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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. I had a celiac blood test around may 2015. I'm 20, male. AGA  -        35       range 0-20 TTG IgA -     5      range 0-20 I believe total IgA was normal. I have been gluten free, avoiding gluten best I could for about  2 weeks before this. On june 2015, did a biopsy, results said no signs of villous atrophy, doctor convinced I don't have it. Been gluten free for about a month before this, doctor only said to eat a 'normal' diet beforehand. I know that this could yield false negative results, but I don't think the amount of time is enough to hide the damage?   Had symptoms since I was 4-5 years old, very skinny , pale, constipation, diarrhea, inconsistent nausea (from eating wheat products, soy sauce), migraines, stomachaches, night terrors, sleepwalking. Symptoms were most evident till around 10 years of age. During my teens, the symptoms seemingly start to fade, rarely nauseated, random bouts of diarrhea 1-2 times a month or so.   Been gluten free for up to 8 months now, decided to start eating gluten again just to see how I would feel/ for retesting. Almost on day 2, no noticeable symptoms.  Ate gluten heavy for a month, a year before, breads, pasta 2-3 times a day, lost over 3-4 kg, started feeling overly lethargic during the day/after eating gluten. Sharp stomach pains and mild diarrhea once or twice.   I'm quite certain it's celiac, but if its not, and after reading about how non celiac gluten sensitivity might not exist,i don't really know what to think anymore. Any opinions/ similar experiences would be appreciated.  
  2. Hi, I'd really appreciate any advice anyone would be able to give! I've done some googling and reading up on celiac over the last few days, including on the different tests for it, but I'm still unsure when it can be ruled out as a diagnosis, so I hoped someone here might be able to give me some more expert advice! I'm in my early twenties and I've had gastro-intestinal issues for years, including a lot of the symptoms of celiac/gluten sensitivity. I saw a GP about them 2 1/2 years ago and she did some blood tests which included a test for celiac, which was negative. I don't know what the test was, or what the exact result was, because I just got told over the phone by the GP's receptionist something like I hadn't tested positive for celiac. So my GP suspected a food intolerance or allergy and sent me to a nutritionist. I tried a gluten-free diet, and my symptoms largely improved, so the nutritionist diagnosed gluten as the problem and recommended a gluten-free diet. I've mostly been better over the last 2 1/2 years, though accidentally eating something with gluten in it tends to upset my digestive system, but over the last few months I've been having GI issues again, including possibly gastritis, and also feeling really, really tired. So I was sent to a GI specialist who ran some blood tests, and is also going to do an ultrasound, endoscopy and biopsies. My diet for the last 2 1/2 years has been broadly gluten-free, although I haven't been careful to avoid low levels of gluten (I've guessed what's in things when I've eaten out, and even ignored low levels of gluten in stuff like ice-creams, sometimes just extracted obviously gluten-containing items from my food and eaten the rest of the meal, and I share a kitchen), so I've probably eaten low levels of gluten every week. All the same, I thought there was no chance I'd test positive on any of the celiac criteria on the blood tests.  My results were: tTG = 48.3; endomysial antibody = negative; IgA = normal; feratin = 15; haemoglobin = 147; MVC = 86. So the slightly weird ones were the tTG and the ferritin. I eat a largely vegetarian diet, so I guess that could explain the feratin. But the tTG? As far as I know I don't have any other autoimmune disorders (I hope!); but, in the circumstances, can my tTG result possibly indicate celiac, or does it more likely suggest something else? I've been put back on (deliberately!) eating some gluten every day for the 2 1/2 weeks leading up to my endoscopy and biopsy, and have been eating about one gluten-heavy meal a day. A week in, my digestive system feels pretty bad, and I've also got a nasty cold, but that doesn't indicate anything specific, I know. I'm wondering, if my biopsy is negative for celiac, what do I do then? Does that definitely rule it out, in my case? I'm not sure whether I'll have been eating enough gluten for long enough to make it an accurate biopsy or not.  I went into these tests thinking I was almost certainly not celiac, because of the test result three years ago. But the tTG + ferritin results have made me a bit more uncertain. I just don't want to decide incorrectly it's gluten-triggered IBS (which is what the GI specialist thought before the blood results), and then find out years down the line it is celiac and that I've done considerable damage to my body by not treating it properly earlier! Of course I'll listen very carefully to the GI specialist's advice, but I'd be grateful if any of you could advise whether there are any further tests I should ask for to rule out celiac? Thank you so much in advance!!
