I was diagnosed in september and took until february to feel 100% again. I was never so strict about a diet during this time, at almost all my meals at home and only at at restaurnts with a dedicated gluten-free menu, made it difficult sometimes going out with freinds and while my fiance has been supportive a main point of contention between us is that I am too high strung over this whole thing. For example he thinks if you read a label and all the ingreidents are gluten-free but the label doesn't say it, still ok to eat. At restaurants just let them you have it and just trust whatever comes at me. Recently we went away and we stayed at all inclusive hotel and i just ate at the buffett: salads, rice and whatever looked ok to me. I was fine while I was there but when I got home, my stomach was such a mess. The other thing that I did for the first time there was have vodka after reading a lot of articles saying it should technically be ok since its distilled. Like i said I dont seem to react to gluten immediately it seems like it is days later that i get sick so it feels impossible to back track and figure out exactly what went wrong.
I know I got a little too adventurous with a few different things at the same time (just wanted to be normal for 1 week out of my life!) but I was hoping for some help: 1) Do I always have to be so neurotic with labels, and only have it if they label it gluten-free? 2) whats the rule with natural flavors? i dont know what that means! is it ok or not? Same with food coloring. 3) I am really not that big of a drinker I actually just prefer a glass of wining if anything at all but if i do go out with my friends or at a wedding or just want a drink, what am i allowed to have? Was it a huge mistake to have vodka? 4) How strict do i need to be at restaurants? Can I have fish if I just ask for it with lemon on the grill? Or should I just not eat at the restaurants that have waiters that stare at me like I have two heads when I say I have gluten allergy?
Sorry I know this is a lot. I am just feeling overwhelmed right now. Trying so hard to find a balance. Thanks for any advice! really appreciated!
There are many, many foods which are actually gluten-free, but do not say so on the label. Putting "gluten-free" on the label opens a company up to possible litigation if an ingredient they bought from somebody else was contaminated, and they didn't detect it because they don't test. Many food manufacturers have a policy to clearly disclose any gluten in the ingredients list. Click here for a list. I trust those companies.
While "natural flavors" can contain gluten, they very rarely actually do. The most likely source would be barley malt, and that is a relatively expensive ingredient, so it is usually explicitly declared as "malt flavor."
If there were wheat in it, in the US (and Canada) it would be required by law to be disclosed as just that, "wheat."
It would be rare to find a "natural or artificial flavoring" containing gluten (a) because hydrolyzed wheat protein cannot be hidden under the term "flavor." and (b) barley malt extract is almost always declared as "barley malt extract" or "barley malt flavoring." For this reason, most experts do not restrict natural and artificial flavorings in the gluten-free diet.
Gluten-Free Diet - A Comprehensive Resource Guide, published 2008, page 46
Note: As of August, 2012, Canada requires ALL gluten sources to be explicitly disclosed. Some foods packaged before August 4 may still be in stores.
Food color is gluten-free. Some people react to certain dyes, most commonly red, but that is not related to celiac disease.
Any distilled alcohol is considered gluten-free. The gluten molecule is too heavy to transfer into the distillate, but some fragments may. A small minority of us react to some grain alcohols. If you are able to call a brand, Smirnoff is made exclusively from corn.
If you refuse to eat foods not labeled as "gluten-free," NEVER eat at a restaurant. If you won't eat foods made in a shared facility, NEVER eat at a restaurant. If you do decide to eat out, learn that in most cases, the wait staff don't understand gluten-free, but will understand a food allergy. The big concern is wheat, so if you describe your condition as an allergy to wheat, they will probably "get it."
Peter Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. Type 1 (autoimmune) diabetes diagnosed in March 1986 Markham, Ontario (borders on Toronto)
Just to add to the above: if you eat at a buffet, you should expect lots of cc. People balance the bread on the edge of the plate and it falls in the " safe" fruit salad. They pick it up and you have no way of knowing the crumbs that lurk there. Sometimes a serving spoon is missing and someone may use the spoon from the couscous ( gluten) to scoop some rice. You don't know how the food was prepared in the kitchen either, unless you ask. They could have blanched veggies in the hot pasta water when in a hurry.
