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2wheels4eyes's Achievements
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Despite my care, I've glutened myself for the second time this week--not even sure on what at this point. I think just CC, either in my house or the pre-made/packaged foods (which are gluten-free--ha ha--but "made in facilities that...")
So tonight I'm sitting for a dinner I had no interest in eating at Outback's, waiting for my latest symptoms to pass (fortunately I don't think it was a lot of gluten--and I hasten to add this wasn't Outback--I glutened myself at home.) Everyone at the table is talking about, y'know, life and stuff and in the back of my head I'm thinking about my gut. And how stupid I am that this happened again. And about the relatives I learned about last week (all my grandmother's generation or before) that were diagnosed with celiac disease too late in life and died of rare intestinal cancers in their 50s or early 60s.
I have no intention of dying in my 50s or 60s of some stupid celiac disease-related thing (I'm 29; dx'd 8 mos. ago.) I'm beginning to think my greater risk with celiac disease isn't cancer & osteo but paranoia.
Does anyone know of any *good* long term studies of morbidity in those following the gluten-free diet? I know they've got some ballpark figures and that lab tests show even minute amounts can damage the villi. But c'mon. Just because they can detect the effects of gluten doesn't mean (necessarily) that my risks for various things has gone up until that damage is severe enough.
I'm guessing that a really good, longitudinal, double-blind trial hasn't been done, first because who would spend the $ on something like that and second because you'd have to put celiacs on gluten diets and then conduct repeated biopsies. But maybe something could be done using non-compliant (non-gluten-free) celiacs and those sticking to the gluten-free diet? Anyone heard of such things? I want hard numbers on risks as correlated to frequency and severity of gluten exposures.
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(My apologies if I've posted this in the wrong spot--I'm looking for specific travel advice but also just general coping advice as well.)
I'm from Ontario originally, but live in Minnesota now (and was diagnosed here). I haven't been home since the new diet--Christmas was to be my family's first exposure to my gluten free life in all its fraught complexity. But my grandmother has just died and I'm heading home early (as in tomorrow a.m.) for the funeral and then staying over the holidays. I'm so upset about my grandma the last thing I want to think about is food--but I know if I don't pack stuff I won't have anything for days. I'm not even sure what gluten-free shopping options are available--I'll be staying in Kitchener, the funeral is in Delhi (near Simcoe). I know there will be absolutely no time tomorrow or Monday to shop so I should bring some stuff with me. I also won't be renting a car--so at the mercy of my relatives to drive me about if I need to shop.
What do people find is most useful and/or easy to bring when out of town? I was thinking Lara bars & my own gluten-free cereal/fruit/nut bars. Should I bring crackers or bread or not bother? I've been hassled in the past about bringing food across the border--it's an invitation to customs to go through all your luggage, making sure you declared everything. And they don't seem to like it when you bring fresh stuff (e.g. an apple) with you. My partner thinks it would be good to bring some Thai Kitchen just-add-water meals but that seems to be a bit much. There will be a reception after the funeral held at the local church. I have no idea what's being prepared food-wise. This is one of those times when I wish I could just go without eating altogether.
Any packing ideas--or shopping tips while in K-W--would be of great help to me.
Thank you!
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Shopping for everyone else today and found a Cookie Monster mini lunch box (for $4!) to store my cookies/crackers in while I travel. Who said this can't be fun (occasionally)? Another disease could have me toting around an oxygen tank instead of rice crackers.
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I've had two major glutenings in my four months on the diet--my mistake afterwards was eating whatever I wanted/had on hand while I was getting over the gluten. I think this may have prolonged things. The second time I stuck to whole foods, grits, water, peppermint tea, etc., stayed away from packaged/prepared stuff and felt much better. I've heard from other people that fruit is a bad idea while you recover and I certainly found that to be the case also. The other bonus of keeping your eating simple for the first few days after a run-in with gluten is that it might be easier to determine the source.
