luvs2eat

If you're in central NJ w/ easy access to PA and Doylestown, PA in particular, Dr. Hale diagnosed me on the 1st visit! I really liked him!

I've had good and bad experiences at Chili's. Unfortunately, we live in such a tiny town that there's ONLY a Chili's for that type of restaurant.

I can chat up the waitress and the manager, but it can, and often does, all fall apart in the kitchen. The last TWO times I was there, I gave my wheat/celiac talk... and ordered a salad... and received their salad mix that contains flour tortilla strips even tho the salad I ordered had nothing to do w/ tortilla strips. Both times I had to send the salad back and ordered nothing else because I didn't trust them! I said that I'd give them one more shot before writing to the company, but we just never go out to eat anymore!

I'll enjoy some Chik-fil-A fries if we happen by one, but we just don't eat out anymore.

You can call the venue ahead and make arrangements. I was able to take a big lunchbox into a stadium for a day-long concert... where food and drinks were hugely expensive. We talked to the manager of the stadium and were instructed to enter in a specific entrance where my cooler was absolutely allowed.

I happily payed $4 for the most delicious gluten-free cupcake I've ever had. It was at a bakery in Philadelphia. It was a rich, moist chocolate cupcake w/ mocha buttercream on top and chocolate ganach on top of that. If yours are HALF that good, I'd happily pay your price!

I've had the "crouton" issue (croutons, tortilla strips, chinese fried noodles) in every restaurant I've ever visited. We rarely go out anymore.

Not absolutely related... my oldest daughter was the manager of a Macaroni Grill. Knowing my issues, she used to serve a regular customer who had a young daughter w/ celiac. She would take care of them personally... taking the gluten-free pasta they brought from home and cooking it up in a clean pot. Those parents were SO grateful that they could take their daughter to a restaurant and eat safely. Wish there were more managers like that.

I love risotto! It's so easy to make and who doesn't love sticky, cheesy rice? I follow a basic recipe and add veggies. YUM!!

It was a mildly elevated ANA that sent me to a rheum. several years after my celiac diagnosis. It's a LUPUS marker. I was blood tested every 6 months for almost 2 years and examined by the rheum. doctor. My blood level never changed and I had no symptoms so I didn't need to go any longer.

When I was diagnosed almost 10 years ago, there simply weren't a lot of junk/processed food options, so I never had any to have problems from. The more I see of the processed stuff, the gladder I am that I've stayed clear of it. I like to cook and to bake (altho not as much as I used to) and will go out of my way to cook/bake GOOD things without all the crap.

I've never had much of a problem w/ grains... except for the fact that I'm a total carb addict and would rather eat rice and stuff like that more than any fruit or veggie! I've never suffered from C either... I'm D all the way (ha).

As for the grocery store depression? I've cried in grocery stores before... now I know how my kids felt when I used to tell them they could pick any cereal they wanted as long as it had 3 grams of sugar or less... and they'd pick up the Lucky Charms hoping that maybe THIS ONE TIME, it would have 3 grams of sugar instead of 30!! I've picked up things that I KNOW aren't gluten free and read the ingredients to see if maybe this ONE TIME, I'll get lucky.

Ya know when they'll "get it?" When something devastating happens to them. That's when the clueless realize that they weren't there for their friend and they'll feel terrible.

A similar thing happened to my youngest DD who's spent the last few years dealing w/ extreme food intolerances. She was the party house... loving to bake and cook and entertain... and turned into a sick little girl who could eat about 10 foods and had to be so careful, she couldn't even BE IN the restaurant where all her dodge ball team went for nachos after a game. She lost tons of weight, she and her fiance broke up and ALL of their friends simply disappeared! She was devastated. She finally talked to some of the friends and told them how hurt she was, but it'll never be the same.

I have another "forum" friend who's fairly young husband (40s) had a catastrophic stroke. She's been hurt just like you describe as all their friends slowly drifted away.

Like I said... they'll get it when something awful happens to them... NOT that I'd want anything bad to happen to anyone!! But it's THEN that they'll realize!

I was gluten free for about 8.5 whole years before I realized that dairy doesn't seem to like me anymore. As you can see from my stuff at the bottom... going gluten-free was simple compared to dairy free! There are tons of substitutions for gluten, but there's NO subsitute for delicious cheese!! Now I try really hard to avoid dairy and only have it occasionally. It seems to work.

My daughter was having trouble w/ coffee when she first went gluten-free. She switched to decaf and it helped tremendously. A few months later, she's back to regular coffee.

I would die w/o coffee. When dairy decided it didn't like me anymore, I had to drink coffee in a travel cup w/ a lid for a few weeks so I couldn't SEE it w/o milk. Now I love it black.

Is this the same Alamo Draft House that had the hysterical PSA from the woman who was asked to leave the theater for texting after she'd been asked repeatedly not to? It was such a hoot! I'd go there and have a glass of water to support their efforts!!

Time to learn a new skill! Baking gluten-free bread isn't hard. All you have to do is follow the directions on the mix! gluten-free Pantry's is pretty good, as is Bob's Red Mill. My personal fave is Pamela's bread mix. I make it all the time... either in a loaf pan or on parchment paper or a Silpat for rolls... I just scoop out the bread dough (which is really more like thick cake batter) and whirl 'em round w/ my spatula into a round. The kids themselves might enjoy the challenge!

