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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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  1. 28 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. 3 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.
  3. 3 points
    Hi Sarah. Ok, so just how RANDOM is life?!! I was just googling Old El Paso Tacos to check if they were gluten free and an answer on this site - with your question on the left side bar - popped up. Random as statistically, your chances of meeting another neuro presenting Coeliac (as we spell it over here;) are frankly slim to zero! I have literally just signed up only so that I can reply to you! So, the man you want to be googling is Dr Marios Hadjivassiliou who runs the only Neuro Gluten Clinic in entirety of UK and is probably the world's leading authority on the subject. My own diagnoses (DX) took nearly 5 years as my symptoms too were primarily neurological (list just endless but I'd be happy to talk to you if site has a way of PM'ing phone number?) VERY long story cut VERY short is I saw every frickin specialist you can imagine, had private healthcare and money wasn't an issue so I wasn't even limited to the NHS and longer referral appointment times between specialists but it STILL took years of horrific illness - and terrifying given primarily Neuro based, like I genuinely thought had brain tumour or MS or such like; was horrifying - to get a DX. DX finally got only AFTER read a (tiny, so again sheet luck) piece on Hadjivassiliou's work called 'Bread causes migraines' in one of the national newspapers. I marched BACK to one of my then endless consultants and insisted on blood test for Coeliac and I recall him laughing at me [grrrr...] but thank god I held my ground as my marker came back positive and gut biopsy confirmed it. Gastroenterologist insisted all would be well within 3 months once villi grew back. That was a crock of sh*t. He knew NOTHING vis Cryptic Coeliac (typically the term used for Coeliac that does not present primarily as digestive issues) - worse, as was by then so so familiar to me from very senior consultants across all specialisms, nor would he concede that he did NOT know everything IYKWIM? So 3 months on strict gluten-free diet comes and goes, and actually much that I hadn't even realised was 'wrong' started to improve but the Neuro symptoms were not shifting and Gastro knew NADA about them and just dismissed me. Eventually I decided I HAD to see Dr H. even though he is based in Sheffield Hallam Hospital which is literally hundreds of miles away from me and even harder as he is a Doc of principle and does NO private work so I had to beg his NHS secretary for an appointment. He was an utter revelation. He nodded with EVERY symptom I discussed, he knew my walk and he knew my tribe. The simplest headline he offered me was, in his experience and from his cohort of patients, that the Neuro symptoms were much much slower to lift than the gastric ones. Further, those that were still present at the 2 year mark were likely to not further recover. He was absolutely spot on correct. ALL of my neuro symptoms bar migraines (so balance issues, muscle weakness, golden 'rain' in front of my vision, vertigo - list just endless) gradually lifted by that 2 year mark and (again, bar migraines which remained daily/chronic/intractable having onset SO suddenly 5 years previously and never ever suffered before) they have never returned. I now have the PRE-Empt Botox Protocol for migraine prevention so even that last lingering Neuro issue does have some resolution. I lost literally years of my life to this due to the failure of GPs and Specialists not even knowing how Coeliac (celiac disease) presents and have made it my mission to raise awareness which, fortunatly, my profession has enabled me to do. It is now believed that what USED to be regarded as 'typical' symptoms of celiac disease are actually the minority symptoms - hence one in a hundred people having celiac disease but only one in EIGHT of those ever beig diagnosed. IE for you and me and every other single other person who HAS a DX, there are another 7 poor souls living in torture and terror simply due to a lack of GP/MD education. It infuriates me (can you tell?!!) Please, google Marios, his research will be your new best friend and answer questions you may even realise you had until you see his work. Really hope this has helped in some way, back off to search for my gluten-free Tacos again now! Kindest regards and such best wishes, Emma x
  4. 3 points
    In case it's helpful to know, my daughter's TTG came back at over 3,000. (Not a typo; reference range 0-20 is negative, 20-30 is weak positive, >30 is positive, and they stop counting at 3,000.) The ped GI at the local nationally known teaching hospital did not require endoscopy, but diagnosed her based on that lab, a second set of labs which had the same numbers and also showed positive for genetics. It's been a week gluten-free and we're seeing some improvement, but poor kid is going to take a while to feel well. Her primary symptoms were stomach aches and extreme anxiety - it was her therapist who actually suggested the celiac screen. (For which we are forever grateful!)
  5. 2 points
    I am hoping someone could possibly offer up ideas on several episodes I've had. First off, I am one of those Celiacs that is extremely sensitive. I've been told by my GI doc, 20ppm doesn't apply to you. Also, I have had chronic upper back and upper left quadrant pain intermittently for the last several years. So, with that said, serval months ago I accidentally ate a few bites of a regular burrito. I realized it because after bite one, horrible pain just to left of stomach (a chronic trouble spot for me), second bite the pain went through to my back (another chronic trouble spot) third bite so painful I went and got the wrapper out of garbage and realized my error. An hour later the vomiting/diarrhea started and lasted for about 5 hours. At the end of this time, I suddenly had pain so intense in my upper back I couldn't move. The pain was basically from bottom of ribs to base of neck and excruitiating, equal to no med childbirth with too much pitocin. It lasted about an hour and then subsided. Now I've had this pain happen twice just in the last 3 days. Once after possibly being cc'd, and then again 24 hours later with no possibility of gluten or cross contamination. The second episide sent me to the ER with pain in my chest and back that was absolutely crushing - and I got no answers whatsoever. I have been gluten-free almost 2 years and have had no predictability for this entire time. Beyond frustrated. Anyone with any similar experience I would appreciate your thoughts. I feel like a complete freak of nature!
