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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. Hello, I have been reading a lot of posts while waiting for some of my test results to come back.  So thankful for the information I have found so far! I have completed my blood tests and other lab work.  Complete allergy tests came back positive for all in the bread/cereal profile.   One of the gene tests for Celiac came back positive and one other test came back high, even though I was not eating Gluten at the time of my lab work.  Back eating a small amount of gluten daily and have CT Scan and biopsy appointments scheduled for the near future.   I was wondering if anyone else is where I am as far as the testing.  I have had quite a few symptoms return quickly after going back to eating gluten.  The next day I had a migraine headache for the entire day, went to sleep and woke up with another headache that wasn't quite as bad.  Prior to my appointment,  I was only gluten free for 2 months and was really starting to feel great.  Three days into eating gluten stomach cramps returned.  Also on a Low FODMAP diet.  Unfortunately had to go back to eating it for the biopsy test.   Please reply if you are in the same spot as me as far as testing for Celiac.  Thanks, Sheila 
  2. My doctor gave me the clinical diagnosis two days ago that I have celiac disease.  She based this on my symptoms combined with a blood test for the genetic marker coming back positive.  I think the test that came back positive was the HLA-DQ8 test.   I asked her to order a biopsy which she has agreed to do.   She feels the biopsy is unnecessary because she is certain I have celiac disease based on the tests and my symptoms.   She also said I have Candidiasis and Leaky Gut Syndrome.   So, I am going to start a course of Nystatin.  Can you tell me if I should consider myself as indeed having the Celiac Disease?  Am I being weirdly insistent to want the biopsy done? Also, can I touch wheat- i.e.make a sandwich for my husband if I wash my hands after?  My doctor filled me with anxiety about having celiac disease saying I can't even use lotions or hair dyes unless they are gluten free.  She said that even foods that say gluten free are not always really gluten free. She said they had to say "celiac free" which is something I have yet to see on any label.  Please give me any information you think would help me as I navigate this new diagnosis.   Thank you.  ​
  3. hello- I'm looking for help here! For the past 15 months my now 5 yr old has suffered from severe abdominal pain, bloating and diarrhea . It has gotten so severe in the past few months he has been hospitalized 3x needing an NG tube and rectal  tube to decompress his intestines from all the air. At first we thought it was a constipation issue but he only ever had loose foul smelling his last hoapital  discharge I was instructed to insert a rectal tube every 6 hours and flush with saline to keep his bowels from distending with air! We did that for 3 months straight?! What torture for my poor boy. And X-rays confirmed there was no blockage. He has had test after test , X-rays, MRI,CT, EGD and biopsy twice , colonoscopy, ultrasounds and even cystic fibrosis testing. Only thing that has shown up in blood work is anemia and elevated c-r protein. His GI dr is stumped ( even after conferring with colleagues cannot figure this out) and says she has never seen a kid so severe, even with celiac( although he has tested negative) . Now here's the interesting thing- I. Put him on a gluten-free diet after the testing  was all done and within 2 weeks he started having somewhat formed BMs on his own with no laxatives or suppositories . His bloating disappeared and his behavior improved ( he is also mildly autistic) . So even though the dr was doubtful gluten could be a problem she is saying maybe it's an intolerance. Anyone have a kiddo with such a severe non- celiac intolerance?  
  4. Hi all   I was wondering if you could help me.  I believe my teenage daughter is Coeliac.  She has a skin condition which the doctor, try as he might cannot rule out that it is Dermatitis Herpeformas.  When I requested a blood test, one of the doctors was very dismissive and said it was a fungal infection despite me listing lots of other issues and also the fact that she had to go dairy and gluten free when she was younger for six months, she also had a blood test then which was negative.     He ordered a test very relucantly and it came back normal.  When I questioned the results with another doctor he was not particularly helpful.  I have since questioned him a number of times on the test but he just changed the subject.  I believe that my daughter has not been given the full set of tests and I was wondering if you could help me in confirming this, so that I am ready and prepared for when I take her back next week.   The test which was performed was "Anti-tissue transglutnase lev"  and her level was 4iu/mL   on the sheet it states "- Normal Negative 0-14; positive >14 If present this TTG assay detects both IgA and IgG antibodies.  A negative TTG result does not support a diagnosis of coeliac disease, provided diet includes gluten.  A negative TTG result suggest compliance with a gluten free diet in a known coeliac.   Is this test sufficient?  Do I need to request "a full coeliac panel"?   Now  my daughter is very tall and is going onto the overweight side, (although she doesn't overeat) she used to be underweight when younger and was sent to a dietician as she was on "failure to thrive" but after I cut gluten and cows milk out she put on weight.  Apparently she "doesn't fit the coeliac description"  but I have been researching and have found that people with DH do not necessarily have as many stomach complaints and she is suffering with really bad muscle cramps, tingling in hands and feet, headaches, has had spasms in her back for years, (she has had two MRI scans and nothing is wrong with it).  