celiac3270

Open Original Shared Link is their website. If there's no healthfood store in the area that carries it, you have two options: to bring in some information or a picture or whatever about the product and ask the healthfood store to stock it, or to order it from one of a multitude of sites that carry it. Since Tinkyada is a very common name when it comes to pasta, just the way Kinnickinick is for bread, you should be able to find it at almost any online shopping place for special diets or celiac.

Not me--

But I can say that the majority of celiacs are asymptomatic, which is precisely why most celiacs aren't diagnosed, and since they don't think anything's wrong with them or their doctors don't check for celiac, most of the people here on the board are symptomatic celiacs.

It's definitely possible and very likely that you can have celiac even w/o symptoms-- after all, there is 1 out of every 130 people that have celiac.

With my symptoms, they used to always start in late afternoon or evening: 4-8 PM. I've noticed, though, that since being gluten-free, I can feel if I'm gping to be sick later in the day by how I feel in the morning. Sometimes it's stomach pains (mild, but there), more often it's nausea and a lack of appetite. But I've noticed that how I feel in the morning generally reflects how I'll be in the afternoon--only if I have mild symptoms in the morning, they get much worse by evening.

I entirely agree with Mark. The manufacturers completely take advantage of the fact that we have no choice but to make it ourselves, buy their product, or buy the equally overcharged product of the competitors.

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Yes! Here we go--after a bit of searching. The article was from WebMD, posted by gf4life (Mariann). Anyway, the figure is actually 20% -- I would've guessed 25%, which is slightly high, but anyway, I found the actual #, yay! Anyway, this probably helps to answer your question. Definitely read the article--fascinating that it could be that high. This makes you wonder if maybe you're being contaminated, too.

Yes--I actually think the number was higher, but I wanted to play it safe, so I lowered my estimate a bit--I can't remember where I saw that, though!

Which chips did you try that had barley malt?

Everyone I have met have always been supportive and understanding. I suppose I am lucky that I do not have extreme symptoms like some of you. My joint pain and digestive disorders cleared up after being on the diet for 6mos - 1 year.

I suppose I responded because I have never heard other Celiacs belittle or berate other Celiacs. Is this common?

I've been around supportive/understanding people too--for the most part. Everyone in my family has been supportive and understanding--trying to learn a bit about celiac disease, etc.--my 80-year-old grandparents started bringing in gluten-free foods from a healthfood store in CT that we couldn't find in NYC and mainstream gluten-free products--in GREAT BULK. Even at school kids have been really nice--of course, there's the occasional: "I'd kill myself if I couldn't eat pizza." Or, "You can't have this either? That sucks!" But they've been nice about everything.

At camp, I encountered some less nice people who would make fun of it (and a lot behind my back, I heard) or wouldn't take it seriously. They were really cold-hearted, but many teens can be that way if they don't understand it or don't care to. I doubt that many adults are like that, though.

The endoscopy seems a little scary. Is it? My Dad and sister had this done and it made me anxious just hearing them talk about it. I read about it in a book last night and I thought I was going to faint.

I wish I could start a gluten free diet now. We won't have any health insurance for about 2 mo. yet so I won't be getting the tests done right now because we can't afford it. I was wondering if I just cut down my gluten intake, would the tests still possibly show up positive?

Unless you're planning on Enterolab testing, which most doctors will not accept, you shouldn't cut back on gluten. There's nothing wrong with experimenting with gluten-free foods and such so you will already have found some good ones before you really have to start the diet, but you shouldn't cut back since you want to get accurate results.

Try not to worry too much about the endoscopy. First off, you don't even need to do it--you can just get bloodwork done. Second, I'm only 14, I've had two performed already, and it's seriously not that bad. Also, both of my experiences were different, since they were at different hospitals with different doctors, so I'll give you both of them. One more thing, I'd advise you not to read too many articles and descriptions of the endoscopy. I did before my first and it got me really scared--it wasn't bad at all.

ENDO #1 -- The first time I was put out completely. Basically, once you're in your garb and in the room (which I should warn you, looks very intimidating when you first walk in), they put these pads all over your chest to monitor stuff. Then they just put the needle in and my eyes got really heavy--I didn't even realize I was falling asleep--I just went out, then when I woke up, I felt fine--developed a slight sore throat later, which I only had a day or two. I was pretty hungry...and I started the gluten-free diet right there with rice cakes...lol. BTW, this endo. was for diagnosis

ENDO #2 -- Hurt a little more because the doctor was more invasive. Checking for a lot, making sure intestines had healed, etc. This was a couple months ago--maybe 4-6. This time they used gas--they basically put a mask over your face like the ones you'd see firemen wearing or whatever and it smells funny and then you feel like your head is spinning. If I opened my eyes, I saw the nurse and my mom looking at me and spinning. And eventually they closed and it was really weird cause I kept hearing my mom going "Love you, sweetheart" and then my brother's evil laugh (and he wasn't even there). It was really freaky cause it was like a broken record...then I felt like I was flying through an endless tunnel before I completely fell asleep from anysthesia that they gave me (through a needle). It wasn't that bad, though. Anyway, after it was done, I had a stomach ache, which the doctor said was from all the air that got into my stomach and intestines--so it was like gas pains i guess in my stomach. But I lived ...lol. A little sore throat, again, from the tube, but I brought tootsie pops to suck on (gluten-free), so I was fine

Try not to fret and don't read up on the scientific explanations until you've completed the procedure. Good luck in getting a diagnosis.

