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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About Honey015

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  1. Hi! I went gluten free for one month out of curiosity because I have so many symptoms that fit celiac (at least 20). I saw my doctor who ordered the anti endomysial (anti tissue transglutaminase) test, a week later, giving me just a week to eat gluten again. I didn't feel like my symptoms were as bad as I was expecting during the week back on gluten, considering I had had some pretty quick reactions to it when glutened by mistake while gluten-free. My test came back negative, and my doctor has dismissed celiac. Anyway, it's been about five weeks back on gluten now, out of my stubborness to accept the negative result, and I have continued it because I have bought a home test and wanted a better result. Over this last week, my original symptoms are back with a vengeance. The grumbling, bubbling stomach all the time, discomfort and nausea for hours after eating, daily diarrhoea which is yellowy cloloured and floats (nice), and my horrendously itchy elbow rashes are flaring. I hope this is helpful. Good luck to you.
  2. Yes, they are like lumps with a fluid filled centre. Almost like a volcano I suppose, that's the best way I can describe them! They are not what you would call an actual blister, like from a burn or a rub. More pimple like. And the area surrounding them gets raised and red, probably from the scratching. They cleared up on my hand probably four weeks ago, but there is still discolouration there, like scarring, and the skin is drier than before. My doctor (who thinks it's pustulating psorriasis!) advised to put steroid cream on it. My stomach is pretty bad at the moment and one of my elbows has started to flare up, so I might try and get a photo of that if it gets bad enough!
  3. Well, here is my attempt to upload the photo of my hand, and possible DH rash! Hope it works. Please let me know what you think. http://s1267.photobucket.com/albums/jj543/honey015/
  4. Can anyone tell me please how to upload a photo here? Thanks!
  5. Hi, i am new here too, and so pleased i have found all these lovely people! People have already been helping me, so i am going to spread the love and try and help you! I have not been diagnosed by a doctor, and have had a negative blood result, but i think he is wrong, quite frankly!!! My result was for an anti endomysial test, following just one week of eating gluten, after a month of being gluten free, and the result literally just said "neg", no numbers or anything, so I don't know what the specific result was. This could be quite a long list of symptoms (and apologies if there is 'too much information'!).......diarrhoea for weeks at a time, daily. Same colour, same smell (bad!), greasy (slides down the sides of the toilet, and leaves 'trails' even under the water after flushing. Sorry!). Horrific gas. Painful trapped wind. Constant bubbling, gurgling, groaning stomach. Nausea after eating that can last for hours. Feeling full and uncomfortable (like you describe) after eating, that can last for hours. Insanely itchy, blistery, bumpy rashes on backs of hands and elbows. Anxiety. Panic attacks. Skin pigmentation changes on forehead and cheek. Bloating. Raised MCV levels (my blood cells are enlarged. Can be caused by vitamin B12 deficiency, which can be caused by celiac). Tired all the time, even after nine hours solid sleep. Lack of concentration. Hives. And I'm sure there are a few other things that I can't keep track of without my list!!! So many things here that i had no idea could be linked to celiac disease, and i have had many open-mouthed, "oh my god" moments while researching and linked something. Pretty much ALL of these things went away on a gluten free diet, especially the digestive things, the anxiety things and I had loads more energy. And yet my doctor says I am not celiac, because I am not anaemic and have not lost any weight. Mmm hmmm. I really don't see how that delightful list could be anything else, but he won't put me off that easily! I have also felt scared to eat anything. When I was gluten free, I felt sooo much better, I was scared to eat in case I got 'glutened' by mistake. It can be hard to get used to deciphering labels and things, and I've eaten things i thought would be safe, had a reaction, then googled whether they have gluten in, and they have. I hope things work out for you in what seems for most of us, to be a drawn out, frustrating process. Good luck, and I'd love to know how your biopsy and endoscopy go (in case I have to have one!). Hope you feel better soon.
  6. No replies are too late, it's lovely to get them! I have read about msg aswell, but not sure if it contains gluten, or is a separate allergen. Also, I think there are certain things in America that are gluten free, that aren't in England, which is a pain when trying to find out what's safe and what's not! (I think my reaction was also because of batter, and noodles!).
  7. I've just remembered aswell, that when my elbows first started coming up, well before I had ever considered it may be linked to the GI issues, I had seen a different doctor, and mentioned it, telling him I thought it could be something called dermatitis herpetiformis, because of the images and description that had matched it on the Internet. I don't remember what he thought, as it wasn't the reason I was there, but he obviously never linked it to my GI things such as the constant upset stomachs. Just funny that before I knew what DH or celiac was, I had already self diagnosed it as a possibility, without any clue about the implications. I'm beginning to think that maybe I have worked this out quite early (luckily) into this 'journey', before the damage is too severe, and that could be why I'm not anaemic etc. I find it infuriating that there is so little interest from professionals, considering the long term effects and damage that is done. It's dangerous. Doctors (and I think probably what we call GP's in England, family doctor in US?), should do everything to rule celiac OUT, not try to convince you it's anything BUT.
