celiac3270

Sorry, I accidentally posted something twice, so I deleted it from here. My apologies.

Mi-del cookies are available at "whole foods" in a variety of flavors (choc. chip, ginger, animal)

Yeah...I've tried all three, though, and the chocolate chip s a real disappointment. Ginger is okay....but I think the arrowroot animal crackers are the only one worth eating all the time....

One more suggestion: my symptoms primarily include stomach pains, and sometimes I vomit from them. They've been getting better, but if anyone here has similar symptoms or knows someone with similar symptoms, these are really good "sick" food....they're bland enough to taste good when you're not feeling well, and also suitable when you're healthy...good cookies.

I bought the Mi-Del gluten-free animal crackers. I purchased them from a local "health food" store that carries various other gluten-free products.

Those were the first gluten-free cookies I ever tried and my second favorite to this day. I found an AMAZING chocolate cookie w/chocolate chips -- really good -- unfortunately, I don't have the box here, since I ate the last one yesterday...they're not by mi-del, but my absolute favorite...sorry I don't know what they're called

Don't worry about it...I made numerous unintentional gluten mistakes, one that was similar to yours with the pasta:

- My first week I only knew that I couldn't eat wheat, oats, barley, etc. I didn't know about natural flavorings, malt, etc. I read the package of a candy thing my brother was eating: "Gushers", didn't see "wheat" written anywhere, ate it, and then found out a week later that ingredients like malt are poisonous.

- On vacation, my family and I brought a gluten-free cereal for my breakfast, so we wouldn't have to eat out every meal of the day. It happens that my brother also wanted cereal, so he got corn flakes (the same cereal I was having, only mine was gluten-free). One morning I decided to have a last handful of cereal before leaving the hotel room. Of course, I grab the wrong box, eat a couple, see the box, flip out, and spit the rest into the bathroom sink. Surprisingly, that poisoning gave me no additional symptoms.

Don't panic...now only 14 weeks in I have little question of what I can and cannot eat, and so far, don't make mistakes like that anymore. My advice, try not to cook "gluteny" foods. That is like an automatic reaction we all make, but after 3 months, or so, you'll be used to staying away from that stuff. Good luck...I hope you don't have a reaction.

-celiac3270

Hi, I'm 13 and a little over 5 feet. Before going on the gluten-free diet, I was around 70 pounds, maintaining, but not gaining. Each year, I would gain about one-two pounds, or sometimes stay the same. After the gluten-free diet, I gained weight...but only what I wanted to. I wanted to get up to 85-90 pounds so I wouldn't feel guilty about running and playing on two sports teams (AND BURNING A LOT OF CALORIES) at school next year. I'm now up to 78.4 pounds...a nice improvement, but I'd like to break eighty pounds. I've gained weight, but weight that I've tried and desired to gain. I wouldn't mind adding another 5-10 pounds, now, either!

-do as little physical exercise as possible. it might sound odd or lazy but my doctors told me this. while you don't absorb nutrients because of gluten, you don't get any energy... and even after you're gluten-free, you still need extra energy for tissue growth and recovery! so get more rest than the robustly healthy!

I, too, am trying to put on a few pounds. I'm not severely underweight, and I have actually been quite successful since starting...I used to be straddling the 70 pound mark, dropping to 68 if I'd get sick, and now I'm nearly 80...much better, although it couldn't hurt to add another ten pounds. When I started, my mother went to a nutritionist while I was in school. I had had the same idea about exercise that you mentioned: I like to run, but I stayed off the track team, didn't join the soccer team, and only played hockey. However, the nutritionist said that I shouldn't try to change my physical activities, but rather, just gain weight from the diet change. That kinda conflicts with what Jen-schall said above...maybe the nutritionist was just trying to make the transition a diet change, rather than a life change...I don't know.

I have had no reaction to the PB I use: SKIPPY. JIF is also supposed to be gluten-free

My symptoms included:

1. Bloating/gas

2. Diarrhea

3. Cramping in my stomach (the worst symptom for me) sometimes accompanied with vomiting.

Yep...I live in NY also. I've heard of numerous restaurants that zippy10 mentioned, but I rarely ate out before being diagnosed, and therefore, don't eat out now, either. For travelling to NYC or anywhere else, there is a website: Open Original Shared Link. I hope this proves helpful for you wherever you go. It won't work for small towns, obviously, but for big cities, this site will provide a few options. Hope this helps.

Hi, back again with a quick "edit" to my post. At Silly-Yak.com, there is a long list of NYC restaurants that accommodate to Celiacs:

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.

Hope this is helpful...

