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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store.

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  1. Dear all, For some time now I have been experiencing a range of strange symptoms like fatigue, brain fog, tingling / numb sensations in hands / mouth / head / chest, irritability and digestive issues (no pain though) etc. In addition my skin is red and irritated and quite covered in acne. I have had these symptoms for quite some time now, but only recently they started to heavily flare up about 20 minutes after eating (skin gets red / symptoms get worse, making me feel very weird / drunk). It feels as if the food I'm eating is toxic and my body has to fight like hell to process all of it. I've tried managing it for a long time now, thinking it would pass, but at this point it's severely effecting my daily life. As such I'm more dedicated than ever to find an answer. Because of the symptoms and especially because they flare up after eating I suspect celiac disease / gluten intolerance. The strange thing is though: everything I eat seems to trigger a response; even just a banana (although the intensity varies with food group / amount of food). Now my question is: can celiac disease / gluten intolerance also trigger a response when eating non-glutinous foods? Perhaps because of the effect it has on the digestive system. And does anyone have an idea how common this is? Any thought is greatly appreciated.
  2. I had surgery two weeks ago for my parathyroid and elevated levels of calcium in blood tests. Surgery went very well except within 24 hours I developed a strong allergic reaction at the incision site. The area got very red , swollen and began to weep quite a bit. Sleep became impossible,went to the doctor and he removed the glue that is commonly used to cover the incision and stitches. Started on, anti-biotics and a steroid. I contacted the mfg of the glue and asked about possible gluten in the product. I was told no gluten. It is a blend of formaldehyde and a polymer, its common name is Durabond. Still have residual itching and redness but much better. Would hope no one else needs to go through that less than wonderful expierence, Has anyone else had that situation ever develope? thanks, pasqualeb
  3. I am 22 years old and was just officially diagnosed with celiac a week ago.  However, I had blood work done a month ago and my doctor thought that I had celiac based on those results.  I have been slowly changing my diet out since then, but was not allowed to completely change it until after my endoscopy and biopsy 11 days ago.  Since then, I have been 100% gluten free (other than accidentally eating salad dressing that contained gluten).  I have been feeling great since I completely changed my diet.  Until today, that is.  I have been having symptoms all day that were similar to my gluten-induced symptoms, including stomach cramping, loose stools, and having to use the bathroom multiple times throughout the day.  Another thing that I did not really experience before was bright red, what I assume to be blood, in my stools.  The trouble is, I haven't ingested any gluten.  I checked and then double checked all of the food labels from foods I've consumed over the past three days, and I haven't found anything that contains wheat.  I suppose there is the possibility that there could be some cross-contamination, but I'm not sure what it would be from.  My symptoms are pretty bad, and I don't really think trace amounts of gluten would cause this bad of a reaction.  I understand it could be something else, such as an oncoming illness, stress, or god forbid, yet another condition.  But I was just wondering if anyone else experienced anything similar shortly after changing their diet.  If these symptoms persist for more than two days or so, I of course will go to the doctor.  Thanks for any input!
  4. Hello,   I need to see a doctor who specializes in Celiac post-diagnosis care. Someone who knows what to test for in terms of deficiencies and other food allergies. Gastroenterologists tend to be more focused on diagnosing Celiac and then prescribing a gluten free diet as the after diagnosis treatment, which isn't enough in my case. My doctor isn't comfortable following up on my chipped teeth and broken bone, muscles strains, etc., as signs of deficiencies. It would be nice if I could see an MD who specializes in Celiac. Does anyone in Colorado, particularly in the Boulder-Denver area, know of a doctor who is familiar with the complexities that can arise post diagnosis on a gluten free diet?   Thank you everyone.
