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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. Five months ago I developed symptoms. I felt a tired, low energy, and in the head not feeling all there. A slight sore throat coming on, the feeling you get when you're *about* to get sick. Problem was, I never really got sick (no cough, no runny nose, no fever) and this "almost sickly / tired / foggy feeling continued." For days. Weeks. Months. I went to the doctor. Tests came back normal for things like thyroid checks, vitamin B12, mono, Epstein-Barr, etc. The only thing was my Vitamin D that was insufficient at 23 (30 is normal). I took Vitamin D pills and now my level is 36. The symptoms continue. Some are less and others are more, but the overall feeling is definitely still there. Over the weeks of taking the pills, I'd feel better for a few days, then worse for a few days. Rinse, repeat. The primary symptom during this whole time is what I call brain fog. I see the term thrown around and I don't know if it's the same as what other people say it is but generally I use brain fog because it feels like my experience is clouded in my head. Like having a layer of cloud in your brain fogging things up. Physically it feels almost like a headache, but not quite. It feels almost like being dizzy, but not quite. It feels like tiredness and extreme exhaustion, but that has lessened in recent months and it feels more like a headache. Sleep doesn't change it. There are no noticeable patterns. Even when it's not severe, I feel like it's "always there," my head never feels fully clear. Seems to come in waves. I might go 3-5 days without a severe episode, then it is severe for 3-5 days. Or it might show up in the middle of a day and continue for the rest of that day. Some symptoms came and went: most notably temperature extremes: night sweats, or feeling very cold and shivering. These were quick episodes and stopped after the first month. They happened maybe less than 5 or 8 times. Maybe it's unrelated. The sore throat died down in recent weeks. But I do consistently get cold extremities, which I never used to get. And dry lips, which I also rarely got and only in the winter. And new symptoms appeared in the first month: weakness / feeling of internal 'wobbliness' in my muscles, particularly in my thighs. Not 24/7 but sometimes, kind of like the cycles from before. It wasn't involuntary movement. But I definitely could feel weakness / wobbliness. This has died down in recent weeks. One night I felt tingling on my hands, but that symptom never returned.  MRI results are normal. With the exception of something my neurologist described as something about the white matter that is part of normal aging (I'm in my mid-30s), but can appear in people with migraine headaches. I think I will talk with him again to discuss this further because I do not really understand it, but he assured me the MRI was normal. I felt the 'brain fog' prior to and while getting the MRI (symptoms at medium severity). So here I am today, feeling about the same with brain fog / headaches and pretty much always feeling like something's a bit off, like feeling cloudy. I can still do things, exercise, run, go out with friends. But the brain fog / headaches sometimes really kick in sometimes, it seems like in phases. Then I read about gluten sensitivity. I see symptoms like 'brain fog' and headaches and wonder if it might be related. I do think at times after eating heavy meals the fogginess / extreme tiredness came on. But there are days where I eat gluten in cereal and I don't notice an increase in symptoms. Like I said before it comes in waves. 3 days at a time or half a day or 2 days. It's not like after every meal 30 minutes later I feel it then it goes away. But perhaps it's related to *how much* gluten I eat.. My doctor said he does not think it is a gluten issue, but that I can try going gluten free for a few weeks to see if symptoms improve. I'm currently tracking my symptoms and food intake to see if there's a pattern. So I'm just wondering if anyone else here experiences these symptoms and if you think it might be a gluten issue. Thank you for reading.  
  2. I am 80+, have a brother with celiac and was well until an acute autoimmune illness at Xmas 2009 possibly following flu. After extensive rather inconclusive hospital tests this seemed to be resolving on multivitamins and minerals only, apart from persistent anaemia. Tests for celiac were carried out at my request at the end of 2012: antibodies +, biopsy + (Marsh 2). Strict gluten-free diet from Jan 1st 2013.  From 2010 to present I have had 15 episodes of temporary loss of central night vision usually lasting a few days and looking like a dark C or its lower part, about 20º wide and different in the two eyes. I thought it must be due to vitamin A deficiency but it did not respond quickly to extra vitamin A and one blood test showed a normal level. On April 26th 2013 after a fish buffet night vision recovered completely but failed again slightly next day. In the latest episode lasting 9 days it improved after eggs on 2 successive days and resolved completely after one 1000mg cod liver oil capsule. This suggests that it might be due to malabsorption of omega 3 fatty acids, possibly DHA. Has anybody else out there had similar symptoms and are they indeed a useful indication of persistent malabsorption despite the gluten-free diet?    