  3. Hello, I recently tested positive for Celiacs disease via the blood test  and currently have a biopsy scheduled in January. I have been having progressive stomach issues for the past year and I am currently at the point where eating anything hurts and cause massive stomach pain and other digestion issues.  I already eat mostly Gluten Free because my wife has Celiacs, so when my blood test came back it was just above the normal high range (few points into the positive). Since I don't eat gluten that much at all already I can see how having a slightly above average result would still be accurate for a positive confirmation in a blood test (Since normally you would have way higher results when eating gluten all the time).  Since my initial diagnosis I have stopped eating Gluten entirely and still have having stomach pain. While I believe the biopsy will still reveal useful information I am conflicted with the pre-eating instructions.  My current issue is I have 3 doctors that all have told me different things about how to prepare for my biopsy. 1 - Has no idea about celiacs diagnoses and one day tells me to eat it and the next tells me to not.  2 - Says I don't have to eat Gluten and my biopsy result will still be accurate.  3 - Tells me that I need to eat lots of gluten for my biopsy to be accurate.  What should I do so that I have an accurate test result but also not cause any more potential damage if I do infact have advanced Celiacs disease/stomach damage? Has anyone else been told conflicting information about eating gluten products before biopsy?    Thanks in advance!
  4. 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.  ​
  5. Hello everyone!  I'm back after a year of still no answers.  Finally seeing a new group of doctors since I recently got a new job.  My new primary doctor thinks I may have celiac and wants me to get another opinion.  Going to see the new gastroenterologist next week and I can't wait to go.  I'm hoping to finally get some answers to the issues I've been having.  Although it will be a huge lifestyle change I think I will be relieved to know that everything I'm feeling just isn't in my head.  Doctors are so quick to tell me all of my symptoms are stress-related.  Here is a little background about me!     May of last year I started realizing I was loosing my eyebrows (Still haven't grown back!!) - initially thought it was my thyroid, all levels were within range though.  I'm also not loosing them on the outer corner of my eye but more towards the inner corner (Doesn't really matter I'm sure).  Tested my Iron and my ferritin was down to an 8 when in previous years it was around 200 something.  No bleeding episodes and my menstrual cycles are light.  I started  researching hashimoto's and iron deficiency and started seeing stuff about celiac.    In the lab I work in I was tested for tTg IgG/IgA, Gliadin IgG/IgA and Total IgA.  I was not deficient in IgA and I'm not sure if the testing for gliadin was deaminated or not (don't believe it was).  I don't have my exact results for the tTg IgG/IgA or Gliadin IgA but I remember they were within normal limits, but my Gliadin IgG was 3.59IV and a positive was anything greater than of equal to 1.1.     I also had the genetic test done and I was negative for HLA-DQB1*02 and HLA-DQB1*03:02 but I was positive for HLA-DQA1*05.  I know this isn't diagnostic in itself for celiac disease.    I had a endoscopy and the report read as follows:  A. Duodenal mucosal biopsies with no significant microscopic abnormality.  No diagnostic histology features of celiac are appreciated B.  Gastric antral and oxytocin mucosal biopsies showing chronic gastritis.  Reactive foveolar hyperplasia is present.  H. pylori is negative   The material present is partly tangentially sectioned.  The villous crypt ratio is about 3.5.  There are intraepithelial lymphocytes but they don't seem to be significantly increase in most of the villi.  There are inflammatory cells in the lamina propria including plasma cells and lymphocytes with an occasional germinal center. They are normal to slightly increased in number.  No histologically diagnostic features of celiac are appreciated.   Really hoping this new gastro will shed some light on all of my questions...  Trying to eat as much gluten as I can tolerate before going for testing. I previously did not experience any GI symptoms but now I have been experiencing stomach pain (not everytime I ingest gluten but occasionally) The pain comes in waves, the pain builds up then subsides..I'm okay for a little while and then it happens again.  Keep your fingers crossed for me!!    
