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  1. 34 points
    You have been diagnosed and you do not know what to do next. First, do not panic! and Welcome to the Forum! I have posted this information in pieces and parts on this site during the past year so many times and some newbies suggested it would have been helpful if they had seen it ALL --right away after they were DXed.... so, I thought, why not paste it all together in one spot? Don't think about what you cannot eat--think about what you can eat: Fresh meats, veggies, fruits, nuts, eggs, fish, etc. Some celiacs are lucky and can tolerate dairy right now, but many of us had to give it up for a few months. Why? Because lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tips of the villi. When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become “lactose intolerant.” This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again. Learn how to read Labels. Dietary concerns –LISTS OF safe and unsafe gluten free foods http://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html DISCLAIMER!! The following suggestions ---are just that: suggestions. I have no affiliation with any of these websites, organizations, authors, or companies and I am not a paid spokesperson and I am not endorsing any specific products. They just worked for me or other members. I am not a doctor and this is not medical advice. I am not a nutritionist. I am just a fellow Celiac who learned the ropes from months of research and from the generous and compassionate contributing members of Celiac.com And, as my wise friend, KarenG pointed out, I should say this info applies to those of us in the US. I cannot say what companies in other countries do. Some resources for negotiating a gluten-free life: Living Gluten Free for Dummies--Danna Korn Celiac Disease: the First Year by Jules Dowler Shepard Cecelia's Marketplace Gluten-free GROCERY SHOPPING GUIDE http://www.ceceliasmarketplace.com/gluten-free/2012-2013-gluten-free-grocery-shopping-guide/ A quick “get-started” menu for gluten-free eating follows, but it is by no means "inclusive", just some ideas. Consult the many on-line gluten-free recipes available and the many wonderful contributions from our members in the cooking and baking sections of the Forum: FLUIDS: Drink a lot of water. Celiacs are dehydrated from malabsorption. Plus, it helps cleanse toxins from body tissues and organs and keep the bowels running smoothly. But, yes, (because I know you are going to ask ) unflavored coffees and tea are okay. Check teabags for "malt" --sometimes they use it. DIGESTIVE ENZYMES help if you have pancreatic issues that cause trouble when digesting fats and proteins. A good one is Digest Gold, but others may have suggestions as well. Probiotics are very beneficial to restoring healthy gut balance. Choose a multi-strain variety like Florajen3. All the digestive issues like acid reflux (GERD) and heartburn, excess gas, camping, diarrhea and constipation should disappear or diminish on a gluten free diet. VITAMINS: Most doctors (and fellow celiacs) recommend a good, gluten-free multivitamin. Some of you will have vitamin/mineral deficiencies or B-12 or Folate anemia--and you should have blood work done to see where you stand. Malabsorption creates all sorts of problems. FOLLOW UP CARE: I suggest follow-up care from a celiac-savvy doctor to everyone post-DX. Lab work ( including CBC, CMP, SED RATE, IRON/FERRITIN levels, B-12, Folate levels and THYROID panels) and barium studies of the GI tract, if warranted. Do not be afraid to ask your doctor.(IMHO) A whole foods diet is suggested to many of us as the best way to speed healing of your gut lining, but many people succesfully incorporate Certified gluten-free products into their diets right away! As with all things regarding Celiac, everyone is different. Earth Balance (soy-free) is a good choice if you cannot have butter. You need some good essential fatty acids: Safflower oil, sunflower oil, extra virgin olive oil, coconut oil. Some Breakfast ideas: Erewhon crispy brown rice cereal or gluten-free Kellogg's RICE KRISPIES, gluten-free CHEX corn or gluten-free CHEX Rice cereal, gluten-free CHEX honey-nut or gluten-free CHEX Cinnamon Add: rice milk, almond milk or coconut milk (The So Delicious brand is excellent) and add berries or sliced banana. CERTIFIED gluten -free oatmeal w/cinnamon (glutenfreeda brand, Bob's Red Mill are a few examples) NOTE: It is my understanding that Quaker Oats are cross-contaminated! Some celiacs cannot DIGEST oats. Only you can decide. Gluten-free muffins made from a mix or purchased. Eggs and bacon or sausage with gluten-free toast or bagel (Kinnikinnick, Udi's, Glutino or homemade bread) Pocono Cream of buckwheat --it's good!! (no worries--Buckwheat is not from the wheat family) Amaranth pancakes w/pure maple syrup (bottled syrups can contain gluten) gluten-free packaged pancake/waffle mixes (Pamela's brand is very good as is Bob's Red Mill –we use BRM on the site, for short) Van's frozen waffles. FRUITS and VEGGIES—eat plenty of these daily in your diet. LUNCH and DINNER ideas: Leftovers from last night's dinner make an easy lunch Some Progresso soups are gluten-free. Check the label! Some Pacific and Imagine brand soups. Read the label! A sandwich with gluten free bread or rolls—UDIs, Rudi's, Glutino Genius, Scharr's and Canyon Bakehouse --all have decent packaged breads, rolls and bagels, but homemade is the way to go. (I have a simple recipe for white sandwich bread that is delicious if you want it.) A big salad or an antipasta with tons of veggies and grilled chicken or shrimp and Hard-boiled eggs/ with gluten-free or homemade vinegrette dressing. A list of gluten free salad dressings is available online. Marzettis, and most of WishBone and Ken's are okay. Homemade is best! Homemade vegetable minestrone ,chicken soup, stews, black bean or White bean chili (use gluten-free stock--pacific, imagine or make your own from scratch--even better!) Chicken or bean nachos (can use corn tortillas) Red beans and rice grilled burgers and beans (Sweet Baby Ray's BBQ sauce and Bush's Baked Beans are gluten-free)on a bun (Udi's makes hamburger rolls now or you can make your own. CHEBE bread mix makes killer rolls) almost all mexican food is safe (just no flour tortillas!) Pasta and sauce w/meatballs (brown rice or corn pasta) TINKYADA BRAND penne pasta is delicious! Cook 13 minutes exactly. Trust me!) and use gluten-free breadcrumbs (purchase or just grind some gluten-free bread and season)in your meatballs Another good pasta is CORN pasta. BiAglut or Sam's Hill are a couple. Cook as directed. meatloaf (beef or ground turkey) baked potato or yams, green veggie of some kind Other proteins: roasted or grilled chicken, turkey, pork, beef, salmon, talapia, scallops, lamb, some sausages are safe, bacon (Check labels) Vegetarian chili--homemade. I eat a variety of veggies.....whatever looks fresh at the super market or farmer's market or stands...steamed, grilled--- or roasted root veggies in stock. Sweet potatoes—baked at 350 degrees in a pan for 45-50 mins.