  5. People sometimes say: you used to eat gluten and you were fine before. How did you suddenly develop gluten intolerance?   The answer lies in the story of how my baby's food allergies saved me:   I had experienced bloating, and intestinal pain for years, but it all became more severe in 2013, post partum. For the previous decade or so, I had consulted GP doctors about vague intestinal abdominal issues and episodes of low iron, B-12 and folic acid deficiency. Because I complained of "something going on" in my abdomen, the doc ordered an ultrasound of my ovaries and found nothing.   On other occasions, I was told I might have irritable bowel and that it can bother some people more than others. As for the low iron, I was told it is common (I'm sure that's true!), so not to worry.   After I had my second child by c-section, I had worsening symptoms and daily intestinal inflammation, visible contractions, swelling, bubbles moving through and visibly rising up through my abdomen. You could see the tunnel lift! I thought the surgeon had put my intestines in too high after my c-section, it was so bad. I started getting more frequent migraines with auras and hypoglycemic days. I started to look grey skinned. I had an itch all the time and canker sores. My post partum weight dropped quickly and then I was lighter than my athletic "race weight" whilst eating piles of food. People asked "How I lost my baby fat so fast".   My stools started turning into black, sticky, pasty cow patties that I could not flush. I had to wipe them down. They stank. My belly kept blowing up like a balloon after supper, like there was a great fermentation kit inside me. I was tired. I was sick. I had infections. I started bruising easily. I had flu like symptoms and deep fatigue all the time. I am an athlete, so I was exercising and was fit, but I felt totally unhealthy. There is a difference, and I could feel it.   Then I started walking into doors and loosing my balance. I couldn't think clearly and close my mental circuit. I put my keys in my daughters loot bag. I pressed the brake pedal and wondered why my car wouldn't go. I felt like I was suddenly getting Alzheimer's.   My swim coach told me I looked awful. I knew he was right. I was in the midst of planning to go to my doctor, but I was busy with my baby and five year old. I was also dealing with my baby's food allergies: protein enteropathy / IgG allergies and FPIES .... see . And, ironically, this is what saved me. Because my 5 month old was reacting to my breastmilk and he had enteropathy and allergies to all cereals and formulas, as well as Food Protein Induced Enterocolitis Syndrome to rice, I changed my diet. I took out  all gluten from my diet so my nursing baby would no longer be in pain. Bingo. We both got better. My abdomen stopped rising and giving me pain. My stools gradually improved over a few weeks until they were normal again. The other "weird" symptoms I had been having, lifted. Even the edema in my legs dropped, and I hadn't even known that was not normal.   I learned that pregnancy can be the environmental trigger for the onset of active or "more" active celiac disease. I went to my doctor and did the blood tests. Unfortunately, by this time, I was gluten free for a couple of months and they came back normal. Since this time, I have felt frustrated by the lack of diagnosis. I feel I lack the leverage for my children to be assessed for celiac and for me to be screened for other things. And it is hard to navigate the world without being seen as following a gluten free fad.   But I'm sure I have it. Looking back some years... I did not menstruate until I was 16, and the enamel on two of my teeth never formed. I was always told it was from tetracycline. Now I'm not so sure. Since my twenties, I've been asked by dentists if I'm a smoker due to my yellowing teeth. Despite my healthy lifestyle, my enamel has always been poor, and stained dreadfully. Not to mention the veneers hiding my unformed teeth.   And then I've had the on off cycles of intestinal flare ups and pain for 15 years or so. And the vitamin deficiencies. Now, when I am glutened, after nearly a year gluten free, I get migraines, diarrhea, itches, canker sores, and fatigue and aches.   I think I've just about convinced myself I have celiac disease.   The question becomes, how do I proceed for my children and potentially my own diagnoses. My baby, now 16 months is still gluten free, but he has numerous food issues, and I have no idea how, and when I will assess him properly. My daugher shows subtle signs... they could mean nothing, but I fear they may be the first clues and I'm not sure when to tackle it. I don't want to loose that precious chance to get her tested at the wrong time, in case it comes back as a false negative and I loose that leverage for later.   My daughter: Daughter with alternating constipation with pale, sometimes white, cream or mottled, floating bits, bulky stools, steatorrhea Frequent bloating Abdominal pain around intestines, rather than stomach Itchy skin Irritability greater with gluten Teeth: decalcification and grooves and concave shape, possible sinds, dentist noted shape Frequent pins and needles FPIES to oats at 6 months. Outgrew by 3 or 4.   Thanks to any and all who ploughed through my story. I welcome your thoughts.