If you are going to eat at buffets and restaurants without checking on how food is made, you certainly don't need to worry if your grocery purchases say gluten-free on them.
"We've waited 29 years for this and not even a Giant can stand in our way." - Mayor Sly James
Just my two cents, since everyone has already had such wonderful things to share, keep in mind that the FDA has released no official standard in the US for what gluten free means. Which to us means that those words on a package means pretty much nothing. Just because those words are on a package, doesn't mean you don't have to read the ingredients. Some companies define it differently than others, some test to 20 ppm and label things gluten free that are from shared lines. Others label things gluten free only if they are from gluten free facilities. It isn't about the label, it is about knowing the company you are buying from.
And, if you are going to be neurotic about something, be neurotic about learning how to order food in a restaurant. All fries are naturally gluten free, but that doesn't mean that all, or even most restaurants serve gluten free fries since many use the same fryers for both fries and breaded items. Some, as pointed out, may grill bread and meat on the same grill. Some won't. Is the gluten free pasta cooked in common pasta water? A sure sign that you should probably just leave and not even order a salad. Do they know that if they accidentally put croutons on the salad that picking them off could make you deathly ill? You need a new one, dressing on the side. Is there soy sauce with wheat in something that no one has considered? There are just so many things to cover about restaurants, but it is just all little things. Be neurotic about it! And don't say gluten allergy. While you can say that you eat gluten free which they will understand, explain it as a wheat allergy. That will often get them to take it far more seriously than you being one of those "fad dieters."
"You don't look sick or anything"
"Well you don't look stupid, looks can be deceiving."
Thank you all so much for the advice!! It has been very helpful hearing from other who understand whats its like. I guess more than anything I was loosing will power to keep up with all of this. But feeling a little bit better and in control. Thanks again!
Can I add something? I do eat in restaurants, and not only gluten-free certified places (however there are lots in Italy where I live). When I do go to a 'normal' restaurant, I tell them that I am celiac and ask them what I can have on the menu. The answer tells you a lot. The waiter telling you "not the fries because we share the frier for everything" or "this, but with no soy sauce because that will not be ok" or "you can have the risotto, we'll use a separate pan" without prompting, is a sign the restaurant can (usually) be trusted or that you are minimizing the risk. Blank stares? Bad news: better change place. In a couple of cases, when I was with friends and couldn't leave without looking a spoilsport and was hungry enough to eat (but I've learned to go around with gluten-free snacks) I resorted to explaining exactly what I need and ordering the simplest possible thing, usually a grilled steak with roast potatoes. In Japanese or Chinese places I stress "No soy sauce, no marinated foods" which means sometimes plain boiled rice and nothing else, but better than fasting. You are NOT eliminating the risk, but you are trying to contain it.
But never, ever, ever eat something just because it looks OK to you or without specifying to the cook or to someone who looks responsible enough that you are allergic or whatever sounds best and that your stuff needs to be cooked separately or at least, far away from flour and breadcrumbs. (This pretty much eliminates buffet food apart from fresh fruits (uncut) and possibly roast meat and fish, since if it's sliced or served in front of you and there is no bread around, chances are that it's safe) I've been there - and been sick. As someone else said, you have no idea of what happened in the kitchen.
A word on alcohol. My gut is very sensitive after just 5 months gluten-free. I can't have red wine, I don't trust liquors, even if they're supposed to be gluten-free. However it seems I can tolerate moderate quantities (a glass) of champagne or sparkly wine or white wine. Take it easy, and if you don't want to say "no thanks", say yes and take a few small sips.
And something else: if you have to trust an unknown restaurant try going for a small family run place rather than a massive operation. They usually take the time to listen and understand (they need the clients).