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
Self-diagnosed with my doctor agreeing. We were going to do the blood work and biopsy, but when I tried to eat gluten again to get ready, I was completely miserable. So I didn't bother. Nothing could MAKE me go through that again. So here I am, going almost a year gluten-free (though I've only gone 3 months without CC, simply because I live in a house with 5 gluten eaters).
I will feel a little light headed, or slightly drunk/brain foggy within about an hour of eating something containing gluten. However, I rarely notice this until the next day when the symptoms are much worse.
When I go to sleep, I get severe nightsweats, the completely soaking my bed kind. I wake up in the throws of a severe fibro flare up and I typically have a migraine. I have severe gas, watery stools and really bad abdominal cramping for the rest of the day. I also seem to get mild sinus congestion and a sore throat. These symptoms last for about a week, but do get progressivly less intense as time goes on.
Thanks for the link. This is something I tried a few years ago. It was a very very tiny component of my migraines. And only red wine (or beer) would trigger a migraine attack for me.
Thank you for your very indepth and thorough reply Takala. I have read it a few times. I've got this thread bookmarked. I'll admit I probably should have known all this stuff, but when you cut out gluten and are hungry all the time, I guess I just sort of paniced.
I have trouble with grains, and beans, but I might try bean things again. Thank you again.
Mack the Knife, thanks for your suggestions. I am interested in trying pumpkin, because I love it. Thank you again.
Mari, thanks for your reply. I could ask my doctor about the candidia thing. I don't think that's an issue, but you never know I guess. I've never had a yeast infection before (anywhere), just C.Diff last year (it was omfgawful, I was sick for WEEKS). I've already been cutting back the pop (going cold turkey was a little difficult. I'm down to a glass a day, and it seems to be helping.
Thanks everyone for the replies. I'm still reading through them and soaking them up. I just wanted to let you know I am paying attention lol.
A note on caffeine. I drink it because it helps with migraines. But if I drink too much (like in a cup of tea or coffee) it makes me feel all shakey and anxious. It's really uncomfortable. I'm not sure why coke does not do that, but it doesn't. Unless I drink a lot at once (like 1.5 liters).
Artificial sweetners are a migraine trigger for me. I've tried all the diet ones, they give me migraines within a few minutes of drinking/eating them. Stevia is ok, but I don't really like it. I don't actually need something sweet. I don't crave sweets (at least not any more than once in a while). I just drink coke to manage my migraines (which are pretty much daily). I went off of caffeine for almost 6 months before, I had more migraines even after the withdrawal period. Gonna have to switch that up, but I am not sure how yet.
I did the whole migraine elimination diet. My dietary triggers are red wine, beer (not that I can have that) and artificial sweeteners. My main triggers are muscle tension, changes in the weather, changes in my blood sugar, changes in my sleep patterns, sinus congestion, all of my allergies, tmj, and when people or I touch certain parts on my face and scalp and neck, bright light, strong smells, loud noises (like listening to loud music for a few minutes or standing near someone who is yelling.) As you may have guessed already, I'm a total shut in.
So I've been gluten free for a while. I think that I get hit with low levels of gluten from the things around me. I haven't got that down yet. But my main concerns at the moment are feeling hungry all the time and getting hypoglycemic.
I have had issues with low blood sugar, usually when having a lot of pop and not eating anything, for a long time. However, going gluten free seems to have changed that. I used to drink a lot of pop. I still drink some. I've been cutting back the last few days to see if it helps with my blood sugar, it doesn't seem to affect it at all. I am a chronic migraineur as well, and hypoglycemia is one of my triggers. Typically getting hungry, then faint, irritated, adrenaline soaked, and just bat-poop crazy feeling when hypoglycemic gives me a migraine attack.
Prior to going gluten free, I did not get hungry much. I ate two meals a day at most, maybe a snack. The rest of my calories would come from pop (bad habit). I had (and probably still have) some really bad eating habits. I've always looked more or less healthy so my diet was never a concern to others. My chronic conditions never responded to diet changes in the past (going vegetarian, going vegan, going organic, going dairy free, going caffeine free, etc). The only thing that helpped was going gluten free. And that has eliminated my IBS symptoms, but everything else has flared back up again.
I have no doubt in my mind that eating gluten is bad for me. Not sure if I have celiac, or non-celiac gluten intolerance. But I do know, for the first month being gluten free, I felt awesome.
My problem now is, I'm poor. I live in a household with 5 other gluten eaters. But mostly, my bloodsugar constantly crashes and I'm always fricken hungry. I have been eating much more meat/protein and vegetables. I do not eat a lot of complex carbs because corn seems to bug me, and rice doesn't seem to fare much better. I eat nuts and things when I can afford them, fresh fruit, and dried fruit. But again, these things are expensive. I am feeling really sad because I don't know what to eat that I can keep eating because it's affordable.
I mentioned it to my new doctor (recently moved), he said because my old diet had so much refined grains and sugars that my body is still adapting to this diet. If that is the case when do I stop feeling like ass and start feeling normal? I don't think it's that simple, I think there is something wrong.
Some medical history:
Migraines since 12, chronically for the last 10 years or so.
Fibromyalgia dx almost 3 years ago now.
Low iron since age 12 (did not respond to supplements)
Low hemoglobin since age 24 (did not respond to supplements)
IBS since age 16 that magically disappears when going gluten free
lactose intolerant since age 16 (I have trouble mostly with milk and icecreme, fresh cheeses. Older cheeses and yogurts don't bug me much.)
