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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Thanks everyone , it's means a lot to me to have some support.
I went to a new GP and got some bloods for thyroid, iron and vitamin levels and she's sent me for a bone scan next week (she got it for me on medicare without the confirmed diagnosis so I'm happy about that) even though she didn't come up with much she did take the time to explain the diagnostic process and was sympathetic so I don't think I'll go back to my old doc. If the tests come back within the normal range (they are ususally on the low side) I'll be getting a copy and going to see a natropath to follow up on the thyroid test which I'm sure has something to do with it. I started taking an iron suppliment after I had the tests as well so hopefully that should help in the meantime. I'm looking for a new job as well.
I don't have him anymore, I had considered the dust and had my allergies tested for it. He was on a pellet diet not seed so there was no wheat (although it did have barley and oats in it). The symptoms I have ATM are different to when I get glutened.
My kidneys should be OK, I get them looked at regularly, had the scans, x-rays, bloods etc (I have a genetic kidney defect that causes me to get a lot of stones) I have a bit of scaring on one but they're functioning fine, my GM died of kidney failure and mum is diabetic so they were the first things my family looked at when I got sick. Osteoperosis is on the to check out list as well.
I do hold fluid but it's been better since the change of diet, most of the weight is fat though and I know I'm not getting enough nutrients from the food either because a lot of it's going through undigested again. It did this last time, I started off losing a lot of weight quickly then as soon as I started to put it on I couldn't stop putting it on. It's one extreme or the other.
I live in an aparment near the city so ticks aren't really a problem. It's been a long time since I was last in an area prone to ticks. I think it's more likely thyroid or a malabsorption problem, what's going in is not matching how I feel or what I'm seeing in the mirror.
Good luck with your tests, I hope they get it sorted out soon.
I think it could be my thyroid, mum just told me tonight her and my GM have thyroid disease, I've had tests previously and as usual the doc is an idiot, they do things like order tests then when they come back they don't know what they mean, so they call the lab and don't want to admit they don't know what the lab is talking about. I spent 4 hrs up the hospital this afternoon, the nurse was rude and I still didn't get to see a doc. I'm thinking of going to see a natropath or Chinese herbalist, these GPs out here don't have a clue.
I don't know if we have the tests you mentioned out here (Australia) some of the sites I found for the products you mentioned only sell to the US and Canada but I'll keep looking, it's better if I can get it on script because it's a lot cheaper. This started about a month ago and I can't believe how quickly I've deteriorated. Is there anything I can use to hold me over till I get it sorted?
Thanks flourgirl, it's really frustrating I'm just so fed up.
I've been on the diet in its strickest sense a little over a year. I cut out the obvious gluten before the allergy clinic to see if it did anything and saw a big improvement, I was so sick I couldn't wait any longer. I asked the doc to send me there after a psychologist insisted, I've been doing the mental vs physical dr to dr tennis match for years ("it's all in your head" says the GP and sends me to a psych, "go back and tell the GP to do his job" and psych sends me back to the GP). The clinic should have tested me straight up, they must have known I would have still been eating some gluten via sauces, processed food etc. They cut everything out of my diet and kept it lean till my symptoms dissapeared so by the time I got to the wheat challenge I was so senitive I barely lasted 3 days. They've said I have a wheat intollerance possibly coeliac, symptoms fit the profile and blood test was positive, only took 18 years to get that far.
Apart from the occassional accidental glutening. I don't have it in my diet at all, I cook and stick to the resturaunts and dishes I know I can trust. I've finished the elimination diet so I know what other things give me trouble (dairy, amines, preservatives) seen the dietitian, taking supliments, got the diet balanced so I should be getting progressively better. I did need the diagnosis for gov subsidised bone density testing and so my darn GP will take me seriously. I'm also having problems with social security who won't pay benifits unless you're practically bleeding to death on their carpet.
Biggest concern at the moment is I just seem to have frozen, it's like I can't move, freezing cold, takes a few hours to wake up and get out of bed, I'm not in pain anymore which is great but now I'm exhausted, overwhelming fatigue, it feels like being in shock after an accident. About the only thing keeping me going is my kids have been sick as well so I want to get to the bottom of it for their sake otherwise I would have stopped fighting years ago.
I'm about at the end of my rope, doc is hopless, all the docs here are hopeless, allergy clinic didn't do coeliac test pre elimination diet so now they want me to do a gluten challenge to tell me what i already know and am already doing, how did these idots get a licence. Youngest son just got back bloods, he has anemia, waiting for his coeliac test to come back, eldest no one can't pin down long enough to get blood from.
gluten-free my stomach has settled, fewer itchy rashes, not in excrutiating pain anymore just can't get out of bed, sleep more and more, piling on weight but not eating much, can't work, boss fed up with sick days, I'm about to lose my job, big financial burdens right now. Taking lots of stimulants to try and stay awake, not working. Fed up with the whole thing, 1/2 my life has been wasted in drs offices, no one listening again, how long do I have to put up with this? Just want to go to bed and not wake up.
GENOTYPE SUSCEPTABLE FOR COELIAC DISEASE DETECTED.
Heterozygous for the DRB1*03-DQA1*05-DQB1*02 haplotype, which is consitent with the DQ2 phenotype.
