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
Thanks very much for the advice and good thoughts.
In answer to the after 5 questions, I rarely have anything after work except dinner, and in most cases, it's something fairly simple and non-offensive. I'm still getting used to be being able to eat again, and since night was always my worst time, it's been a mental trial to push through and actually eat anything for dinner. I'm doing much better, but sure enough, all my bad symptoms start after 5.
For feeling better: I drink Yogi Tea Green tea Kombucha, with Yogi Tea being the brand. I put honey in it, and then I heat up a heating pad -- like for muscles -- and wrap it over my abdomen. That helps a lot.
The best thing you can do is know that it will be over soon, and ride it out. Watch TV or do something that passes the time, and use distractions as best you can.
Okay, for staying away from gluten: There's a couple things you should take a look at. You didn't give a lot of detail, so I apologize if I go over ground you already have. =)
First, make sure the products -- not just the food -- you are using are gluten free. Shampoos, soaps, lotions, make-up, even dishwash detergent. Your pans and toaster and breadboards are all replaced, right? Colanders, non-stick pans, things like that, should have been replaced right away -- not everyone needs to, but I tend to be super-sensitive, so I had to.
Then look at every aspect of your day. What about your chapstick? Lipstick? Are you prone to putting your fingers in or around your mouth, or chewing on pens? (if you are, stop that! I did both, and would get sick a lot more than I do-- er, did until recently.)
Do you have an SO? If so, is your So gluten free too? My husband had to go gluten-free because not only was he starting to show rash symptoms with gluten, but he'd cheat, then touch me or kiss me, and I'd get sick! If your family or SO is not gluten free and they get their gluteny fingers on you or your stuff, you could get sick if your fingers or those items go by your mouth.
I swear I was doing better. I went even a month without symptoms, and then all of a sudden, boom, I'm dying every night again.
A brief recap:
I'm not officially diagnosed. I have (had) no insurance so I went to a walk-in for all the usual tests -- still paying those off, let me tell you. Everything, including the gluten antibody blood test, came back negative. Before doing an endoscopy, which the doc said would cost about $2000 alone, she put me on a gluten-free diet and had me check back in two weeks. When I showed improvement, she basically said, "Congrats, you're gluten-intolerant, have a nice day". She was, in all fairness, trying to save me money and time spent being sick, but now I wonder if we missed something.
I've only been on the diet since late April, give or take. I started showing immediate improvement, followed by definite outbreaks as I accidentally glutened myself with various things, and went most of June with no issues at all! I still eat dairy, but not tons of it, and I also eat potatoes, tomatoes, corn, etc. The usual things that may also cause issues, but I don't experience issues with them at any given point. There's no pattern, for example, to the food diary. I don't think it's any of those causing the problem else I'd be sick all the time.
Three days ago -- the night before my anniversary! -- I got sick so bad that I was up all night. I literally got a single hour of sleep before I had to go to work. The only thing I could think of that made me sick was the new coffee I had just opened up that day -- an organic blend. Nothing else I had really was any different at all. I've only just recently picked up coffee again, though, as I figured hey, all my other foodie pleasures are gone.
Then the following night -- my anniversary night, let me remind you ^^; -- I was sick all throughout Kung Fu Panda and had to lie down when I got home. I did have some nachos from a Mexican place, but I'd had them before and was perfectly fine. That said, I recognize that it was a risk to take,a nd I figured maybe I just got caught with some CC.
But today, I didn't do anything different than I normally do. I got a plate of fries from my daily lunchtime place, and I had a bowl of gluten-free puffed corn cereal with bananas in it. Yet here I am, dying again.
Is it possible that the coffee is triggering this? I had different coffee this morning, and maybe my system just isn't liking coffee in general? And if it's that, then why do the symptoms hold off until night? Every gluten- or stomach-problem I've had related to this sickness has started at night, after 5pm, and that's weird to me.
Starting tomorrow, I'm going to quit coffee entirely, mind my Ps and Qs and not eat out at all, and see if maybe I still get sick. If I do, I'm going to be very worried: is it possible, really,t hat I have some other stomach problem that has gone un-diagnosed? Is it Crohn's? The doctor seemed pretty sure that it wasn't, but then, it's so hard for me to be sure because I don't have tests, nothing to back it up. Is something really the matter with me that isn't Celiac?
I haven't done the gene test, and I can't until I pay off the first round of med bills and get some money stored up in my insurance account, but I really should do that. Thing is, my family is almost all northern European, so I'm pretty sure I've at least got the gene. Not sure what it'll tell me, otherwise!
I want to go on record to say that there's no pressure to be had in any direction; it was just an element to a couple conversations that I figured I'd ask here about. Being the first in my family to be diagnosed (or even suspected, for that matter), I don't have the knowledge to draw on from close members of my family, so you're all it.
