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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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  1. 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.
  2. 3 points
    Hi Phoebe- We're paddling up stream in the same boat. I have a 12 year old daughter who was diagnosed with celiac disease 6 weeks ago. She struggles with a lack of appetite, abdominal pain- often worse than pre-diagnosis, and increased pain after eating. The evenings are the worst! I call it the celiac witching hour. After a few bites of dinner she often starts moaning and ends up on the couch. She is TINY, 10% on the growth chart for her age, skin and bones, and has lost 3 pounds over the 4 weeks. I know how you feel, exhausted, discouraged, and terrified that trace gluten is contaminating your girl. Over this past week and a half I feel we are turning a corner. Here is what has helped: 1. Our GI rechecked her TTG's, they are coming down nicely, so I know she is not getting trace gluten. Depending on your daughter's case, your GI may do the same. It was helpful to decrease my anxiety and rule that out. 2. Our GI took her off dairy a few weeks ago, I KNOW it's an awful thought and exhausting to contend with removing more from the diet, but it's not so bad. The good news is you will know quickly, in about a week if dairy is making a difference after removing it. The problem is lactose in milk products. When healing from celiac, compromised intestines often don't successfully communicate with our other organs to emit digestive enzymes (including lactase, the enzyme needed to digest lactose in milk based products). Also, you can simply give your girl a lactase chewable enzyme for kids with a dairy containing meal is she really loves a certain foods that you'd rather not take away right now. Fairway Milk is lactose free, it's ultra filtered, so very high in protein, low sugar, and delicious (my kids like it better than regular milk). Truly, I found dairy is relatively easy to substitute. I will say however, taking our daughter off of dairy for two weeks did not make a difference, but maybe something that will help your situation. 3. When my daughter wasn't eating a substantial meal, she would still take her multivitamins. These can be tough on the stomach lining and cause stomach upset and nausea. I started to make sure she had a good meal before taking her MVI. 4. We were given the thumbs up on probiotics. My daughter took children's culturelle daily for a few months: prior to and after diagnosis. I pulled it 2 weeks ago just thinking maybe it's too much right now for her system. Maybe something to consider. 5. My daughter improved consistently (much less abdominal pain, formed BM's, and began eating much better) after adding childrens digestive enzymes with each meal. What I mentioned in #2, the lack of digestive enzymes with celiac disease, may include other enzymes in addition to lactase. Maybe it was timing, that she was naturally turning a bit of a corner, but it also coincided with starting "Tummy Zyme" kids digestive enzymes by Animal Parade. I read about the lack of digestive enzymes in the book "Celiac Disease-a Hidden Epidemic." I then researched kids digestive enzymes and these were rated well. 6. I found by talking to my daughter she could pinpoint what didn't upset her stomach, foods that she seemed to always tolerate well. Maybe due to simple ingredients, or maybe psychological, she could always tolerate skinny pop (popcorn, salt, and sunflower oil) and Milagro corn tortilla chips w/ Goodfoods chunky guacamole. I add extras in her school bag, in the car, and on the go for snacks. I'd let her choose these over other healthy snacks or foods I had in mind if it meant calories and her actually eating. Maybe there are foods your daughter can pinpoint helping? I recently talked to a few celiac disease moms and they said it took up to 3 months for their child to feel better and eat well consistently. I've also heard it's not uncommon for your child to have good/better days and then bad days during the healing process. I hope you're daughter begins to feel better soon and is able to take in more calories!
  3. 2 points
    With chronic illness like Celiac and other immune disorders I believe one after diagnosis goes through the actual shock of the diagnosis and goes through something similar to the Kübler-Ross model (the five stages of grief ) . While this model is tied to the emotions experienced of survivors of an intimate's death, I believe people with life threatening illness or chronic illness experience something similar. The model encompasses five stages of emotions- denial, anger, bargaining, depression and acceptance. https://en.wikipedia.org/wiki/Five_Stages_of_Grief Once one begins to experience some relief from the physical symptoms, the emotional can erupt during times of quiet. IMHO this would be natural to the process for us. Only you know if you agree. I think it is normal, natural, for us to experience. Letting it out, journaling, poetry, writing, creative outlet is helpful and then moving on to the healthy skills/hobbies the other posters above discuss are all helpful. And as many mention in other posters make sure your body is getting the vitamins you need. This can be socially isolating since society focuses so much on food especially around the holidays. Cut yourself some flak, your not alone, and as you see above their is a wonderful community here to support you. Best Wishes Edit: I forgot one more hobby-music. I have since my middle school years have loved music to express what lies within the soul. If you don't play an instrument or the fall out of the illness causes difficult write, sing it, any outlet you can. There is a song for every moment of life. If it gets to intense to express let music express it for you
  4. 2 points
    Check back on the post from the past, I did one 1-2 years ago with the recipes for my dressings etc I think. I use Riverside turkey says no gluten...I do not eat it but I know I can cook it for the family safely. I use Authentic Foods Potato starch for dusting the pans, thickening gravies, dusting the turkey bag (a turkey bag can be used in the oven to cook the bird and you do not have to baste it). I also used to use authentic foods garfava flour to make a cornbread/dressing bread knock off. Using my keto bread this year. I am also making keto diner rolls this year. Delmonte makes safe green beans, I am cooking with a local gluten-free store brand of bacon in the pot and I use either pacific brand or kitchen basics stocks. Big Tree Farms coconut sugar is used to fix stuff for the family desserts, use my own pie crust (recipe in the recipe section) I have used libby pumpkin but am using a local HEB organics version this year for making they pie. Most everything else is whole fresh foods. OH and spicely organics poultry seasoning, along with some of the the original liquid smoke on the turkey. Nutivia Butter Flavored Coconut oil is used under the skin and over the breast, and for cooking everywhere in the kitchen. https://www.celiac.com/gluten-free/topic/116449-thanksgiving-2016/
  5. 2 points
    The better you can stick to the diet the better your healing should be. Try and make sure you always have a safe snack handy in case you're far from home. I guess you're far from home on a regular basis but you know what I mean! Try and heat as well as you can, especially in the first few months. Your body is probably starved of nutrition so eat well. Also, despite the blood test results, consider taking a decent vitamin supplement. I take B vitamin complex and magnesium and find both help with tiredness etc. Good luck
  6. 2 points
    Just an FYI, when I first was gluten-free, even too much of a gluten-free product, like cookies, would cause the itch to come back. So be very careful to not eat too much of those certified gluten-free foods, as those 20 ppm add up! That was about 10 years ago for me, these days I don't have any itch or dh is I get CC'd or glutened.
