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.
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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
Where can I buy gluten-free stuff?
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Thank you rosetapper23 and kittty for your replies
I'm really sorry that you've both had foot and ankle problems, I know from experience how rubbish it can be. kittty, I was also told that it was too late to do anything to help. I found it really hard to hear! I had only found out three days before that the leg was broken and having never broken anything before, I assumed it was a big deal and that they would definitely do something! However, the explanation I was given made sense - the leg isn't tender to touch at the site of the break, and the MRI showed it was aligned, so I guess it probably is okay to leave it.
Hmmm, I shall do some googling around manganese/silicon/zinc, I don't know much about those particular deficiencies but very interesting!
So, at the end of May this year I twisted my ankle. I was running, and I turned around to go home and I felt a sudden pain on the side of my ankle. When I went to the local minor injuries unit, I was told I had a sprain, given crutches and told to see my GP in a few weeks if things didn't improve.
Fast forward three and a half months - I have just come back from seeing my orthopaedic surgeon who has put me on a waiting list for surgery on some of my torn ankle ligaments. However, the MRI I had on Monday showed something else - a badass fracture to my fibula that has yet to heal nearly four months after the injury. Not just a hairline fracture - the break goes all the way through the bone, and you can feel the callus through the skin.
So my question is this - could the fact that I have coeliac disease have contributed to my ability to break my ankle with essentially no trauma? I am only 20 years old, and am slightly concerned that this could be related to low bone density.
Has anybody else ever had an experience like this?
Thanks so much in advance for the help x
I know, tell me about it, I had my blood tests run three times before I got my biopsy! (Only got two sets of results though). I was moving at the time as well - I go to uni in London and live down in Dorset in the holidays, so they were originally gonna make me wait from the beginning of June until the beginning of October to get a referral! Then the actual biopsy would have been maybe November? I had to register temporarily with a different GP and literally cry and beg to get the biopsy done in August. Honestly, bloody NHS, but that's the price you pay for free healthcare. Wouldn't swap it for the world. Man, I really hope everything gets sorted out for you asap, and that you don't exsanguinate before you get your diagnosis ;D
Wow, you get seen quickly in the US! I had to wait two months from blood test diagnosis to biopsy, and it would have been four if I hadn't made a fuss. And this was after I waited six weeks for my blood test results because they lost them the first time
RaeRae, I know how horrible it is to have to keep eating gluten. It feels like you're poisoning yourself, and you basically are. But just keep reminding yourself that this is all just temporary, your biopsy will be done before you know it and you'll be able to start healing. Keep in mind that a lot of doctors recommend a minimum intake of gluten to ensure a positive biopsy - I was told this was quite high, like four pieces of bread a day. Again, it sucks big time, but it's only a few weeks of suffering compared to the rest of your life feeling better.
Hang in there. Best of luck with the biopsy, do let us know how it goes. Don't forget to ask for sedation (or hell, general anaesthetic), I made that mistake and sincerely regret it.
Wow, thank you all so much for your responses! Some very interesting points and ideas, thank you thank you thank you IrishHeart, I feel so dumb right now, clearly I know nothing whatsoever about cooking. I just assumed that any white sauce had to be made with flour. The good news is that I had my repeat blood tests done two days after the wedding, so with a bit of luck when I see my gastroenterologist on Wednesday he should be able to confirm whether I was actually glutened or not.
Everyone's comments about extra intolerances are very interesting. Since my diagnosis I've been on soy milk but eating normal yogurt and occasional hard cheese (both of which I think have fairly low lactose), which I did find okay. I seemed to get some symptoms from trying to reintroduce regular milk, but it could have been that they were from glutening... It's so hard to keep track! Annegirl, your comment about keeping a food diary is a very good idea. It's too hard to try to figure everything out in retrospect!
lucky28, I really hope you feel better soon *hugs* It's all so frustrating, isn't it?
rosetapper23, thank you so much for your reply. I never considered the possibility of a soy intolerance or problems with other grains. I am definitely going to mention it to my gastro on Wednesday. I don't suppose you know whether there are any specific tests that can be done to confirm/rule out additional sensitivities? Or is it just a case of trial and error to find which diet makes you feel best? I'm so fascinated by the crossover between coeliac and neurology, but I also figured that coeliacs with neurological problems also had a B12 deficiency. The geek in me is really looking forward to finding out more about this!