The final sympton is what I believe to be DH.     When her bloods were done they also ordered a FBC and because her levels are in normal range he says that he doesn't need to do any further tests.  She also has a vitiligo patch on her arm (which she has had most of  her life) and has just recently started to spread.  I have only just realised that this can be connected to Coeliac or thyroid issues.  My would issues with iron and thryroid show in a FBC or do I need for further testing of vitamin levels etc such as Vitamin D.  There was one number on her bloods which was slightly out but only a little which was her MCH which was 26.9 .  Her FBC was:   Haemoglobin estimation                       134 g/L           (115-160) Total White cell count                            7.2 10*9/L     (4.00-10.50) Platelet count                                        260 10*9/L     (145-400) Mean corpuscular volume (MCV)         80.8 fL            (78.0-100) Haematocrit                                          0.405              (0.36-0.46) Red blood cell (RBC)                            5.01 10*12/L    (4.10-5.10) !mean corpusc haemoglobin (MCH)    26.9 pg             (27.0-35.0) mean corpus. Hb. conc. (MCHC)        332 g/L              (310-360) Neutrophil count                                 4.64                    (1.80-7.70) Lymphocyte count                               1.84                 (1.30-5.50) monocyte count                                  0.48                  (0.20-0.80) Eosinophil count                                0.21                   (0.02-0.40) Basophil count                                    0.03                   (0.00-0.20)   Any comments would be much appreciated.  We left the doctors with him saying she needed to do a two week gluten free challenge to notice any effects.  Within 24 hours she had gone from 4-6 toilet stops a day to 2.  However she had severe stomach cramp on gluten free.  Could this be because her gut is not used to working efficiently?  Any suggestions would greatly help as I just feel deep down there is something going on particularly with the cramps and spasms really impacting at the moment even when she just gets up out of a chair.     Thanks   
  5. Hello,   I received my celiac test results today, and my doctor wasn't very helpful in explaining any of it.  I have an appointment with a GI in a couple weeks, but was hoping to get some insight before then.  My doctor said I was positive for celiac, which kind of surprised me because I have not had an endoscopy.     As background, my daughter has celiac disease, confirmed with an endoscopy.  I eat mostly gluten free at home, but have been trying to eat gluten in the weeks leading up to my test.  I am not sure if I ate enough gluten, though.  Some days I would eat a slice of regular bread, or maybe a handful of pretzels, or some crackers with gluten.  If I was at a restaurant, I would order a regular meal with gluten (such as a hamburger with a bun), but I don't go out often.   Here are my test results:   tTG IgA <1.2 (negative <4)   tTG IgG 23.8 (Positive >9)  The comment after this one said, "tTG antibody, especially the IgA, is sensitive and specific for untreated Celiac Disease.  The IgG assay is used mainly to detect celiac patients who are IgA deficient.  Verified my repeat analysis."  However, looking at my IgA level below, it doesn't seem as though I am IgA deficient, right?   Gliadin Ab, IgA (DGP) 3.7 (negative <20)   Gliadin Ab, IgG (DGP) 2.2 (negative <20)   IgA 166 (range 71-397)   Is it odd that my IgG levels were positive on one test and negative on the other?  Should I eat lots more gluten before my next appointment?
  6. Need Dh Help

    I am 49 female and I think I am about to lose my mind. Have had GI symptoms for several months, nausea and stomach pain after eating and constant diarrhea for no good reason. Recently dx with type 2 diabetes and controlling with diet and A!C down significantly since dx due to change to diabetic diet and then I get this recurring rash which I had exactly a year ago and I have patches of blisters on my knee foot, face, ankle and several fingers and toes and it itches like crazy and the pictures on the internet of DH look exactly like what I have except mine is less severe but it is spreading. My face feels sunburnt and under my eyes are all red and puffy and my eyelids are swelling. Even my ears feel red and hot and I have patches of red in my eyebrows even. My nose is also completely red and I have several lesions on my face.   Made apt with family dr but not the one I normally go to bc he was out into March and I can't wait or handle this itching until then. The one I am seeing is a little jerk but of course had availability and I have dx myself anyway. With all those symptoms I am pretty sure I have celiac. Question is if he won't order blood work or biopsy of skin I will have to go see a specialist and from all the reading U of C in Chicago has a great department for this and it is an hour from where I live in Indiana so I can go there. I figure tho it will take several weeks to get in there so in the meantime what do iI do. If I go gluten-free now and/or convince Dr. Jerk to give to Dapone will my test results be inaccurate or falsely negative bc I have been gluten-free and taking the medication for a while? I want an accurate dx and I just have to ask this Dr. Jerk to do what I want and hope I can get in fast at UC   So questions is what to do before get to UC and Is UC as good as it appears to be from my reading. If Dr. Jerk won't give me any blood work orders, biopsy or even Dapone what else can I do to combat the rash but also have correct results and UC? Any help is appreciated. I am so upset and can't work like this and well you all know the story, I will lose my business and my house and everything. PLEASE HELP I NEED ADVICE!! Thanks. Crystal. The main thing I need is just for this itching and burning to go away !!
