celiac3270

It could always be a reaction from gluten you had not yesterday. I get symptomns sometimes a week later

True...I've had that happen

When I have to eat out at work I opt for places like Red Lobster where I can eat peel and eat shrimp, crab legs or lobster with butter...it's tough to avoid those biscuits though! I have also had them cook a plain chicken breast with plain rice and veggies (no sauce) and I salt and pepper it at the table.

Be careful about rice -- although rice itself is gluten-free, be sure that it's not cooked in chicken broth....make sure it's cooked in water.

From you name, YankeeFan, it seems as if you live in NY. If so, here are some restaurant links: at Silly-Yak.com they have restaurants that are or accomodate to gluten-free eaters in NYC:

GLUTEN FREE IN NYC!

The restaurants listed below have been known to have items that are appropriate for a gluten-free diet with intelligent and helpful staffs, but please note that menus, chefs and staff are subject to change - and questions must still be asked.

Enjoy!

RESTAURANTS AND BAKERIES:

These recommended restaurants are part of the Gluten-Free Restaurant Awareness Program

***Risotteria 270 Bleecker St. (near John's Pizzeria) 212-924-6664

***Gus' Place149 Waverly Place (6th Ave.) 212-645-8511

***BEST ON LONG ISLAND! Caffee Baldo (Italian and Gluten Free) 2849 Jerusalem Ave, Wantaugh 516-22-22ZZ

***American Park at the Battery (across from 17 State Street) Phone: 212-809-5508

www.americanpark.com

Joseph's Gluten Free Bakery, 1712 Ave M Brooklyn, (718) 336-9494=20

www.joesephsorganic.com

Gabriel's Dessert Boutique, 941 Manor Road, Staten Island, NY (718) 477-1414. Wide variety of gluten-free pastries, bread & pizza dough.

Sacred Chow - Hip and Vegan, 522 Hudson Street (212) 337-0863. Fabulous gluten-free brownies, cookies, and energy bars.

www.sacredchow.com

ANGELICAS - Best organic restaraunt in the city! (house dressing is gluten-free) 300 E. 12th St. (bet 2nd & 3rd Ave) 212-228-2909

BROOKLYN DINER (pricey but very good) on 57th St just west of 7th Ave.

COFFEE SHOP on Union Sq. W. & 16th St. They have Brazilian Cheese Bread, which is made with tapioca flour.

BRIGHT FOOD SHOP (Mexican dinner, fun atmosphere) 216 8th Ave @ 21 St

IPANEMA PLATFORMA (Brazilian BBQ) (57th St/btwn 8 and 9th Ave) all you can eat flat rate. Pricey but worth it!!!

AVRA - whole fish - 141 E 48 St

BELMONDO 98 Ave B (steaks) French bistro 358-1166

LUCIEN - filet mignon - (1st and 1st )

OTHER FOODS - 12th (betw B'way & Univ)

ROSE OF BOMBAY (Indian) 326 E 6th St. gluten-free menu

DRUIDs - 307-6419 ? filet mignon - 736 10th Ave (50 & 51)

STARDUST DINER - 52 & 7th - burger or Philly steak sandwich w/out bread

SPRING STREET NATURAL Spring and Lafayette

PEASANT - (Nolita) grilled fish, etc. Everything roasted on open flame. 194 Eizabeth St (Prince & Spring) 212-965-9511

OYSTER BAR - 42nd St and Vanderbuilt (GRAND CTRAL TERMINAL) 212-490-6650

LE TABLEAU - 5th betw A & B - steak au pauvre

EL QUIXOTE - 23rd & 7th - steak / lobster

NEW DELHI INDIAN - tell waiter gluten-free - 120 Lex near 28th - 212-725-3215

EAST VILLAGE THAI REST (gluten-free thai curry ? request "Marys fish sauce") 32 E 7th St (betw 2 & 3rd)

LUNNEYS REST - 46th off Bway ? has celiac waitresses

BROOKLYN DINER - W 57th St (W of Bway) hamburger and steam veg

VESUVIO (Bleeker bet 6th & 7th)

KATZS DELI (brisket and turkey have no added sugars or vinegar) Houston betw 1st and 2nd Ave

Suen - 13th (Univ. & 5th) - (good organic) broiled fish and veg. Great kale /squash. Ask for no sauces. Also sushi.