  3. I was just recently diagnosed with Celiac.  I have low iron and vitamin D because of the Celiac.  It is my understanding that even though I've been on the vitamins for awhile now that until my small intestine heals, I won't have normal levels.  I have extreme fatigue which they have chalked up to the vitamin definciencies.  Does anyone know of anything that can help until my intestine heals through my gluten free diet.  I have four kids and I am a teacher.  I have no time for no energy!!!
  4. Hi, I'm new and looking for other's experience and advice. I recently went to the dr., due to having extreme fatigue for several months. Much to my surprise, my blood count/ hemoglobin was extremely low, so much that I needed 2 blood transfusions . I was shocked! Have always been slightly anemic, but nothing like that.  Found out later, my iron and vitamin D were also low.    Got a referral to see a GI dr. and went there this week. He wants me to have an endoscopy, colonoscopy and Celiac blood test, which is  what brought me here! I had that done and am awaiting results.The endo  is scheduled for next week.    so I was extremely surprised about the celiac testing, it's something that really wouldn't have crossed my mind. Aside from the anemia, fatigue and vit. deficiency, I haven't noticed many other symptoms. I have had some heartburn lately and started taking acid reducers, also insomnia and headaches. But no GI symptoms really, unless I drink a few beers, then I feel extremely bloated with a stomach ache.   Anyone else have this type of experience prior to diagnosis? 
  5. Hi all,  I am new to this forum and am new to celiac as well been gluten free for a year now. In that time i have had a couple of glutenings (2 as a test and one accidental) and recently I realized after gradually feeling crappier and crappier for a month (as in all my muscles flared up, previous injury killing me, irritable, anxious, emotional/depressed) when I realized it was this big container of taco seasoning i bought at Sam's Club (Tone's taco seasoning IS NOT GLUTEN FREE). Totally my fault i didn't look at the label.   Anyways, after feeling pretty crappy and one bad hangover I was even sicker. Nauseous every day, felt hungover even though i wasn't, couldn't drink any alcohol (which is very unlike me) and still with the irritability and what not. Just not good and not myself. That continued for about a week and now i am mostly better but still experiencing muscle twitches, spasms, generally very uncomfortable and feel like i have to massage my arms, neck, shoulders constantly for relief.    I really screwed myself up here... slowly glutening myself at least once a week for 8 weeks. Has anyone done this before? Not just a one time incident but a repeated exposure? When will i stop feeling so WEIRD?! I am wondering now if this has really flared up the celiac and i am not absorbing my vitamins and that is perhaps whats causing me the muscle issues.   ANY thoughts, advice or questions welcome.   Thank you   lmj
  6. Hi Everyone,   I'm new to the forum. I've been gluten free since 10/26/2013 and am still struggling. I have confirmed celiac's disease from both blood work and biopsies taken during an endoscopy.   I didn't have much help in the beginning besides to just stop eating gluten. I did that immediately with no issues and I am not getting cross contamination. It is not in my house. I did replace all necessary kitchen items.. collanders, toaster, etc. Got new butter, jams, etc. I don't lick envelopes and it is not in my toothpaste, lipstick so on and so forth.   I'm struggling. Some symptoms have gotten worse. I am still ill in the bathroom every morning. I feel internal inflammation all the time. I'm waiting for appointments with rheumatology (later in March) and endocrinology (beginning of April) because of various symptoms. A neurologist is also working on ruling out MS.   I cut out dairy last month (not in the beginning/was told it was not necessary) and now I've pretty much cut out everything else (rice, potato, soy) because I'm desperate to feel better. I've been eating plain fruit, veggies, meat - no seasonings/sauce. Chicken broth. Coffee (yes, it is gluten free) once in the morning and green tea or chamomile. Because of my vitamin D level and ferritin level I am taking the following each day Calcium w vitamin D3 twice a day, a multi vitamin, iron, b-12. Also on 20mg of omeprazole every morning because of my esophagus. I also drink Kefir probiotic smoothie twice a day. (Could that maybe be making me worse?! Just a thought that came to me today)   Along with celiac's disease so far I've been diagnosed with Barrett's Esophagus and was told I have osteomalacia.   