  6. Hello, this is my first post, this is basically my story, i have been having chronic diarhea, fatigue, and just plain depression for about 5 months. I know i wasnt getting better by any means, so, my first visit to the doctor which was a bout a month into my illness, he told me it was a virus that was tearing away at my stomach lining, so i was like okay what do we do about it, he replied with chicken broth and bread, no fibre, basically plain food, so i went on that for a week and if anything my symtoms got worse, i also went to emergency a couple of times for pain in my abdomen and the doctor their ordered a stool sample, when i got the results back everything came back normal. I was so frustrated, then my doctor then said i could have some coloneitits (or however you spell it) and need to go to a gastrointerologist, so me and my mother booked an appointment and waited, while my symptoms got worse we returned to the doctor only to find out that my regular doctor has returned from his trip, i was so frustrated with the doctors i didnt care, when i went into see my doctor he felt my intestines and ordered a bunch of tests. He seemed disgusted by the amount of tests that werent there already. When my tests returned he said everything is normal but i have bacteria in my urine, (i am a boy, and no its not an STI lol), so i was sorta relieved by this news and also frustrated that i didnt get diagnosed 3 months earlier, (my urine was noticabely different but i didnt really say anything to anyone), so i was put on these antibiotics and on my way, while the antibiotics only gave me nausea, and nothing else, also my urine seemed unchanged i returned to the hospital saying how my urine is unchanged, he then went over my blood work and said i have celiacs disease. I was blown away at the fact that he couldnt tell me this the first trip, but was also madly relieved that i finally have a diagnoses. So going into the present day, where i have been gluten free for about a week and a half..... i honestly feel no difference.... im constantly depressed, my diarhea seems to not go away, and the general discomfort in my abdomen doesnt seem to change.... I am a grade 11 student, who has had to miss so much because of this illness, and seems to not be gettign better, i couldnt play football, my favourite sport because of it, and i just wanna get back to my normal, funny, awesome life i have... i honestly just want answers, i am hoping to get a biopsy done to confirm celiacs, or find anything else going on down there, another note, my throat has become to hurt to swallow, my brain is cloudy all the time, and i still feel depressed, i came on here to beg for some hope, that will get me out of my slump, just someone please give me answers as to why i am not getting any better at all......
  7. I have celiac an hashimoto's disease. Need to find a doctor who will help with my thyroid. Cannot take regular thyroid meds due to lactose in them and can't find a doctor who will listen. This is my first post and I need help. I feel like my life is over. I have been sick for 4 yrs and have been to every specialist and physician in the area. Everyone says I am crazy. I finally was diagnosed with celiac and hashimotos but I can not take the medicine. I am EXTREMELY sensitive to ALL medicines and must take small dosages but every doctor says that I am over reacting. I know my body. I am so frustrated. I lay in bed with no energy, constant mental cloudiness, body aches, and if I take the thyroid meds my heart rate accelerates, have severe mood swings, tingling all over and hot, and it hurts my stomach. I CANNOT have dairy but no one will send my script to a compounding pharmacy. Please help
  8. Hello all, This is a long one, so please be patient or skip to the bottom for the TL;DR version. So, a little background before I get into my weird post-gluten-free symptoms. I'm 23, male, and a student at the University of Oregon. This last summer I was given a presumptive diagnosis of celiac disease based on blood work (120/30 ELISA units on an anti-tTg IgA blood test). Because I wasn't going to be able to get in to see a specialist for a biopsy for six months due to insurance issues, I went gluten-free at the recommendation of my primary physician. My symptoms did start to recede, ever so slowly... but of course, by the time I was starting to notice a real difference, I got a consultation with a GI specialist, who told me to resume a normal, non-gluten-free diet for two months so as to not throw off the biopsy results. I started eating gluten again for those two months, got an endoscopy/colonoscopy/small biopsy, and - surprise surprise with 