  7. Hello,   I'd love a little advice/information from people who probably know more about this than I do. Sorry for the slightly long post...   I am 32 and female. The only real health problem I have had is endometriosis, which was diagnosed and treated in 2002 and I have had no real problems with since. I am generally very healthy.   Last year, in May 2014, in began having some abdominal tenderness just above my belly button if the area was pressed (usually by my toddler's rather enthusiastic hugs!) and left-sided discomfort (waist level) at my back sort of radiating round to the side. I also felt quite full after eating only a little. My GP ordered an ultrasound, which was normal, and a whole range of blood tests, also all normal.   Things continued and in September, my GP ordered a coeliac screen which came back positive. My tTGA was 15.3 (normal range 0-6.9) and endomysial antibodies were positive. At the end of November I had an endoscopy and biopsy (4 samples were taken), which came back negative for coeliac disease.   In December I started experiencing problems with upper abdominal bloating and also constipation (sorry if tmi, but I could actually go four or five times a day, but just a couple of very tiny little pellets). I also began feeling lightheaded after eating and, with the exception of feeling hungry, felt so much better if I didn't eat or drink at all. So my GP repeated the coeliac screen to see if the first test was an anomaly. This time my tTGA was 35.7 (normal range 0-6.9) and endomysial antibodies were positive.   My gastroenterologist (who discharged me back to my GP after the normal biopsy) said I categorically do not have coeliac disease because of the negative biopsy and to continue as normal (with no guidance as to what was causing or would help my current symptoms). My GP agrees that I don't have coeliac disease.   So, my question: is there anything else that can cause a positive result on a tTGA blood test other than coeliac disease? My GP and the gastroenterologist both said false positives can occur.   My GP suggested I trial a gluten-free diet, but I'm concerned this is a very strict diet and unneccesary if I don't have coeliac disease and will delay/prevent an accurate diagnosis if I do. I have a two year old son, so if I do have coeliac diease, I understand he should be tested?   I don't know where to go with this now. Prior to all this starting last year, I had never even heard of coeliac disease. I also don't know if these blood tests are clouding the issue of what is actually causing my symptoms if they really are just false positives...   I would really appreciate any advice or insight... Many thanks in advance!
  8.  I was not diagnosed with Celiac until I was 63 years old. I always thought and was told I had IBS. One of my sisters has three autoimmune diseases but not Celiac. My other sister had the basic blood work done for Celiac two years ago and it was negative. I told her if they will not do gene testing then she needed to be retested every couple of years. She goes to Kaiser Permanente in Colorado and at her last appointment she asked to be retested because of my advice and the doctor said, "who made your sister a doctor," and refused to retest her. Does anyone have a online source that has a lot of credibility that I can copy and send to my sister to give to her doctor about being retested every few years. 
  9. Good Afternoon Board,   First and foremost thank you in advance to anyone that can help out here. I have just started poking around the internet to interpret some lab test results (my doctor contacted me and said I was gluten intolerant), but I would like to do my due diligence and research to interpret some lab results.   To give you a bit of background about myslef, I am a 29/M in good health- and haven't experienced any symptons I can really point out as gluten intolerant ( to the best of my knowledge). My girlfriend* has suggested that I look into root causes of my ADHD, and thus the journey of determining if diet may be one issue. Hence the reason for my celiac panel.   At any rate, if anyone can help me interpret the below results, any help would be greatly appreciated.   Thank you,
  10. Hello I have just joined the forum and have been reading for hours and learning soooo much. I just want to check that I had the proper tests before I get to far along on a gluten-free diet.   Antinuclear Ab (ANA)  1:80 range <1:40   ANA ifa pattern Homogeneous   Gliadin Deamidated AB IgG          37.1H    range <=20 neg, 20.0-30 weak positive, >30 positive   Gliadin Deamidated AB IgA          56.7H    range <=20 neg, 20.0-30 weak positive, >30 positive   Transglutaminase AB IgA, EIA     >100.0H   range <=20 neg, 20.0-30 weak positive, >30 positive   Endomysial IGA Antibody             Positive    range negative   ENDO TITER                                 1:10*       no range is given   I was not a big gluten consumer prior to testing although the las few years after doing the SCD diet for 2 years I would consume gluten occasionally ( I maintained a low carb diet) with a more frequent consumption 4 - 6 months prior to these tests after deciding. I do have Hashimoto's thyroiditis.    Thanks Diane
  11. Hello everyone. I've been having many different symptoms and I just wanted to see what some people's thoughts were on this. I've been having seemingly random bouts of diarrhea, terrible gas, heartburn, and abdominal discomfort recently. When I say recently, I mean that in the past month at least one or two of these symptoms is happening every day in some way and it's sometimes mild and sometimes severe, but in the past year, I have been struggling with these symptoms on an intermittent basis.The gas is what is usually there constantly along with stomach rumbling, but I also have gotten heartburn several times in the past few weeks, and it's usually accompanied by the gas and when I have heartburn, it's painful to the point of not being able to concentrate. Last time I had this heartburn and gas, I remember that I was eating a few bagels in a hurry a few hours beforehand.   However, today I feel mostly fine except for some minor stomach pain I got a few hours after eating and weakness when I tried exercising. I had pasta with vegetables for lunch. Some days, though, I will have a bad headache and feel a bit fatigued as well as have difficulty concentrating. Sometimes when I wake up and stand up I feel dizzy or I will have tingling in my feet. I also have issues with anxiety that definitely are linked to some of my GI distress as well, though.   I did go to a family doctor and I will be going to get blood tests done for several things including TSH, ANA, iron and b12 levels, CBC, CMP, wheat allergen, and of course Celiac. I guess it's just weird that I was talking about all my symptoms and that I feel almost completely fine now. I know the symptoms are varied for Celiac, but does this seem like it really could be the case?
  12. Hello,    I was recently tested for gluten intolerance. While I don't think I haven Celiac Disease, I received my results online via My Chart, but I haven't gotten the chance to speak with my doctor yet. Would anyone be willing to take a look at my results and let me know their thoughts? Thank you in advance.   