M&R Elizabeth betw Houston & Prince -roast chicken: $15. Side order of veggies -huge

MARE- seafood ($18-20) / live lobster/oysters - 8th & 20th. (lots of restaurants nearby)

THE DISH - Diner - nice, dark atmosphere, cheap burgers (8th and 20th St)

Centro Vasco - Spanish - lobster fresh daily - 159 W 23 (6th & 7th)

FOOD MARKETS:

WHOLE FOODS on 7th Ave and 24th St. Excellent produce. Lots of gluten-free products. Foods by George Gluten free products in the bread section.

WESTERLY HEALTH FOODS 911- 913 Eighth Ave. @ 54th St.

Commodities Organic market - 1st Ave betw 10th and 11th St.

Prana - small organic market - good produce - 125 1st Ave (6th & 7th)

Healthy Pleasures - organic supermarket w/ meat/fish, vitamins - 10th & University.

If you don't live in New York, you can check for resturants in your area at Open Original Shared Link. You said that you prefer to eat out, so I thought this might be helpful. I personally dislike eating out, so I haven't really consulted these lists and can't offer any advice....

Fortunately, I have only had to eat out once since going gluten-free (I don't like eating out to begin with, and dining out w/celiac disease scares me). I don't use a restaurant card. The one time I ate out I ate a baked potato (just ate the inside so I didn't need to worry about contamination w/skin). I also made sure that the steak didn't have any sauces put on it nor was it cooked on something that did....talking to the waiter worked out fine....it does make sense, but then again, I hardly eat out, anyway.

-celiac3270

Miss chips? Frito Lays? They have lots of gluten-free items even though they don't guarantee being free from contamination. I've had no problems:

- Cheetos

- Fritos

- Lays Potato Chips

- Wavy Lays

- Lays Stacks (I've heard, but haven't tried).

My dietician, who specializes in celiac, told me that your safest gum would be any type of wrigleys. I am a big gum fanatic so Extra is what I opt for. Hope this helps!

So did my nutritionist...Wrigley's....whenever I chew gum it's Wrigley's...I never knew about those other ones. I've had no reaction to Wrigley's.

-celiac3270

I would like to see ingredients printed in larger letters and on a white background.

The labels shoud have warnings ie contains gluten or peanuts.This is like living in the dark ages, why should we have to contact the manufacturers, whydo the children have to suffer because "mom" hasn't had a course in Chemistry!Why isn't the FDA doing more to help us??If they can put labels on beer and cigarettes, why not on labels containing food.When I hear about the children suffering I get so angry, I wish that there was more that I can do.

Judy

Nicely put...I concur...if 1 in 150 have celiac disease, it's ridiculous that you need to call all the companies. I think that the companies should have to specify -- on the label -- whether or not their products have gluten...or at least make their natural/artificial flavors a little clearer....after all, if it weren't for this board, we'd literally have to call the company of every product that passes through our lips; everything has flavorings....oops, I'm starting to ramble. A simple "gluten-free" or "Contains Gluten" would be nice for the 1 in 150 Americans that have this. As for the companies being allowed to run out their labels just because of the cost...don't even get me started on that.

-C

Not gluten-free!!!

Thanks for posting this...I had tried to access the old list not too long ago and was told that it no longer existed. Honestly, I am not a big fan of these lists....as people find mistakes in them I lose confidence in their accuracy. I prefer to find out from the actual company or from the board, although numbers to call the companies are helpful.

Scary -- very scary that the could get away with that. Gosh...makes me wonder if I'm being contaminated.

Well, all I know about intermittant symptoms is that when you hit puberty symptoms can decrease in severity regardless of gluten intake or go away entirely. This is why doctors used to think that you grew out of celiac disease.

I think it's great that you and your husband are going gluten-free. I have a comment about Frito-Lay products. If you call the toll-free customer service number on the package, they will send you a list of all their gluten-free products. Just ask. Good luck!

Get the list, anyway, but to get you started, these products are gluten-free:

- Cheetos

- Fritos

- Lays

- Wavy Lays

- Lays Stacks

Frito Lays does warn, however, that even their gluten-free products are produced with equipment that also handles non-gluten-free products, such as Doritos. Sensitive Celiacs might want to stay away from Frito Lays products for fear of contamination.

While on contamination, that is good that your entire family is going gluten-free. At least at home, that'll be helpful...first off, to avoid contamination, and second, so that you don't need to check what's gluten-free in the cabinets and what isn't.....

My parents and brother have been tested -- and don't have it. Nobody in my family is known to have it or has symptoms like it except for me. However, my grandmother on my mother's side...who came from Switzerland has osteoporosis (a long-term symptom) and has always been REALLY thin...thinner than I ever was. I think she has it, but don't know for sure. Anyway, it's not worth getting tested when you're already 80 years old...you can't turn around osteoporosis, scoliosis, thinness, and all the other things once they've progressed so far....techinically nobody in my family has it, but both grandparents on my mother's side are European (Swiss and Swedish), so it makes sense I would have it. I personally believe that my grandmother has it, but based upon solid testing, nobody in my family has it.

