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  1. 8 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. 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.
  3. 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.
  4. 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.
  5. 5 points
    I have a suggestion for you. Sit down and develop a list of more detailed, targeted questions you would like to have data on that would provide a framework for people's responses. I feel like your current questions are too vague and too general to be very helpful to people trying to provide input for your writing project or to you trying to distill and organize the material. I think you need to ask people to give specific ages and dates of when their celiac disease and the other autoimmune conditions were diagnosed. Ask them how much time expired between the first perceived onset of symptoms and the official dx of both celiac disease and other other disorders. Ask them how they were diagnosed. Ask them what symptoms led them to seek medical intervention. Have some way of distinguishing between official and unofficial diagnosis of celiac disease and the other associated autoimmune conditions they. If you visit celiac disease forums very long you will discover that people blame everything from hang nails to lumbago on celiac disease without any evidence of association. Ask questions about their diligence in avoiding gluten. You could also provide space for narrative in your questionnaire. Just some of my own thoughts here. Hope this is helpful.
  6. 5 points
    I was and am almost completely ostracized by my family and friends.....I find this forum to be more of my family now days. I actually feel more welcome here. >.< does not help I was adopted as a baby but when the rest of the family learned I had a genetic disease like this on top of autism...I was dropped and ignored pretty much and everyone stays away like I am a bloody leper. My mother and father still provide for me but tend to stay their distance. >.< right before my diagnosis I had a symptom from my disease that caused gluten ataxia where it attacked my brain....it made me tad mad crazy like Mr. Hyde snap and punch holes in walls......SO I burned a bunch a bridges before that stopped..... ANYWAY. welcome to the forum, your little crazy family away from you blood family where you can talk about all your health quirks without judgement and get a TON of help. I am the crazy 28 year old uncle like Sheldon from big bang theory with a obsession with baking, supplements, body building, and can help you find just about any kind of food replacement in the USA.
  7. 5 points
    Dear egs1707, You will not like what I have to say. But, like Squirmingitch (whose entire post I agree with), I am only trying to help you. 1. You have already been given all the best advice possible by the nicest people. 2. You seem unable to accept this advice; so I won't focus on being nice. 3. I believe you are clinically depressed. No, I'm not a doctor; but I have friends who have been seriously depressed. 4 You would be best served if you could try some antidepressants--if only temporarily! This is no crime, no sin. It is merely human. Give yourself a break. Plenty of people take them. I'm a pharmacist and used to dispense PLENTY of them. Nothing wrong with them.--especially temporarily--or permanently, if needed. 5. Until you can improve your attitude, it's unlikely you will recover. 6. Once your mental state feels better, you might give a look at Mast Cell Disorders. Good info on this site by neonatologist who has Celiac Disease and Mast Cell Disease. This could be your answer. It has helped other Celiacs who could not get well only by eliminating gluten. Please know I only wish you the very best of health! p.s. Please go easy on me. I wasn't diagnosed till 60 years old. Gluten free 7 years and still working day-to-day to be healthy. For me, continually trying to make each day the best, trying new things, and checking out mast cell info continues to help me. I get better each day. You can too.
  8. 4 points
    Einkorn is a type of wheat. It contains a lot of gluten. It is not for people with a medical need to be gluten free - such as Celiacs.
  9. 4 points
    Celiac.com 07/03/2015 - For people with celiac disease or gluten intolerance, accidentally eating gluten can have numerous undesirable consequences. Symptoms of gluten-exposure among people with celiac disease can vary, but main problems and complaints include: upset stomach, stomach pain, inflammation, diarrhea, gas, bloating, indigestion, heart burn, skin rash or breakouts, and nerve and arthritis pain, among others. If you're one of these people, then you likely work pretty hard to make sure everything you eat is gluten-free. But what can you do if you accidentally eat gluten? Officially, beyond simply waiting it out, there is no clinically accepted treatment for people with celiac disease or gluten sensitivity who accidentally eat gluten. However, there are things that many people claim will reduce the suffering and promote healing when this happens. Here are the best home remedies for accidental gluten ingestion, as submitted by readers to our gluten-free forum. The main goal is to reduce or eliminate the worst immediate symptoms, including pain, inflammation, diarrhea, gas and or bloating, etc. The secondary goal is to rebuild gut health. So what works? Or, what do people say works for them? The remedies listed below are not ranked in any particular order of importance or efficacy. Fasting—Recent studies indicate that fasting for a couple of days can help to reset the immune system, which might be beneficial for those suffering from an adverse gluten reaction. Be sure to check with a doctor before fasting, just to be safe. Digestive Enzymes-- For many people, digestive enzymes seem to help the bloating. Many people claim that such enzymes help provide relief, especially against small amounts of gluten. Two such products are Eater's Digest by Traditional Medicinals, and Gluten Defense digestive enzymes. Green tea or peppermint tea. Many people have reported that green tea is also helpful. Peppermint tea is said to promote muscle relaxation, and can help for gassy stomach issues. Strong gluten-free peppermints will work in a pinch. Imodium seems to help some people control associated diarrhea. If you have diarrhea, be sure to drink water with electrolytes to help replace lost fluids. Pepto-Bismol—Some people take Pepto-Bismol to help relieve stomach upset. Marshmallow root can help to sooth stomach and gas pain. Antihistamines—Some people claim to find relief with antihistamines, such as Benedryl, Clatratin, or Zyrtec. Often these are used in combination with other remedies Probiotics—Many people find probiotics to be helpful, especially as part of a general gut maintenance program. Probiotics are generally more helpful in advance of accidental gluten exposure, but many people take them after exposure. Either way, it certainly can't hurt. Broth—Many people with celiac disease, gut and/or nutritional issues turn to broth for help in building gut health and proper nutrition. Good old fashioned beef, chicken or fish broth can be a beneficial part of a healthy gut regimen. Broth also has many health properties beyond gut healing. Tummy Rescue Smoothie: This recipe was developed by a celiac.com reader in response to his own "gluten emergency.” The healing properties of each ingredient are also listed. Puree in blender until smooth, and slightly thickened. It is most soothing when consumed while still warm from the hot tea. Tummy Rescue Smoothie: 1 cup hot freshly brewed nettle leaf tea (anti-histamine, anti-spasmodic) ¼ cup Santa-Cruz pear juice (flavoring/sweetener - pears are the least allergenic of fruits) ¼-½ teaspoon whole fennel seed (reduces gas & bloating) 2 Tablespoons slippery elm powder (healing & soothing to mucous membranes and the gut) 1 Tablespoon flax seed oil (soothing, anti-inflammatory) ¼ - ½ cup rice milk (hypoallergenic, use to thin to desired consistency) This smoothie is best consumed in small sips over an hour or so. Magnesium also helps with pain and relaxes muscle spasms, so taking a little extra magnesium may be of benefit. For severe symptoms, drink the smoothie while reclining in bed, with a warm castor oil pack over the abdomen, covered by a heating pad set on low. Do not leave the pack in place for more than an hour. Longer-term strategies include rebuilding intestinal health with an anti-inflammatory diet, taking supplements like L-Glutamine, coconut oil, fat-soluble vitamins A, E, D, and K, Calcium, Magnesium, B-Vitamins, Essential Fatty Acids (EFA's), and probiotics, including acidophilus for about a week to get intestinal flora back in order. This list is not intended to be authoritative or comprehensive. Nor is it intended as medical advice, or as a substitute for medical advice. As with any health remedy, do your research and make the choices that are right for you. If you have any thoughts or insights on how best to treat accidental gluten ingestion for people with celiac disease or gluten intolerance, please share them in our comments section below.