  6. Hey everyone,   I was 21, had an increasing diarrhoea problem for months docs could not find why? Then a gastroenterology specialist asked for celiac disease blood tests. Whoops, came positive on anti-gliadin IgA and IgG as well as anti-endomissium IgA and IgG. Had to get a biopsy somewhere else by a general surgeon and that came negative. But the previous doc told me that could happen, to go gluten-free anyway as I showed positive on 4 bloodtests. After I went off gluten the months-old diarrhoea problem eased up and disappeared in a couple weeks.   Now I am 24 and obliged to join the army (Turkish, btw). Army docs want me to get sick to get me off duty. So I have been on gluten again for 10 days.    I havent had any problems yet, and have been eating like crazy. Read that some people here suffered enormously even after one meal. I do have a strong body, even the worst cases of diarrhoea days, I had no other visible problems and all my other stuff looked/looks fine.    Now I am curious of all this, if I have it or not at all. The blood was all positive and the symptom stopped. But no problem for 10 days, when do the symptoms usually show? what was your experience or do you have any advise on this?   wish y'all a healthy life!   Hasan
  7. I just wanted some other opinions about some testing I have had done, about a year ago I had blood tests which showed low IgA but positive IgG for celiac, I then had a biopsy which was negative but I went on the gluten free diet anyways (after all testing was complete). About 6 months after going gluten free I had to follow up with a hematologist about the  low IgA and elevated IgG. After 6 months gluten fee and follow up blood tests my IgG had returned to normal, but my IgA was still very low and he diagnosed me with IgA deficiency. I have been gluten free for about 8 months now and I feel amazing, much better than I have felt in years, no diarrhea, no headaches, I am significantly less fatigued, i used to nap every day and now I almost never need a nap, I am no longer losing weight and I have not had GERD since changing my diet, which was a weekly occurrence before. So basically the blood tests were positive for celiac, and from my understanding IgA deficiency is far more common in those with celiac than those without, and I have definitely responded well to the diet, the only thing that was negative was the biopsy. Is it possible that the Biopsy was a false negative? Has anyone here been diagnosed despite a negative biopsy, or is this just a gluten sensitivity? My gastro seems convinced it is not celiac and called it IBS and said that the IgA deficiency could be a root cause of food sensitivities. Thank you all for your input and advice!
  8. Background: I was having very few true GI issues, although I have always gone back and forth between constipation and loose stools (one or the other over 50% of the time). I went to the doc with depression, anxiety, fatigue, migraines, and really bad joint pain. She ran the gamut of blood tests on me and the Celiac panel came back today. She is recommending I go to a GI, but they can't see me for three weeks! I was hoping you guys could share some advice here, bc I am scouring the internet and not loving what I am finding... that I have to keep eating gluten to make myself sicker or the biopsy could be negative (I had just started a low carb diet >:[ ), that the biopsy could even have a false negative...And to make it worse, it's not my IgA levels that are high, it's my IgG.    Here's my results:   (reference range is <20 units for all of them- is that weird?)   Glialdin IgG: 48 Glialdin IgA: 3 TTG IgA: 16 TTG IgG: 33   Is there anything else that causes IgG levels to be high? Searching the web is not finding much besides celiac...   Any advice or help would be appreciated!
  9. Please document your rash in photos, print them out & take them to the derm @ your appt. The rash may not look like your photos or be flaring when you see the derm. You can't rely on just telling the doc what it looked like, you need to show them!   Do NOT get a biopsy if you have taken oral steroids or used topical steroids in the past 2 months.   DO NOT go gluten free or even gluten light until AFTER the biopsy has been performed.     
  10. I posted a week or so ago about some issues that I am having with my diagnosis. Someone asked me to post my biopsy results from my endoscopy. I never received any replies after that. Can you take a look at this and let me know whether it indicates Celiac to you or not?   My pathology report says "Duodenum, Second part, Biopsy: Focal intraepithelial lymphocytosis. The sections through the small bowel biopsy show fragments of duodenal mucosa with focal intraepithelial lymphocytosis and intact villous architecture. There is no evidence of peptic duodenitis or microorganisms." And then at the bottom of the page it says, Interpretation "duod ?sprue mild chr gastritis o h pylori colon bx all neg." Do you want me to scan this page and post it? Or is that enough information?   Thanks. I really appreciate it.