  6. 2 points
    Just keep doing what you are doing. Honestly, I find the topic fascinating. I think having celiac disease or not, food manufacturers need to accountable for the items that they use to put in food and process it. Here is why I am not freaking out. We have too many members who eat processed foods and they have blood tests and endoscopies showing that they have healed. The research on this product indicated that more research is needed. We already have a bill prepared that will require drug companies to at least comply with FDA regulations in foods. Let's get that passed! I am not financially tied in with the GlutenFreeWatchdog (GFW) other than I subscribe (I also subscribe to Consumer Reports too). This might be a topic that Trisha (GFW) can research. I did a quick search but was not able to find much (other than to buy this stuff). So, no sense in worrying! People with celiac disease heal! 🤗
  7. 2 points
    We have a member who SWEARs everyone is low on stomach acid and tells everyone to drop PPIs and take betaine hcl which increases the strength of ones stomach acid. This might work for some people. There are many supporting articles, and published works on it, especially if you notice undigested food in the stool, Simply put some people have a issues where the acid is not strong enough or enough there to break down ones foods before getting into the intestines for proper digestion and absorption. There are even some conditions that are triggered by longterm use of PPI medications that can be reversed in some people by getting off PPIs and moving to betaine, just not everyone. For me personally I take a blend of Jarrow digestive enzymes and bromelain just recently to help break down my foods, ease gas, and help with digestion. Along with a low does probiotic meant for IBS. I tried the betaine thing for shits and giggles.....yeah that messed me up, and was not my cure. But we are all different.
  8. 2 points
    Can you give her some magnesium rich foods instead of the supplement? Foods are always the best way to get nutrients. Here is a link to a list http://www.healthbeckon.com/magnesium-rich-foods/
  9. 2 points
    Welcome to the forum Lakme! You can find a lot of good info on celiac testing at this link. http://www.cureceliacdisease.org/faqs/ You do need to eat gluten for 12 weeks before the blood antibodies test. A single slice of bread is enough gluten. Since you have been avoiding gluten the antibodies in your bloodstream may have dropped to a point they can't be measures now. But it's impossible to know for sure. The celiac testing process is a celiac disease antibodies panel followed by an endoscopy to check for damage to the gut lining. I suggest you at least get the blood antibodies tested. If you can afford the endoscopy that is good to do also. Another important test is for vitamin and mineral levels. Celiac disease can cause malabsorption and deficiencies in various vitamins etc. I am not clear on your skin issues? There is a skin rash associated with celiac disease that can also be tested. It is called dermatitis herpetiformmis or DH. A diagnosis of DH is a diagnosis of celiac disease. DH can be very itchy. There is also a celiac condition called gluten ataxia where eating gluten causes affects on the brain or nerves. People with gluten ataxia may have trouble walking and coordinating muscles. Since it affects the brain that can cause various symptoms. I'd be guessing if I tried to describe all the possibilities there. It can be much harder/more unpleasant to get tested for celiac disease after being off gluten for a few months. once you start feeling better and your body starts healing, the switch back to eating gluten can really knock a person down. So it's better to be tested before stopping eating gluten.
  10. 2 points
    Sounds like my hell years ago in a way, heavy anxiety, thought I was dying, I was running a bucket list, random bouts of anger and frustration at why my hands, feet would not do what I wanted, and my brain would not process things right, thoughts just seemed to loop, I was constipated for 4-10 days at a time. Layed out in bed someday. Had a few occasions where my body would just go out on me, like collapse to the floor once with only one arm responding. Eventually found out it was celiac, had to get my own place trash everything and start my life over from scratch in a gluten-free dedicated environment, soaps, foods, dishes everything gluten-free. Been slowing healing over the years and gotten much better. Had some other complication develop from the disease but at least I am not dead. I might suggest getting tested, eat gluten in small amounts for the test like a cracker or half a slice of bread a day, need to be eating it for 12 weeks for the blood test and 2 weeks for the endoscope. Ask you doctor for a FULL Celiac panel blood test, also see about getting that endoscope with several biopsies. Welcome to the forums. this place is great for support and you will find many of us have had similar issues. Thank god I never had the eye issues not being able to watch anime would have killed me -__- Still to this day wish I had the immortal body of Alucard. Anyway few links to help you out and give you some ideas, and make life easier. https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/ https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/
  11. 2 points
    It only takes one positive for a GI to proceed and order an endoscopy to confirm a celiac disease diagnosis. I tested positive only to the DGP, yet I had significant intestinal damage. Even in follow-up testing, I still just get a positive on the DGP (when I get accidentallly exposed to gluten). Now, my GI only orders the DGP and saves me/insurance money. The TTG is the most common celiac disease test given. It is cheaper than the full panel and catches a majority of celiacs. It can be raised due to other autoimmune issues, but with your symptoms (slow transit/constipation/IBS/B-12 deficiency), you have a very STRONG chance of celiac disease. Some folks can not afford the endoscopy and some don't get one for many reasons, but it experts still consider it the gold standard. I am very glad that I had mine. I needed a firm diagnosis in order for me to adhere to the gluten-free diet. It made it easier for me to get support from medical and family too. No bother. We are here to help each other! By the way, IBS really stands for "I be stumped!", in my opinion!