  10. 4 points
    Joe, Your doctor can check you for vitamin deficiencies (lab test), but more importantly, you need to have a serious conversation with your doctor about your anxiety. It seems pretty high from what you described. You just might need medication for a while and you might see some benefits from taking it. Talk to your doctor. In the meantime, you can consider taking a multi-vitamin and keep eating foods like meat, fish, eggs, veggies, nuts, rice, and fruit. I do not know how bad your symptoms are from celiac disease, but for example, if you have diarrhea, it is NORMAL to be anxious about where bathrooms are. We get that! Do not expect to heal in just three weeks. It takes time. You reported that it took two years for all this to develop, so it will take a while to heal. It is hard to be patient, I know. Honestly, you should talk to a doctor. He/She might refer you to a psychologist who is trained to get you through this rough patch. Getting a celiac disease diagnosis is hard and it is a lot to process. If you can, sit down and have a serious conversation with your parents, school counselor, or another trusted adult. Ask them for help.
  11. 4 points
    I just don’t eat food that either my husband or I have prepared. People think I’m crazy but I’m the one who pays the price. Nothing is worth getting glutened....nothing. I travel with my own cooking equipment down to a sponge. I don’t eat out unless the restaurant has a separate prep kitchen. I’m 10 yrs into this and every time I get glutened my reaction is astronomically worse. Actually not sure I will survive the next.
  12. 4 points
    amen to this - show of hands of who found this out the HARD WAY...🙄 this past thanksgiving, i did everything gluten-free - finally perfected my mom's stuffing, brined my bird, found gluten-free fried onions for that green bean casserole that i don't even like (lolz - everybody: suffer! hahahahaaa) and outlawed those crescent rolls. nobody died! everybody said how delicious everything was. even for snacks, they make gluten-free pretzel crisps i used for crackers, and those milton crackers are the bomb dot com. i used to make a 'gluten corner' and then freak out trying to keep everything safe. which, i have had success with if i lay out the rules: i keep the main part of the meal which is gluten-free on one side of the kitchen, the gluten can be in the dining room or the other side of the kitchen with PHYSICAL DISTANCE between them. i use paper plates or bowls, and people must get a new plate or bowl if they want seconds, say, if they're eating gluten crackers with their chili, if they want that second bowl, i don't need the ladle hitting a contaminated bowl then ending up back in the chili. also, yes, what the other poster said: you have to be firm. it's not mean. it's reality. we were out to dinner and the server went to box up my leftover appetizer. she says 'i can put extra bread in there with it if you want' i thought she was kidding until she waited for my answer. i grabbed the dish back and said: NO. YOU BRING BOX. I PUT IN BOX. i still tipped her well. people just don't know and if they don't have to, they don't remember.
  13. 4 points
    Food prepared in other people's gluten kitchens is NOT SAFE if you have Celiac's. Salads or veggies, any of that, can all be contaminated from their counter, their utensils, wooden spoons, non-stick cooking pans, their hands, any ingredients they used in make gluten containing food. If they taste what they have made and use the spoon again...I know...but people do that, their gluten contaminated mouth would contaminate the food. If they do not have Celiac's they are not even close to being aware of the care that would need to be taken to make that food safe for you. You seriously have to just tell them not to bring anything unless it's raw whole food and you will cut it up in your safe kitchen.
  14. 4 points
    My house is gluten free. I do not allow any gluten inside — ever. I do allow it when we are having a party outside and I set up an extra table to hold those foods to prevent cross contamination. When that type of party occurs, I toss or send home ALL the food with non-celiacs. When I invite people over and they ask what they can bring, I usually suggest gluten-free packaged items like chips or ice cream. My family or friends will offer to bring veggies and fruit that we can wash, cut and serve from my kitchen. Everyone is really nice about it. Sometimes, a new friend shows up with a pie. I usually thank them and set it aside. I give the pie away later to neighbors or friends. I try to avoid making my new, uniformed guest feel uncomfortable. I need a place where I can feel safe and let down my guard.
  15. 4 points
    I disagree. I think you can manage or treat celiac disease with a gluten free diet. The article made a comparison of managing celiac disease like Type 2 Diabetes and Heart Disease which she says can not be managed on diet alone either. I strongly disagree with that! I have Type 2 Diabetes and have been managing with just diet alone for four years. No drugs necessary. Every drug has benefits and risks. For example, statins can lower cholesterol, but can cause muscle pain and Type 2 Diabetes. Go figure! If my pancreas craps out for good, I will take insulin, just like I take thyroid hormone replacement. These are not “drugs”. Beyond Celiac places a lot of emphasis on drug development. That is one of it’s main missions. Celiacs probably need drugs because people want an easy fix. It could make eating out easier and less risky, but I will prefer to my diet alone strategy. While true, many celiacs do get hidden exposures to gluten, Look at what most people are doing. Most refuse to improve their diets with nourishing whole food. Most continue to eat out. Most have substituted their old diet for the same processed foods diet (e.g. Cheetos, Milky Way Bars, and pizza). I get it. My first GI told me the bad news, but tried to soften it by telling me I could eat at Red Robin. New celiacs are not given much guidance and there are few dieticians who really understand the gluten free diet (not to mention that insurance may not cover it). My PCP has three celiacs. Two refuse to adhere to the diet. “It is too hard”, they tell her. I am the celiac who adheres to the diet. It works for me. Mostly whole foods, few grains, and I avoid processed foods. Sometimes, I feel like Ma Ingalls on the Praire cooking all my food. But the end result has been worth it. My last endoscopy revealed a healed gut. It also revealed autoimmune gastritis, but that seems to be in remission. I am running, cycling, and swimming. I might sign up for a Triathlon again. At my age, I can probably get on the podium due to less competition! ? So, take heart. It is possible to heal from celiac disease. I am living proof!
  16. 4 points
    PCP and husband both displaying questionable or just plain bad judgment, IMO (not a doctor, just a parent to celiacs). If your husband has low-level ongoinggluten exposure at home, seems like that could be contributing to the joint pain, stomach cramps, and fibromyalgia.