  13. Hi, I am new to these boards and am looking for some advice. I have been doing the Amazing doctor race for over 25 years now and the best anyone can come up with is Chronic Fatigue Syndrome / Fibromyalgia. I have been battling this illness for over 25 years now and I just need something to end. About every few years I see a new doctor who wants to figure out what I "really" have besides Fibro. They do some tests, send me to some specialists and all roads lead back to Fibromyalgia. UNTIL LAST WEEK. I just moved to another state and started with a new Dr. A nurse practitioner with her doctorate in medicine and a well known diagnostician around here. So I went with intentions of getting back on Fibromylagia meds. Rewind, about 3 1/2 years ago I was given a glimmer of hope for all my problems. Cymbolta. Yes, it helped. Made some of my joint pain go away, made me a little less angry. But that was about it. I lasted about a year and then I wanted to try and get pregnant again (I already have one child). So I had to go off it. Going off this medication really pin pointed the decline of my health. Two miscarriage after that and now I can't get pregnant after being able to get pregnant 5 times quick in my life. Fertility doctor has no answer despite my eggs being a little less great due to my age. But he said it is still possible. All my fertility tests normal. Back to the new nurse practitioner. Of course, like so many, after seeing me for my initial visit, reading my thousands of medical records, listening to me list my host of one million symptoms from the past 25 years (chronic sleep deprivation, chronic fatigue, no memory, exercise intolerance, massive brain fog getting worse, chills that come and go, stomach bloating, chronic constipation, random bouts of IBS, unexplained weigh gain, thyroid cancer (fine now and levels are always fine), Wolf Parkinsons White (heart was ablated, fine now with that), eye swelling upon waking like an allergic reaction, massive scabs and head dandruff, pin and needles in feet and hands, arthritis in neck, chronic neck pain after injury, burning muscles and eyes after exertion, weird bladder issues, choliostatis of the liver when pregnant, muscle stiffness that is worse on awaking, chronic headaches plus migraines (sugar induced I think), weird chemical sensitives that come and go over the years, late puberty, miscarriage and infertility for no reason, loss of tooth enamel for no reason all of the sudden ( black on my tooth but dentist said loss of enamel, nothing else), stomach acid, cystic acne, irregular periods all of the sudden in the last few years, weird rashes and extreme itching for no reason, concentration issues, ringing in ears, eye twitching, eye sensitivity to light and night driving, hoarseness, muscle cramps, etc... And the list goes on), she decided she wanted to get to the bottom of "this Fibromylagia", and she actually used quotes with her fingers when she said it. She looked at some older tests I have, said I had some slight elevated liver enzymes (I have had this for years and years), and wanted to send me for a stomach ultrasound. It came back fine. Nothing wrong. The she sent me for a host of blood work. Different panels, didn't tell me what they were. Went and came back for the results. She said again I have slightly elevated liver enzymes, slight elevated cholesterol level (which I had had before as well despite eating a low fat diet my whole life). She said I have an elevated cortisol level, she said it could be why I can't lose weight but I needed to see an endo for it. I also had a large vitamin D deficiency requiring prescription in a huge dose once a week. The she hits me with the whopper. She did something called a Celiac panel and I have Celiacs. If you want to live, you can't eat wheat. No gluten, ever again. WHAT??? This women must have been out of her mind. Did she know who she was talking to? I am the carb queen. I live for it. Bagels, cereal, low fat cookies. No way lady, you must be wrong. There is no way I can stop eating that stuff. Quickly tears swelled up in my eyes. First I thought she was some holistic freak. Then I doubted it because no doctor has ever told me I had anything wrong with my blood work. I just didn't believe her. I left mad and sad. I went home to process. Here we're my numbers.... Immunoglobulin A : 128 (normal, range 70-400) Gliadin IGA Deamidated: 2.1 (normal, <20) Transglutaminase IGA Autoabe: 20.8 (out of range <15.1) I started reading and reading and reading. Could this really be? Could this be the answer I have been chasing for the past 25 years? I read more and started to wonder why she didn't advise me to go see a Gastro, the next obvious choice. She scared me. I immediately stopped gluten, just in case and to see what would happen. She said it would take time but maybe in two weeks I would have some relief. I researched, dropped $300 on gluten free products, bought every type of everything you could imagine, got schooled by another gluten free person, etc... I also immediately called her asking why she didn't recommend me for an upper endoscopy. She said she didn't need to, this is what I have. I asked her for a recommendation anyway. I had to know, I have to know. There is no way I can not know. I make the appointment for five days later and I go on my gluten free way. Five days of gluten free, maybe a little more clear but not so much difference. My stomach was doing circles, it's like my system didn't know what to do. I was in the bathroom straight for the first 24 hours, which is usually the opposite of what happens to me. Five days later, I go to the 1st Gastro. His nurse practitioner sakes me some questions, takes my vitals and puts me in the Dr's office. The guy walks in, doesn't shake my hand or introduce himself, looks over my blood for two seconds, says I don't know if you really have this but I will do the test, signs me up and walks out. Five whole minutes this jerk spent with me and asked me nothing. He says, don't worry, you can