  12. 2 points
    Thanks for the welcome JMG and likewise vis a fellow Brit - I think I might stick around And Sarah, you honestly have SO much scope for hope (no rhyme intended!), you really really do, you are RIGHT at the beginning of your recovery and I can promise you from my own experience that stuff really DOES shift. Am labouring that point as I know just how vital 'hope' is and you genuinely are able to have it in spades, if you're already seeing improvement just one month in then Lord knows how much scope you have for improvement in 24 months. The other thing it's vital to always keep front of mind IMHO is that we really are the 'lucky ones' - it's the poor sods still being dismissed as having IBS, or 'balance' problems, or 'nerve' problems yet are no closer to finding out their actual truth that I feel horrendous for. One last thing, no clue if you have it but if you do have brain fog I would utterly recommend downloading the Words With Friends App - it helped my brain start to have to focus again as well as driving engagement with others; something that was lost when I was lost. Am so glad I happened upon your post and I hope that my post is of help to others when they are looking for answers as I know most simply do not have access to the skill of Dr H and the hope that that knowledge gifts them. JMG, one last thought - have you thought of doing the York Test? It's a bit pricey but very well worth it IMHO, ESP if your bloods are showing elevated inflammatory markers (CRP and ESD, former esp as can directly rise in response to ongoing Ig responses in body). Bit of a pain then needing to trial excluding other foods from diet when already tad restricted by celiac disease but what price health, freedom, and energy? I'd rather be on a restricted diet but able to paddle board than eat whatever I fancied but be sofa/home bound!!!
  13. 2 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.
  14. 2 points
    Hi MM, I think you are assuming gluten intolerant is ok and there isn't any need to be careful with gluten if it is NCGS. We don't really know if that is true. Certainly people with NCGS can have symptoms from exposure to gluten. We don't know much about NCGS yet, so we don't know if there are any long term consequences to a person with NCGS eating gluten. Some people with celiac disease get the NCGS label because they fail the celiac testing for some reason. Celiac disease testing isn't perfect. NCGS testing is non-existent. You are really new to the whole idea of the gluten-free diet at this point. It took me about 6 months to get half straight on it. It is real easy to make mistakes at the beginning of the gluten-free diet. That's why a whole foods diet is suggested, which makes things simple. Restaurants, especially fast food joints, are not a good choice regardless of their gluten-free claims. I would not suggest eating at any restaurants for 6 months. And then only eating at restaurants that are verified by other celiacs as being safe. You can often find reviews of restaurants on this forum. There are also some apps like FindMeGF that can help. There is a restaurant gluten-free certification program also. http://www.gfco.org/ I can't say I use the GIG certification really, but I don't eat out much either. It is better to take food with you than go to a restaurant in the diet beginning. Snacks like fruit, nuts, and boiled eggs are easy to carry. It seems gluten is hiding everywhere in the American food industry. Gluten is added to many processed foods that it might not seem like would have it. Barley malt is often used as a flavoring for instance. And wheat flour is used to thicken things. It's a minefield!
  15. 2 points
    If you REALLY wanted to find out if she has celiac disease, you would have jumped at the chance when you were offered to have her tested for around $90 (see previous thread). I understand that you want to resolve her many issues, but besides a celiac blood panel and/or an endoscopy, there is no way for sure to determine if she has celiac disease. It can not be based on symptoms alone because some folks never have symptoms! I could have sworn that my 19 year old niece had celiac disease. But she does not (she failed every single celiac test). Instead, She was diagnosed with Crohn's. She went through four GI's. I am sure a gluten-free diet might have helped her a bit, but her Crohn's would have gone untreated. Again, I understand that you are desperate. But can you base a decision on a few internet searches? Living with celiac disease is hard. You thought your daughter completely bought into the gluten-free diet, but she went and ordered fries without knowing that they were gluten free or not. You ordered grilled chicken that had been cut on a board used for breaded chicken too. A huge risk. See? This diet is hard, hard, hard. How can you ask strangers on the internet to diagnose your daughter (we can not)? It is your choice and she is your kid, but since she has been glutened a few times and she has only been gluten free for a two weeks, I suggest re-thinking a gluten challenge and get her tested. Have that yard sale. Since you are in the fence about parting with your cutting board and toaster, ask family and friends to contribute their junk. You will be able to off-set the cost of the celiac test. Karen's advice is excellent. Listen to her. She has attended several celiac conferences. She is dedicated to helping others with celiac disease. I get that some people have no choice but to diagnose themselves. But most of those are adults. I am sorry too that you are not working with a celiac-savvy doctor. Very sorry. I hope that your daughter's health improves.
  16. 2 points
    WELL. COLOUR ME SHOCKED. Endoscopy booked for April 7. Looks like our little community got a second GI
  17. 2 points
    Welcome. A gluten free diet has been reported to be helpful for those with autoimmune issues like thyroiditis, but I would encourage you to get tested for celiac disease first. It might be the root cause of many of your symptoms but you need to be consuming gluten for tests to be accurate. Learn more about testing: http://www.cureceliacdisease.org/screening/ and the reasons why.... https://celiac.org/blog/2016/09/9-reasons-you-should-be-tested-for-celiac-disease/
  18. 2 points
    Recovery times vary, and we all have slips in converting the the gluten-free lifestyle. I went five years with overt symptoms before diagnosis. After going gluten-free I continued to have symptoms for 4-6 months, while my intestines healed.