  7. 2 points
    I thought I would bring up a interesting topic of digestion enzymes. I myself have issues with digestive enzymes for me my issues spike in the evenings, it gets so bad in the lat day, that my dinner has to be a smoothies, porridge, shake, or super soft with no hard solids in it. Other wise I puke it up, I also find that I can not digest red meats, or poultry, and fish and crab can be consumed early in the day but not afternoon, and many times they pass through undigested. I started taking Jarrow Enzymes Plus and extra Jarrow Bromelain to deal with digesting my foods, failure to do so means puking up said food 3-6hours later. PS if it floats on top of my stomach it is going to come back up since it can not be broken down, when it starts going rancid it comes back up. Amusingly Cooking our food super soft, and easy to digest also neutralizes the natural enzymes in said foods making them a double edge sword of easier on our stomach, less abrasive, and seemingly easier to digest. But requiring our body to put out more enzymes from our pancreas to break them town tapping into our own reserves and in many cases is not enough. This leads to malabsortion of nutrients and compounds issues for those of us with celiac disease, colitis, etc. I did some research and am going to paste some information I have found from various sources about enzymes and how they effect the body. Are you suffering from malnutrition? If you are suffering from digestive enzyme deficiency, there’s a good chance you are. It’s hard to believe someone who eats three full, healthy meals a day and takes a multivitamin every morning could be malnourished. But it’s more than possible, especially if your digestive system doesn’t get the enzymes it needs to fully do its job. Digestive enzymes take the foods we eat and break them down into the nutrients our bodies need to stay strong and healthy. Unfortunately, our bodies don’t always produce enough enzymes to digest food properly. Even if you eat properly, being careful to consume nutrient-rich foods every day, it won’t do you much good if your body can’t make the best of those nutrients. Also, your body can’t digest food properly without enough enzymes. Not only can improperly digested food seep into the bloodstream and adversely affect on your immune system, it can also gather in the bowels and become toxic, which can result in many ailments and diseases. Also, if you find yourself craving certain foods, this can be a sign that you are suffering from digestive enzyme deficiencies. Food cravings are often your body’s way of telling you that you aren’t getting enough of something it needs. Chronic enzyme deficiencies have been linked to a variety of health problems, including: Acne Allergies Arthritis Chronic Fatigue Depression Hay Fever Heart Problems Hypoglycemia PMS Psoriasis Sinus Infections The Common Cold Making sure your digestive system gets the enzymes it needs to digest food properly is one way to put an end to minor ailments, prevent more serious health problems, and improve your overall health. Protease deficiencies: With a protease deficiency the body lacks protein. A lack of protein can result in poor absorption of calcium as the blood needs protein to do this. The longer effects can result in brittle bones, osteoporosis, arthritis, sore and painful joints and ear infections. Undigested proteins, especially from meat, lead to an over acidic and toxic digestive tract. This can lead to a range of symptoms from indigestion, bloated stomach, excessive gas and inflammation of the colon. The long term impact can result in the chronic digestive disorders colitis, Crohns disease and an increased risk of colon cancer. Protease has an active role in cleansing the blood of waste, bacteria and viruses. With a deficiency your immune system is weakened and compromised exposing you to more yeast and gastrointestinal infections and disease. Other protease deficiency symptoms include water retention PMS lack of sleep candida constipation low blood sugar Amylase deficiencies: Amylase is the enzyme that digests carbohydrates and converts them in to glucose. Glucose is the fuel that provides us with energy. If you are deficient in amylase there is a high possibility your diet consists of too much carbohydrates. Amylase plays a role in controlling the inflammatory responses to the allergic reactions. Therefore, a lack of amylase can increase occurrences of the skin conditions eczema, psoriasis, dermatitis and allergic reactions to insects stings. Symptoms can include; bacterial infections that do not respond to antibiotics sore and stiff joints high blood pressure poor blood circulation – cold hands and feet mood swings chronic fatigue Lipase deficiencies Lipase is the fat digester. If your deficient in lipase you have an increased risk of becoming overweight and diabetic. Fat is the hardest of all foods to digest and with a lipase deficiency high fat foods are the ones you need to avoid. This enzyme has an important role in helping cells absorb nutrients and dispel waste. With a lipase deficiency cells are unable to obtain the nutrients they need and toxic waste builds up because it cannot escape. This can lead to complications with diabetes and also cause symptoms such as chronic fatigue. Other symptoms include; diarrhea bloating cystitis muscular pain
  8. 2 points
    I worked in a bar when I was in college. Glasses back then, never went through a dishwasher. They were washed and then dunked into a sanitizer solution. Weekend nights were so busy that the bartender was forced to speed things up. You would find lipstick markings on glasses. As a barmaid, I checked. I wanted to be tipped well. Not sure how much gluten might be left on glasses that are hand washed. No one has had the time or inclination to study it, I guess. Today, many bars in the US use dishwashers, but not all, even in nice hotels. When they are busy, it is all about making the alcohol sale. They revert to the old sink cleaning method. Fine for germs, but not sure about removing gluten. I ask for a to-go cup usually reserved for soda. I explain about celiac disease and the wait staff or bartender is happy to accommodate me. Usually, I talk to the bartender.