eat gluten. It doesn't matter either way, it won't effect the test. I asked him about the liver and the vitamin D, he replies it has nothing to do with any of this. I leave with a endoscopy planned for a week from that day. I left feeling upset. I got home and decided this was not a doctor I wanted to give my money to nor is he a doctor I want doing a procedure one me. What happens if I don't have Celiacs and I still have to deal with this guy to help me find something else? No way. I left and went to a dinner. I ate my first dose of gluten in form of two pieces of rye bread. Instant bloating. Wow, that's weird. I never even realized all these years that feeling in my stomach was bloating. I always just thought I could feel myself gaining weight every time I ate a carb. Lol. I continued that night with a bowl of ziti. It happened again. Wow. I went on to eat some cheese crackers before bed, just to see what would happen. Besides feeling like crap all day and exhausted (as usual), I woke in the morning with massive swelling under my eyes, like I had bee stings. Black circles with bee stings on top. You could see the blood vessels popping out. Stomach rumbling all the next day. Constipation comes back. I was shocked. Cold adding the gluten back in really make me feel something? I never in my life associated any of my pain or ailments with bread or pasta, never with gluten, I didn't even know what gluten was till five days ago. Wow! I decided from that moment on, no matter what, I NEVER WANT TO EAT GLUTEN AGAIN. It just didn't make me feel good. Since I added it back, my body is in what I call a "serious Fibromyalgia state". Eyes burning, body hurting, feels like I haven't slept in 10 years. My cognitive is so, so bad. Stomach is turning, bloated. And guess who just joined me? My hemmiroid decided to make an appearance all of the sudden. It's been a while but we reunite. Thanks! I go home, get some good recommendations from family to a good Gasto. I go. He spends an hour with me, learning my case, listening to everything from the beginning. Checking all my blood. Says this is a possibility that I have Celiacs, he sees it more and more and if I don't have celiacs, I probably have a sensitivity to gluten. He tells me he wants to do the endoscopy but now that I ate gluten free for five days, he wants to be sure we don't skew the results and wants me to wait another two weeks. And here is the kicker... You must eat gluten the whole time. SERIOUSLY??? Oh God, I'm going to die! I go home, cry some more, eat my gluten (and sneak in a few non-gluten things here and there, hope it's OK?) and now I wait. I am so anxious. This all makes so much sense. I can't stop researching and can't saying "WHAT If" "WHAT IF"??? What if this is my answer? What if this women is my savor? What if I have been poising myself and killing off my organs for 25 years and no one found it? What if??? That is why I come to this board, turning to people with I'm sure similar stories. I have endured so much. I have a sweet little five year old that is denied a functional mother. I have a great business that is suffering. I have a relationship with my husband that could be so much better. I have so much rage and anger and pain and I want there just to be an answer. Please, there has to be, please let this be it! Opinions from my test results? I know it sounds like I have it from everything I'm saying but what about the blood? How likely is it that I have this? Thanks for listening!!! I will post my endoscopy results here in two weeks, I promise. From the girl that couldn't imagine giving up "carbs" to the girl that is dying to, literally.
  14. 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.
  15. Hi all....I'm desperate for any advice, suggestions and experiences which might help me solve my issues and diagnosis....a very wise bird (she knows who!) suggested posting to ask the advice of all...... So after several months of being desperately unwell.....main one being complete exhaustion...(couldn't move, function or think..,) and entirely unlike me as I work FT in a demanding and stressful job with a young family......I had some blood tests.... My bloods were all wrong. Low platelets, white cells etc..... Had more tests inc for celiac disease..... Thy came back off the scale for TTb IGa as over 300. But ema Iga negative. Sent for endoscopy. Endoscopist said def celiac disease with TTG IG off the scale like that. Back at docs last week as ESP unwell post endoscopy couple of days before....more bloods. Told today by receptionist B12 too low (161.......) and need it repeated and an appointment with doc. Doc tried to ring later but missed call. Receptionist said endoscopy was normal as asked result whilst on phone.(bit not disused or confirmed by Gp) So does that leave me....what should I ask for or expect next? Every single bit of research etc on online says with a TTG IGA like mine it must be celiac disease and I know an endoscopy will not always find damage (4 samples taken)..... Ives been gluten-free for 2 weeks now.,,,,the change is absurd.......(although took until this weekend...). I am starting to have a bit of colour, my eyes look less tired and black head is clearing and I actually feel like working....not just sleeping.....(but still tired) BUT it's also made me realise that I've clearly had an upset tummy for as long as I can remember..... On reflection I've been going to the loo lots and not always that over the last few days ive hardly been at all and different and my tummy just feels still, settled and 'normal'....... Which worryingly makes me realise I'd forgotten what 'normal' was...... So...advice, next steps, help, experiences.....all if my biopsy IS negative with a TTG IGA that high and also now b12 deficient,,,,,if NOT celiac disease....what else..!!? Thanks loads experts....,