--are yummy Potatoes—roasted, grilled, in a gratin or whipped with milk Fritattas with veggies and salad Stuffed peppers—with ground turkey, beef or lamb and rice ANYTHING GOES!! ANY recipe you already use can probably be altered--just use gluten-free breadcrumbs or rice/corn pasta ---use any flour made from amaranth, corn, bean, etc...just NO WHEAT, RYE OR BARLEY or cross -contaminated OATS. Snack ideas that are safe and handy Cozy Shack Rice Pudding or Tapioca cups (in the dairy section) All natural applesauce cups Gluten-free cookies or muffins (Bake them or buy them.) Pamela's Baking Mix is versatile and good for cookies, baked goods. There are many options (check the recipe and baking section on the forum) Bagel with cream cheese and jam or nut butters. Udi's and Glutino bagels are pretty good (frozen section) Pamela's and King Arthur gluten-free--makes a very good brownie mix too! Chobani Yogurt or So Delicious coconut milk Yogurts- if you cannot have dairy Scharr cookies (chocolate-dipped shortbread or the mocha layers--are VERY tasty!) Lundberg rice cakes or sliced apples and celery sticks with natural peanut butter or almond butter or hummus smeared on Mary's Gone Crackers, Crunchmaster's or Glutino crackers with cheese or peanut butter BOAR's Head or Applegate Farms deli--ham, turkey, pepperoni, salami, proscuitto--most all cold cuts and cheeses Slices of cantaloupe wrapped in proscuitto Watermelon with crumbled feta cheese Peanuts, almonds, cashews. (I like Blue Diamond or Nutsonline.com has a HUGE gluten-free selection of nuts and flours) SUNMAID raisins, prunes. Craisins by Ocean Spray. (**some raisins and dried fruits are dusted with flour to keep them from sticking but these brands are safe.) Smoothies- made with coconut milk, various fruits, yogurt, etc. Potato chips----like Cape Cod, Kettle Brand, Utz Indiana Popcorn--comes in all flavors--the kettle corn is delicious Glutino brand pretzels—they come in all flavors even chocolate -coated Coconut milk, creamer and ice cream ( So Delicious brand is very good) Ice Cream, if dairy is not a problem for you. Most Haagen Das flavors are good, for example. READ LABELS!!! Organic Corn chips w/salsa, hummus, or Guacamole Sunflower , pumpkin or flaxseeds Candy—Hershey's kisses or regular size bars, regular size Reese's cups, Snickers, York peppermint patty, Health Bars, Butterfinger and M &Ms plain and peanut. Ghirardelli squares. These were safe--last I read online--but READ LABELS! Enjoy Life chocolate chips, chunks and Boom Choco Boom bars (free of ALL top 8 allergens) Make some Chex mix with gluten-free chex cereals gluten-free Rice Krispies treats (recipes are online) CHEBE pizza and breadstick mixes—are very good. Against the Grain and Glutino make some good frozen pizzas. Check the labels of all packaged products-- if they were made with wheat or gluten, they will state so on the package. Very important: Cross-contamination is the bane of our existence. Learn how to make your home safe. http://celiacdisease.about.com/od/cookingglutenfree/a/crosscontaminat.htm Hidden sources of gluten: http://www.practicalgastro.com/pdf/September08/HlywiakArticle.pdf Packaged/processed Foods: A package stating a product is “Gluten-free “ does not always guarantee it was processed and manufactured and packaged in a dedicated facility. It may just mean they did not knowingly put gluten ingredients in the product. I, personally, look for the GIG (Gluten Intolerance Group) circle stamped on the package –it is a big G F in a circle. That's just me. I also use common sense. I know that foods that are inherently gluten-free will not carry a gluten-free label on them (oranges, broccoli, plain cheddar cheese, etc.) Some DEDICATED gluten-free facilities are listed below. There are others. Google away! : Glutino Bob's Red Mill gluten-free 1-2-3 Meredith's Marvelous Authentic Foods gluten-free Pamela's Cause You're Special Udi's The Cravings Place Andean Dream Kinnikinnick Organic Nectars Namaste Orgran Foods by George Gluten-free FULL FLAVOR Gravy Packets Prana Bar Enjoy Life EnergG Gillian's Against the Grain Many other companies will provide a list of gluten-free foods. The members on here can tell you which ones are good about this. They make all kinds of ready made mixes and flours to make it easy to start baking. The cooking and baking section on the forum has thousands of great ideas—these guys are amazingly creative! That should get you started--- until you can create your own diet and menus and feel less "dazed and confused" by your new life. You're going to be okay! Best wishes! IH
  2. 11 points
    This particular forum on celiac.com is described on the main page thus: It is not intended to be about products that are labeled gluten-free. If it were that simple, we would not need this discussion forum. Here, in the Gluten-Free Foods, Products, Shopping & Medications section, we talk about products that are not labeled gluten-free, but which in fact are, for all reasonable purposes. Since the forum opened eight and a half years ago, there have been 12,653 topics started by members here. Obviously there is an interest, if not a real need. We post here to help each other with practical advice. We know there is always a risk of contamination when you buy a prepared food from someone else. We know that, even when a food is labeled gluten-free, there is a chance of contamination--we just know that the level is below a certain limit. It may, in fact, be zero. You just can't prove that.
  3. 10 points
    Today is a good day, today at our local festival I entered my gluten free chocolate cream pie, and you wanna know what.......I took first place!!! I just had to share this with people that understand the frustrations of gluten free baking, finding tricks that work for you, and then success!!! This has been one heck of a journey, and not everyday is this great, but everyday I come on to this forum, read other peoples stories, ask for advice, or just feel comfort from people who know exactly what this truthfully feels like. So dear friends I wanted to share this little triumph, everyone have a great weekend!
  4. 9 points
    I find it extremely offensive that you are saying we should not have children. There are a lot worse things that we can pass down to our children than celiac. Things like racism, cruelty, self pity, selfishness, ignorance, immorality well the list is endless. My being celiac and all the years when I struggled with pain and in poverty gave my children a strong work ethic, even when I could barely crawl out of bed I went to work every day for years. It gave them a sense of compassion for others suffering. It gave them the desire to get a good education and to help others in any way they can and one went into a medical field because she saw my struggles and it gave her the desire to help others. Life is what you make of it no matter what your illness or shortcoming. There are much worse things to pass down to your children than celiac. I wish I could have had more children and do not for one minute regret that I passed down celiac to them. What I did give to them far outweighs the inconvience of having to deal with a celiac diet. And I greatly look forward to having grandchildren when my children are ready to have them whether they are also celiac or not. As for your son's sadness he may be going through withdrawl and there is no reason why he can not have a burger and fries. They just have to be gluten free. I really hope you are not telling your son's that if you had known they would have celiac you would have chosen not to have them. That would be extremely cruel and border on abuse.
  5. 8 points
    I pretty much get sick if I am at a party and make eye contact with someone who was thinking about cookies that contain gluten. I am also the single most paranoid person I know. Having grown up on a farm I can say with 110% confidence that you are so far beyond paranoid and have gone so far beyond the realm of science that I don't even know where to start. Chicken is fine. I'll leave it at that.
  6. 8 points
    You look at the ice cream guy with a pained expression and say "Sorry about my friend. She won't believe that she's an @$$h*le until her psychiatrist tells her she is." Then order the gluten-free cone.
  7. 8 points
    One of the basic tenants of a celiac diagnosis is to also try and exclusionary diet to find other foods that might cause you issues, as many celiacs also react to milk, corn, oats, soy, etc., but these are considered separate intolerance issues and not part of celiac disease. The fact that some celiacs can't tolerate corn is not new news, and I've writing about this for many years on this site. Take care, Scott PS - Which is why on The Gluten-Free Mall you can filter out those items and sort products by those other ingredients.
  8. 8 points
    Sadly, you can lead the horse to water, but you can't make her drink. She knows, and she knows that you know. So, reminding her will accomplish nothing. You have told her. There is nothing more that you can do. If she chooses to ignore it, that is her choice. Do not let it become YOUR problem. It is hard to watch a loved one self-destruct, but there is only just so much you can do.
