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
TuxedoCat - your story sounds almost exactly like mine, except for the thyroid part. I remember passing out from eating donuts and stuff like that when I was a kid. I had terrible hypoglycemia. It wasn't until I went off gluten that I could eat sugar again and not feel awful. It's amazing that people (doctors) don't put this together. That's part of why I am on the path to be a dietitian.
And Mommida - the snakebite theory - I hadn't heard that one but it makes some sense. I've been thinking that because I haven't stopped eating gluten, in other words I keep eating it every day, that I haven't had a chance for a crash, which is when I'd feel even worse. But I have been feeling worse (slightly) every day, so maybe that is further proof. I will be interested to see if my results come up positive (blood) and won't be surprised if my esophagus tests positive for a higher than normal level of eosinophils. I have had a lot of problems the last few years feeling like my throat has turned into a solid pipe (PVC) or that swallowing is difficult. I also choke on water or whatever I'm drinking regularly - even my own saliva sometimes.
So we'll see what happens - I was just surprised by how different my reaction has been but the more I read about it, the more I realize I'm not alone on this one. Still going to be a long 30 days - I don't do well with headaches or nausea. :/
Yeah, I get that - it's just so weird that not two months ago I had something that was cross-contaminated and was super sick from it, but now that I'm eating so much more, intentionally, I'm not anything like that. I don't feel awesome by any means, and have a migraine today that won't go away, but it just seems odd to me.
Oh well, the mysteries of gluten. I guess I'm glad I'm not super sick because I have a month ahead of me of this. Yuck.
I haven't posted in many years because I've finally gotten to a point where I am feeling better and actually doing really well with my food intolerances. I have a blog and a Facebook group, and have been studying nutrition to become a dietitian so that I can help other people with food intolerances. I didn't have diagnosed "true" celiac disease but have an autoimmune reaction to gluten, so I've avoided it for 8 years. I have gotten sick from the smallest amount when something I've had has been cross-contaminated or been served something accidentally with gluten in it.
Now my gastroenterologist is testing me to see if I have eosinophilic esophagitis and he has asked me to eat all the things that irritate me the most. So I have been eating so-called gluten-free oats the last 2-3 weeks (which cause me gut pain and heartburn) and I've been drinking orange juice. SInce school just got out last week, I started eating gluten, too, as I figured I would be incapacitated by it and wanted to do well on my finals. I've been back on it for 6 days and other than bloating (also had from oats) and heartburn, I haven't had any of my typical glutening symptoms. How could my body overreact and make me so sick (for up to a month!) when I'd get a breadcrumb in my food, but eating out-and-out gluten left and right (croissants, Chinese food, a whole baguette, Grape Nuts, etc) not make me feel all that bad?
Not enjoying the bloated look, though. And one thing I'm reactive to is nightshades (potatoes/tomatoes/peppers/eggplant) did make me feel pretty horrible yesterday. I wasn't surprised by that one. This gluten thing though, it's weird. I don't have a whole 6 weeks to be on it before I have to get my test done - I'm doing the blood test at 4 weeks - but the endoscopy (only upper, no biopsy, just looking for inflammation in my esophagus) is 6 weeks after I started the challenge.
I showed an elevated ANA (Anti-Nuclear-Antibodies) of 1:320 a couple of years back and was sent off to a rheumatologist. No further testing showed anything. Apparently it's not uncommon for a healthy person to have an elevated ANA.
I did find out this summer I have Interstitial Cystitis which some think is autoimmune - there doesn't seem to be any consensus. I'm wondering if having IC would elevate ANA? Or if my elevated ANA means pretty much nothing specific.
For those who don't know, ANA is measured as your sample is diluted, so the "normal" reading of 1:40 is only three dilutions from 1:320 (1:40, then 1:80, then 1:160, then 1:320), and 1:1280 is two more dilutions from 1:320 (1:320, 1:640, and then 1:1280). So the jump from 1:40 to 1:1280 isn't quite as scary.
There are some links of positive ANA to fibromyalgia, however. Your mention of bone and muscle pain could be consistent with that. However, really hard to know.
