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
Like you, I am gluten free and vegan. Vegetarian by choice originally, but since becoming severely lactose intolerent and intolerent to eggs I'm now vegan!
Here are some of the things I eat all the time:
- Nuts. Full of protein, energy, vitamins and minerals. I love pecans, walnuts, almonds, cashews, brazils. I have peanut butter with ricecakes every morning.
- Vegetables. Make your own vegetable soups using veg stock, herbs and spices (gluten-free of course!). Find soup recipes online. I find root vegetables make the best soups and autumn/winter veg, which is in season right now. Leafy green veg like cabbage, kale and spinach will help you get iron, if you eat these with some food containing vitamin C (like orange juice or tomatoes) studies show it helps to boost absorbtion of iron.
- Lentils. Full of protein and fibre. You can buy these dried or in a can with water, which you just drain and cook them for a couple of minutes. Great in soups or casseroles.
- Chickpeas, pulses, kidney beans, beans of any kind! Again full of protein and fibre. Can be used in chilli, with tomatoes and pasta, curries, soups, casseroles etc etc.
- Houmous. Eat this with corn chips, or dip vegetables in it. I like it stuffed in baked potatoes. Full of protein and fibre.
- Bananas are great for energy, as are apples, oranges, pears, berries and any fresh fruit. Dried fruit is great as it lasts forever. I love raisins, dried apricots, sultanas or prunes. Put them in a bowl with some nuts as a good energy snack.
- For carbs I eat potatoes (boiled or baked), rice, puppadums, corn chips or gluten free pasta (made with corn).
Hope this helps!
(I'm from England by the way, but you should have no problem getting all this in the US)
There're also some great vegan recipes here: http://glutenfreegoddess.blogspot.com
I was very bloated, burpy, indigestion pains.... when they're really bad these can shoot in your chest and make you feel like your having a heart attack. I also had anxiety attacks and palpitations for years before going gluten free, partly because of the effect gluten had on my body but also because of the worrying and unanswered questions about what was wrong with me.
If I went anywhere in public and started to feel ill, I would get scared that I was going to be sick everwhere or suddenly get diarrhoea and not be able to find a bathroom and that would make me go into a kind of anxiety attack.
There are so many symptoms associated with coeliac disease. Blood tests are often false negatives so the only way to really find out is to try the diet. You need to give a gluten free diet time. It can be weeks or even months before your system can clear itself and you start to notice the difference.
I still have that sour feeling in my stomach also, I guess it's where there is still inflammation. When I had my endoscopy they said the first part of my small intestine was very inflammed with nodulation and a small ulcer, I always get the sour knotty feeling about 30 mins to 1 hour after eating so I guess it's happening when it reaches all that sore stuff!
I have days where my energy is higher than ever, but I find if I do anything out of the ordinary like go out for an evening and stay up late or if my little boy wakes me up in the night a lot I'm totally pooped by the next day, it's like I don't have any extra resouces to keep me going.
I was eating constantly too, but never put on weight, in fact I lost weight and couldn't gain it again, I put on about half a stone since going gluten-free, which is ideal for me!
I like the way you said you feel 'crummy' ! It's quite an approprite way to describe it!
I don't think anyone who has true celiac gets immediate relief upon going gluten free... the stuff takes a long time to work itself out of your system and your immune system needs to repair everything and start to let it's guard down.
Maybe immediate relief is felt more by those with gluten intolerance rather than celiac?
Personally, my symptoms were/are primarily digestive - bloating, constipation, cramps, indigestion, soreness (though there are many other issues too). I found the boating stopped the day I went gluten-free, the constipation took a couple of weeks. The stomach pain after eating still lingers but I think this is because my stomach and small intestine are still inflammed and trying to heal.
I have more energy than before, I don't snap at my family, I don't panic, don't feel like I'm going to fall over or be sick every five minutes!
tmb - I think there is some evidence to suggest people go though some kind of biological withdrawal after going gluten-free, i can't say this happened directly to me though, but I've seen others describe it on this board in the past.
Recovery is a very uncertain process, there are things you can do to make your self feel more certain though, like having a completely gluten-free area in your kitchen and your own kitchen untensils etc... I didn't do this at first and now I have I feel more relaxed. Try to eat only brands you are CERTAIN to be gluten free to avoid worrying about 'glutening' yourself. Also, maybe keep a note book of your daily reactions to foods and then work out which make you feel worse - include the date, times, physical/emotional feelings, bowel movements, skin reactions... It's not an exact science but I've found it very helpful!
I'm just coming into my third month and would pretty much echo all you've just said!
Good days, bad days... sometimes good mornings and then terrible evenings (like today, for example!)