Lots of peeps here use breadmakers, which would take a lot of the guesswork out of it.

The only thing I really miss is a good, soft hotdog roll. We live so rurally, there is no Udi's here and certainly not fresh (as opposed to frozen) rolls. My daughter actually sent me photos of her awesome looking hotdogs in Udi's fresh rolls.

I know there are a million different symptoms and levels of difficulty and sensitivity, but in general:

1. This isn't that big a deal. In the scheme of life and all the things/diseases, etc. that people can have and can go wrong... this is nothing. We just have to learn how to cook a little differently, that's all.

2. Read labels... every single time... even if it's something you've been buying for years.

Oh man! We don't have Whole Foods where we live (rural Arkansas), but the last time I went back to where we came from (outside Philadelphia), I went to Whole Foods and bought those bagettes and toddled over to the cheese counter and snagged a little container of fois gras (goose liver), took it to my friend's house, toasted the bread, and ate the whole thing w/ the pate. Holy crap... I was in heaven!!!

You could not pay me enough to test the waters. It's just not worth it to me. Nothing beats feeling well so I have no desire to see how I would react.

I'm with you there! The last time I was accidentally glutened (totally my fault), I spent the evening trying desperately not to barf. Then came the diarrhea and gut pain/rumbling and I spent the whole next day on the couch in a fog. The day after that wasn't too bad, but I'd never intentionally put myself back there!

My doc warned me that he wasn't a huge anesthesia user for colonoscopy, which didn't bother me. I'd seen the procedure done many times in nursing school. The prep was sucky, but the actual test was FASCINATING! I was awake for the whole thing and watched it all on the TV screen and could ask tons of questions. It was so mildly uncomfortable that it's barely worth mentioning... and if you're asleep (as you will be if they're doing the endo too)... you won't feel a thing.

Middle daughter actually sent me a PHOTO of her two lunch hotdogs on Udi's buns! She was SO psyched! And they were fresh, not frozen. I was so jealous... nothing like that where I live!!

I CRAVE CHEESE. Trying to go dairy free has been WAY harder for me than going gluten free. There are so many breads in the world... I've embraced gluten-free bread and learned to really rejoice in the rare gluten-free bagel, but cheese? There is NO substitute for cheese... period.

Sorry, didn't mean to hijack, but I often have cheese on the brain!!

Finding the hotdogs is pretty easy. It's getting good buns that's the hard part. (IMHO)

I hear ya on that one!! I rarely eat hotdogs anymore cause it was always about the roll for me! My daughter actually sent me a photo yesterday of the two hotdogs she was having for lunch... on Udi's hotdog rolls! There are no Udi's hotdog rolls in west-by-go-nowhere Arkansas!

I've always trusted Dr. Oz and my friend watched one of his shows where he said envelopes should not be licked by Celiac patients. Will read the article. Guess nobody can be right all of the time.

I don't lick envelopes because I read a medical journal article (with photos!) years ago where someone got a teeny paper cut when he licked an envelope... and there were some sort of microscopic eggs on the envelope where some insect had landed on it and the guy had gross larva or bugs in his tongue that grew and his tongue was all infected! BLECH!!

But back to the subject at hand. Do I cheat? Nope... never... not EVER!!

I'll have to agree with another poster who said you can find just about any gluten-free recipe online anymore. I even googled things like gluten-free puff pastry and filo dough! Plus, there are always peeps there who've tried the recipes and I really appreciate their feedback.

The million different flour mixes would also turn me off. I had tons of small bags of (expensive) flours for a long time. Now I buy Better Batter flour for the small amount of baking I do and I use bread mixes. I used to love to bake, but not so much anymore.

These kind of stories really chap my hide! Why on earth wouldn't they simply agree to do what the MOTHER thinks is best?? Would it be easier for them to accept something like a peanut allergy if they could see what happens when the baby is fed peanuts??

I had a MIL (from hell) who was so upset that I didn't feed my babies the highly-processed baby foods on the market, perferring to make my own baby food. I told her that I could grind up the box of baby rice cereal and sprinkle vitamin liquid on it and it would be equivalent to the crap in the box! I came home from somewhere to find her shoving the rice cereal into my kid saying, "See?? She loves it!!" I never left her alone w/ MIL again. What was it about MY WISHES about what goes into my kid did you not understand??

YOUR WISHES are even more important in this case! I am seriously astounded that people want to shove gluten into a baby when you have a blood work AND biopsy diagnosis.

I'm sorry for my rant. I don't really have advice for you other than never leaving your baby alone with them and continuing to police what they're trying to hand her.

We don't eat out... booooooo.

Hubby CRACKS up when I'm biffing around the house w/ my ear buds in... dancing and singing. It's so funny cause I have all my fave songs on my ipod and one will come on and I'll say, "Ohhh... I LOVE this song." And then the next one will come on and I'll say, "Oooooh... I love THIS song!!"

In no particular order, I listen to

Sarah Boralles (sp?)

Outkast

Gorillaz

REM

G Love

Scott Joplin

Big Bands stuff

Eric Clapton

Buffalo Springfield

Jimmy Hendrix

Stevie Winwood

Jake and Elwood Blues

B-52s

Heavy D and the Boys

James Taylor

Katie Tunstill

Adele

Mambo Kings

Rhapsody in Blue

some classical and some Broadway show tunes