  17. 4 points
    Obviously, you have a lot more issues with him than just this. I feel bad for the kids as an early diagnosis could be so helpful to their current and future health. If it were me, I would get another doctor and get the ones with the obvious issues tested. It would be nice if he agreed, but if I think it's for my kids health and future success in life, I don't care what my husband thinks. You can eat gluten-free without buying expensive gluten-free packaged products. Meat, beans, veggies, fruit, dairy , eggs, rice, Chex cereals, plain potato chips, etc are al naturally gluten-free. It might take a change in what you fix, but, except for gluten-free pasta, my hub and I eat mostly like that. I say potato chips and Chex because you can make some great chicken nugget things with them. you are right that eating gluten-free usually makes the Celiac tests negative. But if you can't or won't test your kids, maybe it is best to make them gluten-free to stop some of the damage. In a few years, as adults, they can get tested . There are tests for Celiac being developed that don't require eating gluten or much gluten.
  18. 4 points
    Bring your own food is my advice. I don’t think the host will be offended if you explain you have an autoimmune disease and must avoid certain foods. Profusely thank her for the invitation, gush about her house, gloss over the food stuff like it’s no big deal and move on doing what you need to to remain healthy. If we don’t focus on the food I think it helps others ignore it too. Dazzle them with your wit and personality because that’s what makes you awesome, not what you can or can’t eat. Make your family remember how lucky they are to have you. Don’t fight over food unless they are actively causing you harm through cross contamination. Do what needs to be done to keep healthy without apology because you aren’t affecting them by watching what you eat and bringing your own food.
  19. 4 points
    Parent of two celiac kids here. You are getting great advice; here are some things we've found helpful: - Give some real thought to taking the entire house gluten-free. It's just not worth the stress, for me, of worrying about cross contamination. Also, your other kids are at higher likelihood of having celiac disease, so you may end up 100% gluten-free anyway. (Honestly, it's great in a way that both of mine have it - they have each other's backs, and no one else gets what they're going through quite like their sibling does.) - Your doc will likely recommend having the rest of you screened (assuming you're biologically related, vs. adopted/foster). Insist on this, even if they don't suggest it - all first-degree blood relations should get screened. Best time to do it is right now, when all of you have been eating gluten regularly. - Walk away from pasta (even gluten-free) for a while. Instead, cook like my great-grandma did: meat and potatoes, chicken, squash, occasionally rice, lots of green veg. (Oh, and turns out it's not that hard to make french fries, actually! But definitely a special treat, not an everyday food - kinda messy.) - Meet in person with the teachers, lunch team, administrators, etc., and send an email around to the other parents in your daughter's class. Tell them why she's gluten-free, & what that means logistically, and also ask them to help their kids understand, to protect your daughter against the possibility of teasing from ignorance. Work with the teachers to leave some shelf-stable treats (Tate's cookies, etc.) at school so they have something for her when some well meaning parent brings in cookies or donuts for a treat without giving you a heads up first. - Lunch, for us, switched from "something you buy at school, or a sandwich" to "last night's dinner, packed in a Thermos to stay warm". - Shop the grocery perimeters. I sometimes end up with nothing but meat/fish/chicken and produce. - Read labels and watch out for wheat in the weirdest places. For example, Whole Foods has "may contain wheat" disclaimers in their frozen shrimp, frozen spinach, mixed nuts, etc. - Rice Krispies are a trap for the unwary - they contain barley malt. However, Starbucks' version of a rice krispy treat is gluten-free (yay!). - Ditto oats. One would think they're naturally gluten-free, but nope. We're staying mostly off them for now, and when we do eat them, it's the certified gluten-free kind only. - Look out for unexpected sources - for example, sorry to say this, but you'll need to throw out the Play-doh. Our art teacher said she used corn starch, not flour, for papier mache, so you'll want to check that your child's art teacher does as well. - Go in phases and adjust based on how she's doing. My two keep experimenting: we've had one kid on dairy, off dairy, on eggs, off eggs. Both currently supplement with Vitamin D. One supplements with magnesium glycinate (which seems to be helping a lot of behavior/mood symptoms, thankfully!). One likes probiotics; the other says the priobiotic chewables and capsules make her stomach hurt - but she loves kombucha and says it makes her feel better. - Don't believe, or at least be VERY skeptical, of regular takeout/delivery pizza places that offer gluten-free dough. The dough may be gluten-free, but the pizza is 99% likely to get cross-contaminated during prep/baking/serving. We just go with frozen - you can make it fun by buying every gluten-free pizza your grocery carries, and getting the whole family involved in Pizza Tasting and Rating Night. - Haagen Dasz has many gluten-free flavors! Not sure why the label is so tiny, but it's there if you look for it. - If there's a Five Guys near you, it's your new fave burger place. The kids can eat the fries because they don't have anything battered cooked in the same fryer. Same for In and Out (but 5G is better). - Find Me Gluten Free app is a terrific resource. Nima, the food testing people, are also rolling out crowdsourced testing results - early, but promising potential resource. Good luck!
  20. 4 points
    Great news! I have have joined the “Peter club”! My villi are healed! The gluten free diet is working! I was diagnosed around 4/2013 with only a positive DGP IgA and a Marsh Stage IIIB (moderate to severe villi damage). My main symptom was anemia which I recovered from in just a few months with iron supplements. Minor symptoms persisted the first year as I discovered food intolerances (e.g. Xanthan Gum) and worked with known intolerances (lactose, garlic, mushrooms, eggs, etc). Many intolerances resolved (and some did not) as I healed. A year later, I was diagnosed with diabetes and further modified my diet (fewer carbs, more fats, less sugar, even from grains). I did well. I did not return to my GI and instead worked with my PCP. I never had my antibodies tested after my initial diagnosis to see if they were coming down (bad move). I did get a bone scan after I experienced some fractures and was checked for nutritional deficiencies. I stupidly assumed that my antibodies would always be elevated like my thyroid antibodies have been for 20 years. I strongly recommend annual check ups for celiacs. Over the years, My DGP IgA levels were off the chart tested after hidden gluten exposures. My symptoms were severe and were not consistent which prompted my visits to my new GI. I would recover, though it took months....like 6. In January 2017, I think I was glutened again (I had not eaten eaten out for a year except at 100% gluten-free restaurants ), and I ate mostly unprocessed foods. I had a tooth infection, tooth extraction, flu and a cold all in a span of one month. I developed chronic hives that last for six months. So, I went back to my GI (off the charts DGP IgA). My allergist blamed my Hashimoto’s or an undiagnosed autoimmune issue, my PCP just mentioned how I am always chronically inflamed. My GI offered an endoscopy, but I declined. Instead, I opted for a slightly modified Fasano diet. I did not give up coffee! Finally, I was still having abdominal issues, so I requested the endoscopy for the first week in January. Why is my DGP IgA always elevated? Where was I getting gluten? Heck, my hubby has been gluten-free for 17 years, so I know the diet. He was okay though there are some things he never eats and I do. Am I super sensitive or am I developing another AI issue? Maybe since I have other antibodies (thyroid) floating around, I should discard this test result (not much research for post diagnosis testing issues). I was driving myself crazy. So, I needed to know for sure what was going on. This time, my new GI had a newer scope. I was shown the results (photos) while in recovery. You could could see the villi as the magnification was that strong). I did have a stomach polyp which was removed and biopsied. The pathologist reported no damaged in my duodenum, and that the polyp was not cancer and no H. Pylori. He noted chronic gastritis (this explains my stomach pinching sensation and indigestion, etc.) I was advised to continue my gluten free diet. I assume my stomach is still healing as my antibodies are no doubt still elevated (off charts in 4/2017 and 80 in 11/2017) though hopefully lower than 80. I am now considering giving up coffee for a while and looking into foods that will help heal the gastritis since I react to so many different medications (anaphylactic) and each medication must be carefully monitored. Oddly, did not have gastritis when I was initially diagnosed. I am happy to be a part of the Peter club! I plan on staying on the modified Fasano diet until my stomach has healed (though I did eat some homemade (Xanthan Free) cookies over the holidays). I am also happy to report that my HA1c (diabetes test) was in the normal range! Yes, normal, not even prediabetic! So, it is possible to mange Type II diabetes without drugs. I typed this on an iPad, so expect errors. I probably made a few mistakes regarding times too, so expect a few tweaks here and there by the end of the day.