  11. I was diagnosed with Coeliac disease at age 2 (biopsy) and have been on the diet all my life. (Now aged 45)   This is the fist time properly reading anything about it coming to this website. I have always understood Coeliac disease to mean - eat wheat and you throw up, have diarrhoea and stomach pains. When I moved from milk to gluten aged 6 months I started being sick and lost weight.    Once I was old enough to have freedom to roam a bit, aged 11ish I cheated when it suited me on a snack here or there. And through my adult life when I’ve been caught out on the road I’ll eat a slice of pizza, breaded chicken or other junk food to keep me going when there’s no other option. Stock cubes, beer, soy sauce etc. I’ve always treated as ok but know they have traces.   I have stayed on the diet, with the exceptions above admittedly because way back I was told even without any symptoms you have to stay on the diet as otherwise ‘it’s bad for you’. And so I have, but thinking it has never affected me past the age of about 8 years old.  Reading this site though has shown me a whole list of things I would never have though had anything to do with being a coeliac and look more like a list of things that happen to people in general. All very vague and nebulous symptoms. I thought Coeliac disease did only one thing - destroy villi in the small intestine thus making it impossible to absorb nutrients. This causes rejection of food and malnutrition.    Anyway, the reason I am here: I recently saw a gastroenterologist as I had a stomach ache for a couple of weeks and was worried. I had various test that thankfully showed a healthy digestive system along with healthy villi. I then asked him about my condition saying if I eat gluten I don’t notice any symptoms. People say 'you have to stay gluten free for life’ etc.etc. What’s the deal? His view was - Well, maybe you don’t have Coeliac disease and we could check to confirm it.    He has recommended the following action:   Get blood test now to confirm antibody is negative. Start 5 weeks of eating gluten - 100g / day of wheat. Test again for the antibodies If still negative get a biopsy to be sure.  If negative then you are not a coeliac.    This seems to go against what I’ve read here. I am surprised that being Coeliac is a vague thing these days. As an infant I would have died presumably if it was ignored but it seems people wander around for years with it not realising they have it. Very different to what I understood it to be. So perhaps I really do still have it.   So until today I was thinking I was about to walk away from the diet clear of the disease. I think taking the gluten challenge and tests may be good for me though. If it is positive then it will give me the cue to stick properly to the diet.
  12.  My 13 yr old son has just been told the results of his biopsy were negative, his blood test results were negative, but he has low IAg, he is still suffering from weight loss, fatigue,nausea, constant burping, dry lips ,mouth ulcers, the list is endless. His gastro consultant noted smooth stomach wall with flattened villi when they performed biopsy, and felt this indicated celiacs, but after biopsy results he has discharged my son to a peadiatrician ,who thinks my son is suffering from chronic fatigue. Has anyone any advice because we are desperately trying to find a solution .Thanks
  13. Diagnosing Dh Rash

    I have what may be a DH rash, but I began a gluten-free diet before my doctor recommended having a biopsy to confirm the diagnosis. My doctor’s recommendation for a biopsy was based on, in her words, a ‘low-positive’ tTG IgG result (My IgA result was negative, but total IgA was not tested). The rash has been so terrible and disruptive that I couldn't bear the thought of completing a gluten challenge to be diagnosed, so I thought I would rather wait and see if the gluten-free diet affects the rash over the next several months.  I’ve been eating gluten-free for six weeks now. After a month on the diet, I felt like the rash was receding: it was flattening out, not as itchy, and it was no longer affecting my ability to function in the daytime or sleep at night. About three days ago, I noticed increased itchiness and some of the previously receding rash patches have become inflamed again. I’ve also noticed new hives and intense itching on other patches of skin where no hives have popped up yet. The rash seems to be relapsing and spreading to new areas. These are my questions:   -I’ve seen from other posts that a DH biopsy can be falsely negative if a person is no longer eating gluten. But if I have active rash, how can there not be IgA deposits in my skin that a biopsy would detect? -If I am ‘relapsing’, or the rash is spreading, is it a definite indicator that I have accidentally gotten gluten in my diet? In other words, does DH ever spontaneously relapse on a clean diet? If it only relapses and spreads when there’s gluten in the body, does that mean I haven't been perfect on the diet as I supposed I was, and could probably have a diagnosis through biopsy?   I’ve read that DH can be difficult to diagnose, and other skin issues can look like DH rash. I am still chasing a definitive diagnosis because I’m concerned that if the rash I have isn’t DH, I may be letting a different medical problem go undiagnosed and untreated. Thanks for reading this. I appreciate any thoughts you can offer.
