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pmrowley

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  1. I regularly take Centrum as a general supplement multivitamin, and make sure I keep to a balanced diet. Other than that, as others have said, a gluten-free diet is actually very healthy, as you tend to cut out a lot of unhealthy processed foods at the same time, and substitute lots of fresh fruits and vegetables and whole grains. If you have a Trader Joe's nearby, it's heaven! My wife does not have celiac disease, but she shares my diet, and has said she feels much healthier and energetic as a result.

    An aside, something that my wife and I have both discovered recently, is that we were both B12 deficient. (Grooves on the fingernails, missing half-moons on one or more fingers, starting from the pinky, confirmed by bloodwork.) Of course, this could be unrelated. In my case, it might be linked to celiac disease, in her case, could be another malabsorption condition. Apparently it strikes about 40% of the population. We both take sublingual B12 supplements, and it's reversed the process.

    Cheers,

    -Patrick

  2. One of the things I almost immediatly explain is that...

    "it is an autoimmune disease like lupus or MS.  When I eat gluten, my body responds to it like it's poison. Antibodies are sent out to destroy it but can't tell the difference between the gluten and my bodies healthy cells so they start to "kill" my own body parts." "Like when you have MS your antibodies can't tell the difference between your own nervous system and a virus, bacteria, or cancer cell. so they basically eat the nervous system."  People get it right away and I have no problem.  The only question I get somtimes is, "can I have a little, will just a little bit hurt me?"  I answer "Whether it's a gallon or a speck of gluten my body still sends out the same amount of antibodies.

    Wendy, that is one of the best responses I've ever seen! I think we really do ourselves a disservice when we downplay our condition as an "allergy" or we're on Atkins. Granted, the recognition of those diets has made it easier to find gluten-free meals, but if we're ever going to really be taken seriously, particularly when it comes to food labeling laws in the US, we need to educate the masses, one person at a time.

    Believe me, over the last 25 years, I OFTEN get tired of explaining myself. But, I try not to be on the defensive, because that immediately weakens my position. I'm NOT apologetic; I didn't CHOOSE to have this condition, any more than I chose to be a male. I was dealt a genetic hand, and I play it the best I can.

    People who have been "cured" or hear of cures, are most often speaking of TROPICAL SPRUE, which is a curable infection. And then there's the "refractory" period that some people experience during adolescence. Most likely, the "cured" people just decided to abandon the diet, and are ignoring the damage they're doing to themselves.

    Cheers,

    -Patrick

  3. Agree with Kaiti. There is a large amount of evidence that Gluten is toxic to everyone, just to a lesser degree. As long as you maintain your balance, there is nothing wrong with a gluten-free diet. My wife has been sharing my gluten-free diet for about 4 years now, and she feels healthier for it! (Aside from the few times we go to a restaurant, and they have fresh-baked sourdough on the table! I always envy that one...)

    These days, there are LOTS of alternatives, even for restrictive diets. Many people who cannot deal with regular sugar can still digest fructose, fruit sugar. Frookie makes cookies that are sweetened with fruit juices, rather than regular sugar, and they also make a gluten-free line. There are rice-based pastas that are better tasting than wheat-based pasta (Pastariso) and alternative grains such as Quinoa, that are very high-protein and quite tasty (Quinoa cooks like rice, but has less starch. Very tasty as a side dish with a little gluten-free soy sauce!)

    Many gluten-free foods tend to be VERY non-allergenic, since most people who are trying to stay gluten-free are also staying away from things like eggs, lactose, or simple sugars. My advise is to troll around some health food stores (Mother's Market and Wild Oats are my particular local favorites) as well as the web.

    Cheers,

    -Patrick

  4. Well, um, no. I have been mostly gluten-free since Dec. 04, and last night I ended up with lower GI problems last night. Today I suddenly and briefly got all red and itchy and hot on my hands, my elbows, my face, my feet, and the backs of my legs. :blink:

    Well, there's no doubt that I need to not be eating that stuff. But it's also kind of depressing. I guess it is normal to get down when it's hitting home that this is for real, for the rest of your life.

