluten-free substitutes (i.e. wheat-free pizza crust, rice pasta) or have your eating habits changed radically from before?
Melissa: My diet and eating habits have altered dramatically since diagnosis. As a single person, I was always rather lazy when it came to cooking. It seemed such a waste to dirty a bunch of pots and pans for one person, so I would just grab a sandwich, a bowl of cereal, or fast food. Now, I cook at least 2 meals a day, and the dishes be damned. When I was first starting to eat gluten free, the easiest thing was to plan meals around foods that naturally contain no gluten, such as plain meat, fruits, vegetables, rice, etc.
Since I had no choice about becoming a label reader, I am now much more cognizant of the things I am putting into my body. If I can't pronounce it, or need an under-graduate degree in chemistry to understand what it is, I feel like I probably shouldn't be eating it, and try to avoid it.
I do have some gluten free go-to items that are basically just a replacement for my old wheat-based favorites. Tinkyada rice pasta is the best pasta replacement I have found. I'm also partial to Udi's breads (the sandwich bread is great and won't disintegrate when the condiments hit it; and their cinnamon raisin bread is awesome), and Schar's pizza crusts, crisp bread (very similar to Wasa bread), and hazelnut-chocolate wafer cookies. But I have branched out and tried many things I had never eaten before. New favorites include risotto, quinoa or millet grain salad, and polenta.
Moggy: I never liked bread all that much so the only real substitute food that I have in house is gluten-free (rice) pasta and gluten-free pancakes mixes. Every so often, I'll make muffins or cornbread but I mainly subsist on potatoes and rice for my starches. And I've had to learn to cook with tofu and beans for protein, what with gluten-contaminated meat substitutes being mostly off-limits.
MP: Do you think overall your diet is healthier than before?
Moggy: Well, I do miss gluten but it's mainly for the ease of eating out; it would be nice to be able to have a vegetarian burger at a fast-food joint or my favourite cake (black forest) for my birthday. Or onion rings. Or donuts! I miss donuts! I like to kid with my friends that it's probably a good thing I can't eat gluten because everything gluteny that I actually miss is also actually very bad for me. So, I guess you could say my diet is healthier than it would be otherwise?
Melissa: Yes, I do think I eat much healthier now. I'm not eating nearly as much processed food, so I know my sodium intake is much lower than it used to be. I also favor organic and minimally processed food, so I'm not ingesting nearly as many chemicals and preservatives. And since I don't eat quite as many starchy or grain-based items, I tend to fill up on fruits and vegetables more.
MP: What’s the worst thing about having celiac?
Moggy: The most inconvenient thing is, well, the inconvenience...having to check everything before I eat it, being nervous of trying a new restaurant, and wondering if I remembered to check the ingredients on something a few bites into a meal. But the worst thing is probably the expense; the long-term consequences of Celiac Disease are kind of scary and the short-term consequences of gluten are awful (projectile vomiting awful) so it's important to stick to the diet...but how people on limited incomes do this, I'll never know. Gluten-free food runs dollars higher than regular; in some cases, almost double. $3.99 for a gluten-free version of a $1.49 package of regular noodles, $8 for a gluten-free version of $3 box of breadsticks, etc. I have a similar complaint with the fact that eating a diet heavy in fruit/ veggies/ organics/ whole grains is more expensive than a junk food diet; I know the gluten-free and healthy eating crowds are smaller so the food is more expensive...but it would be nice if the government could do something to help people who are trying to do good things for their bodies. In Canada, I can claim a tax credit for gluten-free foods (with a letter from my doctor confirming my Celiac diagnosis) but it's a complicated and bureaucratic process and I'm sure most people don't do it because the effort isn't worth the pennies you get back. It's all very frustrating.
Melissa: For me, the worst thing is not any of the ongoing health issues, or the foods I can't eat any more and miss. The worst thing is how celiac disease can limit a person's social life. Eating out or eating at a friend or family member's place can be more stressful than relaxing, so you just skip it. Church potlucks are impossible to navigate safely, so you leave early or don't bother to go at all. Cakes, cookies, donuts, and other goodies brought into the office by well-meaning coworkers can be a temptation hard to pass up, so you hide in your cubicle and hope the crumbs are cleaned off the table before you have to go to a meeting in that room.
I'm very blessed, with family and close friends that made the effort to learn about my dietary limitations and are willing to work with me in doing what's safest for me - whether that's letting me shop with them and show them safe ingredients to use; allowing me to help them prepare part or all of the meal; agreeing to go out to a restaurant that I know has a gluten free menu I can trust; or, letting me brown-bag my own food to a gathering. I've made the choice not to let celiac turn me into a recluse, but I can fully appreciate how difficult that can be for others. So much of what we do socially revolves around food.
MP: Anything else you’d like to add?
Moggy: I'd like friends and family of Celiacs to understand that this disease is not a dietary choice; I've heard of people sneaking wheat flour into baking because "otherwise the food doesn't turn out...and so-and-so never notices!" Celiac Disease isn't like a peanut allergy; chances are you won't see your victim get sick right in front of you. They'll get sick later that night or the next day...it'll be vomiting like you've never seen before, diarrhea, fatigue, fogginess, and more. You'll have made the next few days or week (or longer) a misery for them. And you'll have done internal damage! If you feed a Celiac gluten, you are contributing to a future of increased cancer risks and osteoporosis and assorted other medical disasters. So just don't do it! We like to be able to eat something at a dinner we've been invited to, of course, but I'm pretty sure I speak for my fellow Celiacs when I say we'd rather go hungry than get poisoned. And that's the best way to look at it: gluten is poison to a Celiac, pure and simple.
Melissa: While discussing celiac and the gluten free trend, it's important to recognize that not everyone who chooses to eat gluten free has celiac disease. Some people have an actual wheat allergy, some have gluten sensitivity, some have found that a gluten free diet helps alleviate symptoms of other auto-immune disorders (such as rheumatoid arthritis or fibromyalgia), and some just feel better doing it for no readily discernible reason. However, for those of us with celiac, it's not a choice, it is a requirement, and the only option if we want to stay as healthy as possible. Celiac disease doesn't have a cure;
there is no medication we can take, no surgery we can have, nothing else we can do to fix the underlying problem. Avoidance of all gluten, from any and every source, is the
only way we can manage our disease.
Melissa is a native of the Redding area, with a fascinating and action-packed career which 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.
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Date: 2012-03-20 11:47 am (UTC)