  8. Thank you so much to you all for replying! It's nice to know there is such a vast 'database' of knowledge and experience out there to turn to. When I see my doctor, with a list of things to ask, I end up giving up and not bothering, feeling like it would be dismissed, so thank you all for giving me somewhere else to turn. With regard to my rashes, it first started on my elbows, and would come up on both, with one side usually being worse. It starts with one or two itchy bumps, that then spread until the skin becomes red and slightly raised in the general area, with these fluid filled bumps all over it. Then after a week or two, the bumps dry put, and the skin flakes off, like a psorriasis. The hand rash started when I wasn't eating gluten, but, I have to admit, cheated and had a Chinese meal with my parents. Within half an hour, I was on the toilet, and then two days later, these bumps started appearing over the back of my right hand, sort of around the base of the thumb, spreading over the back of the hand, with a few small ones dotted up the backs of my fingers, and a small patch of blisters on the outside edge of my hand also. Oh my goodness, the itching. My husband has woken me in the night because I've been scratching in my sleep. The hand rash does not flake upon drying out, like the elbows though.. I have a pretty good photo of when the hand is bad which I'll try and upload at some point. I have had a few spots in the same place on the other hand, but not as bad as the right. What was interesting, was when I was gluten free, all the GI symptoms cleared up, and i almost felt empty, as it was so unusual for me not to have the constant bubbling, gurgling and gas! Even my anxiety things went. If I got glutened by mistake, then I would have a 'bowel reaction' within a few hours, if that, but when I deliberately started eating gluten again for the week prior to my blood test, it wasn't as bad as I was expecting/dreading! Now, after four/five weeks, I feel like the symptoms have returned, as they were before. This tempts me to get the home test, as I feel like it would get a better reading. Interesting about the dairy link too, which could explain those times when you think you have been really careful, but still get an upset stomach etc. I drink a lot of tea and coffee, and therefore, milk. I am going to continue with gluten until I get my next bloods done, and possibly the home test, and I might try and see a different doctor beforehand, to try and ask for an extra celiac test, as I only had the anti-endomysial/ant tissue transglutaminase last time. Should I ask for the anti gliadin? My result came back as just negative, with no number for me to look up. All your support and advice is greatly appreciated. Thank you.
  9. I am really hoping to find some answers here. Currently feeling confused, annoyed, disappointed with my doctor (seems to be common!), and unsure what to do next. I have had digestion issues for years (i am 31), mostly diarrhoea, gas, bloating etc. Over the last two years (but especially the last ten months) my symptoms have increased to where I have had bouts of unexplained diarrhoea for weeks at a time, gas that is so horrendous it makes me feel sick (!) along with painful trapped wind, hives on my face and neck, nausea after eating, rashes on both elbows and the backs of my hands that are maddeningly itchy, constant tiredness, pigment changes on my forehead, anxiety (i had to leave my nursing course because of panic attacks that came from nowhere), palpitations, dizziness, a previous diagnosis of IBS and now, macrocytosis (enlargement of red blood cells). This Christmas, after three weeks of constant diarrhoea, and when I was beginning to think that something was seriously wrong, I happened to read an article about celiac disease. It was like a lightening bolt. It was me! So, I decided to cut out gluten to see what happened. Well, after a couple of days, the constant gurgling, bubbling of my stomach had stopped, the gas went, the diarrhoea had stopped, my "nervy tummy" feelings stopped, I felt more energetic, and better than I had for a long time. I decided to see my doctor (one I respect and like a lot), to see about getting tested. Of course, I went in telling him I was pretty sure I knew what was wrong! He agreed with my symptoms, but said that celiac was unlikely due to me not being anaemic and not having lost any weight (I am 5"2', 121lb / 8st 9lb). I had to eat gluten again for a week before my blood test (after a month of gluten free), I don't know if this is long enough, but my test (anti tissue transglutaminase) came back negative. I was so disappointed! I really thought this would be the answer, but also know there can be false negatives and was not deterred! I went back to my doctor for a "what now" discussion, to which he said my ferritin was normal (54 ug/L) and the celiac test was negative, therefore I do not have celiac, maybe IBS. I asked him to diagnose my rash, which he says is pustulating psorriasis. I have looked this up, and it is nothing like what I have, at all! I feel like he has decided I am not celiac, so he will not 'fuel my fire' by telling me anything thT fits. I do, however, have to have a repeat blood test as my MCV is 101.1, from a range of 80-98, so he wants to check my B12 and folate levels. No rush, he tells me, it doesn't really mean anything. Except that it COULD be caused by celiac, after I looked it up! I don't see how he can be so closed minded, when I have SO many symptoms that fit. I requested the blood results from this time, and from almost a year ago, and saw that my MCV back then was 97.2, which I think would be right, considering my B12 levels could have been diminishing for the last couple of years, consistent with my increasing symptoms. I should add that my mother and sister also have bowel issues. My mum and I have always said, "I don't eat breakfasst, it gives me stomach cramps", but now I wonder if it is because of WHAT we were eating! I apologise for the reaallllyy long post, but I'm not sure what to do now, as I feel like my doctor is a dead end. I was going to get a home celiac test, and see how that goes, as I have been eating gluten again for about four weeks now. I was hoping for some suggestions or opinions from any of you. I would like a concrete diagnosis, partly for social reasons, partly psychological reasons, and also because I have three young children who may be affected if I have celiac. Thank you, in advance for any help offered.