  9. 2 points
    Check the recipe section have some of my reicpes and even a few things from my bakery there https://www.celiac.com/gluten-free/topic/119394-gluten-freegrain-free-chocoalte-mug-cake/ https://www.celiac.com/gluten-free/topic/119746-grain-free-chocoalte-pumpkin-brownies/ https://www.celiac.com/gluten-free/topic/118661-cinnamon-roll-cookie-cake/ https://www.celiac.com/gluten-free/topic/117818-grain-free-vegan-cheddar-biscuits/ https://www.celiac.com/gluten-free/topic/117479-paleo-cinnamon-cake-recipe/ https://www.celiac.com/gluten-free/topic/117322-vegan-cheesy-garlic-knots/
  10. 2 points
    I always use whole spices and grind them myself for the freshest taste anyway. Did this before gluten-free too
  11. 2 points
    I did a post earlier where I recommended to not do it- and I must not have posted it, lol. as long as you've got the villous blunting, I would be pretty confident of your celiac dx. Unless you've been taking nsaids ever day? That can do it as well. But I'd stick with gluten-free living for now. Were you on levo or armour for your hypo? Because once that's under control you're u should feel so much better. Levo gave me occasional heart palps but they went away after a week. Not that it's done much for my symptoms.... I've heard armour is superior for many folks. hope you feel better very soon!
  12. 2 points
    Celiac diagnosis was 6 years ago. Feel great now. This week, I was getting a routine colonoscopy and received a prescription for a powdered medicine called Prepopik to ahem, clean the intestines out. I have been glutened by powdered mixes before so I realized I should check the ingredients as a precaution. No gluten-free labeling and a vague, tiny disclaimer about "allergies to additives". Googled but came up short. Finally called the manufacturer, Ferring. Turns out cranberry-flavored Prepopik has gluten but orange-flavored is gluten-free! I had cranberry ready to drink in my hand! Close call. I barf for a day if I have gluten so under anesthesia for the colonoscopy, I would have been dry-heaving and at risk for aspirating. Argh. Want to warn everyone about cranberry-flavored Prepopik! Who knew? My now-fired GI's office had never heard of it. (They seem to deal with elderly, very ill people who are too sick to google.) Now I'm wondering if this has caused major complications for someone out there! Never let your guard down about gluten. Even if the guy who diagnosed you with Celiac is prescribing you something. Good luck!
  13. 2 points
    "October 20, 2017 (Mississauga, ON) The Canadian Food Inspection Agency (CFIA) has made an announcement that the words “gluten-free” will be removed from all Cheerios package sold in Canada by January 1, 2018. The Canadian Celiac Association first objected to the claim in August 2016 and strongly recommended that people with celiac disease not consume the cereal, even though the box was labelled “gluten free”. The announcement came in a letter addressed to a Canadian consumer who was one of many customer complaints to be filed against the products......." https://www.celiac.ca/gluten-free-claim-removed-general-mills-cheerios-sold-canada/
  14. 2 points
    Approximately 30% of the USA population carry one of the genes for celiac disease. But only about 1% actually develop celiac disease, which can happen at any point in life., young, old or in-between. Having the genes does not mean you have celiac disease, it means your immune system may turn celiac at some point. There is also an increased risk of celiac disease with gastric bypass surgery. A couple of people have posted about developing celiac disease after having gastric bypass surgery in the past.
  15. 2 points
    Hello again I'm not sure where you've read this or perhaps if you've been told this by someone but it's not true. The biopsy is not rendered useless by finding out you have lactose intolerance. Far from it. Lactose intolerance can be a symptom of the intestinal damage, it's not a cause of it. If anything the lactose intolerance strengthens the case for avoiding gluten. It does help to be careful where you draw your information from. There are a lot of bogus sites which put forward dubious theories or seek to promote particular products. My advice would be to try to stick to the university health sites which use peer reviewed science for their sources. "I swear I'm just a medical mystery that's bound to end up in a medical journal one of these days!" To recap. You have a positive celiac blood test. You have a positive biopsy. You've been told you carry the celiac genes. You have POTS and various other symptoms consistent with celiac. From the outside there doesn't appear to be a mystery here? Please reconsider the assumption that you've made that the diagnosis is incorrect. I believe you've made this on an imperfect understanding of what celiac is and how it manifests. It's not primarily intestinal in the majority of cases. The symptoms you've described are consistent with those experienced by celiac patients who are ingesting gluten. The links I posted to you at the beginning of this thread will tell you more. Best of luck
  16. 2 points
    The Gene test is a hit and miss many have celiac and not the gene and vise verse, frankly the human genome is still being studied and quite the mystery how some stuff works with some and not with others. Hince why we do not have the 100% option to use gene therapy to cure celiac yet, though I joke about it one day. How does you having lactose intolerance phase into your not having celiac....quite the opposite. The damage caused by celiac often causes lactose intolerance as the enzymes are in part produced by the tips of the villi....if you have damaged intestines these are the most damaged. SO many of use with celiac disease develop lactose intolerance. Hell I got my lactose issues diagnosed over 6 years before my celiac. And Diarrhea was never a issue with me in my teens, or as a young adult, heck it was not until 2 years after going gluten free that I saw D as a new symptom to a accidentally CC. Before that I actually had chronic constipation and thought it was normal not going to hte bathroom but once every 2-11 days (note part of this leads to a kind of toxicity build of as the stuff sits in your gut). Biopsy is almost always accurate the blood test can be iffy, if you got both...well you just got both barrels of the gun and well, you have it. I just had the most wonderful time at a gluten free expo, Imagine a food expo where nothing gluten is allowed in the door, there are food cards on each table that tell you what allergens are present in the food there were 4 bakeries there, 5 companies with pizza, various muffins, fries, sauces, chips, instant meal, rice, cakes, baking mixes, etc all gluten free. Samples of everything, coupons for discount, etc, >.< with my corn, dairy, meat, yeast, issues I only found like 3 things I could eat but still new ones. I was there as a ambassador for the Nima Sensor, it is a portable gluten test kit that you can take when you want to eat out. I met some other ambassadors there who talked about using it when they ate out to confirm food was gluten free. One talked about going to chick fil-a and eating the french fries and grilled nuggets after testing them and was so happy since they had not eaten there in over 5 years apparently. She also talked about eating at twinpeaks, chilis, and some other place I do not even recall. Point is there are now more options out there and testing kits that allow to eat out without risking getting sick since you can test your food for the poison before hand.