  9. 8 points
    Ripped from the headlines! Celiacs suffering easily avoided! I've recently discovered, after consulting with many, many specialists in the field of fictalneurology, that many celiacs can have an adverse reaction to Pixie dust, in the same way that they would react to gluten. Pixie dust contains small amounts of atomic particles, some of the exact same ones found in the gluten protein! It is a common concern of many smart persons that we poor celiacs could be suffering from accidental pixie poisoning or fairy-related exposures every day. After talking with self-proclaimed functional neurologist and brain meats expert Dr. Billybob McGulch (PHD in Fine Arts, Jazz and Tap dance), he has come to the conclusion that many of us are needlessly suffering. His first recommendation is to send about 20 gallons of our blood for testing to the labs of Dewy, Cheetum & How for extensive allergy exposure tests, for the low price of $19.95! (per gallon) Results will include not only intolerance testing to pixies and faires, but also trolls, leprechauns, hobgolins, and sprites. He further recommends applying yourself with his patented "Pixie Repellent" ($29.95 + 8.95 S&H) guaranteed to work. If it doesn't, he will provide a full refund for the unused portion, providing you provide proof of pixie exposure. Until such time, it is recommended that Celiacs avoid all pixie-populated areas including glens, bogs, heaths, meadows, barrows, briars, marshes, and mires. Keeping exposure to a minimum is the first step toward healing! And be sure any body glitter is labeled "PF" for pixie-free!
  10. 8 points
    Well I am most definitely a makeup snob, admittedly. I would absolutely switch brands if necessary but I think it's something that each person should evaluate - for themselves - and not immediately jump to freak out. That's all. I'm glad you've found something that works for you - and others might find something different that works for them. Glad we can all offer our individual perspectives and realize that it's possible for different strokes to work for different folks.
  11. 8 points
    Do some Googling. There are med schools that do a combined program of BA/BS MD, accepting kids out of high school. Most programs are 6-8 years. I can't really find any details on how they choose who to weed out over time, so it's a little curious. It is, however, my expectation that anyone fully in the medical portion would be able to use capitalization, punctuation, grammar, and know the difference between their, they're, and there. And someone professing to study the disease ought to know that it is celiac disease, not the plural form.
  12. 8 points
    I am a person with invisible disabilities who cannot work and lives with daily pain. I've also chosen not to have children. But I really find your posts offensive. You're telling people they should be resenting their life choices and constantly miserable! I resent that. I have a wonderful life full of love and happiness and I haven't had a Whopper since childhood. I happen to be sick and in pain, but my life is still fulfilling and happy. Bad things happen in this world but we don't have to let those things define us.
  13. 8 points
    Loey, reputation is earned or lost, when members click the + or - under your posts. You basically earn reputation by being helpful. So for example, you could click the green + on my post, for my invaluable advice haha!
  14. 7 points
    Celiac.com 03/22/2019 - I'm going to talk about my journey through the Nexvax trial. It is a clinical trial to study the effectiveness of this drug to prevent mucosal damage due to cross contamination. There are 4 phases to this trial - Screening, Updosing, Maintenance, and Post-Study. Each phase has different requirements from the patient and different goals. Screening for the Nexvax Clinical Trial I found out about the Nexvax trial from my sister. Her job involves keeping up with medical stocks. She saw that ImmusanT had started their clinical trial - a double, blind, placebo controlled study for an injection to retrain the immune system to stop recognizing gluten as a foreign invader. It works similarly to allergy shots desensitizing the immune system to gluten. I looked up the trial at ClinicalTrials.gov and made a phone call to the nearest location. There were 35 trial locations across the US and a couple of locations in Australia. I live in Atlanta and the closest locations were in Jacksonville, FL or Nashville, TN. I decided to call Nashville because it is only a 4 hour drive compared to the 6 hour drive to Jacksonville. I called and talked to Nurse Ratchet (not her real name, to protect the innocent). She explained that it was a long trial, about 7 months, and that I had to be in Nashville twice a week for six weeks. She said she would send me the patient disclosure and she would answer any questions I had when I was ready. She also said that I needed to be able to prove my Celiac diagnosis with both positive blood work and positive endoscopic biopsy. I would have to be on a gluten free diet for 12 months. I would also have to carry the DQ2.5 gene and do a gluten challenge. I will also have to decide if I'm going to participate in the optional endoscopy portion of the trial. The twice a week for six weeks thing threw me for a loop. That would be a big time commitment, hard on my family, and very expensive. I wasn't sure we could do this. As my husband and I review the disclosure document, there is a lot of information to take in. One of the requirements to get in the trial is having the DQ2.5 gene. I've had genetic testing done several times and knew I had one copy of DQ2.5. In reading the documents, if you have one copy of DQ2.5, you have a 1 in 2 chance of receiving the drug. If you have two copies of DQ2.5, you have a 2 in 3 chance of receiving the drug. Nexvax does not work for those with DQ8. According to research, over 90% of people with Celiac have DQ2.5. So, I have 50/50 chance of getting the medicine and I have to be in Nashville twice a week for six weeks. That is a big time commitment for a 50/50 chance at the medicine. We decide it isn't worth it. Until, I talk to Nurse Ratchet and she confirms that if I get placebo in the trial, I will get the medicine when the drug is approved. Now we are talking. I have a 100% chance of getting the medicine - either sooner or later. We decide to go for it!! I find my medical records that demonstrate I have Celiac disease, send them to Nurse Ratchet and we schedule my first appointment - November 1. The first appointment lasts for 8 hours. The initial testing involves blood work, urine tests, EKG, physical, and do a gluten challenge. This is going to be a very long day. The gluten challenge is the most worrying part. I will have to ingest a lot of gluten - the equivalent of two slices of bread. They will gauge my reaction after the drink and monitor me for the next few hours. I have 5 minutes to consume the unflavored gluten drink. At this point, you might be thinking why would I purposefully ingest gluten? I'm poisoning myself. I know I'm going to be sick. What sane person does this? A person that is tired of being sick. I'm tired of worrying about food all the time. If this is what I have to endure to ensure that I can get better, I'm in. After consuming the gluten poison, we wait. After about an hour, I start feeling fatigue - mind numbing fatigue. The kind of fatigue that you just want to lay in a dark, cool room under a blanket thinking of nothing. At hour two, the vomiting starts. I throw up twice in about a 30 minute span. My reaction is severe enough to qualify into the study. But now I have to start to deal with the consequences of glutening myself. Once the testing is over, I get on an airplane and fly home. That was a miserable flight. I won't bore you with the unpleasant details, but know the flight was not good. I'm miserable the whole week after the gluten challenge. Fatigue, brain fog, gastrointestinal distress, and just feeling bad is what I dealt with for a week. A full seven days of being completely incapable of living my life in any meaningful way. It was a week of watching TV, ordering food in, and just breathing. Eventually I get better. When the malaise lifts, it lifts like opening a curtain to reveal bright sunshine. I am finally better. We opted to do the optional endoscopy study. I had to go back to Nashville at the beginning of December for the endoscopy. The flight, fasting, and doing the test in the early afternoon did not make for a great day. Really, it was a very bad day. Normally, I don't struggle with endoscopies. Normally I simply do the endoscopy and go eat a big meal and am fine for the rest of the day. This time I slept from about 1 hour before my procedure, through the procedure (they gave me good stuff to help with that), and then on the 4 hour car ride home. I slept a lot that day. Then we wait. We have to wait for all of the blood tests and endoscopy results. About a week after the endoscopy, Nurse Ratchet confirms I have made the cut. I'm in the trial! During the trial, I had to promise to not start taking any supplements or medicine without letting them know. I had to put a card in my wallet that said that I was in a clinical trial and it not give me medicine until the doctor called this number. There are also surveys you