  14. Hello I'm knew here and a very confused mother of a 6 yr old boy who recently was being followed by a Pediatric Rheumatologist due to joint pain and inflammation. He was tested for juvenile Arthritis which all came back negative but during those tests they ran a IgA blood test in his and it came back at 49.5. He was then referred on to a GI doctor at sicks kids hospital  were a biopsy was booked and done. The doctor treating him was on vacation and so another doctor on his team did the procedure and only took 3 samples all which came back negative. Our doctor would of preferred a min of 6 he stated. Our GI specialist was ready to confirm a diagnosis of celiac disease just on the IgA level alone but gave us the option to repeat the blood work, We choose to do that due to us having a very difficult time expecting the diagnosis. We just got the results today of the repeated blood work, this was given to us over the phone by the receptionist in his office. She called to tell us the doctor said my sons levels were with in normal range. But she didn't mention IgA she mentioned that it was a TTG test which was at 2.0 I believe she said. is the same thing as the IgA test? and what would of made the initial IgA test so high at 45.9 which  we were told was much higher then normal and that if it was lab error or a false positive it would of only been by a few points, not as high as my sons was. He stated false positives are not values that are double normal values. The receptionist said we are good and there is no indications of Celiac disease so continue on regular diet. I was so happy at that moment but as the day as went on I now have all these questions. We do go back to see the doctor in 8 mths but not sure I can wait that long to have my questions answered. I would love for all this to be true that he does not have celiac disease but at the same time I keep wondering if not Celiac then why else would the IgA level be so high and why didn't that get retested this time around and only the TTG when we requested the IgA do be re done so we could see if it was a false positive for our own sake as parents before we subjected our son to such a difficult lifestyle change. Any advice would help me please. He has always been on a full regular diet during all the testing and never started a gluten-free diet. His issues are mild which includes occasional constipation and diarrhea, irritability and joint pain and inflammations. 
  15. 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? 
  16. My 6 year old daughter was recently diagnosed with Celiac, (positive blood work and biopsy confirmed).  I suspected Celiac for her because my brother has it.   The whole family was then tested and my blood work came back positive (ttg ,72- even though by that time I was already eating a mostly gluten free diet).     My question is- do I really need a biopsy to confirm diagnosis at this point?  I'm having a difficult time getting in to a GP for a referral to a gastro- I'm anxious to start my gluten free diet.  Though I didn't have many symptoms, I am hopeful and looking forward to improved stomach issues with the gluten-free diet.  It's hard to continue eating gluten while I wait.  Any thoughts on whether the biopsy seems necessary for me would be greatly appreciated    
  17. Hello everyone!! Still on my journey to figure out what's going on with me! I've had a positive gliadin IgG test, negative gliadin IgG, Negative tissue transglutaminase IgG/IgA... Negative biopsy, it showed inflammation and lymphocytes infiltrating the epithilium but no issues with the villi... After I went gluten free for a month and felt great... Reintroduced and all my aches pains and respiratory issues came back I didn't think I had any GI issues but when I reintroduced I realized it made me constipated.... Now I had the genetic testing done and my HLA-DQB1*02 and HLA-DQB1*03:02 were negative but HLA-DQA1*05 is positive. Report says this is rarely observed in individuals with celiac and that it is only mildly supportive of a clinical diagnosis of celiac disease..... I know I should just go gluten free cause it makes me feel better... But I would have really loved a yes you have this or a no you don't
  18. Hi everyone! My name is Becky and we are from Alabama. I just discovered this site, and I believe its a God send. I spend countless amounts of time just browsing about this new adventure in going gluten-free. I have a 10 year daughter that tested positive 2 months ago with high numbers according to the doctor. Her numbers were TTG IgA >100, Gliadin IGA 148.8, Gliadin IGG 112, IGA antibody- positive titer 1:160. She had a biopsy this past Monday and Dr. saw significant damage and we are still waiting biopsy results but pretty much know what it will say. I can't help but feel overwhelmed, sad, and confused. I figured this was a normal reaction. I hope to find friends here, as I've never been a part of a forum before but I feel so lost and alone in what to do. I just wanted to introduce myself, and say how excited I am to be here.