Yep...I heard about Wrigley's from a nutritionist...I also heard that Wrigley's was the only gluten-free gum.....then again, I've never heard of some of the gums you mentioned, so maybe the nutritionist didn't know about them, either.

The sample is nice, but do they charge shipping? I just checked the price and it is the same as what I pay for a bread that I already consider great...I guess delivery to your door is convenient.

You said you make pizza crust out of corn chips. Do you have a certain recipe that you have made up to use them? That's a great idea that I'd never thought of. I love Mexican food and thank goodness, most of it is permissable but I do miss a good pizza. I know you can buy gluten free frozen ones but they leave a lot to be desired. I don't eat bread any more, just gluten free crackers and chips. I'd appreciate any suggestions

Try "Chebe" for a good pizza crust. You can't buy it in stores, so you have to get it online, but it is amazing. Don't buy their pizza crust, but get the package for making the bread (it works better) and follow the recipe, then "smushing" it out onto a round "thing". Put it in the oven and when the crust itself has cooked, add sauce (gluten-free, of course), cheese, put it in for another minute or two so the cheese can melt, and it's done. When I started the gluten-free diet, I thought I'd miss my NYC bagels the most. It turned out that the pizza was what I really missed, but this is an amazing replacement. I think it's like five dollars for a package, but then you don't need to deal with gluten-free flours and stuff. Try it.

As for cost: I guess it just depends, like people have mentioned, whether or not you buy the special gluten-free items or not. If you stick to your grocery store and buy the Frito-Lays chips, potatoes, meats, rice, fruits, vegetables, etc. it's no more than what you'd usually spend, maybe less because you're not buying the processed foods. Once in the health food stores, it gets expensive.

I, too, have nothing medical to add, but find myself really snappy and irritated. I'm probably about 14 weeks now on the diet, but have felt this way for weeks. I used to get mopey and depressed every now and then, but now find myself really mad, irritated, and snappy at people quite often...again, nothing medical, but just reassurance that this is fairly common....

-celiac3270

Hi...I'm a thirteen year old boy, diagnosed 13 weeks ago...just thought I could be of some assistance. If you have any questions or want some advice, you can e-mail me. My advice: read the boards...you'll find yourself an expert in no time. I don't have time to write a long post of some tips for starting, but again, don't hesitate to e-mail. After 13 weeks of trial and error, I think I've found the best of gluten-free breads, cookies, pastas, etc. If you want some help for starting out, I could get you her e-mail address. She got helped by people when I started the gluten-free diet, and therefore, likes to help others in a similar situation. Good luck and don't get discouraged...

I've been gluten-free for 13 weeks, and I still get occasional symptoms, so I haven't dared to introduce dairy...I'm going to wait another three weeks, or so...it's not worth it

Hi,

First, because it's been mentioned a lot, Macaroni & Cheese:

In reference to the gluten-free Mac & Cheese, I believe you can get a tax deduction for the difference in price between the normal brand and the gluten-free brand. I don't know how it all works, but it sure would add up over a year.

I've read about this tax deduction stuff and it seems rather complicated. I think you have to keep a spreadsheet of the stuff that you buy and compare prices. It doesn't seem worth it, especially when, at least for macaroni and cheese, there is an easy option. As someone already mentioned, the Kraft Macaroni and Cheese cheese packet is gluten-free...my mother has called the company. I love Tinkyada noodles, and they are all gluten-free...really good. I think they're just as good as the regular noodles. Just follow the instructions on the packet and substitute gluten-free noodles for the real ones.

Bread: EnerG Bread (white rice) is really good, tastes completely normal, and doesn't crumble. It works well for toast, sandwiches, and grilled cheese...etc. While on sandwiches, gluten-free pb's that are in regular grocery stores, and therefore, regularly priced, include: Skippy and Jiff.

Getting back to your question: lunch:

As far as the Americans with Disabilities Act goes, whether your child is protected at school will depend on a number of factors, no the least of which is whether the school is public/private (whether it receives federal funding), whether the school provides the meals to the other students, etc. It may be that the only accommodatino they have to make is to allow your son to pack his own gluten-free lunch -- it just depends on so much.

I go to a private school. There, I don't buy things in the cafeteria...instead, the cost is a set amount that is included in the tuition and then you eat whatever you want in the cafeteria. My mother made an appointment to talk to the chef at the school after I was diagnosed. In the meantime, I just brought a Genisoy bar to school (the Southern Style PB is gluten-free...and good. Then there's a Yogurt PB type that I don't like as much...other brands aren't gluten-free, so be careful). Now, the school provides a "Plain and Simple" lunch (gluten-free) to me and the other two Celiacs at my school. Of course, I can also eat fruits that are available. The "Plain and Simple" is fish nearly every day; I'm now tired of fish...but at least it's a meal.

