celiac3270

I've gone over six months without dramatic symptom improvement. I don't think symptoms are good at finding out if you have the disease or not.

Very true, Jessica. I'll have to start my own: I'll have food by george and chebe......lol.......even though I can't eat that stuff anymore. Bring a pad and pen so you can report back with the great foods!

I don't think that's something that'll be happening soon, but once places here figure out there would be money to be made by doing that, they might. Uhh.. yeah, maybe that's a bit jaded view. =)

But very true -- we're finding that more and more people have celiac disease. If 1/200 have special dietary needs, restaurants are bound to be more accomodating. After all, these chain restaurant names we're throwing around on the board are getting a lot of business from celiacs, just because they can tell you that the meat isn't contaminated and the vegetables aren't covered in gluteny toppings. Celiacs provide good business and if they do it for the money or our health, they're doing it, so it doesn't really matter. Sorry for rambling.

Mine says 48, too, and doesn't contain natural flavors. Tropicana OJ w/ calcium is gluten-free. Thanks again, Joanna.

You're definitely more sensitive now that you're gluten-free. Additionally, some can get sick from simply inhaling gluten. Making the foods, perhaps you were inhaling something--like a flour or something.

Good luck! We'll get this stuff under control....keep us posted.

-celiac3270

That's terrific! Can we look forward to this soon? I would think so. We've made such advances in awareness over the past years. Although this probably isn't a change that'll occur in the next year or two, I know I'll see the day when waiters and chefs immediately recognize celiac disease and know about the gluten-free diet.

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I might have said it the wrong way when I said that I just called it an allergy. When I'm dealing with people who need to know (like waiters at restaurants, family members, etc.), I give them the whole story. It's just with people who I really don't want to talk to about celiac disease that I call it an allergy.

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Ooooh...that's great! Thanks for sharing!

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Yeah.....I told relatives before going to their house for a "family reunion". They had Classico tomato sauce, Kraft singles cheese, Heinz ketchup, mustard, gluten-free hotdogs, kinnickinick bread, gluten-free pasta, and other things I have forgotten to mention. They also had a cheap pot, spatula, sautee pan, and flipper thingy. If I had gone there and they hadn't known about my celiac disease, there would've been nothing for me to eat except for fruit. You need to tell them somehow--then they'll probably go look it up somewhere.

Hmmm.....I'll talk to the doctor about enzymes. I am very pleased with how seriously he's taken this--not just saying "keep doing what you're doing and we'll see in a month."

The fact that you're free after seven months makes me feel good, Judy---maybe there is hope that by my eighth month, or so, I'll be at least on the road to recovery--I guess it's good that I'm trying to change my diet around to make symptoms better.

Yikes...forgot to mention that genisoy bars are only gluten-free if it's the PB chunky southern style and another pb kind with honey.

It's been 5 days.........seems like everyone else is confused, too....lol

Envirokids has a frosted flakes type thing that's gluten-free......cereal is good, I guess, cause it doesn't require refridgeration.................................

How 'bout genisoy bars? They don't need refridgeration and they're a good source of a lot of vitamins/minerals/protein. PB was a great suggestion -- never would have thought of that. Of course, canned fruit is good.

Tuna? They have those tops like soda cans, so you wouldn't need a can opener.

A lot of the good ideas have already been mentioned, so there isn't much left for me to add.

-celiac3270

Ooooh.....sounds great.....a lot of celiacs from Georgia on the board......too bad it's so far from me.

Alexolua: That's interesting (aspartame)....I thought that there was something bad about aspartame and artificial sweeteners that was bad......actually, I think I was thinking of cancers or something with large quantities of it. Thanks for the heads-up; I won't be drinking that.

Karen: Thank you for sending that...I just checked your e-mails and I got them. I'll make sure I read those.

Ryebaby0: I've heard a lot about that book.....and I was thinking it might be a good idea--then I went to some site and saw all the ingredients forbidden--it seems very difficult cause it cuts out all the stuff that is used in gluten-free products (for example, arrowroot). I will be staying away from the Crystal Light.

Once again, thank you all, for your responses!