  16. Hi all....I'm desperate for any advice, suggestions and experiences which might help me solve my issues and diagnosis....a very wise bird (she knows who!) suggested posting to ask the advice of all...... So after several months of being desperately unwell.....main one being complete exhaustion...(couldn't move, function or think..,) and entirely unlike me as I work FT in a demanding and stressful job with a young family......I had some blood tests.... My bloods were all wrong. Low platelets, white cells etc..... Had more tests inc for celiac disease..... Thy came back off the scale for TTb IGa as over 300. But ema Iga negative. Sent for endoscopy. Endoscopist said def celiac disease with TTG IG off the scale like that. Back at docs last week as ESP unwell post endoscopy couple of days before....more bloods. Told today by receptionist B12 too low (161.......) and need it repeated and an appointment with doc. Doc tried to ring later but missed call. Receptionist said endoscopy was normal as asked result whilst on phone.(bit not disused or confirmed by Gp) So does that leave me....what should I ask for or expect next? Every single bit of research etc on online says with a TTG IGA like mine it must be celiac disease and I know an endoscopy will not always find damage (4 samples taken)..... Ives been gluten-free for 2 weeks now.,,,,the change is absurd.......(although took until this weekend...). I am starting to have a bit of colour, my eyes look less tired and black head is clearing and I actually feel like working....not just sleeping.....(but still tired) BUT it's also made me realise that I've clearly had an upset tummy for as long as I can remember..... On reflection I've been going to the loo lots and not always that over the last few days ive hardly been at all and different and my tummy just feels still, settled and 'normal'....... Which worryingly makes me realise I'd forgotten what 'normal' was...... So...advice, next steps, help, experiences.....all if my biopsy IS negative with a TTG IGA that high and also now b12 deficient,,,,,if NOT celiac disease....what else..!!? Thanks loads experts....,
  17. Hii...thank you for reading. New to this. Before Xmas I became exhausted and lost about a stone in 4 weeks. Eventually had tests and had low white blood cells, low platelets and low neutrophils. Had more tests and my TTG IGA was above 300. I'm about to have a biopsy....looking for coeliac disease. Sound likely?!, I've now been keeping a food diary and I think I've probably ignored stomach symptoms as life us so busy..... Feel rotten and exhausted all the time.. Hoping the biopsy has the answers...... Another q.....should I choose to be awake or sedated, Thank you
  18. I have been with celiac most of my life (medically diagnosed in 1984). We have had 6 children. Through the years I have often mentioned the history, but since kids have not shown signs, doctors weren't concerned. My eldest child was diagnosed in her 20's. My youngest children are 6 and 8 years old and we now have a family dr attuned to my concerns!! My 6 yr old has been having constipation fairly regularly (no pun intended!) for a couple of months. Sometimes this is interfering with getting to the school bus on time!   The 8 yr old does not seem to have tummy issues. About a yr and a half ago, another dr diagnosed him with ADD (non-hyper). That dr was also very pushy about rx meds for ADD. I never felt my concerns about anxiety or sleep disorders (he's had trouble falling asleep since he was 18 mos old!!) or celiac disease had been given proper medical attention. The last time I told him I was having trouble wrapping my head around the explanation of why anxiety and sleep disorders were not ruled out he answer: YOU ARE NOT UNDERSTANDING IT BECAUSE YOU DON'T WANT TO. IF YOU WOULD JUST PUT HIM ON THE MEDICATION, IT WOULD SOLVE ALL THOSE PROBLEMS.  I was so in shock, I could not find words. My husband and I nodded our way through the rest of the conversation, then left the office, NEVER to return!   Anyway, through all of that, I did some homework on celiac disease (something I haven't done all these years!). As I'm understanding it, some of my child's issues could be symptoms of celiac disease. Like being disorganized, inattentive, requiring much redirection from teacher and tantrum behaviors at home. Even lately, I've noticed that when he gets a really good night of sleep, he's waking up with puffy raccoon eyes, that linger all day long!! He's 4' 2" & weighs about 50 lbs. I'm wondering if some of the behavior issues are from being tired??  We have had him in therapy for a few months and the therapist is not convinced of the ADD either. He does not display behaviors (symptoms) consistently. At times, he has gone many weeks improving organization, attentions and self-control, only to return again.  The family dr we are now seeing has agreed to test him as well, but said yesterday that he doesn't think he's as likely a candidate for celiac as his brother because of the absence of stomach issues. I did mention that I've learned of people with celiac disease that lack stomach issues.  He seems like a good dr and was not hesitant in having either of the boys tested. He even seemed to suggest he was going to take some time to learn more about some of the things I was saying!! (I think I like this one! )    I have no knowledge of these tests that many of you seem to be familiar with. When I was diagnosed, I was a kid, and my parents gave me "need to know info" only. Additionally, many of these tests done nowadays had not yet been developed. I was given every test to rule stuff out, the last was some kind of biopsy. THAT resulted in my diagnosis. My kids' dr has ordered a cbc cmp  free t4 tsh celiac disease panel for each of them. Following the tests, they have been referred to a peds gastroenterologist in Rockford, IL. (about an hour away!)   Since my only experience with celiac is my own, I'd like to have some input from parents who have been here. I've started introducing my husband to the notion that things will have to change in a major way at home, and school, if either of the boys is diagnosed. They won't have to go it alone like I have for so long!