have to fill out on the little device they give you. You have to do them every night and they must be completed between 6 pm and midnight. Most days it is two surveys - one asking about symptoms and one about your bowel movements. The one about the symptoms asks you to rate how your symptoms are on a scale of 1 to 10. The other asks how many bowel movements you've had and tell what they were like on the Bristol Stool Chart. In the whole 6 month period you are only allowed to miss 4 surveys. I set two alarms to remind me - one at 6 pm and one for 8:30 and carried the device with me at all times so I could do the survey when ready. We have completed phase 1 - the screening phase. Now, it is time for phase 2 - updosing. Updosing: Reaching the Nexvax Dosage In reading the consent document, updosing is important because when they tried to give people the full dose of the medication in Phase 1 trials the side effects were too dramatic and people dropped out. The main side effects of this medicine are headache, fatigue, and diarrhea. Those side effects are the same for me when I get cross contaminated so I wasn't worried about the side effects. On the first injection day, I had to be in Nashville for for 4 hours so medical personnel can watch you and make sure you don't have an allergic reaction. They use a small insulin needle to inject the drug, so it doesn't hurt. The shot does have to go into your belly, so that's a little weird. I would have preferred it in my arm! The first dose is a very small dose of the medicine with a lot of saline. Over time the amount of medicine increases and saline decreases until about half way through. About half way through the up dosing, you get the medicine straight, no chaser (no saline). The updosing is not a challenge. I did have periods where I did experience side effects. Occasionally, I had problems with fatigue and headache, but it did not affect my life or how I functioned. There was one time, specifically, I had an issue with fatigue and headache. This was a bad headache. It did not let up with ibuprofen or acetaminophen alternating every 4 hours. It was about half way through the updosing and it lasted for about 3 days. Then it lifted. Everything was gone and I was back to feeling good. Also over the course of this study, I've had periods of flushing. Flushing where my face and neck would turn bright red and feel like they are on fire. When this happens, I would take a Benadryl and go to bed. My mom thinks it is menopause, but that's just for old ladies, not me. The hardest part about updosing was the travel and the grind of going twice a week. I also was doing this in December and January. December and January are hard because of the holiday season, but we also have 3 family birthdays during the span of this period. But we made the best of it and one time the whole family came with me and we spent a couple of days in Nashville. Maintenance Dosing Once updosing is complete, maintenance dosing starts. Maintenance dosing is 10 weeks of twice weekly injections of the full amount of medicine. They are self-injections. The injections need to stay refrigerated, so I have this super cool cooler in my fridge. TSA didn't even flinch when I came through security! I got 20 auto-injectors for the ten weeks of twice weekly injections, alcohol swabs, and a log book. I had to log the date, time, and location of my injection. You inject in a pattern in your abdomen- upper right, lower left, lower right, and finally upper left. I will say this phase was a bit of a relief for me. It meant less travel and just kind of coasting along. Until, the food challenges - duh duh duh daaaaa! The food challenges are to see if the medicine is working. There are three food challenges - one gluten, one placebo, and one either gluten or placebo. So, you will get gluten at least once but not more than twice. The challenges are spaced two weeks apart. The procedure for the food challenge is much the same as at the initial gluten challenge. They do the normal stuff - weight, blood pressure, and temperature. Then they pull out the big white box with my name on it. Inside the big white box is three smaller white boxes. They all are sealed. These are my food challenge boxes. She takes the first box out and opens it. It contains a shaker bottle, a box of water, and two packets of powder. One packet of powder is flavoring and the other is the test material. She mixes the drink per the instructions and I have 5 minutes to consume this beverage. The drink is pink and overly sweet. (At the gluten challenge, there was no flavoring. Just straight up gluten.) The test drink tastes terrible, but I consume the beverage. Then we wait. We wait to see if my body reacts the same or differently to the initial gluten challenge at the start of the trial process. It is just a waiting game. They said I could keep the shaker bottle we mix my food challenge drinks in. They are really nice shaker bottles. I cannot keep them. I truly never want to see those shaker bottles again. Those shaker bottles are my enemy and I want no part of them. Those shaker bottles make me sick and I don't want them. I've done two food challenges to this point. One I had no reaction and the other I reacted. I threw up, but I wasn't tired for a week. I was tired for 24 hours. So, that's where we are. We are working through the process. I have no idea if I'm getting the medicine or placebo. I don't know if I got gluten at any of the food challenges. That is what makes this so hard. The mental gymnastics of am I getting the medicine or am I not - is very, very challenging. It can consume all of your thoughts if you let it. Post Trial I haven't gotten to this part yet, I'm still in the food challenges phase of the study. The final part of the study means I will turn in all my used autoinjectors and boxes, log from where and when I did injections, and be turned loose into the world with my new found protections against cross contamination. It will be exciting. Conclusion I don't know if I got medicine or placebo. I may never know for sure. I have guesses and theories but that is all I have, which makes this really hard mentally. It is hard to have symptoms or not have symptoms and not know if you are getting the medicine. But I think those mental gymnastics are not helpful. I went into this hoping for a cure with the expectation that I would not receive the medicine and would be sick quite often. I haven't been any more sick than I would have been living my life normally, so that's a good thing. Some people argue that they never want a medicine for Celiac. They don't want a vaccine or any part of anything from Big Pharma. They say putting gluten in your body is inflammatory and bad for everyone. They say Roundup causes Celiac disease and if you eat organic all will be fine. Here's my answer - If you don't want the medicine, don't take the medicine. It isn't required and nobody will force you to take it. But this disease has impacted my life so dramatically, I'm willing to try a new medicine to alleviate the symptoms. This disease has affected my family, my health, my social life, and my ability to vacation among other things. Even if this or any other medicine is approved, I'm not sure I would return to a full gluten diet. I don't mind a gluten free diet. I mind the constant vigilance I have to have all the time while eating three meals a day. I mind that many labels are not accurate when they say an item is gluten free, but it has barley or rye in the product. I mind that I can't just take a road trip with my family without carefully planning each meal along the route so that I'm sure I can eat safely. I mind that I have to ask every waiter 15 million questions before ordering at a restaurant in order to get a meal that is safe and even then I'll probably be sick. I mind that I can't engage in normal social activities, like sharing a meal with someone, without doing research on where we can go or just having to bring my own food. I mind not being able to have a scoop of ice cream with my kids at the beach in the summer. I mind a lot of things that this disease has imposed on me. I believe most other Celiac sufferers endure the same hardships I do in finding safe foods. So, finding a cure or at least something that makes our lives better is a worthy cause that should be encouraged and cheered. Maybe others don't share my struggles and that is great. Maybe they are happy never going to dinner or out with friends. I'm not. I want a normal life or even some semblance of one where I can do the most basic and ancient ritual of society - sharing a meal without fear. So, take the medicine or not - it's up to you, but don't knock the people who want it.
  15. 7 points
    I also edited the title of this thread, as it was not fair to Schar, as their products are certainly gluten-free. Scott
  16. 7 points
    Corn alone does not cause a Celiac reaction. Someone with a damaged intestine might react to anything. Corn is high on that 'anything' list, as is soy. casein, and some other things. If you read the posts on this site, you'll find that someone who mentions not feeling well after months of gluten-free gets two main types of advice: 1) check all your products/medicines/pet foods for wheat contamination. and 2) try an elimination diet/food diary/remove common problem proteins.