  21. 4 points
    A number of studies have looked at the amount of gluten that causes symptoms and/or changes to antibody levels or villi in patients with celiac disease. FDA reviewed these studies prior to setting the allowable level of gluten in gluten free foods at 20 ppm. They saw a LOT of variability between individuals. 20 ppm is safe for many, but not all, people with celiac. Some are harmed by much lower levels. So what adversely affects one person may not be harmful for someone else. I have silent celiac but my antibody levels show that I am “super sensitive.” I pay attention to the reactions of others who report themselves to be super sensitive, but I also go by science (distillation removes gluten, gluten is not absorbed through the skin) since I am a scientist.
  22. 4 points
    Hello, fellow celiacs! It's been a long time since I last prowled this forum, newly diagnosed, terrified and looking for answers that my doctor couldn't provide. A wise soul with the user name Irish Heart told me at the outset to not let the disease define nor confine me. In the five years since my dx on 10/11/12 I've taken her advice to heart. With the unwavering support of my husband, daughter, friends, GI doc and nutritionist, I've learned how to manage the disease while living an entirely normal life and want to assure the newcomers here that you can eventually do the same. At the time of diagnosis I had endured 18 months of hell. Insomnia, raging anxiety, balance issues, tingling extremities, crippling fatigue, upper abdominal pain. The weight loss was so rapid that I feared the worst. Four different doctors gave me four different misdagnoses. When I was finally diagnosed I was relieved to finally have a name for my condition. But I was still scared and faced the daunting task of making an immediate, life-changing dietary change. Celiacs can't simply ease into gluten-free. It took time, and a lot of trial and error, to finally get the gluten-free diet down to a science. Like many folks here, I made a lot of mistakes in the beginning. I cried a river on my first post-dx grocery shopping trip, spending far too much money on gluten-free food that tasted like cardboard. I lamented the loss of a “normal” life. Eating out seemed too intimidating and risky. I accidentally glutened myself a few times and spent sleepless nights worrying about the possible damage I'd done to myself. My wonderful nutritionist, whose brother is also celiac, patiently spent an hour with me reviewing what to look for on ingredient labels and suggested sticking to whole foods that are naturally gluten-free just to keep things simple at first. Once I got the hang of the gluten-free diet my body quickly responded. All of my physical symptoms resolved within six weeks (the anxiety, on the other hand, took two years to gradually subside). I gained back the weight (and then some, thanks to discovering Trader Joe's gluten-free mini cupcakes :-)). Today I practice yoga six days a week and do cardio and strength training on alternate days. I can easily modify any recipe. I no longer ask my husband or daughter if something they brought home is gluten-free; they know what to look for and I trust them to have checked it first. I take my own food to weddings and other social events, and everybody understands. I have a list of restaurants that I know are completely safe, and I've learned which brands and foods cause a rare cross-reaction. For example, I can't eat oatmeal, not even from dedicated gluten-free brands. The only salsa that doesn't cause a reaction is Amy's. Last summer we went to Ireland and the UK, where nearly every restaurant has a gluten-free menu and follows proper protocol to avoid cc. We discovered a wonderful restaurant in London named Niche, in which the entire menu is gluten-free and delicious. I loved picking off my husband and daughter's plates, secure in the knowledge that everything was safe. At 54 I feel strong, healthy and happy. I was lucky that my disease was caught before related complications set in or other AI diseases developed. I don't have follow up blood work and have not had any follow up endoscopies since the first one. Both my GI doc and nutritionist agree that as long as I have no deficiencies and feel well there's no need. I do continue to have an annual physical with thorough blood work that goes above and beyond the typical (10 vials), and everything has come back normal. Some members here may disagree with my approach, but it's worked for me for five years. Which leads me to: no two celiacs are the same. What works for me won't necessarily work for you, and vice-versa. If you're feeling well, congratulations. But please be understanding of those who continue to struggle with symptoms and/or are also battling additional health issues. What works for you likely won't work for them. If you're feeling poorly I'm truly sorry, but that doesn't give you the excuse to scare the hell out of people, especially newcomers looking for answers. One of my first posts five years ago asked if it was ok to occasionally cheat on the gluten-free diet (I've since learned that it's not, and have never cheated). Within an hour I was bombarded with sixteen semi-hysterical responses, mostly consisting of all caps, multiple exclamation points and “helpful” links to articles of dubious merit linking celiac to cancer. Instead of assurance those responses only terrified me more. The aforementioned Irish Heart provided one of the handful of reasonable responses that talked me down. We're all here to support each other, regardless of where we are in our gluten-free journey. So...to the newcomers, welcome. Have a look around, take what you need and discard what you don't. To the veterans, keep fighting the good fight and thanks for your help. May we all be happy, may we all be healthy and may we all be free from suffering. Namaste.
  23. 4 points
    Interesting. Not surprising to me that they found a higher percentage than they thouught. I think that percentage would be even higher if they tested older folks in their research.
  24. 4 points
    Thank you so much for posting this. I am another person who suffered for many, many years with DH that was misdiagnosed repeatedly. I developed DH about age 7 and suffered until my late 40's being told it was everything from 'poison ivy in my blood to atopic dermatitis to 'pickers acne. After a year or so gluten free I had clear skin for the first time in my memory. Folks still struggling for a diagnosis may want to print this out to take to a derm with them. Doctors may not listen to us but might listen to the NIH.