Keeping a food diary has helped me stay focused, as has the help of my fantastic family.
One very undesirable thing about the whole process is the paranoia!... 'do I really have this disease?'... 'will I ever feel better?'...'do I feel worse today or am I imagining it?'... 'are my hands contamintated now I've touched that?'... 'what was it in that meal that made me feel like this?' etc etc!
Have you considered the other methods of contraception like the contraceptive patch or injection? These methods would go directly into your skin and so there would be no chance that your gut would not absorb them.
When I realised I had coeliac disease I was worried that my pill might contain gluten and as I couldn't get a reply from the manufacturers I went to my doctor to look into other methods. I'm on the contraceptive patch now and although I had some 'breakthough bleeding' in the middle of my cycle last month it only lasted a week and then went away, the leaflet inside says this is normal and just your body adjusting.
I guess there are always other things like condoms etc, it might be that hormonal contraception just doesn't agree with you and you could be better letting your body do it's thing... just depends on your preference!
I've been gluten free for almost two months and feeling the difference. I'm intolerant to eggs unless they're used in baking etc (they give me horrible stomach ache) lactose intolerant to an extreme degree and vegetarian.... so vegan basically! I'm also cutting out soy for a little while just to see if it makes any overall difference and trying to go light on carbs to help my constipation issues.
The problem is I'm bored! It seems I'm finding less and less things I can tolerate and eating doesn't give me pleasure anymore as it's all so bland.
So, can anyone give me meal/snack ideas based on my diet restrictions? I'm looking for something tasty and satisfying that doesn't make me hurt!
- no gluten
- no egg
- no butter, cheese, milk
- no meat
- carb light
Just noticed I'd forgotten constant mouth ulcers and runny nose on that huge list of symtoms!
Thanks to everyone for the replies, it's really helpful to have the advice and perspective of others and I'm feeling a little bit clearer about the whole thing now.
It's really interesting about the amount of time/gluten amount you need to shown damage. I certainly think I may have jepodised my result by being gluten lite and gluten free at times for several months before my biopsy. And the fooddoc blog helped too.
I think if I go back to my doc I'll ask to see exactly what bloods were done and the exact result of my biopsy.
I've decided to pretty much go it alone as my doctors seem to be completely clueless. I wanted a proper diagnosis for my own peace of mind, so that I could be sure I was doing the right thing and to prove to myself and others that I really have been genuinely ill all this time!
My skin biopsy has been canceled by my dermatologist and moved to October 1st, so I'm still waiting for that. Meanwhile my symptoms seem to be really up and down, easing for one day and horrible again for the next. Yesterday I had horrible stomach cramps and then diahorrea, very moody with skin flaring up even though I hadn't eaten anything unusual for me, and the previous day I had constipation.
I'm crying a lot and feeling despairing because I just don't know what to do for the best. My stomach and small intestine region still feels very sore, achy and inflammed inside. Seems as though everything I eat irritates it.
I'm thinking about the SCD, but as I'm already vegetarian and intolerent to milk and cheese, looking at the list of illegals I feel like I would only be left with fruit, veg, eggs and nuts! I really don't think I could do that. Would doing a mild version of the diet have any impact? A lot of the info on the SC diet talks about it helping the diahorrea... I only have diahorrea occasionally and constipation is my main complaint, can it be any good for constipation?
I plan to cut out soy to see if that makes any difference. I think I may still be getting contaminated with gluten making my little boy's food, we have our breakfast together, I have ricecakes and he has toast, I'm careful to keep things separate when making our food but when he drops it I pick it up and give it to him and the continue to eat my food (with my fingers!), can this be enough to keep the inflammation in my stomach/intestine going?
Feeling really frustrated, miserable and defeated as I just recieved the results of my endoscopy biposy today.
On the day I had the endoscopy, the inital findings were gastritis (inflammation in the stomach), duodenitis (inflammation in the small intestine), 'nodulation' of the duodenum and a small erosion in the mucosa of the duodenum.
I've waited 5 weeks for the biopsy results (I'm in England by the way) and after days and days of pestering my surgery the receptionist finally called to say the biopsy is 'normal'... she said she couldn't give me any more info on exactly what the results showed. I'm devestated!