No one else in my family is aware of having celiac. Since there are SO MANY silent celiacs, it could be that someone has it, but doesn't know it, or that it's a recent "addition" to your family's genetic makeup.

I concur with Tarnalberry...my parents don't have it, my brother doesn't have it, and the only one who possibly has celiac disease in my family is my grandmother. Perhaps an older relative had SILENT celiac disease...after all, back in the day they didn't test for it...or even know about it (did they?).

-celiac3270

Crystal Light is gluten-free. As a matter of fact, whenever you read a Kraft label, the flavorings are gluten-free unless they say "wheat" or something like that in parens. Crystal Light has some drink mixes that aren't lemonade, but has a pink lemonade and a regular lemonade, as well.

Hi Lindsey,

Obviously, the only reason we're all on gluten-free diets is because we don't want to run into complictions like cancer in the long term. However, having "short-term" symptoms helps a lot. It takes a long time, but your symptoms will start to go away. It could take a year, but eventually they'll go away and then you're free from them for life. Having symptoms helps us, because first, it gives us good reason to stay on the diet (not getting sick), and second, in the future (once you're better), it's an indicator if you ate something with gluten...etc.

You're not at square one. About 5 or 6 weeks in, I made a stupid mistake. I was on vacation, and I had a gluten-free cereal similar to frosted flakes. Before heading to the mountain to ski, I went back grabbed a box, and took a handful of REGULAR CORN FLAKES that my brother had...I realized it half-way through eating them, and spit what I had in my mouth out. That, too, was unintentional. It didn't set me back; I never even got sick from it...don't worry about it...stress and worry is your worst enemy in making progress.

As for getting used to it and learning more about it...I've been on the diet for...maybe 19 weeks (about 5 months...wow, the time has past quickly). At first, I had no idea what to eat, and actually, thought that as long as it didn't say "wheat", "oats", "rye", "barley", etc. (one of the basic ingredients), it was guaranteed to be safe. Therefore, I made numerous mistakes in the first 1-2 weeks "on diet". I would still be doing that, today, and still getting symptoms, but I wanted to learn more about it. Read books on dealing with the diet, and most importantly, read these boards--I've learned so much here and when you have questions about something, it's easy to get a quick response. If you try hard to educate yourself about celiac disease, you'll consider yourself an expert in no time.

You said that you don't really know what you can and can't eat. First, I'll just backtrack to the basics...much of which you might already know. Obviously, wheat, rye, barley, and possibly oats (oats are debatable) have gluten. Then, of course, there are other ingredients like malt, dextrin (unless it's made with corn), and many others. For a full list, look at Celiac.com's list: Open Original Shared Link. To get there, and access lists of safe ingredients, etc., go to Celiac.com's site index. I typed up the list in tiny font so it was the size of a business card (front and back), and then laminated it, so if I ever question an ingredient (which I rarely do now), I can check if it's gluten-free. It is helpful because ingredients can be confusing. For example, malt is bad, dextrin can be bad, but maltodextrin is fine. Wheat is bad, but buckwheat is fine; that sort of thing. Of course, nine times out of ten you need to call the company to check if it's gluten-free. This is because natural and artificial flavorings CAN contain gluten, but don't always. They are in everything. One little note: Kraft says that all their colorings and flavorings are fine unless they write "wheat" or something like that in parentheses.

As for quitting, don't...after all, what do you acheive by going back to a diet of gluten. You eat normal food--with a feeling of guilt, knowing that it's destorying your small intestine. You get symptoms just as bad as they are now -- or worse. You retrogress into your previous state -- you started to heal and then you'd mess it up again. And, in the long term, you'd get cancer or osteoporosis and lead a miserable end of your life... Stick with it for another month or two at least...you'll see progress...and don't focus on whether or not your symptoms go away or stay. Look at the severity of them. You'll see that they either become less and less frequent, or they become less and less harsh. One more thing, a nutritionist that works with Dr. Greene (that famous adult Celiac doctor in NYC...aka she knows what she's talking about) warned that symptoms may even get worse before they get better...just don't give up hope.

Thanks for putting up with my rambling: now I'll move to some food suggestions:

- Cookies: try Pamela's Products -- the BEST cookies. The lemon shortbread are decent, but some people find them too strong a lemony taste. However, try the Dark Chocolate Chocolate Chunk Cookies. They are AMAZING!!! Even including regular cookies, they are the best store-bought I've ever had.