I could share the lifetime of issues (migraines, miscarriages, difficult menstrual cycles, etc, etc) that now seem eye opening but the above are the basics.   Should I really still be struggling so much? This has been so difficult. I wish a doctor could tell me that I'm going to be okay.   Thank you for any responses that come my way. Looking forward to getting to know you.   ~Julie   edited to add more: my Celiac diagnosis came after a very long year of many, many doctor appts. I lost 38lbs from Feb until diagnosis, I would fall for no reason, I have neuropathy, terrible periods, mood swings near period and ovulation, not sleeping well, night sweats, anemia, difficulty with things I was able to do before, completely beat all the time, skin issues (don't have DH), joint, muscle, vein issues... I started going to the doctor religiously in the fall of 2012 and by the beginning of Oct 2013 still did not have a diagnosis besides to reduce stress and take care of myself.
  7. Hello everyone, (Warning: Extremely Long Post!) I am brand new to the forum and quite the confusing case. My not feeling well all began in late 2009 with extreme brain fog, mild tummy issues, mainly stomach burning and fatigue. I began breaking out in strange rashes off and on and seemed to be having peculiar reactions to food. At first I was so confused and caught off guard because I suddenly became Lactose Intolerant. I couldn't consume dairy without getting stomach cramps, gas and having to run to the bathroom. I seen a GI Dr. and was tested for Celiac back then (around the end of 2009) but it was negative and I have no idea what tests were run, the numbers or reference ranges that came of that test. Dairy continued to make me sick every time I had it. I appeared to react to everything from Dairy to Doughnuts and for some reason all sweets were making me kind of sick, so I thought maybe it was a sugar problem. I went to an alternative doctor and he suggested I go on a Dairy Free and Gluten Free Diet. Which I did - and I felt a lot better but not 100%. I'll admit, at the time I really didn't know a whole lot about Gluten Free diets and I have no idea if I was totally Gluten Free or not, it was a long time ago and I was a newbie. I indulged in quite a bit of supposedly gluten-free processed foods and even still ate oatmeal until oatmeal seemed to also make me sick. Then I removed oatmeal from my diet and still haven't eaten that to this day, I am too worried about it making me sick again. After eating that way for probably 3-4 months I developed an intestinal blockage in February of 2010. The ER Dr. said my intestine twisted shut on itself. I was referred for a Colonoscopy in March of 2010, they did an Endoscopy and Colonoscopy at the same time but were not looking for signs of Celiac specifically. The results were that I have a hiatal hernia and everything else appeared normal. (no biopsies were taken, as they were not looking for Celiac) I fell off the gluten-free Diet but remained Dairy Free almost entirely. I would occasionally consume a bit of dairy to make sure it still made me sick, which it did. So I ate pretty much everything but Dairy till mid 2011 where I went on a very strict, almost Grain Free (it allowed brown rice) - Nut Free, Sugar Free, Still Dairy Free Diet. And I felt really well eating that way because before going on that diet, it seemed like everything made me sick. A bowl of oatmeal, a tuna sandwich, you name it. I had been diagnosed infertile with high likelihood of Endometriosis in 2011 - I had been trying to conceive for two years at that point, so my doctor told me I was infertile. Till 2012 (after 3 years of trying) when I became pregnant! I have no idea how I was able to conceive but I suspect it may have been the diet I was following that helped. And I ate that diet from Mid 2011 till August of 2012 where my 1st trimester pregnancy cravings got the best of me and I began eating pretty much anything. I didn't feel well after going off my diet but I assumed it was just pregnancy stuff. I also discovered that miraculously I was no longer lactose intolerant. Which pretty much brings us to now, I ate whatever I wanted during my pregnancy, had my healthy, perfect son 9 months ago and my health has been going even more down hill since then. I am suffering from Chronic Diarrhea, Nocturnal Diarrhea that wakes me from a dead sleep, not every night but increasing in frequency. I am going as much as 2-8 times a day, most days but not every day. My Lactose intolerance seems to be coming back as I can only occasionally tolerate dairy now. This has been going on for several months and I am losing weight. I am Vitamin D. Deficient again but I was diagnosed Vitamin D Deficient