  17. 2 points
    Yep, I love meat flavor but can not digest it due to damage from complications with autoimmune diseases. So I had to develop alternatives over the years. As a chef this also allows me to serve vegan meals to people and opened up new opportunists and business options. I am when I came up with the crazy idea to chop it up and marinade it over night in chorizo seasoning exactly like you would real meat then ran it in the meat grinder with the the burger plate...it was messy but the resulting ground product has the texture and flavor of chroizo minus all the grease. The soft and tougher parts of the jack fruit grind up into a combined texture you would get with real sausage so this is quite epic in the fact it resembles real sausage better then other vegan alternatives on the pallete. I do suggest doing this in large batches, I do 2x 2lb bags and vacuum pack it into portions for a 4-6 month supply (I use it on rotation with other flavors) Adding in liquid smoke can give it that smoked meat flavor in addition. I cook up the chorizo for breakfast in a bit of oil, and make wraps with other ingredients in either lettuce leafs or coconut wraps, growing up in a Mexican family this is a god send reminding me of eating breakfast with my grandpa.
  18. 2 points
    Celiac was excluded in my case also Kirsty, negative blood and endoscopy. There are potentially more people out there with a problem with gluten who test negative for celiac than there are celiacs themselves. It's called None Celiac Gluten Sensitive or NCGS. It would explain both many of your symptoms and the reaction you noticed when you reduced yr gluten intake.
  19. 2 points
    Kirsty, in my experience, being ‘gluten light’ is not helpful. I think it doesn’t make any sense tbh – it does more harm than good. The withdrawal period is very different from being gluten-free long term. The withdrawal symptoms can be extremely unpleasant but they are temporary! Let’s say 4-6 weeks. I personally was feeling like a drug addict or an alcoholic in rehab at the time. I was having all kinds of withdrawal issues – one of them was extreme hunger and unusual stomach cramps caused by hunger. I had to eat approx. every 2 hours – otherwise I would get very dizzy and lightheaded. It felt as if my body was finally getting the types of foods it needed (= gluten free) and wanted these ‘right’ foods constantly. The fact that my body viewed gluten as a drug and was addicted to it was a proof in itself for me that I am gluten intolerant. Let’s say I wouldn’t eat any potatoes for 2 or 3 weeks – nothing would happen. Often the types of food we love the most, crave and can’t live without are the very types of food we are intolerant and addicted to. If you’re not a diabetic, the hypoglycemia could resolve completely on the gluten-free diet. My advice would be read about gluten withdrawal and don’t let it discourage you.
  20. 2 points
    Dear AWOL Cast Iron Stomach, Your husband is right bread is bad for you. Of course it's more than bread and gluten, until now it was amateur hour trying to self diagnose and tame this "lion". However they let you down. You slipped through the cracks over and over again it is not your fault your not the Dr. You made mistakes and errors acting like a celiac , not knowing for sure you were, and not feeling like you could fully claim to be or reach out for support . Now you know your husband was closer than any Dr. up until now to determine your illness. Now something is in your record, now hopefully you will be dismissed less,respected more, maybe they will realize its an actual condition going on- not all in your head. Will they? Who knows! Do you care? This is now official, now explained, you not only have to give up gluten, but milk, and corn. In fact give up 98% of processed anything. The cluster of lifetime symptoms were not "just you", "in your head", "you are not a difficult patient", "when the Dr or nurse looks at you like a nut job you don't have to feel the dismissiveness and condescension. It's an illness and nothing to be shameful of what is shameful is they and their colleagues missed you failed you. In fact being missed for 4 decades is unjust to you. You were missed time and time again from age 5 to 43, decade after decade after decade, symptom after symptom. It's not that you didn't try from the 5 year old begging to go to the Dr, to the 20 going to the hospital again for another bout of gastroenteritis hoping to get an IV, to the thirty year old saying something is wrong why is this happening, to the forty something a restaurant fed me gluten when I asked for gluten-free, I have been gluten free for 3 1/2 years , I have more symptoms and pain than before . I felt so good for those gluten-free years- please help me-make it stop. So many things explained it makes you experience a range of emotions. Grateful: Relief and gratefulness someone finally agreed to send you to someone to test you. She saw past the other diagnosis' and the albatross IBS diagnosis. All the ages and stages of symptoms are explained they all fit. Everyone of them! Someone else also has had them. You are not alone. Read the forum-you fit like a glove. Anger: Anger for the way you have been treated by the medical community, family, some ex boyfriends, friends and coworkers. Anger for the length of time you endured this. Hurt: Hurt for the times people said unkind things to you when you were symptomatic or flaring . you are experiencing symptoms that change your body people are rude to congratulate you on a "pregnancy" you didn't announce or ask why you are not slim when you hardly eat. you are not over emotional - you are suffering from neuro symptoms, you are not making this up for attention Sad & Guilty: Can I work again? Do I want to work again? What kind of work can I do now? Can I find a job and work PT from home? You didn't envision this your husband having to be sole bread winner now what? I am overwhelmed thinking about this-stop? You now have closure and know how and why you lost your first pregnancy. You now know why you were high risk, complications, with your children in Pregnancy & Delivery that they couldn't be explained back then It explains why in pregnancy you lost weight and why your morning sickness was extreme and seemed to last longer