I've lost 15 lbs since going gluten free, all in the first month.
Example day of eating.
Today I had:
bowl of yogurt
1 hour later I had an ensure meal replacement
20 minutes later I had a decaf-tea
20 minutes after that I had 2 scrambled eggs with cheese
I napped for 4 hours.
upon waking I had 1 nectarine
1 hour later I had a glass of coke
10 minutes after that I had a boiled egg
20 minutes later I had a handful of almonds
20 minutes after that I had another nectarine.
20 minutes after that I had another bowl of yogurt.
1 hour after that I had another glass of coke (last of the day if I can help it)
Because my family is having hotdogs for dinner I kind of have to fend for myself. I get some french fries and salad. But I'll be eating those in about an hour.
If it helps, I've been inside all day, the most strenuous thing I've done is go up and down the stairs a few times.
Really, how much should I be eating? what should I be eating? I feel like poop, I must being doing this wrong. GAHH I'm so confused.
Because I have fibro and migraines (attacks nearly every day) I don't get out much. I am pretty sedentary. But I still am flexible and relatively strong. I try to exersize twice a week for 20 mins. Being so hungry all the time kind of puts a damper on that.
I know my situation isn't exactly the same. But I'm going through something simmilar. Only I get nauseated when I go hypo too. I don't know what to do about it. I've got like no food at home and I have to eat contantly. I don't understand. And I'm so hungry and sick feeling and there is a plate of banana muffins my mom made on the counter that I can't eat. And I just want to eat one. I want to cry.
Thank you for sharing your post with me. I'm glad to know that my experience is simmilar to yours. I hope you feel better soon!
I have had chronic migraines since I was a child, and that of course comes with a whole closet full of neurological symptoms, so it's difficult for me to seperate what is caused by gluten and what is caused by my migraines. I have noticed when I am glutened though that I have sore legs, muscle spasms when I try to sleep, and it makes it very hard to sleep. I'm not sure that info helps you.
I haven't tried chex cereals, but I have read on these boards that many people do react to them. Might be a good idea to cut it out for at least a little while to make sure it's not what is making you sick.
Condiments, especially shared items with gluten eaters have such a high risk of cc, it's best to have your own. If you're living in a gluten-free household there could be something in the mustard that you're also sensitive to (If you know it's gluten-free).
I've been gluten-free now for almost 3 months and I've been glutened many times. It takes me about a week to recover from it. And I find any processed food is just a no-go for me. Most refined grains and really sugary things in general (just the bloodsugar spikes are pretty crazy). Stick to raw foods and whole foods and keep eating. I know some of us, when we feel sick the temptation is to not eat. Who wants to eat when you feel sore and sick to the stomach? But to get all that gluten out of your system you need to eat.
I have to second this. I'm still starving and I'm on month 4 now. I am ravenous all the time. But it does give me a good indication if my food has been contaminated with gluten, my appitite just shuts down.
For me, my first worry about that was gaining weight. I am small, I have a small frame, so it was a little odd at first to actually experience the opposite. I'm eating twice the amount of food I used to, and losing weight, it's very weird.
Since your child is just a baby I don't think massive weight gain in the concern. Just follow your instincts and feed that little munschkin all the good things a growing kid needs. Keeping it all gluten free, of course. I think in a few months things will probably settle down a bit once her body is out of "must get all nutrients" mode. And more into regular fuel mode.
I was given the IBS diagnosis when I had my colonoscopy and gastroscopy they didn't see anything indicative of anything else. So there, I got IBS. That was when I was 16. So, 9 Years ago. The only medication that ever seemed to help was buscopan. Nothing else seemed to do anything. I tried diets and food elimination. (Not going gluten free though, I hadn't ever heard of that, the concept didn't exist in the reality I was walking in.) Only recently when my last doctor asked me if I had ever been tested for Celiac disease did the idea ever come up. Going gluten free eliminated my symptoms, completely. Now, I just get "IBS" when I've been glutened some how, and usually only after the next day.
As far as I know, I've been sick with something since I was 12. Because that's really when my ibs, migraines, and general issues all sort of started. I'm 27 now. It takes a long time for us to figure out what is happening to us, and even longer for the people who are just listening to us.
One thing that really helpped me was mindfulness training. I am certain it would have taken me even longer to figure some of this out had I not had that therapy.
Please don't think of yourself as stupid or foolish. Going gluten free, seems simple, but in reality, it really is complex. Our world has such a massive reliance on wheat and related products, it's difficult to disconnect from.
I tried it... for three days. That's it. It got so bad I couldn't eat, I could barely walk, and I couldn't sleep (well, not without help). If you find that going gluten-free makes you feel better, healthier, then there is your answer. It was so horrible, I just figured, why go through all that suffering if you don't have to?
I have been told I'm one of the most picky eaters that my family and friends have encountered. Before going gluten-free I would tire of foods even after just having them once in a longer time span. Now, it takes a little longer. I can have the same thing about six to eight times in a row and only then do I get sick of it. I think it is partly because going gluten-free I got my IBS under complete control to the point where I don't even notice it anymore. I used to get nauseated at the drop of a hat, constant cramping and such. Doesn't really make one interested in eating.
I like keeping a lot of choices around. I find if I rotate things, I'm less likely to get tired of them.
I don't think it's a celiac thing, more of a human thing. hehe.