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. Along with having coeliac, I have only just been diagnosed with legionnaires disease. I've had it for probably two months, and only now have the diagnosis. Although not requiring hospital treatment, I feel rather lousy. Anybody got any good advise on how to manage this. ie, I need to build up my immunity. I'm not a smoker, gave up 20 years ago, have not got lung problems (though now I suspect I have), nor am I too old at 53. I don't seem to have any of the major risk factors for the disease, I guess I have just had bad luck on my side.
Sarahann, I was eating gluten for 48 years before I went gluten free. Never once could I attribute throwing up with gluten. But now since being gluten-free, I have had the unpleasant feeling of wanting to throw up and throwing up. So it can happen.
My doctor described me as weakly positive after having my blood tested. He insisted I had coeliac, so my journey began. A bit like you, I was 48 when diagnosed, and I had already eliminated gluten out of my diet for about a month before the blood test. I was trying to figure it out on my own. If you are on a totally gluten free diet while having tests, the longer you have been gluten-free, the harder it is to get a positive result. But before a diagnosis, I was testing myself maybe once a week, and the gluten I had eaten made me feel ill, probably all the things you describe apart from the vomiting and migraine.
I like the way you described, laying down to deflate. That is me as well.
Weakly positive for me was a positive, both for the way I feel without gluten, and the way I feel so sick with gluten. If I had been eating gluten (more than once a week) in the month before testing, I am sure my total count would've been higher.
I think if you feel so much better gluten free, there is no way you can ignore the weakly positive label. In any case whether weakly positive or very positive the diet is the same.
Neroli, I would love to do what you say. But first of all I would need my mum and dad to believe there is a problem. I know it might sound a bit slack on my part, but I have discussed this exact thing with mum and dad. Mum goes as far to say, that my problems are similar to hers, but she is adamant that it could be the same disease. My father initially thought that it would be too hard for mum since she is in her late 70's. It doesn't help that I live in Northland and they in the south island.
I feel bad enough knowing I can't help, and that nothing I say will make a difference. I guess that is families for you, if I go on too much I get silenced, if I don't say anything, things stay the same. Vicious circle.
Hi, what you describe has been the case for me. I went on a diet to loose weight a while back while still eating gluten. On the diet I wasn't eating much bread and or processed food, so not much gluten, and I felt quite good. My diarrhea eased off and I felt better, but the relief was only temporary. I am guessing my body was getting used to the lower gluten, but it wasn't being fooled as it wasn't long before the symptoms were all back. It was only after that, that I looked for answers and that is when I arrived at the conclusion it was gluten related. The doctor confirmed this with a diagnosis of coeliac, and that is when I started a gluten free diet.
Yes, if I slip up now, even with the minutest amount, I get very bloated, irritable, and the dreaded D, to name but a few symptoms. These are more symptoms than I realised I had before. I did not realise just how bloated I had been feeling. I guess at 48 years old, and having eaten gluten all my life, those annoying issues were just part of me and probably felt normal to me. Yes I do react quite differently to gluten now than I did before.
I am the only one diagnosed in my family. My mother is having issues with similar things, but her doctor says coeliac is not genetic and he doesn't feel she has enough symptoms to warrant being tested.
Jane, sorry you are having it so hard. It reminds me a lot of myself. between 10 and 20 years of diarrhea. Finally I got the coeliac diagnosis, and with it came back a semblance of a normal bowel motion. But I still was not happy with it, as the weeks went it got to the point where it was really being a pain and I felt I was possibly not being careful enough, even though I had cut out most additives and was eating food that was quite plain.
Jane as you can't afford to loose weight, have you considered doing the elimination diet the other way round, and not being too stringent, but just pick on a few things that could be problems, like soy and dairy products, along with probably curbing your sweet tooth as sugar can cause problems. Then after a month or so, not sure how long, add one thing back at a time and see what happens
I started an elimination diet about 9 months into the diet, and I didn't think that made a difference even after three weeks. The things I cut out were soy, peanuts and dairy, which I thought were the main culprits, or the most common things people can have problems with. So I'm not sure what order I put things back in, but when I tried soy products, I did notice a change, particularly stomach pain and diarrhea, and since then have eliminated soy to the best of my ability, and probably about three months later, I was nearly normal again. In having said this, I was still quite loose, and even am now, three years later, but it is bearable and I'd rather this than constipation. Only recently I have cut down on maize/corn, and I have found it has made a difference too. No more achy joints and I think even an improvement in bowel motions.
I know it is hard, but stick with it, and hopefully you will get there. I found the first year the hardest, I was up and down so much.
Yes Jennifer, when I come across any adverse re-actions, I write them down too, some re-actions happen pretty quick, others the next day, but I can look back and wonder if it was this or that that caused it. It has been a long drawn out process, and for me different things give me different symptoms, so it has been invaluable to working out things. Sometimes I feel I have gone crazy and am taking things too far, but I feel comfortable with this, and I know the times I don't write things down, I tend to overindulge. What worries me now, is that once I start eating too much, I will get to the stage where I will give up on the weight battle and succumb to the inevitable. It seems I cannot train myself to be vigilant without writing it down.
Msmini, when I first went gluten free, I was dieting and counting calories. Since gluten free, I have done the same as I still have got weight to loose. As well as counting, I make notes of what I eat, as it has been more than gluten that upsets me, and cataloguing what I eat has enabled me to find the other culprits.