  19. 2 points
    Hi Alunke, Welcome to the forum! The other option if you can''t beam the gluten like on Star Trek, is you can eat the gluten for the same amount of time. You don't need to eat a lot of gluten though, a slice of bread a day is fine. We aren't all as advanced as Cycling Lady yet.
  20. 2 points
    Welcome! First, you need to be on a gluten diet in order for any celiac testing to be valid. You should ask your doctor if in fact, he tested you for celiac disease. These are the tests (University of Chicago's celiac website): http://www.cureceliacdisease.org/screening/ Going gluten-free for as little as two weeks can impact the tests. A blood panel should have been ordered and at least four or biopsies should have been taken during the endoscopy. Please get copies of all your lab results! This is a good habit to get into. Honesty, many GI's fail to properly test for celiac disease. Make sure your GI is celiac-savvy. Most people who have celiac disease can take weeks, months or years (yes, years) to recover. Remember this is an autoimmune disorder, like lupus except the trigger for "flare-ups" is known -- gluten. It is the only AI disorder that has a known trigger and there are about 100 AI disorders. So, while there is no cure for celiac disease, it can be managed. Most members here report some improvement within six weeks, but everyone heals differently and we each have different damage as celiac disease goes beyond the gut. I wish you well! The gluten-free diet has a steep learning curve. There are plenty of set-backs along the way, but eventually the diet can be mastered and health can improve.
  21. 2 points
    I'm so sorry. This must be very hard for you and your family. The guidelines for which family members to test and how often are a work in progress. Currently, I believe the guidelines state to test all first degree relatives every 2-3 years or if they ever develop ANY suspicious symptoms. (Remember 50% of people with celiac don't have GI symptoms so it can go undiagnosed for years). For example, when I was diagnosed 10 months ago, there were just vague guidelines to test first degree relatives. Our pediatrician emailed a well - respected gastroenterologist who basically told us there were no specific guidelines. Now the guidelines are more specific, but I suspect that will be modified in the next 5 years as people learn more about celiac. I had both my kids tested last year shortly after my diagnosis. My sister tested negative, but as far as I know, my parents have refused to get tested. Oi! One thing to note is that you can't ever develop celiac if you don't carry one of the genes DQ2 or DQ8. So, in retrospect, I realized that I should have had my kids get both a routine celiac panel and the genetic testing. That way, if they are DQ2 and 8 negative, they never have to be tested again!. In 3 years when they get retested, I'm doing both. As for teaching your son, teaching our kids to eat healthy is one of our toughest jobs as parents and now yours is twice as hard. I would think about making your entire household gluten free, especially if you have other kids. Kids are messy and not great at self control. The ones that can eat gluten will probably leave crumbs every where. And, the one with celiac will have less temptation if it's not around - Sometimes my kids go into the pantry to grab a snack. If there's real crackers or cookies in there, your celiac kid may not realize and eat it accidentally. The non-celiac relatives will get plenty of gluten at other places - work, school, parties, etc. As for specific, day-to-day stuff, I would reach out here as well as at allergy websites. Severe peanut and dairy allergies have a lot of issues in common with us celiacs regarding safe eating outside the house, restaurants, cc etc. Good luck!
  22. 2 points
    The only way to diagnoses DH is With a skin biopsy. Sometimes people with DH do not test positive on blood tests. http://www.cureceliacdisease.org/faq/what-is-dermatitis-herpetiformis-dh/ "...and only about 40% of them have the positive blood tests (serology) for celiac disease...." http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/
  23. 2 points
    Hi Hollye, I have a similar problem with my eyes as your child. (I do have Celiac disease.) When I've been glutened, one eye dilates noticeably more than the other and lasts several days. I do not get staring spells with it though. My eye doctor had me go to an eye doctor who specializes in the neurology of the eye. He said I had autonomic nerve damage that caused the dilation problem and the autonomic nerve damage was from my body's reaction to gluten. The doctor said that it will not affect my sight but the difference in dilation may become more pronounced over time and your eye will be more sensitive to sunlight, so sunglasses is obviously more necessary for me when outside on a sunny day. I have many other symptoms when glutened that are also from my body attacking the autonomic nerve. It might be helpful to research the symptoms of damage to the autonomic nerve to see if any others fit with your daughter's symptom list. Damage to that nerve is not something to play around with (and I don't think you would but might be helpful for your mother in law to realize). I have dealt with a couple family members who thought gluten could not be doing this to me and not taking gluten seriously, but they have since completely turned their opinions around when the medical evidence was shown and now they support me adamantly. Hope that helps!
  24. 2 points
    I would like to point out one thing to everyone on this board: If you purchase the NIMA, the app is NOT required to use it. If you download the app, please know that you are turning over detailed information about your self and your eating habits not only to NIMA but also to Google and/or Apple. While NIMA claims to currently anonymize the information, nothing prevents it from changing its position in the future. Nothing prevents either Google or Apple from using the information as it pleases. Many people may scoff at my position, but no one can say whether insurance companies or even employers may obtain the information in the future and how they may use it.