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So it's been about four months gluten-free for me. I was sick-ish before, but not bad really. Went gluten-free & had this surge of energy at first, it was fabulous. Then it kind of tapered off, and the long slog of detox began. I got rid of all the forbidden foods but didn't give much thought to CC. About a month into the new diet, life (finally!) seemed to seep in around the edges again. I went out, work got crazy, the dog's potty training was a disaster, etc. That is, I started to forget, at least when at home, that gluten and I had parted ways forever.
Then last month I had to do a bunch of travelling and eating out, and now the holidays (and a trip home, newly gluten-free) looms. I of course got sick while travelling (Is there anything lonelier than being curled in the fetal position racked with pain in some strange hotel in a strange city?) But the worst by far was getting glutened a couple of weeks ago in my own kitchen--I think by an ostensibly gluten-free Amy's frozen dinner. Because I was sick-ish but not horrendously sick pre-diagnosis I didn't think I would be all that sensitive to CC on the diet.
Oh. My. God.
It was five days of what essentially felt like the worst food poisoning of my life. And minor gluten exposures since then have been nearly as bad. So now gluten again is the big star in my sky. I'm avoiding the holiday parties at work, I'm avoiding restaurants. I obsess about symptoms, shared counter space, grocery lists again. When friends and family ask me "how's that allergy thing going?" I want to enumerate in detail the minutiae of the diet, my run-ins with gluten, my near-misses, my tireless forensic work in uncovering the source of all gluten in my life. At this rate, I'll have neither friends nor gluten in about six months time.
How is everyone else dealing with the (under the circumstances perfectly reasonable) paranoia about CC? Any other "not really sensitive" celiacs suddenly discover they're actually horrendously sensitive once on the diet?
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Just got back from a quick weekend in Las Vegas (which went much better, dining-wise, than my trip the week before to San Antonio) and I thought I'd post my finds:
1) The Burger Bar in Mandalay Bay Hotel/Casino (Mandalay Bay's located next to the Luxor). I don't even eat red meat but this turned out to be a great gluten-free experience. The staff was very accommodating and communicative. The menu features a vegan burger (grilled veggies between two grilled portabella mushrooms). They only grill the veggies in oil and whole seasonings. You can "customize" your burger dozens of extras--I ordered grilled shrimp for protein. If you're a beef eater I bet they'd be happy to do a burger between two portebellas if you asked. The fries are also gluten-free--the sweet potato ones are amazing. I didn't even bother pulling out my Triumph card. Reasonably priced for casino food ($12 for vegan burger & fries, $6 for the shrimp.)
2) Cafe Flores in Boulder City. We stopped here for lunch on our way back from touring the Hoover Dam. This Mexican restaurant is located on the highway (515 I think it was?) between Vegas and the dam. This is homestyle--not haute--Mexican. Extremely tasty and (to my Canadian taste buds) probably one of the most authentically Mexican meals I've ever had. They make everything from scratch and so were super-helpful about explaining ingredients to me. (I did have the Mexican Triumph card which was a big help for this meal.) Ultra-cheap food: about or under $10 for a very large plate (tip them well!)
3) I ate other meals in Vegas but these were mostly at chains--e.g. Cheesecake Factory (*not* my choice!). These meals were in general less successful. Although most waitstaff tried to be accommodating, the size of these restaurants simply made it much easier for something to get lost in translation between the kitchen and my table.
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I am 29 and also showed that I had osteopenia a couple months ago when my doctor sent me for bone density tests. I've heard it can be a serious problem, but she told me to take calcium with vitamin D 3x a day. I have trouble remembering 3x a day, but I try and take it atleast twice.
I too, according to the almighty Dexxa scan, have osteopenia (I'm 29 too). I confessed to my dr. last week that I was having a hard time remembering to take calcium/D 4x/day (4 smaller doses to aid absorption). He said I was *way* better off doubling up doses than missing doses altogether. Just don't take it with iron supplements because these compete with the calcium for absorption.
The other thing is lifestyle-cigarettes, alcohol, also some medications are risk factors for osteoporosis.