than anyone you knew, that your Puppp rash was likely misdiagnosed DH It is not your fault none of it. Please forgive yourself for what you did not know. Your children forgive you. Believe them when they say its not your fault. You can cry, but you can no longer blame yourself. You are a good mother just one with an illness your children will learn to accept. Withdrawn: Why are you withdrawing from your husband? Should you ask him if he wants a divorce? Should you push him away? You didn't know before marriage what was happening you knew something autoimmune was brewing shortly after, but nothing showed on tests. Was this unfair to do to him? Doesn't he deserve someone better? Someone well? Now you can't retire and travel the world as society retirement cliché dictates. Can you afford this illness ? How will this financially impact your spouse, your family?. Why did you do this to this poor man? You are so selfish, you wanted marriage and kids, but was this fair to them? Don't your kids deserve a healthier mom? How will this impact them? Oh my gosh are they going to get this too? Will they grow to resent you? Your illness and diet has taken over their lives! Oh gosh no one say hi to me-please. I hate people and I am too sick to pretend and be fake friendly today. I don't want to tell you I am ill. I don't want to talk about this. I have to absorb this. I hate you people for being healthy. Don't tell me I don't look well. I will snap, I don't want to snap, I am irritable ,and don't feel well. Just keep giving off the unapproachable vibe keep them away. Am I strong enough to do this? Acceptance: Calm down the inflammation, lack of nutrients, and GI damage is messing with your head. Your husband said for better for worse. Your kids have no choice you are their mother and you are a good mom -you have always been, always will be even on your worst day. If they get this they will be ok. You are strong enough to do this you are just ill and most importantly you must remain here in case they get this so you can guide them and be there for them. Got it? Go on the forum you are not alone it will be ok. You will get this lion back in the cage and manage it. It will be ok. If you can't travel in retirement one day you will find other hobbies or things to occupy your time. He's not going to leave you over this. If he does it will be ok. You'll manage-you always do. You have an answer, you knew it was coming, keep reading, learning, seeking support, and one day it will all work out. You will process all this and will be at peace-until then keep going and above all AVOID GLUTEN!
  21. 2 points
    Hey Joseph! You might re-think that gluten-free oatmeal. For years, oatmeal was prohibited. Researchers eventually determined that some celiacs could have oatmeal as long as it is pure (no possibility of cross contamination from field to factory). But some 10% of celiacs still react to oatmeal. Plus, there is a new controversy over sorted vs. dedicated grown oats. So, best to avoid oats for the first six months and then experiment. When my GI tract is inflamed from celiac disease (flare-up) from accidentally being exposed to gluten, I stick to well-cooked foods (even fruit). It makes it easier to digest. Once better, I go back to my normal gluten-free diet.
  22. 2 points
    When we have DH (the skin form of celiac) and neuro impact (depression and anxiety) we have to be very strict for those problems to resolve. The rash can take a long time to clear as the antibodies take time to clear out of the skin. Many also have to avoid iodine. I only had to avoid iodized salt but some have to also avoid high iodine foods. After the rash heals we need to add iodine back in though as it is a needed nutrient. Do check your toiletries for gluten ingredients. While gluten can not be absorbed by intact skin if you have a rash present then your skin is not intact. You say you have increased the amount of sugar you eat. That is not good. There is a lot of food that is naturally gluten free. That is what we need to go with. It can be hard on us socially but there are ways to cope with that effect. Many bring food to a restaurant that is safe or eat before leaving home and just get a drink. Celiac is only isolating if you let it be. Have you had a repeat Celiac panel run? That would be a good idea to make sure that your levels are going down. If they are not then you have gluten sneaking in somewhere. If you haven't already do read the Newbie 101 thread at the top of the Coping section. It has a lot of good info for you. You may find you haven't been as gluten free as you think as gluten can be sneaky. I hope things resolve for you soon. It is very important you follow the diet strictly. It isn't just a case of perhaps dieing early. Celiac antibodies can attack pretty much any organ and can also contribute to the development of cancer and thyroid issues. It is a pain to get used to but get used to it you must for your sake and for the sake of those who care about you.
  23. 1 point
    The other test looks like the one to determine if the TTG IGA test will work on you. The simple explanation is - a few people don't make "IGAs" that show up in the blood test. In those people, they have to do a different test. This shows that you are able to make the "IGAs". A strongly positive TTG test, like yours, almost always means Celiac. If the test was slightly elevated, it could be from something else. For example, my son's test was very slightly positive, but when taken again later, was very negative. MY TTG was over 100 - it wasn't from a virus or something else. http://www.cureceliacdisease.org/faq/which-blood-tests-should-i-have-to-screen-for-celiac-disease/
  24. 1 point
    Try using the gluten-free blends in a about 1 to one replacement, first start off with about 1/4 less then add by the tbsp til the texture is about right, as gluten-free flours sometimes cause the end result to be a bit drier. I honestly make a sugar cookie with almond flour that works great for the holidays, I do not use dairy or creamy butter so mine is a bit drier and crsiper then those from my childhood (yes I miss those) But it helps a bit with that craving. I might dig up mine, they are grain free with a deep nutty flavor and drier PERFECT for dipping in coffee or almond milk.