  19. Hi everyone,   I am a newbie on this site but really needing some advice. I have had 'IBS' since my early childhood and have suffered with many days and nights lying on my bathroom floor or passing out on it with terrible cramping and diarrhea.   Last week a doctor looked over my history and asked me if I had celiac disease as I seem to gain weight even when I can only sip chicken soup and have diarrhea for days, I have chronic sinusitis, sore throat, ear infections, Acid reflux, had my gallbladder removed and recurrent mouth ulcers. He aske about my family history and as my mum is the same as me and my nan had hypothyroidism and passed away from Lymphoma he seemed pretty convinced. However he sent me home with some antibiotic ear spray for my sore ear....I decided to go gluten free and see if this sorted out my cramping and diarrhea too. this is the story of my life. I go to the doctors and they never give me any answers.   So I discovered that once giving up gluten for a day or two my cramping stopped but still had diarrhea. I quit dairy and all of a sudden I am pain and diarrhea free! Happy days. Then today my lovely husband went to costa and got me a soy latte and I ended up in hospital with an allergic reaction! I felt like I had the flu run up behind me and jump on me! I almost blacked out both at home and the hospital but felt much better with piriton and hydra cortizone injections. Now I have been told I need allergy tests to sort out what I can have and what I cant.   So now I am afraid to eat or drink anything and I feel that I dont know what to say to my doctor because I dont know what tests to ask for here in the UK. I am also worried for my kids as going gluten free seems to have helped my 4 year olld daughter with her witholding poo that has been going on for 1 1/2 years (told it was due to stress as her dad has been very ill with cancer) and my 6 yr old son is being tested for adhd and aspergers which can also be related to celiac can't it? I am not sure I am looking at the right websites so unsure. I am pretty sure the doctors are not taking me seriously because they assume I am suffering from anxiety from my husband's illnesses but I have been sick for over 40 years and he has only been sick for 2!   Anyhow, could someone please tell me if there is a list of allergy free foods I can be safe to eat until tested and if celiac will turn up on an allergy test?? I just don't know and I am afraid to look at too many websites as some of them are written by complete nutters.   thank you for your time Bunny
  20. Hello! Im very new to all of this and honestly feeling overwhelmed. Just received my results from Entrolab and was wondering if someone with more experience in all this wouldn't mind helping me analyze what exactly they mean. Any help/advice is very much appreciated! Here are my results: B-1) Gluten Sensitivity Stool Panel Fecal Anti-gliadin IgA 191 Units (Normal Range is less than 10 Units) Fecal Anti-tissue Transglutaminase IgA 59 Units (Normal Range is less than 10 Units) Quantitative Microscopic Fecal Fat Score 1048 Units (Normal Range is less than 300 Units) TEST INTERPRETATION(S): Interpretation of Fecal Anti-gliadin IgA: The level of intestinal anti-gliadin IgA antibody was elevated, indicative of active dietary gluten sensitivity. For optimal health; resolution or improvement of gluten-induced syndromes (mainly falling into six categories abbreviated as NAAAGS – neuropsychiatric, autoimmune, asthma, abdominal, glandular deficiencies/hyperactivity or skin diseases); resolution of symptoms known to be associated with gluten sensitivity (such as abdominal symptoms - pain, cramping, bloating, gas, diarrhea and/or constipation, chronic headaches, chronic sinus congestion, depression, arthritis, chronic skin problems/rashes, fibromyalgia, and/or chronic fatigue); and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well. For additional information on result interpretation, as well as educational information on the subject of gluten sensitivity, please see the "FAQ Result Interpretation," "FAQ Gluten/Food Sensitivity," and "Research & Education" links on our website. Interpretation of Fecal Anti-tissue Transglutaminase IgA: The level of intestinal anti-tissue transglutaminase IgA antibody was elevated, indicative of an autoimmune reaction to the human enzyme tissue transglutaminase. This is almost always due to clinically significant gluten sensitivity. In rare cases, anti-tissue transglutaminase antibody appears in the absence of clinically significant gluten sensitivity, either as a marker of latent gluten sensitivity, as a consequence of an autoimmune reaction to a different stimulus (either dietary or otherwise), or possibly from liver disease. Tissue transglutaminase is an intracellular enzyme present in virtually all human tissues and organs, and is secreted extracellularly in response to tissue damage (such as occurs with trauma, surgery, pregnancy, infections, or inflammation-induced tissue damage). It is this extracellular release that allows the enzyme to become antigenic, especially when underlying gluten sensitivity is present. The fact that dietary gluten sensitivity so often induces a subsequent and secondary autoimmune reaction to this important human enzyme explains why autoimmune reactions and diseases so often accompany clinically significant gluten sensitivity. Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score greater than or equal to 300 Units indicates that an abnormally high amount of dietary fat has passed undigested and/or unabsorbed into the stool. Malabsorption of dietary fat almost always is associated with malabsorption of all other nutrients as well (protein, carbohydrates, vitamins, etc.). When associated with gluten sensitivity, elevated fecal fat usually is due to gluten-induced small intestinal functional damage and subsequent malabsorption; this does not require there be villous atrophy present. However, deficient production of enzymes by the pancreas can also be associated with celiac disease or non-celiac gluten sensitivity with autoimmune attack on the pancreas, causing maldigestion and malabsorption of dietary fat and other nutrients. Some other causes of exocrine pancreatic insufficiency include chronic pancreatitis from any cause (alcoholism being the most common), pancreatic resection, pancreatic cancer, or common bile duct obstruction. Pancreatic insufficiency as the primary cause of fat malabsorption usually causes significant elevations of fecal fat values, usually into the moderate (600-1000 Units) or severe (>1000 Units) ranges. To distinguish between small intestinal malabsorption and pancreatic maldigestion, a fecal pancreatic elastase test is necessary, which is now available from our laboratory. Other possible causes of elevated fecal fat (steatorrhea) include - another inflammatory bowel disease (such as Crohn’s disease which can be associated with gluten sensitivity); deficiency in the production or secretion of bile salts; overgrowth of bacteria in the small intestine; diarrhea from any cause which can, in turn, cause dietary fat to rush through the intestine unabsorbed; consuming very large amounts of dietary fat; eating unabsorbable synthetic dietary fat substitutes; or taking “fat blockers;” and resection of the small intestine causing “short bowel syndrome” (if you have had an intestinal resection). Any elevated fecal fat value should be rechecked in one year after treatment to ensure that it does not persist, because chronic fat malabsorption is associated with osteoporosis and other nutritional deficiency syndromes.