Sure--it could be. Somebody posted an article here that something like 15% of all foods labeled gluten-free contain trace amounts of gluten--or some figure like that. It's quite scary, actually. The companies, though, cannot simply write gluten-free on a package of spelt bread, though.

Then, of course, companies such as Lays could have contaminated products. Some of their products claim to be gluten-free--this is slightly different, I guess, though, because they don't actually label the packages as being gluten-free....it can definintely happen, though. That's why if something bothers you every time you try it, just cut it out of your diet.

It's gluten-free and wheat-free. I know those crackers--I eat them pretty often. They're Edwards and Sons Brown Rice Snaps (cheddar). It is confusing, but I've seen a couple of products labeled that way.

I've never actually dealt with enterolab, but I can give you the general consensus with the latter two questions:

I don't know specifically about Buffalo, but most doctors do not accept Enterolab results. Second, unless you've been on the gluten-free diet for a LONG, LONG, time, being gluten-free won't affect the results. So if you've been on the diet for five months or something, you'll still get accurate testing.

KL Terry,

Here are some support groups in Pittsburgh. I found them at the site here, Open Original Shared Link, which provides contact information for support groups in US states. Here's for all of Pennsylvania: Open Original Shared Link

Group: Greater Pittsburgh Celiac Sprue Support Group

City: Pittsburgh

Contacts:

You could try eliminating gluten to see if it makes a different, but you're not supposed to run formal tests (bloodwork, biopsies, etc.) until babies are a certain age--I'm not sure exactly what the recommend age is.

Yes--whey is just a term for...something in milk...I'll look it up in the dictionary

the watery part of milk that is separated from the coagulable part or curd especially in the process of making cheese and that is rich in lactose, minerals, and vitamins and contains lactalbumin and traces of fat

I haven't verified if the sauce is gluten-free, but if you have heard it is and now know that whey isn't a problem, you're fine. I know the Kraft Mac & Cheese sauce packet is gluten-free, too.

P.S. the sauce packet in Kraft Mac & Cheese is gluten-free. Additionally, you can buy the Kraft cheese powder in round, cylinder-like containers (that you shake, etc. kinda like with some spices) and then you don't need to even buy the box of wheat-filled noodles. You can order it directly from Kraft if your grocery store doesn't carry it.

Yep--you did:

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Oh yeah-- I remember you posted one a long time ago....now, if only I could remember where--I'll run a search and see if I can find the thread.

I was poking through my favorites today and thought it would be a cool idea to compile all our links into a thread. This would be helpful for newbies and I'm sure we'd all find some good ones that we hadn't seen before:

Eating Out

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gluten-free Lists

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Online Shopping & gluten-free Products

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Message Boards

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Miscellaneous

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For my b-day yesterday, I had a vanilla cake from Arrowhead Mills. I had been extremely pleased with all other products by that brand, and was slightly disappointed by the quality of their cake. It was of similar consistency to a real cake, but slightly dry--it was pretty good, but a cake I tried 5-7 months ago from the gluten-free pantry, Danielle's chocolate cake mix, was better--and I don't even usually like chocolate cake that much.

Anyway, it was interesting to get perspective on the quality of Danielle's mix having tried another--both were good and I'd recommend the cake from Arrowhead Mills to those who like a vanilla cake, but to those more impartial about that sort of thing, Danielle's is better......just thought I'd post my reviews

Lol, at all the mentions of peppermints. I thought it was just me! I have Brach's peppermints stuffed in every pocket, bag, car.....i laugh that they're like cigarettes, I go nuts if i can't find one when i need one!

I use peppermint Altoids. I have boxes all over the place. One on my desk at home, one in my desk at school, one in my backpack, and a couple more in a drawer as reinforcements for if I run out in any of my locations

I've heard stuff about this and though it can be safe, there is a chance that some seeds are in it. I think there may have been a post on this some time in the distant past. The safe and forbidden lists at celiac.com also say that the ingredient might contain gluten:

https://www.celiac.com/st_prod.html?p_prodid=185

Forbidden List - Foods and Ingredients Not Safe for a Gluten-Free Diet 

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I've heard stuff about this and though it can be safe, there is a chance that some seeds are in it. I think there may have been a post on this some time in the distant past. The safe and forbidden lists at celiac.com also say that the ingredient might contain gluten:

https://www.celiac.com/st_prod.html?p_prodid=185

Forbidden List - Foods and Ingredients Not Safe for a Gluten-Free Diet 

Copyright

Open Original Shared Link attempted to post this reply, but used the report button instead:

Hello my name is melanie and I am all new to this too and i am hoping that I am replying..I have been gluten free now almost two months and I was buying the frito lay stacks and was never feeling better even though they say they were gluten-free I just decided to "when in doubt leave them out"

Certain companies, such as Kraft, promise to list gluten on the label. If it's in natural flavors, it will have wheat or whatever in parentheses.

Other than that, it's either that everything on the label is fine and not questionable (aka: no artificial flavors/colors, no natural flavors, no modified food starches, etc.) or that, most likely, we've called companies or e-mailed and received lists, etc.

Mariann provided you with some excellent links.

Also, try Open Original Shared Link. I love the pizza you can make using the bread mix (bread mix makes a better pizza than their "pizza crust", so try this one). Of course, there's no replacement, but Chebe's great. You can also make bread sticks, etc. using the mix--just not an actual loaf. PLUS, FREE SHIPPING! ...and if you like it, you can order it in bulk for discounted prices.

Once you've been on gluten long enough, blood tests would test negative for celiac. So, if you're to be tested for bloodwork or biopsy, you need to have been on gluten for while.