  17. 7 points
    That's the thing - it's not. The terminology is unfortunately context-dependent. In botanical science, grains have the same principal anatomical components. Three are bran, germ & gluten. In food science the word gluten means ONLY the gluten that's harmful to people like us. It's a pretty ridiculous way to define something, but that's the way it is. Wheat, barley & rye harm every celiac. Rice gluten (botanical definition) & corn gluten don't. It should really be a different word in one case or another. If that newsletter is freaking out about corn gluten, the author is either too new to know what's what or has motivations beyond providing honest info.
  18. 7 points
    I have a better approach RiceGuy, why do YOU tell us what it is, after all, you would know better than me, right? I have my pen in hand, my notebook, and you are on the couch...please explain to us all what you see in this picture that we don't?
  19. 7 points
    Bad idea, you cannot eat such supplements and expect them to counter the effects of celiac disease. The only treatment for celiac disease is a gluten-free diet. Any marketing by this company which states that one could do this is irresponsible at best, and dangerous at worst. Take care, Scott
  20. 7 points
    Ok, I feel compelled to say this. We've gone from constructive discussion about how we might have been able to reach him to questioning his parenting, drinking, and whether he even has a son. Really people? Based off a handful of angry, argumentative, blame-shifting posts? Heck, there have been times in my life where I probably would have sounded just like him. If we're going to discuss this, maybe we should shift back to a more beneficial approach like is there any realistic way we could have gotten through to him? Honestly, given what he presented, sadly I don't think so. I think there were enough varied responses presenting both personal life experience and pointing to medical info that had he desired to listen (not just hear) he could have. I don't see any overall failing or lack of compassion in the people on the board.
  21. 7 points
    Jason, when I write what I'm about to say, I want you to understand it's coming from a caring and gentle place. I too have noticed that you seem to be willingly spinning your wheels. If you are not willing to get counseling, may I suggest that you consciously approach your life from a place of gratitude? I have an only child. I believe, but am not certain that my celiac (which is self diagnosed, I feel like I should state that) was triggered by this difficult pregnancy. After she was born we struggled for years to have another child, including expensive fertility treatments. I've only seen my husband cry 2 times and the hardest was when we realized I was going to miscarry a baby. He threw up in the waste bin at the ultrasound when we saw the fetus was dead. This was a devastating time for us as MANY women on this board understand. When my daughter was very small, I began to struggle with my health. I was feeling nausea and fatigue all the time. I struggled with a bit of depression and demotivation. I just couldn't be living my life like this. Especially when I looked around the rest of the world and saw how good I had it. I mean...I stay home with my daughter, we are financially sound, healthy, in a safe neighborhood, have hundreds of friends, we travel. I had a health problem that could be managed with healthy food...AND I figured it out relatively quickly (6 years) and I could begin to feel good and have energy again. I don't know if you believe in God, and I really don't think you have to to do this, but I started thanking God every morning for every blessing I could count. It's sort of like smiling when you're sad. You can trick your body into thinking it's happy. Honest to pete, it took a good year, but I began to let go of that phantom second (and third) baby that was never going to come. I learned to love cooking and became a foodie. I love my food. I love my family. I am involved with children in the community so in a way I have a lot of children, and one amazing daughter that makes my heart burst with love. With all this going on in my life, I'm going to worry that I can't eat some bread and milk? Good luck. It's really a much easier way to approach life. I promise.
  22. 7 points
    Hi Kaelin, and welcome to the board. I am sorry that you are feeling even worse now than you were before. That is truly miserable The first thing to do is eliminate dairy because most celiacs are unable to digest it because of damage to the small intestine. Once you heal you will probably be able to add it back in. Without the enzyme to digest it, dairy just ferments in the gut and produces gas, bloating and diarrhea. Step No.2 is to check all your over-the-counter and any prescription meds for gluten (and no, the FDA does not require that gluten be labelled on these so that makes it harder. ) You may have to call drug companies, ask the pharmacist, go online (glutenfreedrugs.com) to get this information. Step No.3 is to discard any scratched nonstick or plastic cookware/containers, all wooden spoons, colanders and cutting boards - anything that cannot be cleansed of gluten.. Do not share spreads or peanut butter with any gluten eaters because their knives can leave crumbs in the jars - keep your own specially marked jars. Step No.4 is to eat mostly a whole foods diet of single ingredient whole foods so that you know what's in your food. It means a lot more cooking, but you know that you are not getting gluten because everything that's in there you put in yourself (in your new or newly cleaned) pots and pans using your new wood and other utensils which you keep separate from everyone else's. Eliminate as much as you can the processed food especially the special gluten-free substitute foods that contain starches and grains your body is probably not used to digesting yet. Make sure your kitchen work surfaces are clean (use paper plates if necessary) and do not share dish sponges or towels (assuming a group living situation). If you do not have to share with a gluten eater it makes it much easier. Read every label for the hidden glutens, If you have done this and are still feeling just as bad, then it is time to eliminate the soy for a good week and see if that helps (and soy is just as sneaky as gluten in the places it hides). A good number of us do not tolerate soy either. If you want to test yourself for nightshades, try leaving out tomato or potato for a week, and then adding it back in and see what happens. If none of this gives you any answers, then you may have to go to the full-blown elimination diet where you pare your diet to, say chicken, fish, rice, steamed veggies - eliminate down to where you don't feel bad any more, and then add foods (or food groups) back in one at a time every three or four days and see how you respond. I hope these suggestions are of some help and that you are soon feeling better.
  23. 6 points
    .....OK NOW, I blunt ass%$@# coming out here. I feel like I need to go punch your lights out drag you to my house and force you on the gluten-free diet for you to heal. I would also show you a social life can exist. We would make meal prep boxes, shakes bars, our own breads live a normal like bloody diet with gluten-free versions of foods. Show you that YOU CAN LIVE THIS WAY. We would go out and hit the city every weekend and go to clubs, bars, etc. Show you the safe drinks, bring out own cups, show you that you CAN have a social life on this diet with a few changes, Want a date? Head out a few time on non meal related ones, clubs, etc. Then picnic ones, heck I would even offer to cater a bloody meal as a chef and teach you to cook. Women love men who know how to good real food that taste great. FFS there are plenty of food options that are gluten free, HELL most great ones are gluten free, only cheap burgers, sandwiches etc have the crap and can be made gluten-free easy now days. Good steak dinner, roasted/grilled veggies, glass of wine....a meal really you can make fancy easy and be gluten-free and be loved for it. I swear I know your right now suffering from defenicey mental issues and anxiety, but the s$#& goes away after some healing......honestly people like and you instances like this are why I think a celiac halfway house needs to exist......rant over. Please just, step back look at our advice and change everything over to gluten-free, social isolation...gluten not so much try being allergic to corn and olives I get bloody reactions from shaking peoples hands, or putting my arm on a table to learn some kid spilled a soda with corn syrup on it that causes a rash sometimes if they have stuff I am allergic to on their hands, your damn lucky. SO fix it now or you will regret it when you get worse issues and allergies and truly have to live in a bubble or die in a bed withering in pain.