    I know, it's hard, but you're going to feel better afterward. Take that meal as your wake-up call. Time to stop being "mostly gluten-free," particularly with the proof of the swab diagnosis. You need to go 100% gluten-free from now on, with no cheating, no breaks, no temptations. Go to a large health food store, and start shopping! :D

    One thing to keep in mind, it DOES get easier with time! Now we just need a Senator with Celiac, to really get this condition out into the open!

    Cheers,

    -Pat

  5. Things like this always piss me off. As I have complained about before, people with peanut allergies got all of the airlines to stop serving peanuts on the planes, because some people are so sensitive that they could go into anaphylaxis by just breathing in aerosolized peanut oil. But WE'RE the ones who are strange, hyper-sensitive, etc., when we ask for special handling of our food.

    The biggest problem is that with all of this, our outward reactions aren't necessarily noticeable, and they tend to be delayed, since this isn't an allergic reaction. The jokes about "using the same spatula but you didn't get sick" are exactly the problem. THEY don't see us bazooka-barfing right after ingestion, so they assume that we're fine. However, when we get home, and are wracked with cramps, bloating, etc., they don't see it.

    Sometimes, we have to be tough, and get into someone's face about it. For example, how many times have you ordered a Caesar salad from a restaurant, asked for them to toss it in a CLEAN BOWL, because you can't eat the crutons, and it comes with OBVIOUS crumbs in the dressing? In these cases, I go to the manager, and explain what has happened. More often than not, they're chagrined about the whole thing, particularly if it's a restaurant that professes to have a gluten-free menu (Fleming's Steakhouse in this case.) I've gotten very expensive meals 100% comped in the past for just that reason. As a matter of fact, I really let a coworker have it a few weeks ago, when I mentioned to him that he always picked Italian restaurants for lunch, and that it really limited my food choices. He said something snide about my diet, so I unloaded on him for 15 minutes with my abridged 25-year history of dealing with it. After my tirade, he said, "Oh, I didn't realize this was a life-or-death thing. I'm really sorry." Since then, he's been a supporter.

    Sdore, you really have to insist that the ones who are close to you heed your wishes. Jokes about sensitivity, etc., are deal-breakers in my book. Make them understand that it's hard enough to stick with the diet on your own, but jokes about it are counter-productive. THEY don't know what the internal reactions you are dealing with are. They don't see the massive immune response attacking your insides. They don't understand that we react to MOLECULES of gluten protein, not teaspoons. Do any of them have allergies? How would they feel if you made fun of them for being allergic to your cat? (hypothetically :) ) They can't control their allergies, other than avoiding the allergen, any more than you can control your condition, other than your diet. There is NO COMPROMISE with this. Make them understand that this diet is 100% exclusion or it's worthless, and your health suffers for it in subtle, but insidious ways.

    You REALLY need to lay down the law with your boyfriend. He needs to support you, stick up for you, and help provide a united front. Anything short of that is unacceptable. Educate him, so he realizes just how important this is to your long-term health. He doesn't have to share your diet (although when cooking for just the two of you, it sure helps. Making a single pot of gluten-free pasta is much easier than dealing with multiple pots, with dedicated utensils, and it's healthier anyway!) My wife tends to get much more angry at food ignorance than I do, once I've made my point and they're still not getting it, and it's kind of nice.

    Above all, DON'T be ashamed of your diet! Particularly these days, when EVERYONE has a special diet of some kind! That was my problem for a long time. I was apologetic for the trouble I caused, and I didn't protest if I had to abridge my meal because all I could safely eat was a salad. Then, I finally got angry and started pushing back when someone pushed me around. At a barbequeue, I ask that my food be cooked first, right after the grill is cleaned, and the utensils aren't contaminated. The first couple of times, they looked at me a little strangely, but I explain my condition, and they cheerfully comply. I get a little militant at restaurants at times, talk to the manager about my diet, and make the wait staff EARN the tip (which I usually do at 20%, for the extra trouble.) After a while, it felt as though a great weight had been taken off of my shoulders. Confidence counts for a lot. Apologetic embarassment usually leads to minimal effort in complying with your wishes. A confident request tends to have more weight behind it.