Thanks again so much to all of you. I didn't realise what a big difference it would make to talk to other people in the same situation. Happy new year, everyone
So I've checked out this forum a few times since I was officially diagnosed with c(o)eliac in September of this year, but I've never posted anything before. I'm a bit nervous of getting shouted at, if I'm doing anything wrong/posting in the wrong place etc. please just let me know. My life story follows, feel free to skip over it (quite dull). I'm 19 years old and really pretty lucky in the grand scheme of things - I wasn't misdiagnosed for years, I never suffered horribly. I've had iron-deficiency anaemia, like, forever, but I'm also vegetarian and female, so that kinda figured anyway. I've also had GI symptoms for a little while (alternating constipation and diarrhoea, bloating, I'm sure I don't need to spell out the details to you guys) but I chalked them up to me having a crappy but basically disease-free body. I never went to see a doctor because I was afraid of being diagnosed with IBS, which at the time I thought was like being given a life sentence with no real treatments available.
Anyway, two things kind of happened at once. First, I was turned away from donating blood for the second year running in March, even though I'd been taking iron supplements for weeks in preparation, with a haemoglobin of 9 or 10, I don't remember exactly. Anyway, I'm a medical student and I'd just finished anaemias a few months before, and knew that the average haemoglobin value was 15, less than 13.5 usually being considered Not Great. Figured that was a little hinky given the supplements. Second, we were studying coeliac disease in school and one day I had a moment of clarity. Like, oh, maybe that's it. Went to the GP, blood tests taken, FINALLY got the results back and they were positive. Was booked in for a biopsy, went away to Ghana (long story), felt absolutely terrible for five weeks and cried several times a day, came home, had biopsy, went gluten free, felt better. Phew.
In September I moved in with three friends, all of whom are also medical students. I educated them a bit about what having coeliac meant - you know, all the little details like cross-contamination and why I needed my own toaster. I had three fabulous months, the odd panic attack (not that unusual for me, I'm pretty highly strung), a fainting spell or two (the kind of thing that gets you thoroughly laughed at, especially when it happens in the dissection room). I think I might have been slightly glutened once, but I only had minor symptoms and I was over it within two weeks max.
THIS IS THE QUESTION PART: Precisely 15 days ago I went to my best friend's sister's wedding, which she (bf's sister) catered. Yeah, the whole thing. She's absolutely mental. Anyway, their gran has coeliac too, so they told me they could make me gluten-free food and it would all be fine. I was apprehensive but agreed. Big mistake, obviously. I ate like a tablespoon of Daphenoise potatoes, which in retrospect OBVIOUSLY have to be made with flour. The next day, my gut felt fine (surprisingly) but I cried like the world was ending all day. It felt so horrible, this feeling of impending doom, everything felt wrong but I couldn't figure out why. The next day things were a little better, but my gut hasn't been right since. I also tried reintroducing lactose about a week ago, and I thought that might have been what caused the GI problems so I went back to soy, but things still aren't right. Bloating - so much bloating, stomach pain as well, and it really distresses me for some reason. I know there are way worse symptoms you could have but I've just been so upset about all this. Maybe it's because I had a taste of what it was like to feel better and now it's gone again?
Anyway, when you guys get glutened, does it take that long to go away? Could I still be doing something wrong now? I'm at home for Christmas and my mum is so so careful, we check everything and she doesn't even eat gluten herself when I'm here (she's not even coeliac, she just doesn't want to risk cc).
Wow. I could definitely have put that more succinctly. I'm so, so, sorry x