I have to go, so I can't make this longer as I had intended to...I hope the little that I said helps, but I don't have time right now to lengthen my reply

I, too, am certainly not "TravelThomas", but when I went skiing, I never ate out. Recently diagnosed, and having been plagued with symptoms for years, I didn't trust the restaurants. As for telling the hotel.......if you clean up well enough and put your cooking gear in a suitcase or bag when maid service comes, you don't have to.

Obviously, having a small fridge in the room is helpful...if not, a cooler filled with ice can substitute. I agree with plantime in that I'd recommend driving. I find disposable plates to be best; you don't need to store them, and you can buy them at your destination. I brought a toaster oven and a George Foreman grill. The toaster oven allows you to eat toasted bagels or breads for breakfast, and you can cook potatoes, or whatever else, in it for dinner. The Foreman, obviously is helpful to add meat to your diet. My family has a larger one, which we brought on vacation, but I've seen smaller ones in various bright colors, that might be more suitable for travel. I don't have much to say...I've only gone on vacation on the gluten-free diet once...My ramblings probably had no useful information, but I hope there's something in there that's of use......

Yep...I live in NY also. I've heard of numerous restaurants that zippy10 mentioned, but I rarely ate out before being diagnosed, and therefore, don't eat out now, either. For travelling to NYC or anywhere else, there is a website: Open Original Shared Link. I hope this proves helpful for you wherever you go. It won't work for small towns, obviously, but for big cities, this site will provide a few options. Hope this helps.

Hi, back again with a quick "edit" to my post. At Open Original Shared Link, there is a long list of NYC restaurants that accommodate to Celiacs:

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.

Hope this is helpful...

I havent had the biopsy yet but my blood test came back positive for celiac disease

Hi...welcome to the board. If you intend to have a biopsy done, then you definitely should not begin the gluten-free diet. If you do eat less gluten, then your biopsy results won't be as accurate. This would also make eating on vacation a lot easier. If you aren't going to have a biopsy...then I would recommend starting the gluten-free diet soon, though I have to warn you, eating on vacation is no simple task...

Yep...I just made my 30th this morning and it changed...thank you.

True

What makes someone an advanced member. I realized that after enough postings I changed from a "newbie" to a regular member, but does it work the same way with advanced members? Thanks.

Hi,

First off, you can't know for sure if you're Celiac unless you get the blood test or, preferably, the endocopy. If you're going to get tested for that, keep eating the regular stuff that you feel could be giving you all these symptoms. However, if you aren't going to get tested, there's nothing wrong with a gluten-free diet. If it relieves your symptoms, then it doesn't even matter if you're Celiac or not...the diet makes you feel better.

As for symptoms, some of those sound very familiar. My primary complaint was the horrible stomach cramps, often usually with vomiting, that gave me so much trouble and pain. Since first grade (I'm now 13), I had been sick ALL the time. In first grade, I would eat dinner, then feel really sick, run to the bathroom, throw up, and then feel better. Later, it became once every week, or so, I'd get sick and have a 24 hour bout with this. Other symptoms included: severe bloating, occasional diarrhea (sometimes formed stools, sometimes loose), and rather stinky gas/stools. I never experienced fatigue, personally, but realize that it's a common symptom in Celiacs. In addition, I have never been extremely puny, but in basketball games and other contact sports, it's easy for me to be pushed around.

If you choose to start the gluten-free diet without first testing, keep in mind that your symptoms won't go away immediately (if you indeed have Celiac). I've been on the diet for 13 weeks and though my symptoms aren't as bad (knock on wood), they aren't perfect, either. Anyway, if you try the gluten-free diet, be patient, give it a few months, and make sure that you are 100% gluten-free or you won't feel any different. I believe there is a good list on this website of ingredients that are/aren't gluten-free. It's not just wheat, barley, and rye: there are a lot of ingredients to check for in each product and you'll find yourself making a lot of phone calls (because natural/artificial flavors may or may not have gluten). In addition, if you choose to stray beyond the simple meats, potatoes, vegetables, and other things that you can buy in your grocery store, there'll be some added expense. Good luck.

What test did you get done? Blood test or endoscopy? There are cases where the blood test finds you not to have Celiac, but the scope does, or the other way around. It could be that he said you have an intolerance because the blood suggested, but didn't strongly indicate Celiac, or something like that. If you had both tests done, then the doctor's probably right, but keep in mind that the blood test isn't always 100% accurate, though the biopsy almost always is. However, I guess gluten-intolerant or Celiac, you'll still need to be on the gluten-free diet, so it probably doesn't even matter.

- celiac3270

13 yrs. old

13 wks. gluten-free

New York City..............