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StarTribune.com
Open Original Shared Link
Last update: October 04, 2006 – 5:14 PM
Going gluten-free*
More people are learning that they have celiac disease, an illness tied directly to food. And not just any food: It's "the staff of life" -- or the flour it's made with -- that makes them sick.
Al Sicherman, Star Tribune
The doctor had good news -- and bad -- when Barbara Wojcik's celiac disease was diagnosed four years ago. The good news: She'd be feeling better than she had in years. The bad news: She had to change her diet. Forever. No more bread, cake or cookies.
And no more pizza, pasta, pretzels, fried chicken, beer, bagels, gravy, crackers nor a whole lot of ordinary frozen dinners, convenience foods and breakfast cereals. At least not normal versions of those foods. No more of anything that contained even a little wheat, rye or barley.
This was going to be difficult. "Food is so important to a family -- traditions and customs, and emotional well-being. It's really all tied in. To have to change something so basic so radically was really quite stressful," said Wojcik, 52, of White Bear Township.
She learned what her ailment was after 18 years of suffering with what doctors had continued to tell her was, in effect, a touchy gut. Along the way, one advised her to eat a lot of fiber -- like whole-wheat bread.
Her case isn't unusual; celiac disease is often misdiagnosed.
When Erik Binkowski was 2 years old, he had chronic diarrhea. His pediatrician told his parents it was a toddler thing and that he'd grow out of it. He didn't, and the next diagnosis was dairy allergy; Erik was put on soy milk. That wasn't it, either. The next diagnosis was a parasite. But that wasn't the case.
After six months of this, he was falling off the growth chart, his mother said. "He had a huge belly and tiny arms and legs. He truly looked like a starvation victim,"said Shawn Binkowski of Savage. That's when Erik's pediatrician suggested a test for celiac disease. A specialist put Erik on a gluten-free diet and, within two months, the young boy was improving.
"The circles under his eyes disappeared, he was no longer a sad, uncomfortable kid; he was a happy kid," said his mother. "In four or five months, it was very clear; he was thriving."
Celiac disease is often misdiagnosed, according to Binkowski, who is active in the Twin Cities chapter of ROCK (Raising Our Celiac Kids). "We were told, indirectly, 'paranoid mom, neurotic mom,' " she said. "You know something is wrong. You have to be your child's advocate."
That situation is changing for both children and adults, said Dr. Roger Gebhard, a professor of medicine at the University of Minnesota and a gastroenterologist at Regions Hospital in St. Paul. He serves as adviser to the national Celiac Sprue Association and the Northland Celiac Support Group. Increased awareness of celiac disease, as well as awareness that it has been underdiagnosed, has led more doctors to test for it, he said.
Estimates of the number of people who have celiac disease are debatable because many who have it don't know it. A figure widely cited is one person in every 130; Gebhard thinks that figure is too high. But for a malady that many people haven't even heard of, celiac disease is fairly common.
Although it's genetic, not everyone who has the genes for it will develop the disease. Wojcik's son has it; her daughter doesn't, nor do any of Binkowski's three other children. Some people develop symptoms as children, others as adults. Some have obvious digestive symptoms, others don't (although the digestive symptoms are often misdiagnosed as irritable bowel disease and the like).
How to stay healthy
Not eating foods that contain gluten is a necessary step to maintain health. How much further to carry gluten avoidance is a difficult issue. That includes keeping a separate no-gluten cutting board and separate butter dishes so as to avoid the crumb left on the knife when someone else butters a roll.
"We don't know what is the smallest amount of gluten that has an effect," Gebhard acknowledged, "and it seems to differ from person to person. But even if you don't have symptoms, you could still be doing damage." Studies suggest that the risk of several kinds of cancer in people with celiac disease might be related to how painstakingly they avoid gluten.
"You have to live," Gebhard said, "but our advice is to try to be as scrupulous as possible."
A completely normal life isn't possible with celiac disease, but living with it is easier than it used to be, as awareness of the condition grows. There are many gluten-free grocery products, even in mainstream supermarkets. These include bread, pasta, brownie mixes, flour. Natural- and health-food stores contain more products, and there are still more by mail-order. Some of them are pretty good. (In a recent office blind-tasting of brownies, the clear favorite was a flourless -- so gluten-free -- mix.)