  19. My daughter was recently very sick and then diagnosed with celiac disease by blood tests and endoscopy. The doctor did blood work on my husband and I. My bloodwork was elevated so I proceeded with the biopsy. I am now confused by the results... I do not have any severe GI symptoms. I have always had acid reflux and as a child my stomach always hurt off and on due to the acid. I have fatigue, headaches, and depression...but I guess I attribute those symptoms to being a tired mom. Over the past 6 years I have had a blistering rash that was undiagnosed by 2 dermatologist. Currently, I don't actively have the rash so could not biopsy it. I think I don't have celiacs according to the results. Here they are: tTG AB, IgA = 30. (Normal <4) tTG AB IgG = 2 normal (normal <6) HLA positive for DQ2 Immunoglobulin A (IgA) in range at 177 (normal 81-463) Biopsy: Biopsy showed mild suspicion for wheat allergies Small hiatal hernia & esophagitis from acid reflux. The biopsy results showing wheat allergy really confuses me. What do they see on a biopsy to think I have a wheat allergy?? I guess that means I shouldn't eat wheat but won't kill me to eat it as it does a person with celiac disease. Thanks for any input!
  20. Let me start off by saying thank you to anyone who reads this whole thing...cause it's going to be long.  And if no one reads it, maybe it will help me to type it.  Because right now I'm angry,sad, frustrated and confused!!!        In January, after months of all day diarrhea, headaches, brain fog, pain, I went to see my GP and he had the results of my bloodwork.  He said you've tested positive for H. Pylori and Celiac disease.  I hugged him.  There was an answer to it!  I was so weak and tired (the D was 10-20 times a day) I didn't ask questions.  He said stop eating gluten and I did.  The week before I'd found out that there were polyps all over my gallbladder and that it would need to come out and the week before that there were polyps on my uterus that needed to be removed.     I really didn't know anything about celiac.  I spent 2 weeks detoxing and then had surgery to have my gallbladder removed and my uterine polyps removed.  I recovered from that and then really got into this board and started reading.  I kept seeing things about needing a biopsy...but I didn't have one.  At this point I was more than a month gluten free and was finally feeling better.  I could see improvements in my life and it was such a relief.  I knew I didn't want to ever eat gluten again.   Yesterday I had an appointment with my doctor again and had some questions for him.  Why no biopsy?  A lot of people think you need one to have a diagnosis.  His don't need a biopsy.  I asked about re-running my antibodies to see if my 5 months gluten free was paying off.  He said you don't need to do that.  It won't show anything.  What???  I asked about testing my children.  He said you don't normally need to do that until they are at least teenagers.  What?  I've got one teenager so...He tells me he's going to check the guidelines on testing.  He leaves the room.   During this time I am freaking out!  WTH!!!  Am I allowed to type that?   So...he's gone for a while.  He comes back in and says...well, I'm not sure.  I need to talk to a GI.  Maybe you should have had a biopsy.     I left...devastated.        6 phone rings.  It's my Dr.  He talked to a GI.  He's very sorry.  He learned something today.  He should have had my do a biopsy.  And he learned that there is a link between celiac and thyroid (I've been hypothyroid for 14 years) and some cancers...just like I told him and he dismissed me with a "I've never heard of that."  Now that I've been gluten free for 5 months.  I could eat some gluten for a while and then do the biopsy.  I told him if I get even a tiny bit I will be sick for a week.  Ok, so that's not a good idea.  We can do the gene testing.  But he will need to check to see how much it is before he sends me for that.  Sometimes it's stupid expensive according to him.   I'm not eating gluten to do a biopsy.  I'm so confused.  Do I have this thing or not?  Does it matter to have the biopsy or not?   I'm looking for another Doctor.  I'd like one who focuses on the whole human being...not just a symptom.  Any thoughts on how to find one of those that takes insurance?   Thanks for letting me vent!
  21. ahhh as soon as I think I'm a step closer to knowing what is wrong I get thrown another curve ball! So here is a little bit of info about me.. 27 year old female with Hashimoto's thyroiditis.  I've suddenly developed iron deficiency anemia.  After doing some research and seeing my doctor I learned that a lot of people with Hashimoto's can also have celiac disease so we ordered some celiac blood tests  TTG (IgG/IgA) both came back normal (however total IgA wasn't tested..)  DGP IgA negative, and DGP IgG positive (3.59 IV anything above .90 IV considered positive).  After getting my blood test results back I made an appointment with my GI doctor and had the endoscopy done yesterday..  I also work in the hospital laboratory so I know the pathologists and all so I called today and he said he didn't see any signs of celiac but wants to pass it around to the other pathologists to make sure, he did say I have gastritis tho with no signs of H. pylori...told me to come talk to him tomorrow but now I'm stressed out and confused!! :/  any advice?
