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
Hi there, I'm writing this, not as any kind of advice to you - it's a really really tough situation - but to add to the general discussion about celiac and changing friendships.
I also went through the process in which some of my friends who didn't have the patience for me when I was sick drifted away. Especially a I used to like going out and partying, when I could no longer drink or stay up late because I was too sick, they didn't make the effort to see me and do different things. However, there were a few wonderful people who stuck around, and I made some new friends.
Now something new is happening - since I decided to be SUPER-strict with my diet (after a very long process of investigating and learning what was going on with my body, which involved other health problems too) and I am feeling much much better, stronger, clearer, calmer, and my life is much more "together", my friendships are shifting again. For years I was very tired, irritable, easily upset, co-dependant, and I was naturally drawn to similar people. In the past, if a friend was mean I would have stuck around as I needed them. Now that I'm much better I don't want to take anyone's s***! As I am less easily upset and less clingy, mean and aggressive people are just falling out of my life. It's kind of sad to see old friends go, but it's happening naturally and I'm not shaken up as I would have been before. I find myself getting closer to more together and calmer people, who in the past were on the periphery of my life.
The only thing I can say is keep on looking after yourself 100%, don't compromise on this just because the people around you don't understand, and I'm totally sure things will get better socially in time, even if it means building new friendships. And it's awesome that your man is such a gem.
I have been gluten free for 4 years although I still fell pretty unwell (nothing compared to before though). I was told by the doctor that after all ths time but with periodic glutenings I am almost certain to have elevated IELs and that this along with my case history would be sufficient for a diagnosis.
I felt, like you did, that something like gluten wasn't going to affect what I did and where. But really, I'm busting my a** trying to be 100% gluten free, and I manage it 99 times out of 100, but the hundredth time where I get glutened, I get really sick, and I'm bouncing back more slowly every time and I'm scared. And food being so omnipresent, the 100th time comes around pretty quickly. The thing is, as butterfl8 pointed out, its all about making choices. And my choice seems to be between being here, the only person I know with a problem with gluten, no awareness at all (except for those I've eduated ) , not eating anything I haven't prepared myself from scratch (but even nuts, packets of lentils, ground coffee etc cross contaminated), not eating out at all. Right now I'm exhausted, and I still get glutened fairly frequently, it literally isn't working out right now. There's the physically getting ill and being knocked out for a few days or a week, and then there's the emotional part of feeling unsupported by the country in general- no labelling laws, no advocacy groups, no services. I couldn't find a single celiac in the whole country to share info with! I think I'm an individual who does need more support than than that.
From what I can see, at least in Spain they label food properly, there are very active groups of celiacs, directories of restaurants you can eat in safely, and specialist gluten free foods. After turning it over every which way I think I may have made the choice that it would be worth making the move to feel more supported and for my life to just be easier and frankly safer, and also that being mobile, somewhat spontaneous with eating, and travelling around on weekends are actually really important to me. I know a lot of people don't have these kind of options, but right now I do- I'm single, no kids, as a teacher I can pick up work pretty easily. If I can make it work, the whole of the rest of my life might be healthier. And if I don't like it there I guess I can come back here and somehow make it work!
It may be that I find that I still get glutened constantly in Spain, and like for many people, preparing everything from raw ingredients and only eating at home becomes the only option, time will tell. But I think maybe now is the time to try it, and I'd also have regrets if I didn't give it a go. This thread has been really helpful for me in terms of consolidating my thoughts, I've come to terms with the idea and my choices and reasoning a lot more in the last few weeks, and I feel better.
Oh, MEH, I'm truely sorry to hear that. I can sympathise as I live in Colombia and I'm currently planning my departure because of the difficulties with avoiding gluten here- I moved here before I was aware of the gravity of my problem with gluten. The teaching per se has been fine gluten-free, but the location hasn't.
I wish you all the best with finding a job that lets you look after your health.
Before I knew what was wrong with me I worked as a lifeguard, because the water helped with my depression and panic attacks and because most of the time noone bothered me, which suited me when I felt like crap, and because I was replaceable on the days when I was too sick to go to work, so I could stay in bed guilt-free. I couldn't handle anything with more pressure or more responsibility.
Now I'm a billion times better and I'm a teacher. Most of the time it is totally fantastic, and being gluten-free doesn't affect my work. After a glutening it's hellish for a few days being up in front of a group of people with all eyes on me, but it passes after a few days, and at least there are gaps in between lessons to try and pull myself together. I normally come out and tell my students about coeliac disease (as part of their wider education!) and they are generally fascinated, and end up sharing things about themselves.