back in 2010 as well, so that is no shock. Brain fog, fatigue, intestinal cramping, tummy pain and most recently Burning sensations, tingling and painful pins and needles in my feet and hands. Cold hands and feet, except when they are hot and burning. Still getting rashes off and on. Which prompted a B12 test that shows a huge decrease from 4 years ago but still good serum levels, no B12 Deficiency. I am having weight loss, unintended of course, my Dr. thinks it is most likely due to the Diarrhea. I have lost over 11 pounds in about 2 months despite having a pretty big appetite and having dessert after every meal and not trying to lose weight. My Dr. ran an IgA test and a TTG-IgA test on January 10th 2014. IgA     188     (Normal is 80-340)  So that is normal. TTG-IgA     <1.2     (Normal is 0.0-3.9)  So that is normal too. I am kind of at a loss, I seriously thought maybe Celiac was the answer for me, since so much seemed to fit. The Nocturnal Diarrhea, the weight loss, even the fact that I was able to go back to eating dairy after the special diet, I thought maybe that was from my Villi Healing and that now I am Lactose Intolerant again because my Villi are getting damaged again.. Even how I was able to conceive after being on my special diet for almost a year but who knows, I'm confused now... any suggestions? There are quite a few Autoimmune Disorders in my family. I have a Sister with Lupus with Kidney Involvement, I have another Sister who has 2 AI's, she has Eosinophilic Esophagitis and Areata Alopecia. My Mother is also sick but hasn't gotten a diagnosis yet and I have a cousin with MS. I am sorry for the long post, thanks for taking the time to read this and any suggestions or comments would be greatly appreciated. Thanks so much! ~ Thursday
  8. This is my first post and I'm wondering if anyone can help me out.   I had blood work done and was put on Vitamin D 50,000 IU for two months then off one month. After another round of testing, my results were as follows:   Total - 22 D3 - 6 D2 - 16   My current doctor now has me on 1,000 IU a day. Something in me just doesn't think this is enough. If the 50,000 IU only took the D3 up high enough to have me at 6 after two months on and one month off, is 1,000 IU a day really going to do anything? I've read quite a bit and think I should be on more. Just looking for other opinions though.   I was diagnosed via bloodwork and biopsy 13 months ago. I'm also lactose intolerant.   Thanks in advance
  9. Hi! I've been diagnosed for a long time and its well controlled. The last 3.5 years I've been pregnant and/or breastfeeding, 2 c-sections and my body is struggling a little. I'm having trouble with vitamin D levels, my new doctor (like my old doctor) just keep telling me to take 1000iu of vitamin D, but I already do plus good food, however my numbers are about 20 and I want them much higher, especially as my 10 month old still nurses regularly and isn't eating a huge amount yet. Anyone know more about what sort if levels I can take? Thank you!
  10. Hi! I have just joined this forum and it looks great! I have been diagnosed with Celiac for many years and been fairly gluten free since I was a kid. Last Sept I had baby 2 (mid 30s) and as I did with baby 1 struggled with knee pain post partum.  I saw my doctor and requested a vitamin D blood test and was low, I went on prescription vitamin Ds and it improved. I retested and was over the minimum amount(35), so she is not concerned (although I am breastfeeding and I have read it should be higher (50)).   I am now taking vitamin D and calcium supplements, eating a great diet and still have the following main symptoms: one knee needs cracking often (hurts if I don't), worse in morning. toes hurt a lot in the morning, I need to stretch them/move them for a couple of minutes before trying to walk. groins sometimes fill awkward, every now and then one side will slightly fail me and I nearly fall (not badly just need to readjust).   Does anyone know how quickly vitamin D levels can drop again, how often I should get tested? Anything else I should get tested for?  My doctor did say it is unlikely to be arthritis at my age, but there is no point testing at this stage anyway as I am breastfeeding and that would involve xrays and then nothing could be done anyway.  I used to live in Australia and bone density tests were done every second year on celiacs, my doctor said here it is not done, just calcium blood tests. I do know my bones were slightly fragile (at 30 they looked more like those over a 40 year old) however I haven't had any broken bones or other issues.   After writing this, my feeling is I need to find a doctor who knows more about Celiac also! Thank you!  