  25. 4 points
    Geesh! I am not trying to diagnos. I was just adding to the information. I know that some of the folks here posting on this thread have neurological symptoms. My only point is that this CAN be an issue and that small amounts of cc are a problem particularly in those who have neurological symptoms.
  26. 4 points
    Hi Leuconostoc Cyclinglady is correct in that refractory celiac disease is rare - affecting 1-2 percent of Celiacs. Type One is usually controlled by a short stint of immunosuppressants to calm the body down and a strict diet. Type Two is not so easy to treat. It sounds like you had been diagnosed with Type One and had it under control. Hopefully you had enough time to heal enough before the mishap at the awards ceremony that this is just a short reaction. You mentioned taking supplements and named Vitamin A & D. Have you monitored your calcium and magnesium levels also? Three years ago I was diagnosed with Type Two Refractory Celiac Disease - 11 years after being diagnosed with Celiac. I was put on Budesonide. I traveled to Mayo Clinic to see Dr. Murray and participate in the Humanized Mik-Beta-1 Monoclonal Antibody study. I started to develop antibodies to the treatment so I had to drop from the study. The treatment I did get seemed to work and reversed the clonal t-cells and intestinal damage. I was then weaned off the Budesonide. Then one year later, it all returned. For the last year I have been on Prednisone and Budesonide and having to take large doses of calcium, magnesium, & potassium to keep from being hospitalized. Last fall, I went to Dr. Green at Columbia University and was one of 22 people in 5 countries who qualified to partake in the AMG 714 study. I have asked both doctors about what they thought causes refractory celiac disease and they both have said that they are not sure of the specific triggers but that the general thought for Type One was long time ingesting small hidden sources of gluten. That is why to qualify for any of the RCD studies, there are so many tests, medical history questions, and examination of your diet to rule out gluten.
  27. 4 points
    The only people who don't have to worry about cc are those half ass, fad dieters. With a positive EMA, positive genetic screen and an inflamed duodenum, along with mild blunting of the villi, you need to be careful like we all do. In 6 months of following a strict gluten-free diet, go back and have them re-do the EMA. If it's negative, that should convince you. Do not worry about what anyone else has to say about what you do. You don't have to please anyone but yourself and guard your own health. It doesn't matter about convincing relatives to be tested, either, because if they are anything like many of our families, they won't get tested. They won't want to hear about it....even if you had the biopsy slides to show them. I still have family members, after 12 years, that don't want to hear it and they are symptomatic or have associated issues they need strong meds to somewhat control. I just say.......'How's that workin' for ya"? I take crap from no one with regards to my diet.
  28. 4 points
    I'm a foodie, used to bake under a James Beard nominated pastry chef... and am 18 months post-diagnosis. I don't sugar coat things. Its worth it, but it sucks. My 8 year old foodie is about to start testing, and we just sit and cry. At home things are easy. Going out or to parties... it's hard. You'll easily find pasta you like. Cooking it is a little trickier, but there are several brands that are really tasty. I make pasta all the time, and the whole family loves it. Bread is harder. You'll find a favorite sandwich bread, but Italian or French bread is much different. I find that Schar brand comes pretty close, though. I was really, really sad for a while. When you love food, giving up a big part of your diet is like a grieving process. But here's the thing, even when I was sadder than sad, I never thought of cheating. Not even once. Because I was feeling better and getting stronger every day. I'm doing better now. I didn't think I'd ever accept this reality, but I have. My life is pretty awesome. And I feel like myself for the first time in years. I have energy to run and play with my kids. Everything I've given up? It's worth it. I'm even re-learning to bake, something I didn't think I'd enjoy again. Tonight for dinner I made frozen pizza (with a cheese and tapioca crust, it's amazing!) and home made buffalo wings. I may have enjoyed it even more than what I used to get from the local (awesome) pizza place. it sucks. It really does. But if you have celiac, and it sounds like a solid possibility, it will all be worth it. You'll adapt and adjust, and everything will be ok.
  29. 4 points
    Hi FBMB, Please join the club of people who didn't recover in 5 minutes. We have a lot of members and they all pay dues! Your dues are an extended course in patience. Dues are paid daily for an indeterminate time. There was a study a while back of children on the gluten-free diet. A good precentage of them had not totally healed after 18 months on the gluten-free diet. Some had though. Maybe some smart person will post a link to that study. I suggest you change your snacking habits. Try something different to snack on. I know I had trouble with popcorn early in the gluten-free diet. It is hard to digest. Whole corn is hard to digest for most people. That's why they make hominy. You may be able to eat popcorn later on. Also consider what you are eating at all times. Your symptoms can be delayed by hours perhaps. Fairly often we compare the recovery process to a rollercoaster ride. There can be ups and downs in an apparently illogical manner. The good news is you really are sick, so you are not a hypchondriac anymore! Now lets see, you are eating cereal, which is a refined carb generally, and hard for our messed up guts and flora to handle. What other processed foods are you eating? If you put all the processed foods you are eating in a pile on the kitchen counter, is it bigger than the pile of whole foods you are eating? Recovery from celiac disease is all about diet, gut flora, and patience. Maybe a few vitamins thrown in here and there. The tricky things are additional food intolerances that might crop up. They can be confusing and cause many symptoms themselves. The way to find them is with an elimination diet. Put on your thinking cap and start investigating your diet. Remember processed foods are your enemy.
  30. 4 points
    Thanks, me too, with enough information I'm hoping to piece the puzzle together in a way doctors seem unwilling to put the effort into doing (something that really has surprised me during this process) Definitely got it unfortunately, blood test, two gluten challenges and biopsy doesn't leave much doubt Couldn't put it better myself! Won't stop until I figure it out as I'm sure there's more than just gluten issues going on, even if it is as simple as a vitamin shot (fingers crossed that theory proves correct next week) Without putting words in anyone's mouth I'd say it's more a case of "tough love"? As above only one troll tried it on with a nasty comment and I sent them packing. Hope that has come across (and seems to based on your post) If anyone thinks otherwise that was never the intention. Hope you stick around Rowan and that things pick up for us both soon, quote this back at me if you're reading it
  31. 4 points
    Celiac is the only problem that's single handedly destroying my life right now so would respectfully disagree with you there, sorry. Was actually reasonably looking forward to 2016 at the time before all this started, never saw it coming that's for sure. Sure, I can safely say that's been the aim of everyone on this thread. Nope, they're just the kind of people who make themselves feel better by belittling others. Took me a long time to see that but it's pretty clear to me now looking back. Guilty as charged, doubly so at the moment as this illness has been nothing but one massive bundle of negative for the past year or so now. Had a bit of hope around 10th December that things were improving (see my post at the time that was a bit more optimistic sounding) but it's hit me for six since with the new symptoms despite doing the same things that seemed to be working before. Part of the reason I'm so down about celiac likely taking away the best years of my life through illness. Already instead of planning holidays, dates etc. life is revolving around doctors, hospitals and blood tests. I can and do, just not about the celiac situation Probably not far off with the depression theory but I wouldn't go near those medications if you paid me, seen enough people with horrible side effects from them who have got off them and now say stay well away. Relaxation and breathing techniques however I do believe can help and are much more natural. Just had a quick Google and interesting to note the DEXA scan can help with diagnosis. One more thing to use to prove to the doctors why it needs to be done regardless of my age (that's their current excuse for not running it). Actually have had an ultrasound on the abdominal area back when it was uncertain what was causing the pain, came back normal so hopefully that's a good sign. For sure, your post is thoughtful and well written, the input is appreciated
  32. 4 points
    I have to say I agree with this. I think this poster might have a lot of other problems and Celiac is just the one he or she is focusing on.