  24. 6 points
    What is up with the news feed spamming stuff about negative effects of the gluten-free diet? I know it can be unhealthy if you do it wrong and eat a bunch of gluten-free processed foods and junk. And most of us here have to be on a gluten-free diet and know how to do it right. But the news feeds here keep on pumping out the negative side of our medically required diet. Keep seeing ones come up daily about diabetes, heart issues, about it being generally bad for you. Just Negative, Negative, Negative I feel it is corning some people here or others who constantly get the feed. My FB feed keeps showing these and it looks horrendous. Almost seems like sabotage Can we get some nice news, good news, something relevant? Like it is celiac awareness month, lets see news feeds about the history of celiac disease, storys of healing, breakthroughs in testing, reviews on bread alternatives, importance of supplementing, explanation and break down of symptoms......something at least productive. I know you need to cover both aspects of the disease and show a unbiased feed of information, but can we space out the more negative ones? This disease already makes me feel like I do not belong in society and the pond scum of the human genome. Seeing stuff about the negative effects of my medically forced diet if done wrong with processed junk, complications, etc. really just makes it worse.
  25. 6 points
    The study does state though that they have full remission of symptoms. So if they a very small amount of unrecovered physical scarring, which is basically what a single study is pointing to, then I don't see the problem. That is like saying that 90% of burn victims have scars. Well no s$#& Sherlock. Another problem with any study of this nature is that the people doing the study do not have complete control of the diet and environment of the participants. This means that there is no way to know what "gluten free" means to each of them. For one it means a completely gluten free house and the strictest of standards eating out, or not eating out at all. For another (me), while I have the strictest of standards eating out, and in my home, I do not have the control I would like and have a shared home, many do. Many eat out frequently, eat things like Domino's pizza and a large amount of fast food and things with a "processed in a facility" warning. And many still are "take the bun off the burger" celiacs. There is simply no distinguishing between them in the study.
  26. 6 points
    I personally feel that we should be happy that they voluntarily let us know about the shared equipment (or facilities) ; since the equipment is thoroughly cleaned between runs, they are not obliged to. I worry more about the companies that change the ingredients without letting anyone know, just to keep you on your toes A market I buy from makes their own sausages. They started making a gluten free line and they were good, won a national award with them. Hubs and I both individually compliment them on their sausages. They are very proud of them and declare, (proudly I might add), that they do not put any soy in them either. Yesterday I looked at their sausages.... strange, none are marked gluten free. I read the labels - rice flour, etc., etc., everything fine, and then... I notice hydrolyzed soy protein Totally blew me away. Yep, just keep on reading the labels and adjust your purchasing according to your own particular needs.
  27. 6 points
    I have been reading about Thanksgiving and noticed that quite a few of us were glutened. I see it all the time here, someone goes to a friend or relative's house and tries to eat gluten-free, but ends up getting glutened, even when the host/hostess really tries to make a gluten-free meal. WE NEED TO BRING OUR OWN FOOD! I don't care how embarrassed we feel. (We shouldn't, by the way.) I don't care how many rude comments we get. (They are just that - rude.) People with allergies need to avoid their allergens. People with diabetes need to avoid sugar. People with back problems need to avoid heavy lifting. People with bad hips or knees need to avoid stairs. People who get sun poisoning need to avoid the sun. So why in the world should we feel strange for needing to avoid gluten? We have a serious disease, and we need to do everything we can to protect our health. WE NEED TO BRING OUR OWN FOOD! If it makes you feel conspicuous, you need to gather your strength and put your foot down. This is the way it is. Practice saying it - "This is the way it is. Subject closed." They may talk about you behind your back, but if they do, be assured, people who would do that are ALREADY talking about you behind your back over any number of different things. SO WHAT? Are we supposed to risk our health on the off chance that they will STOP talking behind our backs? Are THEY worth it? The people who know and love us will understand. If they don't know and love us, we can live without them! In the case of uncaring relatives, hey, we ALL have relatives we wish we didn't, but we put up with them. So put your foot down, bring your own food, put up with the funny looks, but tell them, "This is the way it is - subject closed." They'll either get over it, or they will have the great pleasure of talking behind your back, but it shouldn't affect YOU. YOU are taking care of your health. So remember: WE NEED TO BRING OUR OWN FOOD! "This is the way it is. Subject closed."
  28. 6 points
    This post begs a response...... What your post suggests is that any chicken that is slaughtered is contaminated to the point where a Celiac cannot eat them and it's because of the wheat feed that a chicken consumes before they are slaughtered? Now, I realize that the process of slaughtering animals is not pretty and it may get pretty messy but I would like to think that chickens are washed well enough so that people won't be dying of E. Coli because that would be far more of a worry than wheat feed spilling from the intestinal tract of a chicken. What you have posted is utter nonsense and it fits in well with the "gluten in eggs" crowd. Bottom line is that chickens or any other animal have to go through a pretty intensive wash process to eliminate stuff that would make us sick. Fecal matter would be the top worry and as many, many people consume beef, chicken and pork products daily without becoming ill, then they do a pretty good job of it. Yes, some get sick but most of that has come from heavily processed meats, with added ingredients. Celiacs or anyone else with a gluten issue need not worry about chickens and wheat feed....unless you eat the chicken feed yourself and I wouldn't recommend that! Where has all the common sense gone?
  29. 6 points
    Well said, GFreeMO! People do get passionate about Celiac when they nearly die from it. I know that road well. It's time people realize they do not have to live and die by what a doctor says. If you wait around for a diagnosis to come, you may end up so sick, recovery won't happen. There are huge limitations with the medical community when it comes to chronic disease and much of what they do is money driven these days. There is no money in Celiac disease, people. You recover on your own, through dietary changes and it takes a long time. No pills, no surgery, no treatments. Just food and they don't have control over the food. Start to trust your own instincts on this and you'll get better. Listen to Irish......she's a smart lady!
  30. 6 points
    I still disagree. You are responsible for your own health, and 50 disclaimers on a product only means that no one will read any of the disclaimers. If you choose to live your life expecting people to take care of you, that is certainly your right, but don't expect everyone to agree with you. Isn't the GFS the one set up by one guy who wants you to buy all his products?
  31. 6 points
    Look, you need to apologize rather than continuing to split hairs, particularly to me about that nasty bit about my health. I'm about to put you on ignore. Risk of CC is a given in all processed foods. About the only products that are truly unlikely to be CC are products that contain no grains and are made on dedicated lines like Larabars. Even grain-based foods with the gluten-free label are sometimes recalled because of gluten CC. I'm sorry that fact came as such a shock but continuing to try to paint Kraft as the devil and failing to apologize to everyone who has been trying to help you understand is just beyond the pale. Personally I've never been CC by Kraft. I did get glutened once by certified gluten-free crackers from a good brand with a dedicated facility (at least I think so as there was no other sensible explanation). You just never know when you buy something in a bag, box, or can, which is one of the many reasons I mostly don't eat processed food.
  32. 6 points
    I'm with you, Karen. Can't seem to get people to understand the following: Gluten FREE eating means Gluten FREE. FREE of GLUTEN. ENTIRELY. It doesn't mean "maybe, kinda, sorta" It doesn't mean dabbling in it or "gluten lite" it doesn't mean 4 out of 7 days and on holidays we take breaks. It doesn't mean use non-gluten grains, but cook with wheat items. This thinking keeps people sick. And gets us the and the thinking that this is a fad diet. I walked through BJs today and looked at the crackers and breads and said to hubs: Holy Crap--that stuff nearly killed me two years ago. You are either gluten free or you are not. No grey area. On the bus or off the bus.