  11. Well...after almost two years of just reading the forums, I'm at my wit's end and, making my first post.   I'll try to keep this part brief:   April of 2011, husband's.celiac diagnosed. Our two daughters blood tested in June of 2011. Like a greek daughter positive, other daughter negative.  Daughter with positive blood test was 15 at the time.  She was tested by her general practioner, who advised that with father's diagnosis and numbers in her blood work off the charts,(not sure of number but I seem to remember hearing 134), endoscopy was a moot point. She made diagnosis, advised that she join her father on a gluten-free diet, and said she could refer a GI if we wanted. at the same time daughter is diagnosed with scoliosis.   So...August of 2011 daugter sees pediatric GI doc.  She would advise endoscopy, but agrees with GP that diagnosis is most probably correct.  Orders additional bloodwork, and  dexa scan (beause of scoliosis daignosis).   Test comes back with vitamin D deficiency, calcium deficciency and osteopenia.   I should probably throw in here that daughter started gluten-free diet the day she got the results of bloodwork in June. Also she and her dad had little if any symptoms before diagnosis.   She has next blood work January of 2012. TTg now 18, other numbers coming down Ped.GI says were doing good keep up the good work. Adds omeprazole for her reflux. Has her taking vitamin d and calcium.   May of 2012 both daughters end up with Mononucleosis. but amazingly recover pretty quickly.   August 2012, daughter has more bloodwork.  Vitamin D normal, TTg now up to 80! Says take multi vitamin, work harder on gluten-free diet, preventing CC etc.   Even though we were not a gluten-free household, in August our other daughter left for college, and now there is only VERY LIMITED food containing gluten in the house, and I handle it really carefully.  Have separate frying pans, toasters, etc.  I work really hard to keep my celiacs safe. January she has another round of bloodwork.  This time I'm sure we will see TTg numbers back in the 18 range.  Results come back...70!!.  Vitamin D at 17. Ped GI nurse calls with results and advises 50,000 i.u. of vitamin D for 8-12 weeks, then retest. Asks if I want to see dietician again. I declined.  Nurse calls back two days later and says they want her bloodwork and another dexa scan redone in April, and suggests thaT she may have ssecondary Auto-Immune disease or...Refractory Celiac Sprue.   Well that scares the heck out of me,and Ive been searchng ever since for any cases of teenagers with little symptoms of celiac having refractory celiac sprue, and can find nothing.   So finally I get to my question... Can a celiac be gluten free and the TTg numbers stay abnormlly high? My daughter has handled this diagnosis and her scoliosis with grace, and I'm really proud of how she's facing it as a teenager.  I just can't imagine how she will deal with an additional diagnosis.   Her general health is really quite good and the scoliosis hasn't changed.  It's hard to comprehend that she could be developing Hashi's or Diabetes or Refratory Celiac Sprue when she seems as healthy as her non-celiac sister. I'm soooo discouraged any ideas will be appreciated   So much for being brief       
  12. Does anyone know if Kat Von D Foiled Love Lipstick is gluten free? -Natural Seed Oil (Castor): Acts an emollient and moisturizer. -Hydrogenated Polydecene: Emollient and contributes to long-wearing effect. -Vitamins A, C, and E: Provide antioxidant and antiaging properties. Those are the ingredients...I do not know if Vitamin E would be made from wheat or soy, has anyone else had problems with this lipstick? Thank you!