High cost of diet
But gluten-free shopping is costly, even at regular supermarkets. That factor helps explain why many celiac sufferers keep a sort of dual kitchen: special products for them, but mostly regular ones for the rest of the household. Wojcik notes she has, with varying success, "converted" some family favorite recipes to gluten-free. But for some things, she makes a version for herself separately. "For spaghetti night, I just make my own noodles for me -- because they like theirs better and because the specialty ones are expensive."
Binkowski has a special cupboard for food and a bin in the freezer for Erik, who is now 10. "It's all gluten-free food that he knows he can have." He also has a separate toaster, a separate butter dish, and there are separate colanders for draining pasta. "I try to make the same dishes for everybody," Binkowski said, "but his will be a gluten-free version."
One of the hardest parts, for adults and kids, is the way the disease affects social situations. When she's invited somewhere, Wojcik said, she often calls the host and asks if she can bring something -- and she brings something she can eat. Sometimes, she said, she suggests that everyone go out for dinner instead.
If it's a catered or work-related event, Wojcik said, "I'll make a few phone calls to see whether I think there'll be anything I can eat. Often I eat before I go, so I'm not hungry or feeling deprived." Sometimes, she said, she just decides not to go.
Binkowski says Erik understands his disease and is careful about what he eats. But it can still be difficult. "When we go to a neighborhood gathering, a family gathering ... everything is celebrated around food, and he can't have most of it," she said. "At a neighborhood picnic, for example, there were cupcakes, which he can't have, so I brought some Skittles for him. Birthday parties are a challenge, school is a challenge; everything we do is a challenge."
His teachers understand. "I talk to them at the beginning of the school year. There's a treat container for him. So when there's a treat for the class, he always has something." (Erik picks out his treats at a co-op, where, Binkowski said, there's a wider gluten-free selection than at supermarkets.) She also prepared a note for teachers to send home to other parents, explaining the disease and what Erik can eat.
Along with all of those concerns, she noted, a big one is that "he's 10, and he doesn't like to be singled out."
But he's coping very well. "I said to him once, 'I wish I could take this on for you, Erik,' and he said, 'Mom, you could never handle it. I'm a much healthier eater because of it' -- this when he was 8."
Read the labels
Gluten-free shopping also means becoming a careful label reader. New nutrition-label regulations from the federal Food and Drug Administration (FDA) this year require plain-language listing of the eight most common allergens, one of which is wheat. That makes things much easier than in the past, when encountering "modified food starch" meant calling the manufacturer to find out if that was wheat starch. Since January, if there's an ingredient that contains wheat but doesn't have "wheat" in its name, the label has to say "(wheat)" or "contains wheat ingredients."
But that regulation doesn't cover rye, oats or barley, and barley is surprisingly present as "malt flavor" in almost every cereal, including such OK-sounding products as corn flakes, Rice Krispies and Rice Chex. Is the vinegar in a salad dressing malt vinegar? Probably not, but a call to the manufacturer (or an indication on one of the many lists of gluten-free products -- if that list is current) will tell you. A few other surprises revealed on labels: Some brands of soy sauce contain wheat, some instant mashed potatoes contain wheat flour and so do many dips.
FDA standards for a voluntary "gluten-free" label are to be implemented in 2008.
Some stores (Whole Foods Market, for example) and manufacturers (Kraft, for example) have online lists of their gluten-free products.
Nutritionist Darlene Kvist of Nutrition, Weight & Wellness in Minnetonka, who says she sees many more celiac patients than she did when she started nutrition counseling 20 years ago, said, "I try to help them look at how many things they can eat: lots of vegetables, protein, fruit, good things. I don't focus on processed foods."
Is the gluten-free lifestyle hard on others in the household? Wojcik had a nice answer: "My husband likes it when I'm healthy."