  25. 2 points
    Hi Mandy, Welcome and I'm sorry you're having such a hard time of it. I felt completely dumped/abandoned/etc by the health care professionals I went to for help. This forum has been so helpful. It's still hard, but the people here share their experiences and knowledge to help others. Keep advocating for yourself and learn as much as possible. I've been at it for 2 months and having lots of ups and downs. The Celiac Disease Foundation has unemployment benefits information if that's something that would be best for you: https://celiac.org/celiac-disease/resources/government-benefits/government-filings/. Like with medical issues, I've found it best to be armed with information when speaking with HR since a lot of times they don't know what employee rights and privileges are actually available. Each employer's HR department does things a little differently, so I'd read up on what yours requires and start the process if you need to. Good luck!
  26. 2 points
    Chlorine and Fluoride & Bromine(hot tubs & pools) compete with Iodine in the thyroid. Lots of water is good for the body, but if your thyroid is not in optimal condition, these additives could be throwing you off. There was a predictable rise in thyroid problems in the USA when these were added to our water supply! We recently bought a Berkey water filter to remove the chlorine and fluoride. We added liquid iodine to our supplement list because we use the super healthy pink Himalayan salt that has no iodine in it. Standard table salt loses it iodine in a couple months, so you're not getting what you think you are! So many little things can interrupt normal, healthy physiological pathways. It just doesn't seem fair that the majority of people can eat what they want, when they want and never have any noticeable side effects. The rest of us scour the internet to figure out how to cure these odd symptoms. Are you eating corn and oats? Dairy? These are big triggers for many people. Once you peel away the gluten, you sometimes notice symptoms coming back. That happened to me. I went through an elimination diet and it was my husband that found a lot of things that were triggering his IBS. He never knew it was the homemade tomato juice he drank every day along with fried eggs, that caused him problems. He now has no tomato products and can eat limited eggs. You have to be your own detective to find these things. It really won't come up on a blood test, nor do doctors really know about all these interactions. They know how to give you a pill to fix a problem or set a fractured bone. In reality, much of our modern diseases can be reversed by cutting out all processed foods, grains, soy and dairy. Pesticides also affect many people, so eating at least partially organic can lessen that load. Once your kidneys and liver have rid themselves of the sludge they've been filtering, you start to feel better. Getting back to basics with real, whole food, quality meats and healthy fats (butter & coconut oil) can be the only prescription you need! I sure wish I'd known about all this 40 yrs ago! Better late than never! Debbie
  27. 2 points
    Liver enzymes can be tricky.... They can go up just because of celiac, but if you are on a strict gluten-free diet and your antibodies are negative, that seems unlikely. The gluten-free diet is very high is simple carbohydrates which can lead to fatty liver (steatohepatosis) which is the most common cause of elevated liver enzymes in the US. Also, alcohol, drugs, hepatitis, supplements, and medications. Sometimes they go up temporarily and come down and no one really knows why. Make sure to write down all of your supplements, vitamins etc and show them to the GI doc. Good luck!
  28. 2 points
    Hi Gillian, Welcome to the forum! Four months is pretty early in the recovery process IMHO. That doesn't mean you can't do better and have improved digestion though. In celiac disease, what we eat is our medicine. Or our poison in some cases. So it is very important to choose foods that are good for our body and also easy to digest. Generally, whole foods like meats, veggies, nuts, and eggs are good choices. Having gut damage can cause our guts bacterial flora (microbiome) to get all out of whack and nasty. That can cause lots of symptoms by itself. Improving our gut biome requires healing first, and that means staying away from foods that cause upset. Sugar and carbs are bad for us when healing, as they feed bad bacteria that aren't good for us. So it's helpful to avoid sugar and carbs for a few months. That usually means avoiding processed foods which are loaded with starches and carbs. Dairy is often a problem at the beginning too, and some celiacs also react to oats. So it's a good idea to avoid both of those for a few months too. Digestive enzymes may help, Plain, simple foods are good.
  29. 2 points
    Did they biopsy the rash to get a DH diagnosis? If not, you may not have DH and Celiac. It, if you have DH - you have Celiac. Please read the links below from The Celiac Center - http://www.cureceliacdisease.org/faq/is-there-a-treatment-for-dermatitis-herpetiformis-dh/ http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/
  30. 2 points
    If you have DH you have celiac. Did your doctor run liver panels before he prescribed? He need to and he also needs to check liver function periodically while you are on the drug if you choose to take it. Are you gluten free? If you are not you need to be. If your doctor has told you to take Dapsone and not go gluten free you need a different doctor.
  31. 2 points
  32. 2 points
    I'm 6 weeks gluten free and I think my insomnia symptoms are improving! Yay!
  33. 2 points
    I am fairly brave about eating out, and we typically bring a bottle of gluten-free soy sauce. Since you speak Mandarin you should not have any issues explaining what you need. Some dishes that seemed to always be safe were Taipei noodles (very thin rice noodles with shrimp, pork, carrots, celery, etc), Jung (rice wrapped in bamboo leaves), fried rice (just order no soy sauce), etc.