My favorite meal is homemade nuggets. I take equal parts sorghum, buckwheat, and millet flours and pour in a bag. Cut up breast meat chicken, soak in buttermilk for 10 mins. Then toss in the bad, shake, put in a skillet with some hot olive oil (just enough to cover the bottom) and cook, turning, sprinkling salt, pepper, and garlic powder while they cook.
If you do it just right, they get a killer crunchy crust on them. Very delicious. I make a garlic mayo dijon mustard dip.... (drooling)
You're right that one way to avoid it is to buy organic rice. But unfortunately, a lot of gluten free products have rice flour in them that is not necessairly organic - in fact it would be hard to track down where the flour came from.
I wish they'd stop messing with food! I'm pretty sure Lundberg rice won't go this way.
I just ordered and received a case of Ener-G tapioca hamburger buns (six packs in a case, four buns each for $17 and change) and they are not bad at all. Light! A little dry. But I had a killer burger on one and my husband agreed - good (he doesn't *have* to be gluten-free, lucky guy...)
I have not been impressed with most gluten-free breads, etc, but these are pretty good. Also, I sliced one in half and toasted like a bagel and smeared with cream cheese and it was great! Two mornings in a row... my husband tried a bite and said nice texture - even a little chewy. Not a heavy dense sort of bread, but like some of those lighter bagels you get at the shops. (of course no hole).
Anyway, check them out. I'm pleased with amazon .com - they have a whole gluten-free shopping page now.
I clean the gook off (pour it all into a bowl of water and use my hands to loosen the gook) and then pour a couple tbsp of olive oil on a sturdy cookie sheet (with a rim). Pour the seeds in, stir around to coat with oil, then sprinkle with salt and garlic powder (MMMMM!!!!!!) and put in the oven. Uusally 300 degrees - slow and low is the best way. They'll start popping at some point. The slow cook gets them more thoroughly dry, the low prevents burning. 300 might be too high. I play it by ear and we always gobble them up!
Must go buy some now... homemade ones are about a thousand, no a zillion (is that a number?) better than anything I've had in the stores.
About pizza - if you are anywhere near a Whole Foods, they have a great pizza crust there in the freezer section (Whole Foods Gluten Free Bakehouse). Sort of like a Boboli crust. I was surprised I could eat them because I can't have corn or potato either and that makes gluten-free baked goods tough to find for me, but these are mainly rice and sorghum and are DELICIOUS.
Manna from Anna is great but I had to stop eating corn so the regular mix was out and the others have potato in them (also can't eat that) so I had to find something else. So far I like the Pamela's mix but don't love the egg smell in breads so next time I want to try making it with an egg substitute.
I had frozen half the loaf for later and had some yesterday with an avocado, cheese, and bacon sandwich and it was pretty good (and filling) though a little crumbly. Also has a bit of a sweet taste to it, but I'm not complaining.
Oddly, and I know this is not the popular opinion on this board I really like the EnerG Light Tapicoa bread. The regular tapioca isn't as good for some reason but the light, aside from being kind of small pieces, reminds me a lot of a toasted wonder bread type bread. It's great when I'm not feeling so hot and I crave toast - buttered toasted light tapioca really helps me get back on track with eating.
Plus it has an unbelieveable shelf life if unopened. So buying a case isn't a bad idea (I've done it).
Maybe it's just me. I seemed to get glutened all summer, then my work situation radically changed and I'm currently working two part time jobs, and for reasons probably due to stress, have lost my appetite. So I keep not eating when I need to and it's not quite making me cranky but just making me tired! And less funny.
I mean, I just worked this fundraiser (local United Way) and they had a chocolate fountain! I don't mean one of those, buy it at Target/K-Mart made-in-China kind of fountains you may use a couple of times and then give to Goodwill - I'm talking about a four foot tall dark chocolate founatin - and tables of things to dip. Of course the things to dip were all on sticks and included: Oreos, rice crispy treats, palmier cookies, mini brownies, fruit, etc etc etc. So no chocolate fountain for me. For some silly reason I had been holding out hope that people didn't actually dip food into it - they got cups or something (you can tell I've not been around a chocolate fountain before, can't you!)
Yeah, that was a major bummer. And it didn't help that when the waitress on Letterman brought out the pizza bread I was thinking - mmmmm, I would actually eat that if.... and Dave took the words right out of my mouth.