Yes, I lose control of my emotions. I just can't cope with things that would normally be only mildly irritating. If I have consumed gluten then I wake up crying in the morning, I cry on the bus, I cry in the bathroom at work, I cry if someone pushes in front of me in a line, if a student doesn't pay attention..... Friends have found me wandering the streets weeping and taken me home. Even though I know exactly why its happening, I still can't control it. But the people close to me are used to it, and they and I know not to take me seriously when I'm like that, it wears off in a day or two!
Can anyone recommend a helpful doctor in the UK? Someone who is an expert on coeliac disease and all its rammifications. If they were up-to-date about the links between coeliac disease and mental health problems that would be even better. I wouldn't have a problem with paying to see someone who was really good privately.
I am undiagnosed and my body is getting more and more sensitive as time goes by, its turned into a gigantic problem. I really need to speak to a sympathetic doctor and get some advice on this and other health concerns which I believe are interconnected, but without being pressurized into doing a gluten challenge, which I believe would be impossible for me- this is why I need to speak to someone who would take mental health implications seriously.
I'm very interested in your success with the Paleo Diet. As I said, I've also had a big problem with candida. I had years of cystitis and bladder problems until I was recommended to try an anti-candida diet. I found that no sugar, alcohol, refined carbs or fruit was enough to heal my bladder, and I do wonder if going totally paleo would be even better for my health in general. But I have tried it and I just couldn't cope with the hunger. I had to eat such large amounts of meat and consume so much oil to fel satiated (and even then I didn't, all I could think about was food), it wasn't good. I was weak and very hungry, and I didn't like eating such huge amounts of meat so often. But I was inspired by you saying that you felt bad for a few days but then much better. My question is, what exactly do you eat and how do you avoid too much repetition? Do you find that you have to eat very large amounts of meat to ward off hunger? Have you cut out lentils and beans too?
Dr. O'Bryan will give you a good old pep talk too- check out the audio programs in which he spells out exactly why a little bit of gluten is so harmful, even though you may not feel anything. The info is great in general, enjoy!
Thanks for your kind words Foogirlsmom. So are you generally Paleo now then? I'd be really interested to know what brand of shake you buy.
I've been "off the map" for the last week after another glutening- switched off phone, unplugged computer, just tried to wait it out, I can't trust myself not to do or say stupid things when I'm like that.
Super-interesting replies everyone. It is very interesting for me to hear about experiences and ideas, thank you!
Butterfl8, you're right. And I suppose the biggest blessing is knowing what was wrong with me and having the information to make the choice. Things were a hundred times more difficult before I knew what was going on with my body, even though I ate whatever I fancied. At that time I didn't have any idea how to make myself feel better. However, as I process the seriousness of my situation, I am swinging between anger (at the doctors I trusted with my health who let me deteriorate for years- if I hadn't done so much research and investigation myself I dread to think how ill I'd be now. But I'm furious about all the 'lost years'), joy that I found out what was happening in the end, I do truely feel blessed, and freaking out about making a fresh start. The whole topic has me on an emotional rollercoaster. I'm trying to see things from lots of different angles. Overall, I love my life and I'm going to work to make it great. But the getting-there part is scary nonetheless, mainly leaving what I have and going into the unknown.
Roda, I'm fascinated by the vitamin D connection and I'm going to follow it up. If that was the missing link, then who knows, maybe I could even survive in my homeland one day
Gabby, I'm very glad Croatia is working out better for you than Canada. Thank goodness you found it!
I'll ask Mum to post me the Gluten-Free Bible- millifiori1000
Eatmeat4good, thanks. I'll be ok in a new place with time, I know, though things aren't easy on any path. I'm with you on the meat and veg diet, for my other health concerns (candida and hypoglycaemia) I'm discovering that its what suits me best anyway. But I seriously need some inspiration with snacks.....
Its not a question of not being bothered to cook my own food- that's what I do 7 days a week, its not the end of the world. BUT sometimes I go away for more than one night (well, I haven't for a while, but I sure hope I will again), and sometimes, or often, something comes up that interferes with my planned routine and I get hungry whilst I'm out and about (also hypoglycaemic so got to keep a lid on this). Snacks are a real problem, mainly because I can't eat fruit (I suffered from irritable bladder and recurrent cystitis for a few years until I found out it was candida all along, thank goodness, but no fruit for me). Been glutened consistently from nuts. Its the not trusting anything at all out of a packet due to relaxed labelling laws, plus the Colombian habit of making up an answer if you don't know the answer, rather than admitting to not being sure ("of course this is made from pure corn and no wheat flour") thats doing me in. Anyway, as you are all pointing out, this is a hell of a disease and eating per se is pretty blooming compicated wherever, so I am aware that Spain wouldn't be some kind of panacea. I'm just desperately seeking a way for this glutening not to occur quite so regularly and more access to more varied food, I'm getting thin!