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I found sex much improved post diagnosis when I wasn't always afraid of embarrassing GI "side effects" (and sound effects,
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I was told by my doctor (affiliated with the Mayo Clinic, no less) that taking supplements the first few months isn't actually all that helpful since your gut hasn't healed yet so you're not really absorbing them anyway. Our bodies don't process most of what we take in pill/concentrated form anyway. There was a study done a couple of years ago, I think at Hopkins, that concluded that North Americans have the most medicated, vitamin'd, etc., thus the most expensive, pee on the planet. The typical supplement-consuming American has more nutritional content going out daily than the average third world citizen has going in. Sad and stupid.
That said... taking a general multivitamin, a calcium citrate w/ vitamin d, and iron if you're female is probably a reasonable, and reasonably priced, thing to do. Just don't take the calcium and the iron together--they compete for absorption.
Maybe it's my science background but I'm wary of diagnoses in the absence of clinical tests. That might make me unpopular around here... I have no problem with people experimenting with their diets, etc., and becoming as informed as possible about their health and their choices, deciding to go gluten-free on their own, etc. But I'm *extremely* suspicious of alternative health care practitioners who are unlicensed, do not have to answer to any professional or peer review board, give multiple diagnoses in the absence of clinical proof (e.g. were you given a bone scan to verify the osteopenia?), *and* who charge hundreds of dollars for services that they say will be necessary for indefinite amounts of time.
Despite my youth, I have had ongoing back problems for years and have seen a number of massage therapists, physical therapists, chiropractors, etc. I met several who told me I was "just a bad back person" and would require (frequent, expensive) treatments for life to manage my pain. Then I saw a sports medicine/chiropractic doctor with actual credentials, extensive training, an ongoing research program, professional affiliations, etc. Within 3 months I was pain free and my back stronger than it has ever been. Real health care practitioners want to heal you. They're not afraid of "working themselves out of a job" if they're too successful--because they know for every patient they heal they've got a waitlist of referrals.
Sorry for the rant... some of my best friends are reiki people, lol... just angers me when I see people whose choices have been limited, rather than expanded, by their health care.
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Haven't been around here for a while but couldn't resist reading this whole thread. I've been gluten-free for almost 2 months and never thought I really had the "brain fog" everyone talks about (I'm in a Ph.D. program--my brains are my livelihood). Until, that is, I went out for Mexican buffet (!!!) a week ago with a well-meaning friend who suggested the place as low gluten. I was careful, but what does that mean at a Mexican buffet? I spent the afternoon totally spaced out. So, alas, there's truth to the brain fog thing after all.
I'm planning a gigantic gluten fest for once my degree's done though and I've got a few days to live with my spaced-out, air-filled consequences. (High on the list: a corner slice blondie from Blondie's cafe in St. Paul.)
Funny, but at the start of this diet, I never really would have considered myself a "bread/pasta/pastry/carb person"--my cravings ran more to peaches and salad and miso soup. I'd go weeks without bread or pasta and things and never miss them. Now after two months of this though, the smell of onion rings frying, pizza baking, or even those terrible buns from the sub chains has me ready to kill for a bite. Who would have thought I'd sink so low? Me, of the whole-grain granola-and-co-op set.
All those gluten-free cornstarch and rice flour proxies create a fog of their own, I say.
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May I just say I'm amazed by the brilliance of the posts in this thread?! Nuanced arguments backed by fascinating, careful research... amazing. I hope the gluten-free diet makes me so smart
I used to think I knew a thing or two about amino acids, etc. but dare not post a word on that stuff here after reading the previous posts. Instead I'll offer some humble advice as a vegetarian (2 years) turned vegan (3 years) then ovo-lacto-pesco vegetarian again (7 years) who since my celiac disease diagnosis a month ago (and cutting out dairy and soy) is now eating chicken, turkey and fish.
1) We are, from an evolutionary perspective, undoubtably carnivores.
2) Eating "happy" meats is good karma. As far as I'm concerned, animal flesh *ought* to be frighteningly expensive to eat.