Does anyone know what this means?
I'm going to see the allergy dietition in a few weeks, she said she won't subject me to a gluten challenge for biopsy etc (finally someone who's making some sense) she's seen the effect eating gluten has on someone who shouldn't eat it (she's part of the allergy clinic in one of the largest hospitals in the country). She's going to draw up a diet for me on the presumtion I have coeliac (since I'm already living that way anyhow) and the doc is prepared to put that diagnosis on my medical history. I just have dairy and amines tollerance testing and food diary to be sure I'm getting enough nutrition, only another 3-6 months to go. Ah finally getting somewhere :s.
I had bloods done and when the results came back I was negative for the antibody test but positive for the gene test. My GP doesn't know what this means and told me he'd have to get back to me on it. I've been gluten free for some time and the allergy doc told me the antibody test gives a false negative if I'm not eating gluten.
Also my imediate family has had intestinal symptoms for some time so I'm worried they might have it, I've told them to go have testing since they are still eating gluten.
About 18 years ago was when I had the worst of my symptoms (just after I had my eldest son, yes it's been going on this long and a stack of misdiagnosis in the mean time where the treatment made me worse eg: "irritable bowel, eat more high fibre cerials") I don't ever want to get that sick again. I don't know if I posted on it before but I lost 4 stone in 6 weeks and ended up eating high calorie foods just to keep some weight on, I was up the hospital on average twice a week in agony, all the stomach problems described, I couldn't even drink water without my stomach cramping. They took my blood pressure and it was dangerously low, the nurse couldn't find my pulse, guess what happened, the idiot doctor came down and called it anorexia, he then threatened to put me in the psych ward accusing me of starving myself! At another hospital the nurses thought me being glued to the bathroom was funny. You know they didn't even put in a drip to rehydrate me. This went on for 2 years. Meanwhile I got so small I was flat out finding clothes to fit and had to buy stuff from the childrens section. I went home and started making out my will. You know how I finally stopped most of it? I started alternating fasts a few days with eating a few days to give my system a rest, started a food diary cutting out anything I reacted to and just about bought out the local chemists supply of imodium. I have no idea just how much damage all this has done to my body. So am I going to eat gluten for 3 months to satisfy a bunch of medicos who can't get anything right? are they going to treat me if I get that sick again? I don't think so.
Anyway no doubt this has done some damage, so what damage is it likely to have done? Is there a pattern of related problems that can be tested that are unique to celiac? (eg bone density, anemia, bowel, brain etc) If they can't test for celiac directly can they test for its long to medium term effects? After all this I really should be getting tested for that stuff anyway.
Well I finally got to the allergy clinic after several doctors refusing to send me and wanting to blame it on anything from depression to irritable bowel to chronic fatigue (I thought they were meant to eliminate all the other potential physical causes first ) One sent me for bloods some of which came back positive and then told me she didn't know what they meant
When I got to the clinic the doc there didn't do any allegy testing and put me straight on the elimination diet instead which comes a close second in the running for a perfect hell. Now after about a month of feeling great I'm exhausted and irritable due to the poor nutrition of the diet, the challenge reactions, getting more so and far more sensitive on top of it. I've had a few nasty reactions with the challenges so far (not suprisingly wheat but dairy and amines I've had some reaction to as well) I've still got a stack left to do and the sulfites is a real worry, the last time I had something with 220 in it I was violently ill, they want me to do the tests at home, no way am I going to do that, I don't want to end up in the emergency room again.
Anyhow, I want to go get a complete allergy scratch/bloods and celiac screening. They've already told me I'd have to eat gluten to be tested for celiac (which will last about 3 days before I'm ready to leap off the gap) are there any tests that don't require I eat gluten for any more than a day or two? I get nailed by just a small amount and by day 3 it's about as bad as that part of it gets, I wouldn't risk longer than that, I don't want to get back to the stage where I can't even drink water without being in pain. Will a scratch test be enough? What's the difference between gluten allergy and celiac?
Well I got about half of it sort just going gluten free, then I felt fine and thought I could start eating it again and you guessed it I got sick. After speaking to a doc familiar with food intollerance/allergy I was sent off to the allergy clinic where they've put me on the elimination diet. I've been on it for the last few months and they have given me vitamins as well. I started improving within the first week.
The first thing they asked me was if I'd had the blood test, I had but it came back negative, then they asked if I was eating gluten when I had it (I wasn't but the doc had told me it didn't matter). I told them I wasn't going to eat gluten just so I could get poked and proded some more so I still don't know if it's celiac or an intollerance, I don't know if it even matters since the treatments the same?
Turns out I had to do their wheat test anyway, it was meant to be 1 week, I lasted 3 days and barely. Then they gave me the milk, I got through the week but not comfortably. Amine I lasted 5 out of the 7 days and I wound up with the flu on top of it (and it's summer over here!) So far the other tests have been negative, I've got up to another 1/2 dozen tests left to do (food colouring, preservatives etc). Anyhow finally getting some answers from the docs, I can't wait till it's done though.
Whew, I'd been looking for an alternative to sandwiches so I thought I'd try sushi rolls but with meat and veg instead of the raw fish, I got the gluten free soy sauce (doesn't taste very nice) I just wanted to be sure the rest of the ingredients were ok.