- Cookies: if your mom has 15 minutes to spare, have her make peanut butter cookies. Very good...even my aunt who hates PB liked them. Preparation time is about five minutes and the recipe calls for 10 min. baking -- it might take 15. All you need is 2 cups of PB (Skippy or Jif), 2 cups of sugar, and 1 egg (this is also good because there aren't any weird gluten-free flours and stuff...where do you buy those things?).

- Fruits/Vegetables/Meat: I eat so much more fruit now...apples, bannanas, strawberries, blueberries, canned mandarine oranges, canned peaches, etc. You're probably "chickened" out, but don't forget steak, pork, hamburgers, etc....no fresh meat is excluded. Fish are gluten-free, too, of course.

- Bread: People will say Knikinick or whatever, but I've found Ener-G to have a great bread...that's what I use...make your pick.

- Pizza: probably thought you'd never have that again. Get Chebe (you can only get it online), but buy the bread mix, not the pizza crust (the bread mix turns out better). Follow the instructions, mush it out into a round "thing", bake as instructed, and then add sauce (Classico is good), and gluten-free cheese. It's terriffic. By the way, you can get the Chebe at Open Original Shared Link. Try it...the shipping is free and once you realize that you like it, you can buy it in bulk and get discounts.

- Raisins, Quaker Rice Cakes, most things by Frito Lays (not Doritos), you can have: Lays Potato Chips, Wavy Lays Potato Chips, Cheetos, Fritos, etc. By the way, most soft drinks are gluten-free including all kinds (diet, caffeine free, etc.) of Coke, Sprite, Sunkist, Pepsi, etc. I haven't checked with the other companies. There are many gluten-free candies...I actually made a post under the "Teenagers Only Section" for gluten-free candies...check there for the complete list that Gf4Life provided.

- Genisoy Bars: good for high-fat snacks, and on-the-go meals...only two flavors are gluten-free: A honey Creamy PB Yogurt, which isn't the best, and Southern Style Chunky PB, which tastes like candy...it's great.

- If you don't want to bother to make your own Mac and Cheese and want it the quick way like you may have had it back in the day...the Kraft Macaroni and Cheese SAUCE PACKET is gluten-free. Then use your own gluten-free noodles (such as DeBoles), and you have a quick lunch.

- Foods By George: set a high-standard for gluten-free foods. Their brownies...to die for, especially when you heat them up and put gluten-free icecream (Haggen Dasz: strawberry, vanilla, chocolate...anything except for the obvious, like cookie dough) on them. Also amazing, their corn muffins...heat them up, smother them in butter, and I literally checked the box again to make sure they were gluten-free after I took the first bite.

Oops, I completely forgot that you were also lactose-free. For lactose free icecream that's also gluten-free, try Organic Soy Delicious...it tastes pretty good. The gluten-free brownies from Foods By George are gluten-free, wheat-free, lactose-free, casein-free, dairy-free, and soy-free...fine for anybody... :-)

Got to go for now, but good luck. Try to get your parents to understand, cause unhelpful relatives who don't get it can mess you up...that's good that your father's starting to get it. The worst thing is having people who don't get it: either think what's the big deal or why are you eating this way. Once again, good luck; I hope this post is helpful. Most of all, don't quit...

-celiac3270

Never mind...it doesn't really matter...thanks anyway.

-celiac3270

Thanks

Question for Admin:

Where'd you get the layout for this message board. At another site (that has nothing to do with celiac disease) I saw a message board that looks just like it. I love the layout of this board and would love to use one just like it for a website I'm making in my free time. Is there any way that you could tell me either where I could find some sort of a download to get the message board or what site you got it from (if you got the layout from a site)? Thanks.

-C

Hi. My daughter was diagnosed with celiac disease about three months ago. During the first month of gluten-free eating, she gained a full pound and ate like there was no tomorrow. The next month, she lost a half pound. This month she has only gained 5 ounces. Her moods have improved as have her bowels, but I know she should be gaining weight more rapidly. Anyone experience this as well? Any suggestions?

Hi...I've been on the diet for over four months, and want to share my weight experiences. Pre-diagnosis, I was five feet tall, thirteen years old, and 70 pounds. When I'd get sick with symptoms, I'd drop a pound or two. In the beginning I quickly gained...maybe 6 or 7 pounds. Since then I've stayed around 77 or 78. Mood improvements and formed bowels show improvment, so it's probably not some hidden gluten source. Not everyone gains weight at the start and a nutritionist I went to (who works with famous adult celiac doctor, Dr. Green) said that (this was when I was two months into the diet, already) I shouldn't expect to see a lot of weight gain in the beginning. A kid I know who's been on the diet for a year has gained around 15-20 pounds overall. I've gained about 8 pounds in four months...it should come over time....