3) The moral and environmental impact of eating flesh foods in reasonable amounts (reasonable meaning enough to live, i.e. no where near the amounts typically consumed in the U.S.) does not even approach the moral and environmental damage of my other vices (plane travel several times a year, riding in buses or cars several times a week, trading up my electronic devices every few years, etc.)
4) One way I've found to mitigate my guilt/reluctance/disgust about consuming flesh foods is to buy "happy" meat (organic, free range, etc.) from local folks at my local farmer's market. This way I engage in an ongoing relationship with people who truly care about what they do and who do it on a small and humane scale. Buying locally significantly reduces, I would argue, my environmental and moral culpability.
And finally... not an argument but... last night I was asking my better half, who brought home a bit of (ruinously expensive) turkey from the local co-op if the bird was "happy" turkey. "Sure," was the reply, "this turkey was so happy it laughed all the way to the bank and then with the proceeds sent its kids to a good college. At this price point, the turkey had better be happy!"
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3) Let your server know why you are ordering the way you are, but in laymens terms. A lot of people don't know what celiac is, and even less people are going to understand what you mean if you say you have a wheat and gluten intolerance. But I find it very effective to say, "I'm really sorry to be a pain, but I'm allergic to anything with wheat or gluten in it, so if you can just make sure they are really careful I'd greatly appreciate it."
I'm very newly gluten-free myself, and have only eaten out a few times yet (and survived the Minnesota State Fair!) But I'm already finding with friends and restaurant staff alike, that calling it a kind of wheat/grain "allergy" simply isn't doing the trick. People listen a lot more carefully and seem to take it more seriously when I say it's a disease, or an autoimmune disease. I.e., friends who a month ago saw me chowing down on waffles and panini are no longer asking why I can't just 'have a little", etc. I could be wrong, but I think restaurant staff are also more careful when they realize it's a big deal. (You probably could go overboard here and make it *too* big of a deal, in which case you might not get served at all because of liability fears. It's a fine line I guess.)
Have other people found this to be the case? Or is going the "allergy" (rather than "disease") route generally considered a more effective way to convey the gist of gluten-free to a general audience?
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I was given a list of vendors with gluten-free foods compiled by the local celiac group but I've misplaced it. I'm attending the fair on Thursday and will try to find and post the list before then (if someone who knows more than us posts it first!) As I remember, the list was rather scanty--they said a lot of vendors didn't get back to them in time for the list to be printed. So things that they know are gluten-free didn't make the vendor list. Apparently they're also going to have a table or something at the fair itself.
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I had read about how much improved (and much safer) the whole endoscopy procedure is now and how easy it is compared to in the bad old days. So it wasn't until I was hooked up to all the monitors a few weeks ago that I began to think maybe there was more to the procedure than I had planned...
Took a good couple of days to recover from the meds (and I had to teach 9 a.m. the next morning! Was so out of it I ended up 'fessing to my students that I'd had a "day procedure" the day before and was still recovering.)
Stay away from all the hard-to-digest foods (this includes pop!) for a couple of days too--you've just had several chunks of your intestine scooped away. I was amazed at just how sore I felt for a few days afterwards. Go easy on your guts.
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- I just got a rice cooker today and I made myself a big old crock of organic brown jasmine rice and steamed some carrots with a little soy margerine. It was really quite good! =)
I'm very recently diagnosed as celiac and know nothing about GERD--but I too bought a rice cooker as my "get well" gift to myself. And as a long-time vegetarian now finding myself having to eat a lot of fish and chicken (my only protein right now besides nuts) I can sympathize with the hating meat-with-no-ketchup thing. (I can eat ketchup, but sadly it doesn't help me like meat!)
My suggestion: The Ultimate Rice Cooker Cookbook (Open Original Shared Link .com/gp/product/1558322035/102-5691368-3916944?v=glance&n=283155).