  25. 1 point
    Hi Jenny. How long have you been gluten free? Have you potentially come across CC ate away from home, a processed food that is new to you? I get neuropathy issues among many other issues. For me it is my left upper arm goes numb aka falls asleep like sensation and my big toes both feet. Typically this is when I am actively consuming gluten before went gluten-free and at/after my challenge. As gluten-free if I get cc by gluten I go numb , if get cc by corn another intolerance I get shooting nerve firing. So yes celiac and food intolerance s can cause this in some people. It is best to stick to whole foods for now and keep a food diary to suss out any gluten cc or other intolerance. Edit - also check vitamin b12, other b' s and magnesium also are important. Do you get enough? B vitamins are water soluble so if you have absorption issues and don't consume enough and they are depleted this also should be on your radar. Sublingual b12 maybe necessary so t enters the blood stream vs. Pill /gi route. Lastly some require b12 shots if the prior options do not work.
  26. 1 point
    Hi LexieA, It's perfectly ok to grieve or feel down because of a diagnosis of celiac disease. Feelings are not obligated to perform on command. But, over time you can adjust to the new diet reality and even like it. Getting used to eating mostly whole foods and more natural foods is a good thing. There are lots of new food ideas to explore and learn. There's a thread on 5 minute microwave buns on the forum somewhere. Plus threads on bread recipes. Breakfast ideas thread, snack ideas threads etc. I don't do much baking myself but sometimes I make gluten-free peanut butter cookies, 3 ingredients and they taste great. So there's a lot of neat stuff to learn and it does get easier in time. There is a gab/chat section of the forum which can be helpful at times. There used to be an online message chat feature on the forum but I don't know if that is still active.
  27. 1 point
    I'm hoping to donate to celiac research this year. Does anyone have recommendations as to where to donate? Celiac Disease Foundation? Celiac research at a hospital or university? Thanks!
  28. 1 point
    I am glad you got your diagnosis and I am pleased to hear you heart procedure went well. I wish you much comfort and healing on your path. "but just got diagnosed w vertigo n they are treating me for that!" Oh gosh I have had bouts of vertigo over 20 plus years -I know ell what you speak of. I refer to it as my "fun house" periods.
  29. 1 point
    Got that right. I describe it as buying a roller coaster ride ticket and then finding out you can't get off. You white knuckle it, accept it, then ride the ride, while learning much about yourself , your strength, and emerging coping skills by default
  30. 1 point
    I have not found any that are reasonable (a gluten-free kit is available on Amazon and they want $50 ). Either you make the GINGERBREAD walls from scratch (gluten free) or just use cardboard as a base and “glue” on gluten-free gram crackers or “stucco” (fondant) with frosting or We never eat the end product; however, the kids consume plenty of decorations while it is assembled. I would not recommend handling a gluten gingerbread house. It is too crumbly and the risk for cross contamination is great. So, make a gluten free version or create a new holiday tradition.
  31. 1 point
    I hear you on this, I live alone, isolated by allergies, and this disease often, spending the evenings alone wishing someone would come by and join me for tea, coffee, or hell even board games sound great at times. I find myself trying to help others on these boards with my knowledge, feel useful and needed. I drink flavored teas, from republic of tea, and coffee flavored like desserts from Christopher bean coffee to "treat myself" and I try to sometimes get online like I used to as a kid and play video games (nerve damage makes games frustrating , hard, and I can not do multiplayer anymore) Best thing to do is distract yourself, workout, clean the house is always mentally rewarding, hobbies (if you can afford them). I also find peddling on a stationary bike while reading or watching a show to help burn off energy/stress while distracting my mind.
  32. 1 point
    I'm just thrilled to hear how much better you're feeling now Fbmb!!! I know at first there, it was a bit rocky. You sound so much more relaxed now and much more sure of the diet. Wonderful news! I have not a worry in the world that your test will come back in normal range. You were only 1 point over last time the test was done. I know you are very careful & adhere to the diet strictly but I will wish you luck anyway even though I'm sure you don't need it.
  33. 1 point
    Welcome! Recovery from celiac disease can take a lot of time. Most members report that healing took months to a year or longer. It all depends on the systemic damage that occurs throughout the body and we all have different issues. It also depends on how fast you learn the gluten free diet which typically has a steep learning curve. Check out the Newbie 101 thread at the top of the “Coping” section. It contains valuable tips. We are here to help each other. 😊 Best advice? Be patient (so hard.......)
  34. 1 point
    Maybe I will see you on this cruise..... http://glutenfreecruises.com/budapest-gluten-free-cruise-2018 or this: http://bobandruths.com/gfgetaway.html All 100% gluten free! 😊 Seriously, I would love to go to an adult celiac camp. No luck. No time this year, but I will be on that gluten-free cruise in the future!
  35. 1 point
    I have the same experience. My DH usually starts showing by that evening. I don't make many mistakes with gluten except when I'm eating out when traveling. When I get DH, it's usually from dairy. Dairy has the same reaction but without the acid reflux that gluten gives me. Most of our family has the same reactions. I have had many iGg tests and also found to have a problem with soy, and garlic and nutmeg someday I'm going to write a letter to my grandchildren and tell them all that I've learned and to apologize for the genes I've bestowed on them. R
  36. 1 point
    There is probably flour in the air. I work in a gluten-free bakery and you can wipe down the counter and thre next morning, there is a thin layer of flour that has floated down from the air.