  33. 6 points
    It is a mysterious object called a "ponytail." Usually young girls wear their hair in such fashion, but in this case it is a young woman. This picture was taken shortly before she was abducted by aliens...we were not able to capture this "capture" on film...sorry. Scott
  34. 6 points
    Your a teenager, right? Have you told your parents or the leaders of this youth group? These are not your friends, they are criminals who are assaulting you. I know you want to go but if you cannot go safely, you shouldn't go. If you knew they might be putting arsenic in your food, would you say nothing and go? If you have one of those peanut allergies where you could die within minutes of eating peanuts, & they were going to put peanut in your food, would you go? Would your parents allow this? Didn't you come on here about this before? Or was this happening to another girl? If you came on before, why haven't the youth leaders or your parents put a stop to this?
  35. 6 points
    Gastroenterologist walks into the room, looks at my chart and says: "You have Celiac Disease. Go look it up on the internet. Come back in 6 months". Then walks out. That was the appointment where I was given the diagnosis. Another doctor: "since the Celiac came on so quickly, I'm sure it will disappear just as quickly."
  36. 6 points
    Well then, I apologize for my strong post. I have to be honest - you shocked me. I mean REALLY shocked me. Please understand that my post was out of honest concern. I am very happy to hear that you will be staying gluten-free. I can answer some of your questions because I am a scientist and read the celiac literature like a fiend; probably more than your doctors do. Some references by way of apology? You have what doctors call silent celiac disease. There are definitely people who are a 1 on a 1 to 10 scale, but no way of predicting who will be the 1 and who will go on to become a 10. You might find this study useful, where an age-matched cohort is compared. In the celiacs where the disease stayed silent, there was risk of worse bone health, hypothyroidism, and lower ferritin but no increase in morbidity or mortality. http://www.ncbi.nlm.nih.gov/pubmed/20685275 Notice how some of the folks in the study developed symptomatic celiac during the study showing it's progressive nature. Others were fine. Celiac disease can be progressive. We also tend to develop autoimmunity, particularly thyroid autoimmunity, and other forms of autoimmunity don't go away by stopping gluten. 30% of celiacs have least one other autoimmune disease, and the gluten-free diet is somewhat protective against developing more. This study talks about the various ways celiac shows up, in both celiacs with GI symptoms and silent. There can be anemia, joint pain, neurological autoimmunity and neuropathy, and there is an increased risk of some cancers. http://www.ncbi.nlm.nih.gov/pubmed/15825130 As for your family, celiac is genetic but the incidence is rising and it's not simply a result of improved diagnosis. http://www.ncbi.nlm.nih.gov/pubmed/17944736 It is entirely possible that you are the first person in your family to develop the autoimmunity on a susceptible genetic background. There is no way to know whether you would stay similarly healthy eating gluten; chances are reasonable that it would catch up with you in some way. It's also reasonably likely that you would have started reacting to gluten whether or not you kept eating it, so don't feel like going gluten-free was the cause of your strong reactions now. Also we've noticed around here that pregnancy tends to trigger and/or worsen celiac. That may be the reason for your powerful reaction to the pizza.
  37. 6 points
    People who do not have Celiac/Gluten Intolerance can go on and off of gluten as many times as they like with no reaction. However, those of us with Celiac/Gluten Intolerance will have reactions ranging from mild to severe with some reactions so mild that they are imperceptible. However, damage is still being done to your intestines if you are Celiac. If you were very good at avoiding gluten for those 9 months then the antibodies produced by your body may have calmed down. Then you ate the bites of cookie. Your body recognized the enemy but it had sent all the soldiers home...the antibodies may not have been there anymore. Then you ate the bread. Your body said WTF?? Gluten is back? Let's call in the troops and mount for a huge attack on the enemy. So the antibodies built up in ready for another gluten invasion. Then you ate the pizza and the war was on. Nausea and vomiting and feeling awful and damaging your intestines. You can't feel the antibodies your body produces. Celiac is an autoimmune disease. Likely you would not have been able to go on eating gluten with only mild symptoms for the rest of your life. If you had not stopped eating gluten, there would have been other symptoms like thyroid disease, miscarriages, depression, anxiety, muscle weakness, headaches. The list is over 300 symptoms so your body could have presented you with a lot more problems if you had not stopped gluten. This is not a preference thing. If you are pregnant you really need to be very careful. Many of us have had miscarriages before we were diagnosed with Celiac. It is very common among women with Celiac. find some gluten free alternatives for you pizza and cookies. For some of us the reactions intensify over time. The body is so relieved to be rid of gluten that it reacts strongly when even traces of gluten or cross contamination happen. Sometimes reactions appear to go away. That is why they used to say that children outgrew Celiac. Then they learned these people developed secondary autoimmune diseases and suffered from vitamin deficiency diseases and maybe developed lymphoma from untreated Celiac. We now know you cannot outgrow it. And you cannot prevent the damage from gluten if you are Celiac. And the only treatment is being strictly gluten free.
  38. 6 points
    Another thing I do is remind my doctors about testing for celiac disease. Instead of making small talk with them when they come in the exam room, I'll ask "How many patients did you test for celiac disease last month?" If they say "Um...none", I remind them that 1 in every 133 Americans have celiac disease, so if they're seeing between 25-30 patients a day, they should be ordering the panel at least every month. Or I'll ask how long it's been since they ordered a celiac panel. I didn't know if I was being effective of not, but recently a doctor burst into the room and said "We got one!" She was really excited! A patient had a positive blood panel. I copy medical articles for my doctors, too. I talk to the nurses and medical assistants about it, especially in the specialists office. I think it's worthy to try to educate the medical field. They get bombarded with drug reps and articles. I don't care if I'm repetative, I'm trying to get it to sink in. Hopefully that means someone won't have to go through what some of us went through. (Diagnosed or not.)
  39. 6 points
    Note to self: "Stay out of prison."
  40. 6 points
    I was very happy to find out a while back that on this whole 'avoid every last particle of gluten that I can' diet, my gut has entirely healed. However, anyone could argue that my gluten free diet could have done just as well, without my restricting gluten so severely, and honestly? I couldn't show any proof to the contrary. Maybe I was just someone who took longer to heal. Maybe my allergens were impeding the healing process. It could happen. However, now I have another moment of success that actually has a distinct difference between gluten free vs. super gluten free levels: my thyroid and vitamin levels. 5 years before I was diagnosed, my hair started falling out and my thyroid levels started going up. The numbers more than doubled. Before diagnosis, my vitamin levels were so-so, but not terrible. By 1 year gluten free (diet was no processed foods, just salt and barely contaminated fresh veggies/meat/fruit), my vitamin levels were steadily going downward and my thyroid numbers were still steadily climbing to bad places. Since then, I haven't found any vitamins I can take except for iodine, so with this last round of blood tests, I was expecting bad numbers. I got the complete opposite! In the year since going super gluten free, my thyroid levels have dropped back to what they were before I lost my hair! My vitamin levels are all back up to good levels, too! I'm SO happy. And I want to once again thank all the folks here and other places that made it possible. Because seriously: who would look at a veggie/fruit/meat diet and think: oh yeah, that's still too much gluten. Nobody who hasn't gone through that. But still, going that extra, crazy-seeming step of interviewing all the farmers and ranchers and food suppliers so that gluten almost never, ever touches my food has eliminated a problem that I was SURE I was stuck with forever. So, just...anyone who is trying out a super gluten free diet and isn't sure what kind of difference it can make, I can at least raise my hand to give one good example. :-D
  41. 6 points
    Many of us have a long list of diseases , just look at some of the signatures. I was undiagnosed for 40+ years.I have more than a couple of disease diagnoses. I am living and loving life . Your "disease" did NOT take you out of the game of life. You did. Life is a choice Karl. Live,laugh ,love and treasure each moment.