    Cheers,

    -Pat

  6. I actually had to go to the ER about a month ago for some abdominal pain that wasn't going away (thinking appendicitis, yikes!) it ended up being nothing, but while I was there, they hooked me up to an IV. Of course, beforehand I had talked to the doctor, explained my conditions ("I have Celiac." "What, sprue?" "Errr, yeah." [never mind that "sprue" is an OLD term that is rather a misnomer these days....] "Oh yes, I know all about it...")

    So, what do I see when they bring in the IV equipment? A bag of Dextrose. I mentioned to the tech that Dextrose IVs can be dangerous to people with my condition, depending on the makeup of the dextrose, and that it's not controlled. He raised his eyebrows at me, almost protested, then went out to check. About 15 minutes later, he came back with a saline bag.

    Of course the question is, after I had talked to the doctor, why he sent the tech in with a dextrose drip? I thought he "knew all about it..."

    Needless to say, that particular visit to the hospital ended up being a nightmare, due to several other issues, like drugging me to the gills with some narcotic, when I mentioned that I had pain of about a 2 on a scale of 10, and my poor wife sitting in the hospital with a completely incoherent husband. We've filed a formal complaint with the hospital and Blue Cross, we'll see what happens... But imagine if they had changed staff, and someone had hooked me up to a dextrose drip while I was incapacitated??

    -Pat

  7. Okay, I'm going to be a little harsh here, so bear with me. Sometimes, a little tough love is needed. I'm not going to whitewash anything here, so if you don't want to hear it, don't read any further.

    First off, Let me say, I know how you feel. I was diagnosed with celiac disease 25 years ago, when I was 9 years old. I also have asthma, likely linked to my celiac disease, since autoimmune conditions tend to go hand-in-hand. I always use to think, "Why is all of this happening to me? It's not fair!" I tended to get depressed, particularly at lunchtimes at school, looking at a plain rice cake, an apple, and maybe a can of vienna sausages. Lunchtimes sucked, dinner sucked, breakfast sucked, snacktimes sucked, birthday parties were unbearable, and I could never go to McDonald's and get anything other than fries.

    What did I do? I got over it. I realized that this diet was a fact of my life, and I could either live with it, or ignore it and be miserable and in poor health forever. I realized that my condition wasn't nearly as serious as something like blindness, missing a limb, paralysis, cancer, etc., and that tens of thousands of people live their whole lives with harsher problems. Gluten-Free foods are 100 times easier to find these days than they were 25 years ago. (No support websites in the early 80's!) People are far more accomodating now, particularly as this condition gets more attention.

    I think you might need a little perspective. I'd suggest visiting a Children's hospital, and seeing what some of these kids have to deal with every day of their young lives. All in all, our diet isn't really such a bad thing, when you really think about it. Yes, it's daunting, particularly in the beginning. Ask for help. Explain your condition to your coworkers, family, friends. Don't keep it a secret! I think you'll be surprised as to how nice people can be, once they understand the facts of the condition, and realize the seriousness of the situation. DON'T be ashamed of it! People with peanut allergies pushed to the point where I can't get peanuts on airplane flights any more! Don't let yourself get pushed around, and don't get tempted to cheat. You really need to ask yourself, and then be truthful, why you ate those cookies. Accident? Do you really think that? You know darn well that those cookies weren't gluten-free. You cheated, and were hoping you wouldn't get "caught." Unfortunately, we always get caught, regardless of whether anyone is around or not.

    Gluten is poison to us, pure and simple. You must make a conscious decision to deal with it. If cookies are a temptation, buy a box of gluten-free cookies and keep them in your desk. Absent-mindedness is forgivable for a while, particularly when you're starting out, but if you're going to heal, you need to do this full-force, for the rest of your life. Like Yoda says, "Do or do not. There is no try."

    -Pat

  8. Wendy,

    You're exactly correct about reactions becoming worse the longer you are gluten-free. That's extremely common. If you think about it, it makes sense; an untreated Celiac has almost no absorptive surface in their small intestine. As we heal, the absorptive surface becomes larger and larger, meaning that if we get a dose of Gluten, we get a HUGE dose for our immune systems to attack, making us sicker than before.