  33. 4 points
    duuuuuuuude. you are speaking to a forum of celiacs. we *alllll* face these difficulties. are you saying my life sucks? i went undiagnosed for TWENTY FIVE YEARS. i am 6 years into the gluten-free lifestyle and have not developed any other major difficulties. in fact, all those terrible things (symptoms, tons of them) went away. you won't see a whole bunch of long time board members all the time on here because they've figured it out, healed up, and moved on. from time to time, they'll come back for some specific advice or solution to a problem, but mostly, they've gotten their sh*t together and got on without us. we miss them, but glad they got it sorted out. i would say stop googling at this point. this is the best interactive forum there is, hands down, no doubt. yes, for us, every day's a picnic - literally, because you have to bring your food everywhere, lolz, but you will get used to it. it takes 24-48 hours for me to realize where and what has glutened me (which was at a restaurant, usually, so eat before and go for the WINE <love it, k, lolz) and the company if they're not jerks. cross reactivity IS bulls$#& (i got you, peg!) and if you're confused about what has made you sick, keep a food journal <which, i use the myfitnesspal, yes, i am also supposed to have some ungodly # of calories each day = that's what BEER is for lolz (gluten-free of course - i special order it at my local store and they keep it JUST FOR ME) i sneak food into places. i sneak beer into places. i've put gluten-free beer into plastic water bottles in the racetrack parking lot b/c no glass bottles were allowed. use your creative side!! i have 10,000 backpacks/lunchboxes/coolers, yes i do. amy's stuff is crap. you can share an oven with gluteneaters (just use the top rack if food is uncovered), you can walk through the bread aisle, and it takes exactly 4 minutes to make a pb&j sandwich to throw in a bag with a bottle of water. BOOM. done, son. jump in the car (or whatever) there you have your spontaneity. i make big meals and freeze portions for when there is a dinner i want to go to so i have something to bring. or i call and see what's on the menu and make something to bring that is similar (and usually BETTER hahaha) or i'll bring a gluten-free dish to share. nobody even bats an eye when i show up with my backpack full of goodies. when we go on trips, i bring a cooler with premade sandwiches and whatnot depending on how long we are going for. had to do a funeral out of state. found a gluten-free restaurant and ordered a bunch of food to go and it kept me for a week. my son has type 1 diabetes (that got diagnosed before i ever heard about what celiac even was) and we couldn't figure out where in the world that came from (same gene) but that doesn't necessarily doom you to the future. wash your hands with soap and water. when in doubt, it don't go in the mouth <if you're not completely sure something is safe, do not eat it) take it easy, one day at a time, we all started at the same place, you will get there. and last: you're THIRTY?? i wish i had a dx when i was 30... you're gonna be soooo freaking healthy. trust me
  34. 3 points
    So I started taking Creatine to boost my workout performance and muscle mass building, it is like someone entered the god code on life. Used to be I got tired after 3-4 sets. Now I am sitting here an hour later 12-15 sets and still not feeling tired and pushing further while gaining muscles. This had me wondering, could this help the average joe or jane suffering from chronic fatigue and feeling tired. I use B-vitamins, caffeine, vitamin D, magnesium also, and my mental energy has been well for years with them and the Keto diet. But this....this just took the body fatigue I used to get and trashed it. I sorta expect a crash, I mean 20miles+ a day, 1-2hours resistance and weight training. I think my fitness monitor would freak out most. But I feel great like I am alive again.
  35. 3 points
    Celiac.com 02/20/2019 - Pharmaceutical company ImmusanT is developing a celiac disease vaccine called Nexvax 2. Many vaccines provide long-term or permanent protection against disease after just one, or several doses. Because celiac disease is not caused by a virus, like polio, but is a response to the presence of an antigen (similar to an allergen that triggers an allergy), the approach to creating a vaccine like Nexvax 2 is different and, in some ways, easier, than creating a traditional vaccine, like the HPV vaccine. Nexvax 2 is a vaccine in much the same way that allergy shots are, but not in the way the polio vaccine is. Celiac Vaccine is Similar to Allergy Shots Unlike traditional vaccines, such as the polio vaccine, or the measles vaccine, Nexvax 2 does not inject a small dose of dead or weakened virus, or any virus fragment, into the patient to achieve disease immunity. Allergy shots work by desensitizing the body’s reaction by strengthening the immune system, thereby reducing or eliminating reactions to certain allergens. Nexvax 2 would work in a similar manner to allergy shots. It would build tolerance levels until there was little or no immune reaction to gluten exposure. Anyone who’s ever had allergy shots knows that their effectiveness can range from person to person. Some people get minimal relief, though most see good to excellent results. Many experience tremendous relief, and see their symptoms disappear. Nexvax 2 Faces Easier Path to Approval Because Nexvax 2 works less like a traditional vaccine, and more like allergy therapy, the process for testing and approval is potentially easier and shorter; several years, rather than a decade or more. The hope is that, once treated with Nexvax 2, “the immune system, now seeing these fragments of gluten in a different way, might learn to tolerate gluten," said Benjamin Lebwohl, director of clinical research at the Celiac Disease Center at Columbia University. Certainly, the ability to reduce or neutralize the body’s reaction to gluten in people with celiac disease would be a major breakthrough in the treatment of celiac disease. Benefits for celiac patients could include a reduction in severity of gluten contamination symptoms, and potentially an elimination of symptoms entirely. Nexvax 2 treatment, if successful, could allow some people with celiac disease to safely consume wheat. That is potentially huge news. Phase two clinical trials of the Nexvax 2 are slated for completion by the end of 2019. Read more: Promising Celiac Vaccine Nexvax 2 Begins Phase Two Trials
  36. 3 points
    Hi Sueps, That's rough stuff for sure. I had a similar thing with a long recovery. 5 years and still didn't feel very well. It seems there are a few possibilities. You are eating something that your body reacts to. You have another condition going on. Since the food issues is something we can control and change, I'd like to think that's the cause. I don't know how you did your exclusion diet, but there is a potential gotcha depending on method. Imagine a person is reacting to carrots. They eliminate carrots from their diet for a couple months and feel better. However, imagine that some person is now also reacting to peppers. And they do the same carrot elimination diet. They haven't eliminated peppers though, only carrots. So they are carrot free for a couple months but they still feel crappy because they are continuing to eat peppers. If they had eliminated both of the problem foods at the same time, they would have felt better. The way around this multiple food sensitivity problem is to do an elimination diet differently. Instead of eliminating just a single food, instead eliminate most foods and slowly build up by slowly adding one food at a time. It's a slow process but effective.