Your answer as to whether this helps is a yes and a no. My weight has stabilised, and has not gone down anymore. But I think it keeps me honest in what I eat and also when I have annoying symptoms I can go back and say, ah that was the problem. I think if I have an obsession, it is this. I'd like to think I average about 1500 calories, but often it goes up to 2000.
I used to have problems with eating before. In the fact that I would eat too much. Like Chrissy says, I would cook, or buy something really nice before going gluten-free, or even just plain ordinary everyday food, and I would eat all or most of the product myself. I just couldn't help myself, I have always been overweight and hungry.
Going gluten free, through a coeliac diagnosis, has changed things, in that I am not always hungry, so the everyday foods aren't eaten to excess. But I still have the capacity to eat a lot of unhealthy things in one sitting. If I bought chocolate, I would eat most, same with bags of crisps, I would eat the lot. Thankfully gluten free bread is not the nicest of things, or else I would be living off it, morning noon and night. I have thought I could manage a little bit of chocolate etc here and there, but invariably I would buy something nice and end up eating most, even with the best of intentions. That is the part that hasn't changed. I now try not to buy myself anything like chocolate that I can eat. It makes it so much easier, as I find I don't overindulge in the good foods anymore.
I can understand how you can be scared of falling into old gluten eating habits. That is what my nightmares are made of. I know to start with I didn't think my problems with gluten were too bad, and that I had to be strong and not fall into a habit of eating a bit of gluten here and there. I realized at the time that if I didn't give the gluten-free diet 100%, it would go by the wayside like all my other diets. I knew myself well enough to know that I couldn't stick to a weight loss diet even if my health depended on it, so I wasn't too sure if I could stick to a gluten-free diet. I completely surprised myself and gave it near enough to 100% even thought I was in quite a state the first few weeks. But having removed gluten and having had a few not too nice experiences eating gluten by mistake, I'm not tempted anymore. Thankfully gluten make me puke (vomit) so I do not have to worry about myself taking up gluten again. I wish chocolate would make me sick.
So you are scared that eating a more varied diet that gluten might slip back into your diet and cause not too many problems, but you just might be surprised that if you accidentally ate gluten it would make you sicker than you thought, and like me, sicker than it has ever made me prior to diagnosis. Hopefully when you venture out into new foods, you will not be tempted to eat gluten, as hard as it maybe, but we have to put our health first.
I get the brittle nails too that split and chip.
Also, I have had cramps in the soles of my feet. Especially when stretching them out while sleeping, they would hurt. And cramps in my legs. Must say the cramping has all but gone since being gluten free, but the nails are still a problem.
Hi Landon, my take on processed food and what I allow myself to eat is a bit different to Rinne's. For me I eat as much fresh fruit and vegetable, eggs and meat as I can, but I include things in my diet like coffee, tea, milk, rice bread, yogurt, pasta/rice noodles (as they are just basically the raw materials without all the additives in them.) My main focus is to steer clear of all the highly processed foods that contain the extra additives, soy, maize, colours and preservatives. I'm not saying I don't on occassions eat these things, but I try to avoid them as much as possible. They tend to make me sick. Could be because I seem to have problems with soy and maize. I find sticking to the least adulterated food, the better I feel.
Ah Blessings, I'm forever planning my own cheat party. Whenever I'm feeling sorry for myself. Sometimes I just want to feel miserable, I don't know why. But that is as far as it goes. Just the planning, as really I don't want to be sick as a dog? Never.
I take it that your comments are tongue in check, and I see you have just been accidentally glutened, and that is when I most want to go off the diet, that is the time when I feel such a failure and think what the heck. Misery loves company. When you're down, what difference does a little bit further down make. But in having said that, I don't give in to the feelings of eating more gluten, but I just ride out the storm.
Sounds like you have an understanding husband. A bit like mine, he knows my symptoms down pat, and just jollies me along when I ask for a bit of his pizza, he reminds me that he doesn't want to have to hold my head over the toilet bowl, as he has a sympathetic stomach and it would get him going. Enough to put anyone of I reckon.
I guess you are at a crossroads in your life, just having resigned from your job, I know if I resigned my stability would be all over the place and my feelings everywhere.
So Blessings, hope you are feeling better from the glutening.
I was another who never had loosing weight as a symptom. No matter how much D I had, I gained weight. I was so hungry all the time. Admittedly, I lost about 14 lbs before I was diagnosed, but that was through sheer hard work fighting the battle of always wanting to eat and not because of coeliac. As soon as I went gluten free I wasn't as hungry. I had all the best intentions in cashing in on this phenomenon, but alas I haven't been able to, and three years after going gluten-free, the weight is nearly all back.
I've never actually thought about eating gluten to loose weight. I have pondered with with the idea, but nothing serious. Yes I imagine it could work, I wouldn't recommend it and I wouldn't fancy being sick and miserable to do it.
And I am one that never lost weight going gluten free either. It just isn't fair.
Back to spices. Here in NZ a lot of the spices I look at in the supermarket say, processed on a line that processes gluten etc, or may contain traces of gluten. I have even cooked a cake once, felt sick and thought I better check the ingredients, and the packet of cinnamon I had used said it contained gluten. So I agree spices can be an issue. But having said that, our labeling and food production is different to yours, but I'm quite sure most of our spices are imported from somewhere.