This came up in conversation the other day between hubby and I, and again between friends and I, and I was just wondering if anyone out there has simply decided not to have children to avoid passing on Celiac to a child?
I'd be interested to hear your story/thoughts, or anyone's thoughts, really. =)
Because it's something I want very much for myself, and he IS turning 18 ( ), I would recommend getting him an iPod or equivalent for your cell company.
Aside from the sheer awesome of it, it'll be extremely helpful: he can keep DO NOT TOUCH lists or grocery lists on it (tons of list keeping!) without having to carry around physical binders of products, and the best part, he can browse this forum and do a search right on the spot if he's at the store or a restaurant and has to look up a brand name or product.
Plus, you get super, awesome, mega-special bonus points for being coolest mom ever. I've been reassured this by my nephew.
I think Feria is good, too: I read somewhere on this board that someone called them and got the a-okay, and I use it about once every two months to get a solid red base in before I layer in the purple.
That's what gets me -- the planning. I have to continually reassure my friends that it's okay they don't have anything gluten-free for me, and that I can bring my own, but it definitely gets hard to work around. It just gets easier to stay at home, which is bonkers on my social life. ^^;
I have enough problems with the accidental glutenings that there is nothing that makes me want to cheat. Seriously. I feel bad enough to want to take a handful of Vicodin and call it a day. I can't imagine willingly putting myself through it for a few minutes' pleasure.
If it's any consolation, this was a much more informed email than I got from Loreal when I asked them very specific questions about their lip gloss. ^^; Loreal basically told me to "read the ingredient list" -- nevermind the lip gloss had no ingredient list either on the tube or the website!
This was a much better answer the second time around, albeit an ignorant one. I give her credit for trying.
I'm suffering another gluten attack, this one insidiously bad and lasting about 2am to... well, still going. (It's 4am, do you know where your bathroom is?) The only "new" things I introduced today is a different organic brand of coffee and Downy Febreze dryer sheets.
I did a search on coffee and gluten, and I stumbled across a site that claimed that "All coffee is gluten free". That's it. No further explanation beyond a brief bit about what gluten is, and that's all.
I'm so steamed. Research on these forums show that not all coffees are gluten free, as some manufacturers dust their lines with flour to keep the beans going smoothly. Oils can have gluten in them to flavor the beans. My reaction today sure feels like a gluten-reaction -- my "food upsets the tummy" reactions appear to be very different than gluten attacks to me -- so to claim on an answers site flatly that "All coffee is gluten free" is total bunk, and misleading to us poor learning people besides.
Okay, I won't be better 'til this passes, but I feel a little better now.
As an update to this: Husband and I have talked it out and we're going to wait at least a year, if not two. So for everyone else out there trying, good luck! I'll be watching this board tons to pick up any good advice before we try ourselves.
Just out of curiosity, is it wheat or buckwheat? Buckwheat is gluten-free, so you'd be safe! Also, is the material porous and/or prone to getting moist when heated? I'm actually thinking that the "enriched" rice, when it's getting warm, is coating all over my hands through the very loose weave of the sock. Then I eat something or whatever.
So far, it seems to make the most sense. It's one of those cases where the Evil Rice Sock is supposed to be a help to a glutening, only to be causing a glutening, so I use it more to help!
And no, no, no, it is NOT in our heads. (Although I'm sure he's just trying to be helpful and fix the issue -- my husband hates the fact he can't make it all go away for me, which is funny because he is at least intolerant of gluten, too!)
Do you drape the heating pad on your abdomen when you're feeling glutenous? I do, and I find it's a great comfort. I'll even sleep with it! But be careful -- last night, about 3am, I was so miserable that I didn't pay attention that it was too hot. I burned the side of my hip!
I was! I mean, aside from feeling wrecked like you usually do afterward, anyway, I was, but now I'm suffering the same symptoms all over again. I'm so upset.
I ate out again, but this is a place that is usually very careful about my food. Is it possible I just got bad luck again?
The thing is, I've had cheese before (the only thing I had tonight, on crackers) and been just fine, but I had brie cheese tonight and I started the symptoms. That said, since I run a 5-hour cycle, as it were, I don't think the cheese would have done this.
Anyway, I'm ridiculously depressed over this and worried that since I don't have an official diagnosis -- from doctors, you know -- that there might be something else going on. I was completely fine for like a solid month, though! Why would it start all over again based on something I've been eating the whole time just fine?
Conversely... I understand that Minute Rice is NOT gluten free. If you use it to stuff a sock (for a heating pad), and then heat it up, and handle it, will the gluten get on your hands from that? I've been using that to soothe my tummy the past few days.