  37. 1 point
    Protein shakes with nut butters, almond milk and vegan protein powders sip on it throughout the day. I suggest Nutra Key-V-Pro or MRM Veggie elite for main protein blends supplement with extras like Jarrow Plant formula, Jarrow Pumpkin (Pumpkin is high in zinc, magnesium etc. is great for recovery). Focus on a higher fat/protein diet, for me carbs are evil, I use a ketogenic die of high fat and protein to body build. (Check LuckyVitamin.com for these) Julian Bakery makes some great protein bars, and right now even has a sale on pumpkin and sancha inchi proteins under the peagan protein name. As a bakery owner I developed grain free ketogenic bread of just fats and proteins but you can order one that is about the same from Julian Bakery as they can ship theirs. Nut butters on everything, avocado on everything, I make grain free nut butter and nut flour based baked goods to throw fats galore in my diet. Probiotics might be a consideration after some healing, if your gut is still really damaged they can cause complications. Meal wise I found eggs and omelettes to be a huge things for me and I can throw good amounts of kale, spinach and leafy greens in it, leafy greens are quite important for helping regulate nutrients and hormones. Certain foods should be avoided as a body builder like soy, and a few others. Everyone is different but some have issues with dairy I am lactose intolerant due to damage from my celiac disease (many celiacs can not process dairy very well due to the damaged villi contributing to lack of enough enzymes to break down dairy) but I would suggest to anyone to try removing dairy from their diet for 30-60 days and see if it helps with health. I mean your trying to body build/put on weight what if you body can not fully utilize dairy proteins and you just wasting your time eating it? Whey and Casein can work but in many cases vegan protein powders are better, and I will say egg protein powders and beef protein isolate are much better then either but much more expensive and some people have issues with them. Another thought if on a high fat/protein diet you might not have enough digestive enzymes to break down all the extra protein/fats. you might consider something like Jarrow Enzymes Plus and Jarrow Bromeline to help you body break down and utilize protein betters. I have posted a few grain free recipes in the forums that are good, remember to watch you sugar intake and keep it low, you want to gain muscle mass so keeping your insulin stable is key. Otherwise sugar and and carb loads can contribute to fat gain in unwanted areas. If your going for a lean muscle weight gain there are a few exercise regimes you should focus on, such as sculpting and light cardio.
  38. 1 point
    All that can be attributed to celiac disease. There are over 200 symptoms that are attributed to celiac disease. You might have many, a few or NONE. Yes, there are documented asymptomatic celiacs! Keep going on your challenge. Talk to your doctor if you get really sick (I assume he/she knows you are doing the challenge). Celiac symptoms can also wax and wane over a course of time. Wierd, but true. Since you are putting yourself through so much misery, insist on a complete celiac blood panel. Leave no stone unturned. Why? Maybe you are like me and test negatively to the common TTG blood test. Chances are you do not have cancer. Did I mention that anxiety is a common symptom. Of celiac disease? This can resolve, so no worries. Good luck and keep us posted!
  39. 1 point
    I hope you get answers too but I'm really glad to hear he's willing to redo in a few more weeks. It sure sounds like you got extremely lucky with a dermatologist who actually knows what the heck he's doing when it comes to dh.
  40. 1 point
    Hi Lisa, I'm sorry that you are having these issues! Are your celiac antibodies normal? If they are, then this sounds very much like thyroid issues. When you say your labs are normal, can you be more specific? Get a copy of your results if you don't have them. Thyroid ranges can vary. Some doctors are still using an outdated range of .45 to 4.5 even though most people feel at their best with a TSH close to 1. The Free T3 and Free T4 numbers are really important and should be in 50-75% of the range. If your numbers aren't in this area, but are in the "normal" range, you could most likely benefit from some thyroid medication. Hope this helps!
  41. 1 point
    I had a negative blood test, but due to doctor not knowing about gluten it was probably invalid as I'd been gluten-free for some time and only went back on it for a week beforehand. My gastro then moved me straight to endoscopy on basis of symptoms and prior response to gluten-free diet. Endoscopy was negative after the challenge however, bar gastritis and hiatal hernia. I did a 2nd blood test, never given results but I believe they were negative. It was a big shock as I was convinced it would be positive. There are no guarantees however and I'd had enough of being back on gluten. I've come to realise whether celiac or NCGS doesn't make much difference if you know gluten affects you. Either way you have to strictly avoid it, or at least I do. Consider trying to address those other issues. Either by looking for additional intolerances, it's not uncommon for these to surface after gluten is removed, so look at fodmaps for instance? Or by looking at diet and supplements. I've found I function a hell of a lot better with a regular B complex supplement and Magnesium, calcium and zinc supplements. Don't do another challenge unless you absolutely have to. You may put your recovery back and at your current stage you may have more healing to take place which a challenge would delay. All the best
  42. 1 point
    Celiac experts came up with a standard for food manufacturers to follow and to keep most celiacs safe. So, they determined that 20 ppm is a safe threshold for a majority of celiacs. Notice it is a majority — not all celiacs (Read the supporting studies and the FDA guidelines. When a celiac is not responding to the gluten free diet, experts have developed a very strict diet that greatly reduces the chance for any hidden sources of gluten. We all refer it as the Fasano diet, but many can take credit. It basically eliminates gluten-free grains (except rice) along with many processed foods. Now some patients might not be very careful, but many are very careful, so it seems like trace amounts of gluten may impact a celiacs health. The reality is that there is a lot more research needed, but unfortunately celiac disease lacks funding. In the meantime, start with the standard gluten-free diet, try to identify other intolerances and if you are still not better, try the Fasano diet for a few months. Everyone needs to determine the best diet for their individual needs. If this sounds daunting, consider working with a celiac-savvy dietician. (I am writing this for some of our Newbies.)
  43. 1 point
    Thanks for the update! It's thrilling to hear she's gained 3 lbs already!!!!! HOORAY! I'm so happy you found a good Ped GI for her. That can make such a huge difference.