I have been gluten free for 5 weeks now, since the endoscopy. My symptoms before going gluten free were:
- fatigue, drowsyness, low mood, hungover feeling
- nausea especially after meals
- sore stomach and abdomen
- indigestion, major bloating, gas, heartburn, reflux
- stomach and abdomimal cramps
- daily painful constipation... resulting in piles and fissures
- D immediately after eating any dairy (lactose intolerent)
- flu like feeling, brain fog, dizzy, disorientated, anxious
- unable to focus/concentrate
- weak muscles, sore joints especially knees, worse at night... I have to sleep with a pillow between my knees
- itchy, stingy weeping rash on elbows, knees, legs, hands and forearms... not confimed as DH but looks like the pictures I've seen... I have an appointment with a dermatologist to take a skin biopsy tomorrow
I've had these symptoms to various degrees since I was about 16, and some of them even as a child. I've seen many doctors over the years who just tell me I have IBS or a 'virus' or anxiety/depression (which I don't). Things got really bad after having my son and that's when I started this long process of trying to find out what exactly my problem is.
Bascially, I'm 23 but I feel 93! It's really hard as I have a son who's almost two and I'm desparate to get well so that I have the energy to enjoy life with him!
After cutting out gluten my indigestion, bloating, burping, reflux and heartburn immediatly cleared up.... as did the constipation. All the other symptoms remain to the same degree if not worse!
I had a blood test for celiac prior to the endoscopy, which was apparently negative. The doctors don't give me any info on exactly what they tested for so I'm none the wiser!
I would say I was eating a 'light' amount of gluten before the biopsy for about 4 weeks, I tried to eat a lot of it in the preceeding two weeks even though it made me feel awful... could that have made my gut heal a little?
Can anyone give me some advice on what to do next? Should I push the doctors to tell me what the biopsy findings were EXACTLY and what the blood tests actually were for? Could I have celiac even if the biopsy is negative? The medical profession are so cold, and seem content to just leave me as I am and keep fobbing me off rather than help.
Well, I can only speak from my own experience... I've been gluten free for just over a month and have had a slight improvement in my GI symptoms but, like you, my DH has got progressively worse.
I'm still waiting for the results of my endoscopy/biopsy (I've been waiting 5 weeks, the health system is painfully slow here in England!) but I have classic Coeliac symptoms and my rash (in my opinion) exactly matches the description and pictures of DH. I'm having a skin biopsy next week with a dermatologist.
From the things I've read online about DH, it may not improve or even get worse for a while as your body clears all the gluten/antibodies out of your system, kind of like a detox:
"...The rash is caused when gluten in the diet combines with IgA, and together they enter the blood stream and circulate. They eventually clog up the small blood vessels in the skin. This attracts white blood cells (neutrophils), and releases powerful chemicals called complements. They actually create the rash. Iodine is required for the reaction, so people with DH should avoid using Iodized salt..."
Thanks Woolster, I've had a horrible cold for the last week so I think that confused things a little. I also got my mouth ulcers back for the first time since going gluten free, and my legs have been really achy but I guess if my immune system was busy fighting the cold then it's understandable. I've checked my shampoos etc and everything seems okay and the only thing I use on my lips is vaseline.
I'm going to try cutting out soy for two weeks just to see if that makes any difference and I'm planning to be more vigilant with crumbs in the kitchen! Hope you continue to improve... Sometimes it's easy to feel like I'm not making any progress but I just try to remember how awful I felt at the beginning of the year and I realise I am getting better slowly but surely.
I'm in a very similar situation. Gluten free for almost 1 month. The constipation, which was one of my main issues, cleared up in the third week and I don't bloat up after eating like I used to. However, I still feel like my digestion is really sensitive! I can't eat on the move or when I'm busy/stressed as I'll feel really sick for a couple of hours afterwards.
Sometimes I'll get gassy, nauseous and dizzy and bad tempered but I can't seem to find the cause as I'm sure I've not been glutened by anything I've eaten... could I still be getting glutened by my shampoo or toiletries? How do I go about checking them? Do I have to check every single ingredient separately or should I try to ask the companies? I have a little boy of 20 months who isn't gluten-free, and I have to make his food so maybe I get CCed sometimes, though I'm quite careful... can a tiny amount really cause symptoms?
Also my DH has been a million times worse than it's ever been since going gluten-free, it's got more and more severe as the days go by. Any ideas?
I cut out gluten (obviously!) and all milk products as I'm severely lactose intolerent. I'm vegetarian so I eat eggs about 2/3 times a week for protein, plus peanut butter (gluten-free!), nuts and lots of beans/pulses. I make sure I get lots of fresh fruit and veg and don't eat processed foods, except organic salted popcorn (just salt and corn!) and plain tortilla chips (also gluten-free!). I don't eat soy, but have soy milk in tea, about 2/3 cups a day. Why do so many people cut out soy? Can it cause GI symptoms like the gluten ones? Should I think about cutting out the soy milk in my tea?
Sorry about all the questions. All the medical professionals I speak to seem to know absolutely zero and I drive myself nuts analysing everything I do all the time!