Obstacles Faced By Celiacs

[lovegrov]

The primary reason for the higher price of gluten-free items is simple -- as with any other product, the more you can make and sell, the cheaper the price. Volume brings down the price ( I work in publications. 1,00 copies of an item might cost, say, $3,000, but 5,000 copies aren't $15,000, they're more like $4,500). Even the top selling celiac product in the world doesn't come close to selling as much as a mediocre or poor selling non-gluten-free product.

richard

[Jeap]

I think you have gotten a good idea of the obstecles.

I would like to reitterate that the bathroom think really is a problem. I am much better now. I don't have the emergency rush as I did before the gluten-free diet. But getting that thru to my head has been difficult at best. If not careful, I will find my self panicing for no reason. I never had a panic attack until this stuff hit and bathrooms were not always available. It is really a problem.

Eating out is also a great concern. I use to eat out all the time. Now when I do it is usually to the places I belive I can eat and not get sick. I try new places very seldom. Oh and if I know they have a nasty restroom, forget them - I may need it and no since in taking the risk.

thanks

[Professor]

I've been at this for a long time, but the SOCIAL ISSUES are still a problem.

The isolation -- I often have to skip things (our first-of-each-semester potlucks at work, for example). Otherwise, I stand around with a diet beverage in my hand and people just have to know why I don't want to eat. (I've had too many bad experiences with cross-contamination, so I don't eat out anymore.)

And yes, I'd like to just go to a restaurant someday! ANY restaurant I want -- just walk in, sit down, and order!

Another thing -- people (family and friends) tend to make far fewer invitations, since I'm such a "hassle" to prepare for (I also can't touch dairy, soy, and a few other common ingredients). More isolation. This has changed my life in so many ways. Yes, I always offer to bring my own meal -- I mean, I just like attending whatever the occasion is.

Finally, there are a few who do the raised eyebrows when you have to explain it for the first time and they haven't heard of it -- sort of disbelief, or maybe it's all in my head? Many people are just clueless about medical things, unless they have personal experience. Argh. I'd better quit ranting!

Patty

[catfish]

Typical scenario;

I am out running errands with my family, it's getting too late to cook at home (everything takes longer to cook gluten-free since instant foods like hamburger helper aren't an option) so we'll find a place to eat. I look over the menu and find one or two things that <i>might</i> be gluten free. The waiter comes over and asks what we want. I mention that I'm allergic to wheat, rye and barley (it's easier than explaining what celiac disease is) and ask if the marsala sauce has any wheat flour in it. The waiter immediately response, "Oh, no- no wheat flour."

Now you might think this answer is adequate, but being more experienced with this sort of thing I ask again, "There is no flour in it? For thickening? How about in the seasoning mix?"

They respond sharply, "No, of course not!"

So I triple check, "So the chicken is not soaked in a marinade or seasoned with a seasoning with flour in it, there is no chance that any of the sides have wheat flour or barley or rye products in them?"

"No, I'm sure it's fine but if you are really worried I'll check with the kitchen staff"

They check with the kitchen staff and the answer is that it's fine. No wheat, no rye, no barley.

Okay, so I order the chicken marsala. Twenty minutes later they bring out the meal, and of course there is a big slice of bread on the plate that wasn't mentioned on the menu. I ask for them to make it again since I am "allergic" to wheat. They respond that it is WHITE bread, not WHEAT bread. Then I have to explain that white flour is made from wheat. You'd think that they'd know this, but I'd say at least 40% of the people in food service don't seem to make that connection.

So another 20 minutes later my family is almost finished eating and I am just getting my meal. I take a bite and find that the chicken has a bit of a crust. It's made with bread crumbs.

Now I can't eat it, it's been made over for me at least once already, and the kitchen didn't think it would be a problem because the chicken isn't coated with flour, it's coated with bread crumbs.

So I end up getting sick from the bite I took, I don't get to eat anyway because it's too late and too risky to try and have them make it again (who knows what else they'll mess up on) and so I just go hungry for the night.

I've had waiters tell me that their pasta is safe since it has no flour in it, it only has semolina.

I've had arguments with kitchen staff over whether soy sauce has wheat in it.

The people cooking the sweet potatoes don't even know that struesel is made from flour and oats. How is that even possible?

And how do you ask the waiter of a Mexican restaurant whether the enchilada sauce is thickened with flour when they barely speak 50 words of English? I am planning on taking up Spanish just so I can eat at Mexican restaurants again.

When I go to other people's homes for dinner, I bring my own- I don't even tell them about my restrictions because there is no way I can expect them to cook for me. I can barely manage to make a safe meal for myself after studying it for a year, how can I expect them to do it on a day's notice? My own mother still hasn't figured out that I can't necessarily have any brand of barbecue sauce you pick off the shelf... "But honey, I didn't even touch the flour canister when I cooked it!"