  37. 3 points
    I am a little confused. So you went on the Fasano diet with your doctor’s approval to see if you could finally rid yourself of DH, right? It appears that the diet has been successful because your DH has resolved and now you want to experiment with alcohol. Chances are your gut has healed too. Usually DH appears much faster. I listen to those with DH because if they get glutened they can actually SEE it! Do you have any good guesses as to how gluten was getting into your diet before the Fasano diet? Or did you determine you were super sensitive and that 20 ppm was too much for you? Your response could help fellow DH sufferers. Back to alcohol. I personally would choose a potato vodka and squeeze fresh juice (e.g. an orange) into it. I did the Fasano diet too and it may or may not have healed my gut. No way to know for sure. It did not help my actual stomach because a repeat endoscopy revealed a healed small intestine but autoimmune gastritis. On the Fasano diet, I did consume coffee with cream. I did not drink Gatorade. I think the PED GIs allowed that because kids will drink it and it helps with electrolytes which can be good for active celiacs. The diet did let me debunk that old silly internet coffee cross reactor myth for sure!!!
  38. 3 points
    Hi Joe, Welcome to the forum! How long we take to feel better varies a lot. One of the most important things to help that healing is to keep 100% gluten-free. Or as close as we can manage. The immune reaction in celiac can take months to calm down. So any little ingestion of gluten can trigger a months long immune attack. Depression, anxiety etc are linked to celiac disease. Our bodies don't function well without the critical nutrients they need to operate and repair cells. That can affect hormones that affect our mood and also nerves that form our brain. Did you know your brain is mostly made of fat cells and nerve cells? Celiac damage can make it hard to absorb B-vitamins that are important for nerve health. That can affect our brain. Celiac can also reduce our ability to absorb fats. Your anxiety could very well be caused by celiac damage. And it could reverse or go away too. Just stick with the gluten-free diet carefully and be patient with your body. You may feel better not eating dairy for a few months. Celiac impairs our ability to digest dairy sugar (lactose).
  39. 3 points
    Gluten removed beers are not safe for celiacs. The testing does not work them properly so there is no way to tell. Stick to beers made not using gluten grains if you have celiac.
  40. 3 points
    This is not a good plan for finding out if this is dh. FIRST: ALL celiac testing requires the patient to be on a full gluten diet, not a gluten light diet & not a gluten free diet & not a, "I only went gluten free for a couple weeks & then started right back eating it for 3 days" diet. THIS INCLUDES DH BIOPSIES! I get so pissed with these doctors who tell the person to try going gluten free & see what happens. Makes me want to pull my hair out!!!!! If one had gone gluten free & then wants to be tested for celiac, they have to do what's called a gluten challenge: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ NOTE: 60% of those with dh test negative on the celiac serum panel. If you suspect dh, the easiest, best way to get a dx is to get a dh biopsy Here's a whole bunch of links for you: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ 9 times out of 10 the dermatologist will do the biopsy wrong & take it right on top of a lesion. Take someone with you to make sure it's done correctly b/c they like to take it from areas where you can't see what they're doing such as your back. http://www.cureceliacdisease.org/faq/how-is-dermatitis-herpetiformis-dh-diagnosed/ http://www.cureceliacdisease.org/faq/ive-had-rash-patches-on-my-left-forearm-that-itch-and-burn-but-didnt-have-the-blisters-could-it-be-dermatitis-herpetiformis-dh-even-though-i-dont-have-the-blisters/ http://www.cureceliacdisease.org/faq/whats-the-sequence-of-events-when-gluten-is-consumed-for-someone-with-dermatitis-herpetiformis/ http://www.cureceliacdisease.org/faq/if-im-on-a-gluten-free-diet-can-i-still-have-outbreaks-from-dermatitis-herpetiformis-dh/ http://www.cureceliacdisease.org/faq/im-scheduled-to-have-a-skin-biopsy-to-screen-for-celiac-disease-should-i-maintain-a-gluten-containing-diet-similar-to-those-who-are-being-screened-via-blood-or-intestinal-biopsy/ DH can come & go whether one is on a gluten free diet or not. You see, the antibodies are deposited under the skin & they are vexing as hell -- I swear they have a mind of their own. It takes time for them to all get out of your skin -- varies with each person; and until that time, the dh can wax & wane.
  41. 3 points
    So sorry to hear of your suffering, Jamey. I empathize deeply. The overwhelm can be staggering. My son and I are both celiac, and when we were finally diagnosed it took months of hell to organize our lives around it and to begin to feel we could do it. It is so hard without support. What I can tell you is that it gets better and a little bit easier over time. We now know what we can and cannot eat, and have gotten creative with ways to socialize around food so that we're not isolated. I think sometimes it helps to just vent the frustration and be kind to yourself and allow the emotions of it all. The biggest thing that has helped us is to find others who are also dealing with celiac, and get the support, make new friends, so that we don't feel so alone and abnormal. My son went through a period of depression after being diagnosed, but the interesting thing is that once we started supplements to help his body get the nutrition that was missing, he began to feel much better almost overnight. I have read that it's a very real issue for celiac to cause depression...the nutrition that the brain isn't getting, the way that society socializes around food and that feeling of isolation having to cope in social situations, and also especially knowing it's a diagnosis that doesn't go away. We've found it really helpful to focus on what is going well in our lives, because just appreciating what's okay begins to amplify our positivity, which grows. Just know that I see you and you're not alone, ok? And also that there is so much support for you out here on the internet, and with others who are also dealing with celiac.
  42. 3 points
    I'm only a year into this and was doing some research when I saw your post was at the bottom of the page. I've never posted here, but I felt compelled to reply. I feel what you are going through. I so get that. I'm so sorry you are stuck in your celiac rut. I understand the starting to fall into a depression. This does absolutely suck. Hugs to you and encouragement. You are not alone. College is hard enough to handle without the additional pressures of a chronic illness. You are studying nursing. This tells me you are a giver, and you likely put yourself last. Your body is telling you it's time to make it about you again. If you haven't already, please, let your professors know what is going on with your health. They should be able to give you some accommodations for when you have these fallouts to reduce some of the stress. For the time being, tighten up your diet. Go back to the simplest and cleanest whole foods until you can do a serious search of where the contamination is coming from, but try to get the healthiest foods in you. I know that is hard in college. If you don't eat a lot of grains, make sure you are getting vitamin Bs through supplements. I was not aware that I was B2 deficient, and that messed up my mind and my sleep. If you still struggle with your diet making you sick, try the AIP diet, Autoimmune Protocol diet. That made a huge difference for me. Mental health is an important as the physical. Even if you can't get your workout (my body needs a workout, too), go for a walk outside (if you are able) to get some sun and time with nature until you can. Study outside. Read outside. Just get outside. It might not seem like much, but I believe that saved me. When I was so depleted, just walking in the sun with music in my ears helped me start to get my mind turned around. It was the beginning of the change I needed to get it out of its depression. Walking turned into jogging, and now it's interval training and back to boot camp exercise. I'm sorry this is what you are going through. Courage to you! You are going to make an exceptional nurse because you go through these things. Your understanding and compassion will be far superior than others who have not lived this life. Remember you are never alone with this. That helps me at times when nothing else does. Love to you, and keep posting your progress if you have time.