    A few years ago, I had a slip-up that had me sick for an entire week! That's one of the biggest reasons why people who "fall off the wagon" think they can keep falling; the initial reaction when you slip up will usually be very violent, but further reactions will taper off if you continue to consume gluten, as the damage reaches a "stable point." (I.e., The destruction to the villi has become so extreme that almost no absorptive surface exists, therefore you're absorbing far, far less gluten to react to. )

    Cheers,

    -Pat

  9. I would suggest taking a trip to your local health food store. (Personally, I've never heard of an all-gluten-free store, and I'm in liberal So-Cal!) I would suspect that the bread crumbs were the culprit. What was the brand?

    There are TONS of great pre-made, convenient foods that are gluten-free that you can find in stores like Wild Oats, Whole Foods and Mother's Market:

    Pastas: Pastariso, Ancient Quinoa Harvest), Ener-G (I don't like this brand as well for pasta)

    Pasta Sauce: Classico Sauces are ALL gluten-free. Carried at Ralph's and Kroger

    Bread: I LOVE Food For Life rice bran breads. They're awesome, and they are great for breadcrumbs.

    Ener-G Foods: Doughnuts, Cookies, Pretzels

    Glutino: Pretzels

    Frookie: Gluten-Free Chocolate Chip Cookies, Gluten-Free peanut butter cookies

    Health Valley: Rice Bran graham crackers (great for a pie crust!)

    Thai Kitchen: Soups, noodle dishes, Pad Thai; Read the labels, most are gluten-free.

    Trader Joe's carries some GREAT premade meals that are gluten-free:

    -3 cheese enchilada meals

    -Tamale Meal

    - Chicken Bowl Meal

    - 2 kinds of Thai Curry with Rice - microwave in 2 minutes! Add some premade Just Chicken or Just Salmon for a quick, healthy meal.

    - Tuna Panang Curry - 2 Minutes, use with some of their premade brown rice.

    - Cheese fondue, along with some fresh veggies and Healthy Ham

    Other great Trader Joes stuff:

    - Hummus with Trader Joe's Savory Rice Thins

    - Yogurt

    - tomato-based queso dip that is INCREDIBLE! and low-fat, low-carb.

    -Hormone-Free meats (including a GREAT marinated Tri-Tip roast)

    All McCormick spices are gluten-free, unless expressly indicated.

    DON'T skimp on the vitamins! Especially beta-carotene.

    Grooved fingernails is indicative of B12 deficiency. Not surprising in a Celiac. I use sublingual B12 supplements to compensate.

    Don't give up! There's a lot of stuff out there, you just have to look for it.

    Cheers,

    -Pat

  10. Wow, lots of stuff going on here. I can't remember 6 pages of stuff, but I'll hit on the things that strike me (after dealing with celiac disease myself for 25 years:)

    Yes, being diagnosed with celiac disease is a life-changing event. It's also a life-saving event. Personally, I don't really see the need for a full diagnoses in some cases; if you feel better on a gluten-free diet, why go back? (You're not doing yourself any harm, and you could be doing yourself a world of good!)

    One of the keys to making this successful is to get the family involved in the diet. My wife, who is NOT a celiac, shares the majority of my diet. She does have her own bread, and a dedicated toaster. When we go out, she'll have the bread that's given at the table, and she'll generally order whatever she likes from the menu. However, the rest of the time at home, we prepare gluten-free meals if they're to be shared. Nowadays, there are so many gluten-free items that are just as good, if not healthier, than the "regular" foods. gluten-free pastas are usually made with whole gluten-free grains, etc. Keep in mind that gluten is toxic to EVERYONE. We're just far more sensitive than most people. My non-celiac disease wife feels healthier now that she shares my diet, and tends to stick to it more and more, even at restaurants.

    Remember, there is no "cheating" this diet. Do or do not. There is no try. Accidents happen, but they should be reduced as much as possible. Never exacerbate the condition by "falling off the wagon" more. You'll be miserable, and unhealthy.

    gluten-free Beer: In the UK, you have HARD CIDER ON TAP!!! Do you know how lucky you are??? Forget beer. Strongbow Cider is the best ever. Avoid Woodpecker and Hornsby's. They are NOT gluten-free. Wyder's, Woodchuck and Ace are all gluten-free.

    More later, gotta hit the road.