  21. Hi!   I just had a ton of blood work done and my apt isn't until Wednesday to review w/ the Doctor.  Here are my results that I don't understand, the rest was "normal":   HLA-DQ2           Neg HLA-DQ8           Neg HLA-DQA1     01 and 05 HLA-DQB1     0301 and 0602   TSH 1.72 t4 Free 1.3 T4 Total 6.8 Thyroid Antibodies less than 10 T3 Uptake High at 36 IGA  5 Immunoglobulin A  130 Tissue Trans Ab IGA TTG Antibody IGA  Less than 1   Vitamin D  20 (Low) Sodium 133 (Low) Casein/cow milk High at 7.7 Absolute Neutrophils  9074 High   I also tested negative for all nuts and corn.  How accurate are the blood tests?   Thanks!!      
  22. Hi Everyone-  I went to my doctor recently and had my second Celiac blood test. I have been gluten free for about 9 months now. My first test was "inconclusive" because of a low IgA. My second test is negative- but again, Im gluten free now.   My doctor does not want me to have to eat gluten again for a months, so he suggested ELISA/ACT Lymphocyte reactivity testing. Has anyone ever heard of this? Its a blood test that tests my white blood cells reactivity to MANY foods and chemical additivies- gluten /wheat being one of them.    The test is fairly easy, though I have to go off all antihistamines for 4 days, and for 2 days, I have to consume/use NO chemicals- so no body lotion, hair conditioner, make up, etc. The test also is not covered by insurance, so there is a cost I have to consider.  Wondering if anyone had heard of this kind of testing, or better yet had any experience with it? I really do want a true diagnosis as I am getting married soon, and we are talking about children and I want to know what Im dealing with before I go down that road. But.... Im pretty convinced be it celiac or intolerance, my body doesnt like  gluten - so I dont want to have to eat it to find out!!   Thanks !! RNRN 
  23. Last week I got my blood drawn to test for gluten antibodies.  I got the results sent to my account today and I can't believe they are negative!  I've been off gluten the past week (starting AFTER my tests) with a huge reduction in symptoms.  I'm actually disappointed the tests came back this way.  Here are the numbers.  Can you help me make sense of this?  I had the following symptoms (almost all starting in 2004) and really truly believed they were from celiac, now I don't know what to think:   acid reflux anxiety PMDD Brachial Neuritis Reactive ariway disease Migraines/headaches CHRONIC FATIGUE Vitamin D Deficient (level 9 with 31 being the lowest in the range) Hypothyroidism diagnosed 7/20/13 Glaucoma diagnosed 9/19/13 WEIGHT GAIN insomnia alternating constipation/diarrhea   Along with the celiac test the blood draw revealed that my thyroid is actually worse since I started synthroid in July!!!  How did it get worse?!?!?!   Celiac Test Results:   Transglutaminase Iga value 3 range <20 Iga Blood value 116 range 78-391 Gliadin Ab IgA value 4 range <20 Gliadin Ab igG 3 range <20   thyroid was TSH value 9.19 range 0.4 - 5.5 on July 18th 2013 thyroid was TSH value 11.25 same range as of Septmeber 26th 2013 My Vitamin D improved from level 9.5 to 30.7 since I started the supplement, which is better but still low.   I actually had a sleep study done Saturday and I now have sleep apnea and restless leg syndrome to add to my list of symptoms.  If it's not celiac why am I falling apart????  I am 38 years old.  Was healthy until 2004 when the anxiety, acid reflux, PMDD, Brachial neuritis, weight gain, and Reactive Airway disease started.  I have had migraines and headaches since I was 8 years old.  I was thin until 2004 when I started gaining A LOT of weight!  I mean A LOT!  I have been exhausted since I was a teenager.  Squamous cel carcinoma (skin cancer) and sun allergy diagnosed at age 25'ish.    I'm so depressed this is not celiac.  I was hoping to have something to tie all these symptoms together so I can get better.  But IN THE PAST 6 MONTHS ALONE I HAVE DEVELOPED: hypothyroid, Vit D Defeiciency, Glaucoma, Sleep apnea, restless leg syndrome, and fatty liver.  At this pace things don't look good for me at all.  I am also getting a few skin biopsies this week that are suspected skin cancer.  
  24. I recently was tested and diagnosed with celiac and mast cell disease. I have read a lot, but cannot find any info on the "degree" of severity of the celiac. I am also in treatment (second time) for ovarian cancer, so I get a lot of labs. Could you interpret this for me? 1. Celiac profile , IgA 175 ( range 66-436) 2. anti ttg IgA antibodies 12 (range .0-7) Thanks!
  25. A month ago I found out my hemoglobin was fairly low and I was diagnosed with iron defiiciency anemia. I put some things together in my head (the seemingly random anemia, Hashimoto's disease, a bunch of GI issues, chronic pain and fatigue dx'ed as fibromyaliga) and asked my doctor about the possibility of Celiac disease. She agreed that it could be the problem and ordered the IgA tTg test, which came out just fine. I don't know if she ordered a total IgA and I'm going to call and ask about that on Monday.   I was wondering what people think about more tests. I do have an appointment with a GI doc over a month from now. I can't get an earlier appointment and can't switch to anyone else because I'm on Medicaid and this GI doc is the only one nearby who will take that insurance. I'm seriously considering forgetting about the GI appointment and further tests and dropping gluten ASAP and dairy as much as possible, moving toward dairy-free. I want to get that stuff out of my system and hopefully start feeling better! Is it worth it to keep eating food I know is bothering me so I can get more tests? With the negative IgA tTg test would you pursue other tests? I had pretty much decided to just go gluten free and see how I end up feeling in a few months but wanted to get the opinions of folks who have gone through all of this.   Thanks!