-celiac3270

I sometimes use the medically incorrect "allergy" term when i don't want to get into something long. I find that when you start throwing around genetic disorder and intolerance, it gets complicated.........depends who you're dealing with

I have Adobe--I got to the main site, but then I couldn't open the food list....it said something about the file not containing "&pdf" or something.......I have opened this list in the past--dunno what's with that....

Right now, I think, the doctor finds symptoms the most important thing. Besides, if I'm not vomiting up my food, it's easier to gain weight.

Digestive enzymes....we've talked about that---we're just gonna see what happens with the sugar.

I don't know how much he explained -- I didn't have an appointment, but he talked to my mom on the phone. She explained to me, so I don't know how detailed he was.

Thank you, Karen, for your words of encouragement

I'm sure nearly everyone here has heard me complain about symptoms many times before:

Had symptoms including abdominal pains, vomiting, nausea, bloating, gas, loose stools, low weight, very loud stomach noises (gurgling and rumbling), etc. since first grade--I'm now going into eighth grade. I was diagnosed about 6 months ago with celiac disease. The diet has eliminated much of my gas, but I still have abdominal pains, still vomit, still am in the same weight percentile, and still get stomach noises and bloating when I get sick. My primary symptoms include vomiting and abdominal pains. I get them at least once a week, but usually more.

So, six months ago I cut out gluten. Helped a little with gas, but did nothing for my primary symptoms. I switched to a new Celiac doc. who seems to know a lot about this and I was told that starting today I should cut out sugar (hard to digest) and acid (tomato sauce, ketchup, orange juice, etc.). My problem has been with digestion. The doctor said that the abdominal pains come from food not being digested. My vomit nearly always contains chunks (my apologies for being too descriptive).......usually my dinner coming up....that I ate six hours ago.....the food isn't being digested. Sugars, starches, and acids are supposed to be hard on the digestive system. So I'm not cutting out as much sugar as possible and as much acid as possible. The doctor also recommended little things such as, if I eat pasta, make sure it's cooked till it's really soft--otherwise it's hard to digest. With apples, don't eat the skin (hard to digest). Anyway, this is really cutting out a lot for me......I used to drink a lot of OJ (acid), soda (sugar), and Crystal Light (artificial sweetener?). That pretty much leaves me with water. No tomato sauce means no more Chebe (pizza), which I ate at least once a week....much less starch (and starches consist of well over 1/2 my diet), etc. I'm not trying to complain, cause if it makes me better, I'll do it. Has anyone else cut out things like this? Is there anything else they'd recommend eliminating? I've discovered that dairy is not a problem for me anymore -- but I guess yogurt and ice cream are off limits cause of sugar, anyway -- so I don't need to cut dairy, I know. Does anybody know of anything, such as drinks that don't contain sugar? Crystal light contains some artificial sweetener, I think....are artificial sweeteners acceptable on a sugar-free diet? Finally, is there anyone out there who's been dealing with symptoms for a long period of time despite tremendous adhearance to the diet? Anyone who had them for a long period of time and is now fine? If so, why did you get better and how long did it take? I'm so used to being sick that it seems almost normal, now. I've actually been really happy to have the Olympics on cause when I can't sleep with abdominal pains or vomiting, there's something to watch at 2:00 AM. Thank you for any replies.........to symptoms, success stories, or food suggestions.

-celiac3270

Thanks for the info.....that's what I thought, Gretchen, but I hadn't read anything about it, so I didn't know for sure. Jill, nobody in my family has had a biopsy. My dad tested negative in the bloodwork, which makes a lot of sense. Neither he, nor anyone else on his side of the family show any signs of celiac disease. My grandma has bloodwork done--negative. Mother had bloodwork--negative. Brother had bloodwork--twice--negative. Nobody has had a biopsy....and I know that there are relatively common cases of neg. bloodwork, pos. biopsy.........so he probably should've had a scope since we had such suspicions about him. Once we get my symptoms under control, we'll talk to the doctor about my brother......he seems to be really on top of things and knowledgable, so he'll probably know what to do about all this.

If you think your daughter has it, definitely test her. Since you have symptoms, you should be tested, too. If it turns out your daughter has celiac disease, then everyone in her family should be tested, regardless of symptoms (brothers, sisters, uncles, aunts, grandparents, parents)....it's likely that if she has it, someone else in her family will have it--after all, it's genetic, so it's passed down.