My pre-teen is already having devastating emotional sways. She has only been trying to stay gluten-free less than a year, and she misses her "real" pizza. and more. When she cheats, her mood swings get really bad (like she's 9 going on 17!)

Okay, I have nothing more to say about irritability, but regarding pizza...just try this. Chebe is AMAZING!!! I missed "real pizza" more than anything when I started, but this stuff is just as good. You can't get it in stores, but here's their website: Open Original Shared Link. Don't buy the pizza crust thingy (which doesn't taste as good as the bread mix), but get the bread and follow the instructions of adding oil, or whatever. Then, mush it into a round pan like a pizza and cook it in the oven. Once the crust is cooked, add the sauce, cheese, put it in for another 4 minutes, or so, and it's done. This is seriously amazing. Try it.

we called a gluten free pharmancy and they said that advil coats them with flour some days and doess't other days so if you get a good batch you should be fine but if you get a bad batch then you will ger sick.

Yuck...really? Why would they coat it with flour some days, and not others? That's pretty dumb. Anyway, last night I finished an Advil bottle with a headache, so I'll be careful with my next pain reliever...

My family doesn't eat entirely gluten-free...probably because it's a pain in the neck to do so when you don't have to, and second, it's an unnecessary added expense. In terms of cross-contamination:

- COOKING EQUIPMENT: My family uses the same pots and pans that we always had, but I have my own pot, spatula, pan, measuring cup, strainer (since the old one is plastic and plastic is harder to get completely clean).

- DIFFERENT SIDES: When you cook a gluten-free noodle and a regular noodle at the same time, and you need to stir them every now and then, you start to wonder which fork you used to stir the gluten-free noodle, and which fork for the regular. Therefore, we usually cook gluten-free foods on the right burners, and the regular foods on the left burners. Also, forks, etc. used to stir or touch gluten-free foods are on the right, and ones used to stir non gluten-free foods are on the left

- TOASTER: Obviously, a different toaster oven...only my stuff goes in there and there is a separate toaster (that looks very different) for the rest of the family

- MISCELLANEOUS: Different cookie jars for gluten-free/non gluten-free cookies, and most of my gluten-free foods are kept in cabinets away from the gluten-filled processed junk...

As for why contamination is important:

I'm very new at this gluten-free thing, just trying to get started. I simply cannot understand the need for being so careful about cross contamination. I'm reading about CC on foods, make-up, vitamins, and prescriptions. Now, the counter and shelves? Maybe I still don't understand this disease! I understand where I'll feel better, without gluten in foods. I don't understand how traces of gluten, on sheleves, the toaster, in my make-up, can be so bad. Will my lesions not heal, heal too slowly, or just cause a flare-up in the tummy? I have to admit, the tummy probs are not good, so wish to avoid them!

Tarnalberry's analogy is good:

Did you take chemistry in high school? You ever do one of those experiments where you add just the tiniest of amounts of something to something else, and it totally changes what you started with?

According to my nutritionist, it only takes an amount of gluten the size of your smallest fingernail (short fingernails) to undo all the progress your intestines have made. Therefore, if you toast a gluten-free bagel where some other "gluteny" bread has toasted, you could be picking up enough gluten to make you sick. Even if that alone doesn't contaminate you enough, look at all the other sources of contamination. Every little bit has an effect...like in a chemical reaction.

I never saw the old board until reading this post...is there any specific area that is of great value...I quickly scanned some of the information and liked this board better (probably since this is where I started). Somebody said something about copying recipes, is there any other area that is particularly valuable? Thanks.

Of course, not all types of Tylenol/Advil are gluten-free, but I take advil for pain/headache relief. Before I found out that some type of Advil was gluten-free, there was this homeopathic stuff that was fine, but I found it hard to swallow...

- As Tarnalberry said, smoothies, applesauce, yogurt (almost all my ideas)

- Also, canned fruits (mandarin oranges, peaches, etc.). And of course, you could mash them up.

.......not much, but I hope it helps in some way

My bloodtests showed that I had it, but I did the biopsy anyway....and it also showed that I had it. If the doctor is confident enough about the Celiac, it shouldn't matter. In addition, if you've started her on the diet, and you now plan to get the biopsy, then she's going to have to go back to eating gluten for an accurate test. you might be better off starting to heal her intestines now...besides, even if she isn't Celiac, the gluten-free diet is extremely healthy for anyone.