  34. 2 points
    Haven't bought BBQ Sauce for years. If you're still interested I literally have nearly 100 recipes and make many regularly. Soooo much better in my opinion as you know what goes into it. And you just can't beat homemade. One of my favourite AP recipes (incredible on baby back ribs) is: Sweet and Spicy BBQ Sauce (makes 2 1/4 c) 2/3 c tomato paste 2/3 c water 1/2 c packed dark brown sugar 1/4 c unsulfured molasses 1/4 c cider vinegar 2 T chili powder (I grind chiles to make my own so I know it's gluten-free) 2 T light corn syrup 1 T Worcestershire sauce 1 t onion powder 1 t salt 1 t freshly ground black pepper 1/2 t garlic powder 1/2 t cayenne (I use McCormick's spices as they are gluten-free.) Whisk all together in medium saucepan over medium heat until sugar dissolves. Simmer on low for about 10 minutes. I make an awesome smokey BBQ sauce, too, if interested.
  35. 1 point
    I think it depends on how severe the damage was. I know from reading other accounts that it can take months to "heal". My two year old had immediate improvement (like two weeks), but we were very lucky to have our pediatrition catch the celiac quickly (within two months of noticible symptoms). It sounds like you are doing an awesome job keeping him safe. The only things I can think of off the top of my head are play doh and shampoo. Those were two things we were warned about by our nutritionist based on age. Play doh is made with wheat and shampoo poses an issue because they don't always keep their mouths closed. Maybe check lotions, soaps, toothpastes, lip balm? It's crazy where gluten is hidden in things like art supplies too. Our guy is now three but still puts hands/toys in his mouth frequently enough to cause worry, so we carry baby wipes in the car and use constantly. Hand sanitizer (in my opinion based on similar peanut protein studies) doesn't kill the gluten protein. If he attends daycare or preschool I'd check there for sensory tables full of oats, play doh, art supplies, etc. If you feel comfortable that there's not cross contamination, I'd say he just needs more time to keep healing. We had our little man's celiac panel ran again after three months and then another six months gluten free. His ttg levels drastically improved each time. Good luck!! I hope he feels better soon; it's misery watching your kiddo feel sick!
  36. 1 point
    If you're anything like me you're probably stressing yourself out hyper analysing your current condition. Take a step back and try to relax. Accept that recovery won't be a straightforward upward curve, but that even when gluten free there will be good days and less good days. Drink plenty of water, that will help reduce snack urges. Also try and eat foods that have a low GI index: https://www.bbcgoodfood.com/howto/guide/spotlight-low-gi Usually when you're well hydrated and eating foods that dont spike blood sugar food cravings will dissipate, although you may need the salt, that could be your body telling you. But most of all...
  37. 1 point
    Ttg 6 is the antibody involved with the brain. There have been studies on ALS symptoms being related to gluten. There is also a correlation between celiac and MS, but it is just that, a correlation. God, I read somewhere about a guy on a plane who had Celiac neurological symptoms and happened to be sitting near a physician who told him a minimum of a couple of months before they saw Improvement. if i find it, I will posit it.
  38. 1 point
    Mermaid's Mom, You are NOT a pariah. If any one is on this board is. Let me be the Pariah. You are overwhelmed and rightly so. We have the benefit of having had this disease for many years and all the information (can feel like judgement) I think to a new comer but I know every on this board would help you if they could. That said I have pre-typed some of my next thought so as to organize them but I forewarn they will be long because I am trying to educate and have a lot of information to cover so here goes nothing. I wrote this earlier today. I will let you know when I go back to citing other things as I type my response. I genuinely hope this is helpful. Mermaids Mom, As I was reading your thread about whether it is Non Celiac Gluten Sensitivity or Celiac disease I couldn’t but be helped be moved. I wrote this piece of prose (as I sometimes do when I am inspired) We Can’t See the Forest or the Trees If tree’s (symptoms) are diseases in the forest of health we can spend so much time in identifying our tree/disease we forget we are in a forest. There is abundant life in the forest. The forest is healthy the trees are only symptoms. When we see the tree’s we so no way out. When we see are in a forest – we get healthy and find our way out. Or else we go around in circles. What if each tree was different nutrient in this forest of health/nutrition – a sign of which way to turn. If/but they (nutrients) all function together to provide shade and recovery (fruit) from each individual tree – for high quality health. When we step back from inspecting each tree we see how the forest functions. It is then we find our way out. Step back and consider that nutrition is the key to a healthy forest/life and your life will flourish when each tree takes its rightful place in the forest. Some in the understory (trace minerals) some in the canopy (cornerstone nutrients (Magnesium) like the large oaks. Together they make up the forest of life. Life is a web of life. Where do we fit in that web sometimes is hard to know. But health is alimentary (of or pertaining to the Gut/GI) axis. When your 2nd brain –your GI system is not healthy your first brain will never function properly. Your tree (disease) is never properly identified because they don’t see the forest for the trees. And each tree looks the same – because when you are lost – they all look the same! Pellagra looks the same as Celiac disease and one is confused for the other in the Majority of CASES! This article/link on Celiac.com talks about why this is. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html May God bless your journey it is not a long way – if you know the way. To quote Robert Frost in his poem “TheRoad not Taken” I shall be telling this with a sigh Somewhere ages and ages hence: Two roads diverged in a wood, and I— I took the one less traveled by, And that has made all the difference. I encourage you to walk down the Pellagra path to see if it leads you to a healthy end. It could make all the difference. I know it did for me. Read this article on the Hindawi that attributes many of the effects of aging on/to undiagnosed or sub-clinical Pellagra. https://www.hindawi.com/journals/cggr/2012/302875/ What a novel concept. That poor nutrition can present their selves as disease in old age (or any age really) see below about babies can inherit vitamin deficiencies from their own mothers. And it not only old age where/when Pellagra can show up either. They say even when quoting “Foetal implants develop PD pathology, illustrating the point that the niche microenvironment is the key [357–363]. Stem cell implants in PD and other conditions survive and connect but form strange lesions and connections suggesting that lack of stem cells is not the real deficit.” PD is short for Parkinson Disease Amazing science information if you ask me that is completely ignored as far as I can tell that Pellagra (a Niacin deficiency) in even children can and does affects’ babies mental conditions. How do we know this is true? We don’t know unless we test or take the Vitamin. Even more amazing to me science confirms this in new research about Eczema in babies linking low B-Vitamin levels in the mother to Eczema in babies. See this link http://www.nutraingredients.com/Research/Mother-s-vitamin-B-levels-affect-eczema-risk-study-finds Read and reread the Hindawi article you will not find a better source on the “Lesson’s from Pellagra” that we still need to relearn today. Please read my blog on celiac.com where I discuss how this what I call a “Silent Epidemic” is often confused for Celiac disease today linked here for your convenience or visit the website in my profile if any of these interest you enough to research it (Pellagra) in greater detail than the links I have provided. https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ where I note “common symptoms of Pellagra in Celiac’s occur 58% of the time” as reported in the International Journal of Celiac disease. Link provided here http://pubs.sciepub.com/ijcd/3/1/6/ The gluten free works blog post about this topic of a Vitamin B3 deficiency in Celiac’s linked below is a also a good summary of this topic. https://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/ I hope this is helpful. 2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things. Posterboy by the Grace of God, Mermaid's mom it is me again. I do think karerng is right that if you go very soon her antibodies will still be elevated (not biopsy) but a blood test. The biggest drop in antibodies are usually in the first 6 weeks gluten free. Here is article that recently talked about this issue. https://www.celiac.com/articles/24693/1/Full-Gut-Recovery-from-Celiac-Disease-Can-Take-Up-to-Two-Years/Page1.html While full recovery can take a full two years most celiac's bowels get better after 6 months. People have borderline tests for a celiac diagnosis all the time in the absence of a biopsy. By borderline I mean not definitive to the doctor's conclusion but as jmg said could never "pass" for a biopsy. And why the doctor said probably he would treat you the same either way is depressing for people searching for "definitve hill" to die on. Sometimes it is not always black and why. There is more grey in test's than we would like to admit sometimes. I wrote a thread post about why I think this is. see this link to the post I think it is unfortunate for us that biopsy are still required for "defintive" celiac diagnosis instead of getting the considered less diagnosis of NCGS as jmg pointed out is not lesser in suffering. The suffering is real. We all get that. Dr. Rodney Ford wrote a great post about this topic about why he prefers blood serology to the exclusion of a "biopsy" proven diagnosis. See his article here at this link http://drrodneyford.com/extra/documents/236-no-gold-standard.html he concludes his article on the topic saying he sees an Ending of endoscopy "In the next few years, blood tests (particularly the DGP tests) will take over the endoscopy and we will see the end of the endoscopy to diagnose celiac disease." I find that many procedures are done out of necessity to eliminate other diseases as karerg alluded too. AS to whether your daughter is old enough to test positive for Celiac disease is another tricky question because often tests in children test negative once or twice ie. have NCGS before before later finding out later in life that they now have "full blown" celiac instead sadly. Dr. Rodney Ford has a great thread on this topic as well. I think it would help you to read it. http://drrodneyford.com/extra/documents/239-how-early-can-you-diagnose-celiac-disease.html Dr. Ford believes in early intervention and believes a postive blood test in the absensce of a "biopsy" proved diagnosis is acceptable in children and he recommends this to his patients. He does not consider it be a false negative. I like to thank of this way. Positive is positive. Either by the blood or biopsy. Positive is positive but be sure to get your daughter's blood test soon or the antibodies will be too low for even a false positive (as the doctor's might term it or is it a false negative) but the key here it is positive and that is enough for Dr. Ford. Dr. Hyman covered this well on the HuffPost and his own website over 5+ years ago and still many doctor's don't understand this fact that positive is positive. http://drhyman.com/blog/2011/03/17/gluten-what-you-dont-know-might-kill-you/ Quoting "Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease." I am one of the fortunate ones who had a doctor who realized my blood test was not a false positive and on follow up of my blood antibodies 6 weeks later the subsequent drop in my "off the chart" antibodies dropping to a normal level was more than enough proof for my doctor. An obvious cause and affect. And why you are there having check your daughter B-Complex levels to see if she is also low in Niacin with could also explain many of her symptom's (see above) it is just not diagnosed much today because doctor's don't know to look for it anymore these days. I hope this is helpful. You are are right on target with the Magnesium as a Glycinate or Citrate. Take some for yourself too! You can't make energy with out it. 3/day i.e with each meal if possible will work wonders for your and her energy levels. 2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things. Posterboy by the Grace of God,
  39. 1 point
    Brain fog is real for those with celiac disease or even Non-celiac Gluten Intolerance. He may also have another condition which can impact his learning. If negative for celiac disease, consider getting him evaluated by the school psychologist. The school should (and is required by law) to help develop a plan for him. In the US, celiacs can file a 504 plan (American Disabilities Act). Learn more here: https://celiac.org/celiac-disease/resources/government-benefits/school-education-benefits/ If the celiac tests are negative, make sure the complete celiac panel is given to completely rule out celiac disease. Not all celiacs (like me) test positive to the standard screening TTG test. Remember, celiac disease can develop at any time. I test my kid every few years, even if symptom free. Keep researching celiac disease. Being well informed is a great defense! Take care and ask as many questions as you like. We are here to help.