  43. 3 points
    First off again wait for the biopsies to come back in, second NCGS is a real thing and can cause celiac like symptoms but no actual gut damage. If your having DH then those need to tested, Celiacs with DH normally have less intestinal damage but can be more easily diagnosed via skin biopsy taken next to the lesions of the rash. Wait for testing to be 100% complete then treat this as if you were dia positive for celiac regardless. You will probably feel much better and by the sound of it this could be your cause. Keep a food diary, write down EVERYTHING you eat and how you fix it including seasonings etc. Change up your diet and rotate foods around staying off some seasonings and ingredients for a few days. Record how you feel throughout the day at set intervals. Look for patterns, this is quite enlightening and simplifies matters for other intolerance, and allergy issues.
  44. 3 points
    heatman, the symptoms you described may be due to vitamin deficiencies... Celiac Disease causes malabsorption which results in malnutrition. Even on a gluten free diet malnutrition may occur. https://www.ncbi.nlm.nih.gov/pubmed/12144584 Deficiencies of the B vitamins can manifest as skin problems, intestinal upsets, and headaches. https://www.celiac.com/articles/24658/1/A-IDifferential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html The nine B vitamins work together, so all should be supplemented if one is low. https://www.ncbi.nlm.nih.gov/pubmed/26828517 Celiacs that supplement B vitamins do better. https://www.ncbi.nlm.nih.gov/pubmed/19154566 The B vitamins are water soluble and need to be replenished every day. They are used up quickly when under stress. Fat soluble vitamins, A, D, E, and K, may need to be supplemented, too. You may want to consider discussing vitamin and mineral deficiencies with your doctor. I thought I was getting glutened somewhere, but after turning my house upside down, changing my shampoo five times, and lots of research, it turned out I had vitamin deficiencies. After only a few days of supplementing my B vitamins, my skin began to clear up and I started feeling much better. I hope my experience can help you on your journey to wellness.
  45. 3 points
    The gold standard is still an endoscopy. In Europe, they are diagnosing children without an endoscopy. In adults, the majority of GI doctors still choose to do an endoscopy. Why? Celiac disease in adults has so many symptoms. The blood tests are good, but not perfect. You can also have concurrent issues like Crohn's, cancer (very, very, rare), an ulcer, etc. The biopsy can reveal the amount of damage. Not everyone can do the endoscopy due to long wait times, being very ill or financial issues. http://www.cureceliacdisease.org/tag/biopsy/page/2/ Lab ranges can vary, so without those I can only assume you are positive, Personally, I needed it. I wanted definitive proof. What? My hubby had been gluten free for 12 years. It was hard on him. I also only had anemia as my symptom. I needed to know for sure! But that is just me. You need to decide, but make sure you get an official diagnosis. Makes it easier to screen family members and you tend to get more support from medical and family, in my opinion. My endoscopy was easy peasy!
  46. 3 points
    @Ennis_TX -- you have both celiac disease and UC. I would not recommend fasting. You are not overweight and do not have diabetes. You need every bit of nutrition you can absorb. Fasting is the new "thing" out there in diet land. But there is no scientific evidence as to how it impacts you in the long term. Sure, historically, if you did not find food, you fasted. But typically, you were dead by 40. Keep doing what works for you! There is no "cookie cutter" recipe for anything in life because there are too many variables.
  47. 3 points
    Sweet mother of God...I think I have finally found it!!! As a lover of all things baked, I was devastated to learn of my celiac diagnosis. The first thing I thought was " But I love bread...warm, butter topped, just out of the oven, deliciousness". NOOOOOOOOOOOO I have been trying for a while to get close to replicating my baked little pieces of heaven...unfortunately, I was unsuccessful...Until now. I have found that "Cloud 9" gluten free flour mix is giving me great results. Its a 1:1 substitute, which I love. I have found it in a lot of grocery stores but Costco carries a huge bag for around $9.
  48. 3 points
    So sorry to hear this it must be so hard and upsetting to worry for your son. I was diagnosed 1.5 years ago and i can tell you that as hard as it may be, try not to worry. It takes a while to overcome the gluten "withdrawal" and the symptoms do not just go away that quick. It will take at least a few weeks maybe longer for things to turn positive, but they WILL turn positive. He will heal fast children heal much faster than adults. He will be ok trust me, he will be ok. Stay the course and take care of him and yourselves as you start this tough journey. It gets better don't worry
  49. 3 points
    And I agree with Karen. You're a troll. I am un-watching this thread. To my fellow celiacs and NCGS on this board: This is only my opinion but continuing to answer or reply to this person will only exacerbate his/her continued arguments. This person wants to cause disruption. I will not be a party to it & I advise none of the rest of you to either.
  50. 3 points
    I had a rough time getting my diagnoses too. Hang in there but be firm with the doctors and insist that they do not write off any of your symptoms. In my case, I was dealing with the VA. I started out just having abdominal cramps one day but they were so strong I couldn't stand up straight. Then the weight loss started. I dropped 20lbs in 2 months even though I was eating a lot. Then weird stuff started to happen like my eye sight got blurry, my teeth started hurting (all of them), and I got terrible headaches with dizzy spells. The VA said I had PTSD which I told them where to stick that diagnosis. They kept trying to put me on all these anti-depressants and other meds. I wouldn't let them. I went to a different doctor who said it was gall stones so they took out my gall bladder. Everything got worse and another 10lbs was lost. Finally, I went to a third doctor who I told the whole story to. He tried to say PTSD too! I couldn't believe it. I never even told him I was a combat vet. I asked him about it and he told me that I had an Operation Iraqi Freedom hat on and that is how he knew. I looked right at him and told him, "I'm going to take off this hat and you need to pretend you never saw it and I'm going to repeat the same story and then tell me what you think." I did that and just like that, the doctor asked, "Do you have any food allergies?" My point is that he was about to make the wrong diagnosis all because a hat I was wearing. Hang in there. Sometimes you need to find the right doctor. Press them to do the tests you want them to do and if you don't get an answer you like, let them know or try another doctor. Remember, I only got the right diagnosis because I took off my hat. Good luck.
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