  22. I am not convince I have active Celiac Disease. I'll summarize as briefly as possible. Past 5 years I've been gluten-free because I thought I had Celiac (long story). Decided to start over and get thoroughly tested by a new doctor. Here are the deets:   Symptoms: cramping, burning in stomach, gas, distention, random abdominal pains (no diarrhea, no dematitis)  Never had a nutritional deficiency or anemia, whether eating gluten or not No improvement of symptoms on gluten-free diet No relatives diagnosed with Celiac Celiac bloodwork while Gluten-free: all negative, despite ongoing symptoms   5-week gluten challenge: biopsies show Marsh 1 elevated epithelial lymphocytes in small intestine and colon No villous atrophy or structural change. Repeated celiac bloodwork after 2-month gluten challenge: all very negative again, no change whatsoever Diagnosis ==> Celiac Disease    Is there anything else that could have caused the lymphocytes in my colon and small intestines?    The only things that seem to give me relief are a combination of ginger root, probiotics, vigorous cardio exercise, tons of sleep, and avoiding acidic foods, caffeine and FODMAPs. (That's kind of a lot to keep track of.) Most gluten free baked goods actually make me feel really sick!! I feel much better just eating a regular Dunkin Donut, honestly! Gluten-free is not helping me and it's making my life so complicated.   I'm afraid of developing an eating disorder because I have come to view all food as being poisonous because I don't understand what will or won't me sick. Thanks for any help. 
  23. Had positive DGP IGG... 3.59IV positive is GT .90 Biopsy says A. Duodenal mucosal biopsies with no significant microscopic abnormality. No diagnostic histology all features of celiac are appreciated. B. Gastric antral and oxytocin mucosal biopsies showing chronic gastritis. Reactive foveolar hyperplasia is present. H. Pylori is negative The material present is partly tangentially sectioned. The villous crypt ratio is about 3.5. There are intraepithelial lymphocytes but they don't seem to be significantly increased in most of the villi. There are inflammatory cells in the lamina propria including plasma cells and lymphocytes with an occasional germinal center. They are normal to slightly increased in number. No histologically diagnostic features of celiac are appreciated Opinions anyone??? I'm confused see. Lymphocytic gastritis can be associated with celiac plus my positive blood test!! Ahh maybe I'll just give up the gluten and see how I feel  
  24. Hi all, I was wondering if someone can help me in interpreting my EGD biopsy results from 2 weeks ago. My doc just called me yesterday and has asked me to stay away from wheat, milk and related products. Quite honestly, I am a bit shocked.    Feb 2014: Celiac Lab came back as negative in all categories but in my IBD expanded profile showed the ALCA was high with everything else in range.   April 2014: Biopsy reads as follows "Duodenal mucosa including bulb mucosa with brunners glands, showing elongated villous architecture. There is a mild increase in the inter epithelial T Cells (CD3) in duodenal epithelium. Gastric Metaplasia not seen in duodenal epithelium".    What does this mean? Is this a cause for concern? Do i need to go on a gluten free diet? I don't have ongoing symptoms on bloating etc...   Looking forward to your valuable input. 
  25. My wife has been feeling terrible all of 2014: bloating, loose bowels, floating, light coloured stools, general aching, abdominal cramping (especially LLQ), fatigue, loss of libido, feelings of depression and anxiety. Many symptoms started mid 2013, but they have gotten worse this year.   She had a blood test for celiac, and here are the results:   tTg-Iga Ab 5 tTg-IgG Ab 3 DGP-IgA Ab 162 DGP-IgG Ab 3   Result Range indication for tTG and DPG Negative < 20 Weak Positive 20-30 Moderate to Strong Positive >30   Test results: Positive   Feelings towards test results: :,(   My first question is: Could anything other than Celiac produce these results? How positive is the test (90%, 99%, 99.9%)?   She will have a GI appointment where they will do a biopsy in a month or so (date not confirmed yet). So far this week, she has been off gluten and it seems already she has noticed improvement. The GI's office wants her to keep eating gluten until the appointment (the receptionist said that it might be an allergy and not Celiac). What are your thoughts? Can she just start eating gluten again a week before the appointment if need be, or does she have to feel terrible for another month?   I'm sure she'll create her own account here soon, but I had a bit of time, so I thought I'd ask on her behalf. Thanks community.