  40. 1 point
    Thank you for the Input!
  41. 1 point
    That's good - the part about going to a doctor or two. It's a shame they didn't test for Celiac before advising you to take him off gluten. You wouldn't believe the number of people I see in my " real" life that take kids off gluten as a magical cure and never consult an actual MD for very real problems.
  42. 1 point
    Spellfixer gets me all the time on celiac com CL. So I figured you meant "be eating", not "beaming". Beaming into space is what we should do to the gluten!
  43. 1 point
    This is actually an advertisement. In the US, supplements, like this, do not have to go through any federal approval process. They do not actually have to "prove" that they work. "Real" drugs must prove they are safe and that they do what they claim. Currently, there are medications going through clinical trials - working their way to being approved. When they are ready for the public, I am sure we will report actual articles about it. Reliable sites like The University of Chicago Celiac Center and the various Celiac Associations will write about it. It may be by perscrition only. The one I heard the researcher speak about will have very specific instructions for how to use it.
  44. 1 point
    Hi Bonnie, This isn't a product that allows a celiac to eat gluten. I think you can find the same enzyme in any DPP-4 product, which are available at vitamin retailers. The only use for these enzymes with celiac, is to maybe help a little with symptoms after accidental glutening or cross contamination. Even then, they won't stop an immune reaction, but might lessen the reaction a little.
  45. 1 point
    My post was not directed at you personally but an expression of my own frustration in the way that many medical professionals look for and at the diagnosis of celiac. Your posting research info is very much appretiated. I was misdiagnosed for many long and painful years and am thankful that the diagnosis process is becoming better. It does still have a long way to go though and many doctors are still very far behind in their knowledge. I do hope you get a resolution to the problems you are having and clear answers. I know all too well that frustration with being very ill and doctors not being able to tell you what is causing it.
  46. 1 point
    We ran a major upgrade yesterday, and another patch to that upgrade today. Please report any issues here.
  47. 1 point
    Hi, It looks like they gave you only the typical screening test ttg IgA. That ttg-IgA test catches a lot of people with celiac but not all. You could ask them to the full celiac panel. The full celiac panel includes DGP IgA and DGP IgG, plus anti endomesial IgA and total serum IgA. You've had the total serum IgA and it is good, so your body does make IgA antibodies. There are members on the forum who were negative on all the anitbodies tests but did show positive on just one. So we aren't all the same even though doctors like to assume we are. You have to stay on gluten for the testing to work. It may help to search for a local celiac group and check their ideas of a good doctor for celiac. Welcome to the forum!
  48. 1 point
    Bravo for being strong enough to bring this topic up. Depression, anxiety, and other mental or neurological issues are common in celiacs and those with NCGI. Science is finally catching up to what many of us have already known to be true. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/ I have suffered from anxiety and still have some neuropathies. At first I blamed menopause (that alone can make you crazy), but my symptoms tend kick in after a Gluten exposure and improve as I heal. You are not crazy! Gluten can cause so many problems. What other disease requires that the patient be in charge of "medicating" and caring for themselves? Most of us after a diagnosis get a "Well, just avoid gluten. Lucky you that there are so many restaurants that offer a gluten free menu!", speech from our doctors. We never get time off from thinking about food, our next meal and will it be safe? Our relationship with food changes dramatically and it can be exhausting. We do need more resources and support from medical, but for now, at least this forum is helpful!
  49. 1 point
    I am an American living in Kaohsiung, Taiwan. I was recently diagnosed with Celiac while visiting family in the USA. My Chinese is only average, and reading food labels is a bit beyond my language abilities. Does anyone else have experience managing a gluten free diet while living in Asia?
  50. 1 point
    Hi Lub2bmom! There are crazy things out there---and sometimes, sadly some crazy things posted right on here -- which is why we are so diligent about making sure information is accurate. Hon, I am impartial here --just scrolling around and reading the board---and I have to say that I do not see where there is anything in this sentence--(especially since she uses the word "kindly") that is an "attack" of any kind. That is a really strong word to use and not applicable in this case. There's nothing wrong with asking someone for a citation for information. She asked politely. You provided it. So, it's all good. It seems as if more often than not lately, any time someone asks for a citation or a source on the forum, it is perceived by some members as an "attack". It's not an attack to ask for a source of information and nothing is implied about your character just because she asked for where you read it. Hopefully, you have received the answer you were looking for in the links Skylark has provided? Best wishes to you, IH And honestly, I am TERRIFIED of even trying anything at Mickey Ds....CC bites me on the butt every time I try anything new and so, I am too scared.
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