4x the "normal" amount of ELISA units - was positively diagnosed with celiac disease. I'm now gluten-free again. It's been two weeks, and I'm just now starting to get over the worst of the gluten withdrawals. With the exception of an incident of very mild cross-contamination at the end of last week, I've been doing alright in my recovery process... with a few weird exceptions. First, my BMs. Surprisingly, while I was back on my gluten-y diet in the leadup to the biopsy, I was pretty regular, and everything was as it was supposed to be. No floating, no malodor, no excess mucous, no partially digested food, etc. However, in the past two weeks since going back onto the gluten-free diet, all of the traditional symptoms of celiac in that department have cropped up. I've become irregular in my BMs, the consistency is off, it's definitely malodorous, digestion isn't working properly, and there's far too much mucous. Huh? Isn't the opposite supposed to be happening? Interestingly, the first time I went gluten-free I also had an abundance of mucous, but none of the other symptoms. Second, allergic reactions. One of the recurring symptoms I had pre-diagnosis was constant itchy, runny, red eyes, even when it wasn't allergy season. In fact, this is so consistent that when I was gluten-free the first time, I used this reaction to tell when I had been glutened. So when I got that cross-contamination last week, my eyes got all itchy, as usual. But then, yesterday... they got itchy again. And I'm 100% certain I didn't get glutened yesterday, since I was at work all day in a food-free environment, and the only things that went into my mouth were very carefully vetted and screened by me beforehand (and were all things that couldn't have been exposed to gluten). Again... huh? TL;DR version: Going gluten-free again appears to have actively made my intestinal issues and allergic reactions worse.
  9. These make me feel good, nourish me, or just fill my body safely. salmon fennel bulb almonds eggs pork cucumber
  10. Post card / Christmas card exchange A thread to discuss same. Fairly simple really, we exchange addresses and send each other a post card or Christmas card. Either is fine. They can be anything you desire to send, something from the Hallmark aisle or printed on your computer or handmade or delivered by angels with curly wings. If you do want to make your card I suggest keeping them fairly small so the postage is not excessive. Each person will send me their mailing address via PM on and I will send the complete list to all participants Then we will each send a card to each participant. So far there are 4 signed up so that makes, wait for it, wait, almost. Yes, 4 cards to send out! But they can all 4 be the same card, they don't have to be individual designs. The main goal is to keep the US postal service in bussiness as they have been hemoraging a few billion dollars each year lately. OK, not the main goal really. Really it is just for fun. We are getting started a little late on this but hopefully it will work out that people will get a card before Christmas. If you are ambitious and want to try making your own cards there are lots of options for that. Here is a short tutorial on foam plate prints that might be fun to try. http://www.artforsma...ray-prints.html You can buy pre-made blank cards at many art and craft stores. They are usually just watercolor paper cut and folded to fit an envelope. So far we have these people signed up: GFinDC Mushroom KarenG Jerseyangel Please don't post your address or contact info in this thread! We need a cutoff to keep it from getting too expensive postage wise, so lets say no more than 10 total participants. OK, any questions are welcome. Thanks for signing up and I hope you enjoy the card exchange project!
  11. Hey everyone, I have a question that I have been wanting to ask other people with this disease. After you stopped eating gluten, what kind of changes did you experience in your body. Apart from the obvious improvement of the gut in general. Personally I have lost quite a bit of weight in fat for my size, even though I eat more than I used to, and I am pretty skinny to start with. However, when I go to the gym, the results come much faster than before, and i My average heart rate has dropped quite substantially. My skin, especially in my face is much clearer and I don't get zits and things like that at all anymore. But best of all, the stomach cramps and diarrhea are gone! There are tons of other things that have changed, but these are just a few. What have you experienced personally? Since symptoms and recovery seems to be very individual, it would be fun to compare.