Not explicitly for any type of restricted diet, but I've found it to be a huge source of ideas and easily-adaptable recipes. (And many recipes don't need any adapting to fit the diet!) I use my rice cooker one or twice a day now as a fancy slow cooker--breakfast porridges, for stews & soups, various rice dishes, etc. If your rice cooker has a timer, all the better--I throw stuff in the cooker and set the timer for breakfast etc., rinse it out, and throw more stuff in to be ready for dinner when I get home. A lot less frustrating to adhere to a diet when dinner's magically done right when you need it! I also find meat more palatable done in slow or rice cookers--you can flavour or spice it very mildly and everything loses that gross meat texture. Then I end up "hiding" the chicken or whatever in other things--quesadillas (no cheese or gluten of course!), shreedded in a rice salad, etc. My other suggestion--try lots of different types of rice. The short whole-bran rices are filling and really hold their own as stuffings, in salads, etc. I almost don't think of them as "rice" at all (which makes some psychological difference to me when faced with menu boredom.)
Hope this helps!
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Thanks, all... for the reality checks and the encouragement and the food recommendations. This board, and the gluten-free community in general, have been really great--I've been lurking for weeks reading other posts while I nibble my celery and peanut butter. I'm in St. Paul and tried to hook up with the local groups but the one never returned my messages and the other doesn't seem to meet regularly. (Although they will be at the State Fair. Cool!)
I went for a walk this evening with the puppy and found my sense of humour again.
I think the thing that surprises me most about life post-diagnosis is just how hard I'm taking it. Since my early teens I've been a bit of a food activist and adhered to various diets for health, environmental and political reasons. My father works for a huge, multinational-owned meat company and meat was always available in our house--meat *was* the meal. Going vegetarian at 16 was tantamount to treason. My family was sure I would die of some horrendous, vegetable-caused disease before my thirties. (Oh, the irony!!!)
So this new diet should be a piece of (flourless) cake for me. As my grandmother put it, I'm already "used to eating all those strange foods." And yet some days I just feel blindsided by the whole thing. Maybe it's the not-by-choice thing. Maybe it's the no-cheating thing.
Anyway, glad to hear I'm not the only one who's felt this way. Thanks again for the replies!
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So... it's been three weeks gluten-free, complete with detailed food diary, etc., etc. I've even cut out diary and soy, which, for this mostly-veg sporty type, is even *more* difficult than giving up the gluten.
Before the biopsy, I followed what I think is a fairly typical arc: I binged on everything I couldn't eat for a couple of weeks, got really sick, got fed up with myself and all that gluten, had the biopsy (unequivocably celiac), got sad, got resolved, broke the news to friends & family in a witty, upbeat way, began my gluten-free "lifestyle" (why do they call it a "lifestyle" anyway? As if this is like taking up sailing or Christianity or something), and now, folks... I'm so over it.
The food's not all that bad, really (the trick, I find, is not to expect it to taste like the thing it calls itself: "French rolls" my a$$) But I'm tired of thinking about everything I put in my mouth. I'm tired of scrounging around for protein sources. I'm tired of still feeling unwell (if anything, I'm *more* aware of my symptoms now than when the doctors and I didn't know what the hell.) I don't want to talk about it with my oh-so-supportive friends who wonder 'how's it going?' Because it's just a diet, right? Not a big deal, right? I was always one of those people who secretly thought people with food intolerances (peanut allergies excepted) were usually attention-seeking whiners.
I'm over the whole having a disease thing. I'm over the diet. Where do I sign up to be normal again?
And does anyone know of a gluten-free non-dairy, non-soy beverage (i.e. rice or almond) with more than 1 or 2 g. of protein per serving? Cause I'm drinking a lot of smoothies while I figure out my way back to normal... or at least out of this latest stage of "coping".
Any Long Term Studies On Gluten/cc & Risks?
in Related Issues & Disorders
Posted
Right--unless you purposely glutened people occasionally in a lab environment and then marked the effects over a period of years. Which no one would get IRB approval for anyway--hence relying on subjects' self reports, food diaries, etc. as a proxy for lab glutenings. Like for the two above studies you linked, what does it mean to be "gluten-free" exactly? How strictly (or not) are the diets being followed?
Not that I'm a cheater--I just find it maddening not to know what the correlation is between exposure and risk.
Thanks for the links!!!