    -Pat

  11. LaChoy also produces a wheat-free Teriaki sauce. Chun King Soy sauce is also gluten-free (last I checked. I haven't seen it in a while.) STAY AWAY FROM KIKKOMAN! I have a little bottle of LaChoy in my desk, for those times someone in the office suggests sushi. :)

    As far as I can tell, French's Worchesterchire sauce is gluten-free as well. (No reactions from me, and the ingredient list is safe.)

    As for comfort food, if you're a pasta person, there are several GREAT lines of gluten-free pasta. Combine those with a nice pasta sauce and you're set (I really like the Classico line of pasta sauces; all are gluten-free. Their Sun-Dried Tomato and 4 Cheese Alfredo sauces are to die for! Mix in some chicken and top on some Pastariso Linguini [below] and you have a meal that beats anything from Olive Garden or Macaroni Grill!

    -Quinoa Harvest (RED STRIPE ON LABEL. The ones with the BLUE STRIPE on the label are whole-wheat.) This is a great, high-protein, high-fiber line of pasta. Quinoa is mixed with corn to give it its unique nutty taste and high protein content. I really like the shells and elbow pastas. My non-celiac wife loves this stuff too.

    -Pastariso Rice Pastas. Spaghetti, Linguini, Lasagna, Rotelli. For the spaghetti-style stuff, I prefer this brand. It has the best consistency, I think, in comparison to the Quinoa Harvest spaghetti noodles.

    The key is to READ EVERYTHING. Even when a manufacturer states that their stuff is gluten-free, I check the label.

    I would suggest taking a trip to your local health food store, and take a look around. There's LOTS of stuff to choose from these days, including gluten-free bread from Food For Life, and doughnuts from Ener-G Foods. Usually, the people who work there know enough about a gluten-free diet to help you out. Mother's Market, Wild Oats and Whole Foods are particularly good, at least in my neighborhood.

    Cheers,

    -Pat

  12. I've been a lurker on many Celiac forums for quite a while, and finally decided to "take the plunge" after checking out these forums for a couple of days. (You'd think I would have been more active sooner, as I've been a diagnosed Celiac for over 20 years now.)

    A little history: I was bounced around from doctor to doctor when I was a kid, and underwent hundreds of tests to try to figure out why I wasn't growing, when I was supposed to be right in the middle of my pre-adolescent growth spurt. I was finally referred to the UC Med Center in San Francisco, where some experimental studies were being performed on a new diagnosis technique for celiac disease: Non-surgical intestinal biopsy. I think I was the second or third patient to undergo the procedure, and during the 8 weeks and 3 procedures during the diagnosis process, I saw a couple of evolutions of the biopsy device itself. (And was filmed for posterity during my first biopsy.)

    Fortunately, I have a fairly mild case, from what I understand. On the RARE occasion that I have a contamination event, it usually results in about a day's worth of discomfort (mostly upset stomach symptoms.) Of course, as I've been on a total-exclusion diet for most of my adolescent and all of my adult life, I might have a more resilient gut at this point. ;) I just recently took the plunge and re-introduced oats into my life. I never thought I'd be so happy to have a bowl of oatmeal!

    Needless to say, Can't say I have all or even many answers, but I do remember when gluten-free foods were few and far between, never mind eating at a fast-food restaurant! I'm used to having people look at me strangely when I explain my condition, but the advent of the Atkins diet has definitely made things easier in that regard. No longer do I get the crazy looks when I ask for a burger with no bun (and Protein-Style In-N-Out burgers are the BEST!) or ask for a salad, tossed in a clean bowl with no crutons. Hopefully, the day will come when Celiac is viewed in the US as something as important as a peanut allergy (and who didn't cringe when that happened, and all of the in-flight snacks on airplanes became Pretzels?!)

    One thing I will mention though, to those who have tried a gluten-free diet, and are looking for a solid diagnosis for celiac disease; if you feel better being on an exclusion diet, why worry about the diagnosis? My wife, who is not celiac disease, joined me in my diet when we first started going out together. To this day, she says that she feels better and healthier on a gluten-free diet, regardless of whether she's a diagnosed Celiac or not. (Of course, she still eats the Fleming's Steak House creamed spinach, as her one concession, of which I am jealous of her to no end!)

    Cheers,

    -Patrick

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