  42. 6 points
    Bull crap. I knew I had celiac disease (for seven years!) before having my daughter. While she may or may not get it, the possibility does NOT mean that she shouldn't have been born. My father knew that he had rheumatoid arthritis before I was born. While I have the possibility of getting it, the possibility does NOT mean that I shouldn't have been born. My husband's mother has familial high blood pressure. While he is prone to high blood pressure if he's not careful, that does NOT mean that he shouldn't have been born. No one has perfect genes. And yet, we can grow healthy kids. Healthy kids do not look at one setback as the end of their world. Healthy kids know how to make their own food because hamburgers do not HAVE to contain wheat. (Really, arguing "but the package says so" is just silly around here. While we can get gluten free hamburger buns, we also know that sometimes you have to *gasp* prepare your own foods, even from scratch. And, honestly, homemade hamburgers are better than any fast food one I've eaten, and most restaurant ones as well.) Fast food didn't harm your son - his choice to eat it over preference to healthy foods did. Celiac disease isn't making your son miserable - his choice to not find ways to cope and work around it is. And to say that all of this misery you describe for your son is what I'm giving to my 1 year old baby because I chose to have a child is both projecting and uninformed (because you assume I'm going to teach her the same as you've taught your son) and rude.
  43. 6 points
    Oh please, Karl Otto, get serious. Having celiac is absolutely nothing compared to what you can pass along to your children -- susceptibility to heart disease, cancer, stroke and on and on. MOST children with a parent with celiac will never develop celiac. Are you really saying it's better for those people never to have lived simply because they might not be able to eat a Big Mac at some point? Yes, there are times my celiac saddens me. My wife and I want to go to China and I'm not sure I can face it because of the diet. That's upsetting and causing some stress, but I'm glad I'm around. And I'm sure as heck glad I had children. If your son continues to be so upset over the smell of a McDonald's he needs to get some serious psychological help. If you continue to be so upset you also need help. Some mourning is normal, but things get better.
  44. 6 points
    Dear Gluten, Wheat, Barley, etc., I.Hate.You. You have made my life pretty miserable. You ruined so many things for me. Why are you so offal to my stomach? You make it hurt like no other-you give me unbarable stomach issues. You disabled my body from absorbing any nutrients, you dirty rotten scum. Thanks for making me so sick all those years. You take away my focus and my ability to really listen, you took away my ability to really do my best in school. And aside from all of this, which REALLY makes me hate you-is the fact that you hurt my personality. You made me stuck in a "fog." I couldn't laugh, or be crazy, or have fun, because you forced me to be stuck in a foggy state of mind. Your the ultimate fun-sucker. You made me angry and anxious. You caused me to have very little pacients, to be very quick-tempered, to be jumpy and annoyed. You made me ask what was wrong with me, when really, it was you all along. And for this reason, I hate your guts(and dont forget you destroyed mine). I'm SO glad i learned to stay away from you. I'm SO glad I live without you now. I'm completely better without you; I'm a different person without you! So stay away from me-forever. I'll never, ever miss who I was when I was around you. Because I truely HATE YOU! I just had to get that out.
  45. 6 points
    Yes, some folks who are diagnosed with celiac disease somehow seem to think that this diagnosis makes them superior to someone who is not. I guess it's the "my disease is more serious than yours" syndrome of one-upmanship. It makes me laugh really. You have to feel sorry for them, trying to gain sympathy points in life with a celiac badge when the actual disease syndrome is an intolerance to gluten, celiac being one form of that intolerance.
  46. 6 points
    Jason, I have been on the board over six years now, the majority of that time as a moderator. There have been very, very few instances in that time where a member was advised to get counselling. I would venture to say that I could count those members on the fingers of one hand. I don't know if you read any topics you did not start. I can, however, say that I do not recall ever seeing you post in a topic you did not start. So, when you say you come here to "share" I find that not to be descriptive. Most of us here share by trying to help others. You only seem to be interesting in taking--never giving. You come here over and over with the same questions and, not surprisingly, keep getting the same answers from many different people. Maybe it is time for you to reconsider whether everyone but you is wrong about your issues. It does not seem to be a productive use of the members' time to keep offering ideas which you clearly do not want to listen to.
  47. 6 points
    I am sorry that you have had this problem. Also discrimination due to being Latino(a). In my experience many of the self diagnosed people are those with the most serious symptoms who take the diet most seriously. Many are not diagnosed because they were too sick to stay on gluten while waiting for a biopsy. As soon as they had an idea of what the problem was they got off gluten immediately. They refused to go back to gluten for a biopsy because it would make them too sick. I think that you are showing your own form of discrimination against self diagnosed people. Just because you met some who did not take the disease seriously doesn't mean that all do.
  48. 6 points
    Well, sadly, due to the ineptness of a lot of physicians, I think the majority of people on this board are self diagnosed, including a lot of the moderators, so you may not care to hang around with us, either. But good luck to you dismissing help from caring people because they do not meet your self-defined minimum criterion.
  49. 6 points
    I don't think the response was rude, it was honest and based in reality. It serves no purpose to cover up an illness just to try and make it through basic training. Sometimes a person cannot do what they want in life due to an illness or condition and there is no shame in that. I'm sure there are positions in the military where having Celiac would not compromise their job duties but lying and covering up so you can pass basic, and then having it diagnosed as a new condition is plain stupid, not to mention dishonest. Not a good way to start out a military career and there is no guarantee this won't keep you from getting a medical discharge anyway.
  50. 6 points
    Well,unfortunately I have direct experience, so I will share it with you regardless of what your situation is. When I went back on gluten after 5 years on whole foods, my symptoms were 10 times worse than they were before. I didn't know about gluten at the time. I had remained on the Atkins strict version of the diet for my weight. I spent the number of grams of carbs per day on ...chocolate. I was fine. Little did I know it was actually gluten, not carbohydrate making me ill. So when I got married, my husband ate pita bread, so I used my allowed number of carbs on-pita bread-every day. Within a week, my face swelled and my fingers and feet swelled. I could NOT think clearly, I was dizzy, nauseous, dazed confused and sad. The next week I got bad acne which turned into oozing sores that did not go away for years. (DH) I became irritable, moody, clumsy and started having really bad migraine headaches that seemed to last longer and longer until they almost never went away. I was so tired I had to sleep every moment I was not at work and I had a small son to take care of. It was impossible to figure what was making everything about my body not work. The next thing I noticed was incredible forgetfulness, I would drive right past work and not realize it. Then I developed heart palpitations and kidney spasms and my fingernails peeled and cuticles bled. I had stomach aches and nausea every day. It was a long time before I got diarrhea but that too developed. I was horrified by all of this, but the Dr. said I had clinical depression and referred me for therapy. It didn't work. I couldn't think or process well enough to have a conversation. I started falling in the shower for no reason. I bruised easily and cried if someone spoke to me. I slept all day every day and never felt alert. This all happened within 3 months. It lasted years before I figured out it was really gluten. My symptoms were mostly the dermatological and neurological symptoms of Celiac. I thought I would share this because it can be more than the stomach aches and diarrhea..and you should know what you are getting into just in case you too happen to get neurological symptoms. I forgot to mention the tooth discoloration that occurred during my exposure to gluten. As far as recovery, I am healing, but certainly the DH scars are here to stay, and the tooth discoloration, but now my muscles and joints are working properly and the fatigue and depression are mostly gone. I have been gluten free two months. I hope this helps.
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