  44. 1 point
    https://www.celiac.com/articles/24913/1/Celiaccoms-Ultimate-Gluten-Free-Safe-Halloween-Candy-List-for-2017/Page1.html
  45. 1 point
    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
  46. 1 point
    Please don't apologise! You're very welcome here and please don't be afraid to post whenever and whatever you wish. There are no foolish questions, all of us were where you are now once. There's not much data on 'how much' gluten you should eat but CyclingLadies link from the other thread has some guidance: http://www.cureceliacdisease.org/faq/how-much-gluten-should-be-consumed-prior-to-being-screened-for-celiac-disease/ Sounds like you should be fine as is Not sure, they typically tend to want to look, endoscopy is the 'gold standard' although there are people on here who have been diagnosed without one, so it's not set in stone. From what you've said so far they will very strongly suspect celiac and may be happy for you to proceed straight to the diet so you can hopefully put on some weight, so really one to discuss with the consultant. Stay on gluten till you speak to them though! Also speak about the waiting list. It may be that you can call on a regular basis to check for cancellations for example, or there may be another hospital in the same trust that could offer you a quicker service. Be sure to write some notes before your meeting so you dont forget to raise a point, easily done in stressful circumstances. Definitely ask, but not sure if available in UK aside from maybe private labs. Here they are: tTG IgA and tTG IgG -DGP IgA and DGP IgG -EMA IgA -total serum IgA and IgG (control test to ensure tests are not false negatives) One final point, I know this is horrible and stressful but I get the feeling you are close to some answers and hopefully finally some healing and relief. Be positive for these last weeks and try and pick out some foods to enjoy! Best wishes and lots of luck
  47. 1 point
    I pretty much get sick if I am at a party and make eye contact with someone who was thinking about cookies that contain gluten. I am also the single most paranoid person I know. Having grown up on a farm I can say with 110% confidence that you are so far beyond paranoid and have gone so far beyond the realm of science that I don't even know where to start. Chicken is fine. I'll leave it at that.
  48. 1 point
    Are you concerned because you've noticed changes in your cycle? Because that was one of the reasons that I went gluten-free to begin with. Ultimately the short answer to your question is...yes. There are many of us who have had problems with fertility with or without an official celiac diagnosis. I am self-diagnosed Celiac (my grandfather was diagnosed and I carry both a Celiac and non-celiac gluten sensitivity gene) but my blood tests were negative since I'd already started the gluten-free diet before I was tested and my doctor believes that I am NCGI. Personally, one of the reasons that I went gluten-free was to see if it would help regulate my period. Unfortunately, while my overall health improved drastically since I changed my diet. I still ended up being diagnosed with primary ovarian insufficiency (or POF-Premature Ovarian Failure as it's commonly called) at age 32. Here's my story with regards to that. I started having trouble with irregularity when I was about 28 1/2 years old. My cycle shortened from 29 days like clockwork to every three weeks (in addition to suffering from hot flashes, terrible night sweats, loss of libido, urinary frequency and dryness). After having my blood tested a couple of times over the past three years (and coming back normal each time) I ended up getting abnormal results the last time around as I was preparing to begin trying to get pregnant. What truly indicated the POF for me was not the high FSH but the measurement of my Anti-mullerian hormones or AMH and the fact that I am not ovulating and probably haven't been for a while. Recent studies have shown AMH to be a better indicator of ovarian reserves than FSH. Normal women at my age (32) are around a 3 or 4. When tested my AMH was at 0.11 and then even lower when they re-did the test. When you get to 0 there are no egg follicles left. (When the Dr. ultrasounded my ovaries I had no follicles in my right ovary and only 3 in the left...also consistent with the diagnosis) AMH is a newer test that wasn't in use frequently three years ago...so my regular doctor wouldn't have known to use it. Currently, I am still having periods, but my FSH is above normal (though not yet fully menopausal) and both my estrogen and testosterone levels are low. I was told that my only hope of getting pregnant would be to use donor eggs and IVF since my odds were less than 2% if I was going to try to use the few remaining follicles that I have. Fortunately, or unfortunately for me (depending on how you look at the situation) I am in a lesbian relationship which makes access to sperm extremly difficult, but access to a second uterus par for the course. In light of our situation, I have decided not to pursue IVF with egg donation at this time (Even though our HMO insurance in Illinois would have covered the vast majority of the costs! Amazing...simply amazing. Illinois is one of only 6 states to mandate infertility coverage including IVF in health insurance). If I had done the egg donation, my wife would have been my donor...but after reviewing the possible side effects of IVF we decided that we'd be better off if she carried the babies rather than me getting pregnant and risking triggering any additional auto-immune problems. I'm sorry to throw my sob-story at you...but I needed to get it off my chest and perhaps find a way to encourage you to be your own best advocate. I was worried for years and kept hearing "you're young and healthy." from my doctors. Sure, I am young. And I'm much healthier than I've ever been...but that doesn't mean that I didn't know when something was off in my body. You are the best judge of your situation. If you have concerns, listen to your intuition and don't wait to start trying (if you can). If it is not a good time for you to be pregnant now, but you still think you want kids. Actively pursue a good relationship with your doctor and consider checking your AMH in addition to your FSH, Estradiol, and LH. The AMH levels will let you know whether or not you have a good amount of follicles in reserve. The higher your number, the "younger" your ovaries are and the more time you can wait. Blessings and good luck to you!
  49. 1 point
    I am curious, how do your breakouts appear after being glutened? My daughter (age 7) who we still don't know if she has DH or not, but after going gluten free her skin issues have resolved themselves. However, she still has some marks on her inner thighs that have never gone away (purplish spots where the leisons used to be). We have found that they are getting irritated again, maybe "acting up" and not necessarily new leisons. Thanks!
  50. 1 point
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