pixiegirl

I know someone that had this sort of testing done.. and it turns out according to the testing that they are allergic to virtually everything. For years they are eating a diet of meat fish and rice, very few fruits and veggies as the testing showed they were "allergic" to them.

Well after a few years of such restrictive eating they tired of it and started looking into things further, allergy skin testing, some food allergy blood testing (which i believe is in itself controversial) and best of all an elimination diet. Guess what, almost all the foods that she avoided for years she can eat with no problems at all.

However, I don't think one should be afraid to post to the list about something they found out about or something that is new but I think we need to be very careful with what we believe is true without scientific testing of some sort. I don't think western medicine is the be all and end all of medicine and I'm open to and use various alternative medicines but I'd be wary if I showed up allergic to all sorts of stuff without further testing. I have a daughter with various food allergies (peanut and tree nut) and I know that any allergy testing has to be taken with a grain of salt. She showed up as having a mild reaction to certain shell fish (like shrimp and lobster) which she eats all the time with no problems (no hives, belly aches or personality changes).

Certainly taking blueberries out of your diet isn't going to be a problem (well they are just about the best antioxident food out there) but why be so darn restrictive if you don't have to be. I'm glad you feel better but if we aren't talking anaphylactic shock, then I think testing these things via elimination diet would be helpful as well.

Any how I'm glad your feeling better.

susan

I eat at Outback and PF Changs regularly (both are owned by the same company) and I've never had a problem regardless of where they are (I've been in them all over the country.

I'm really careful, however (overly so). When I walk up to the front desk I ask there for a gluten-free menu because they often keep them behind the desk. I also ask that hostess if they will send the manager over to the table. Once the manager stops by I tell them I need to go gluten-free for my meal and they always say they are on top of it. When the waiter comes over I then let them know I've spoken to the manager about this (they almost always say, yes i know he/she spoke to me) and I explain my food issues as an allergy. I've found they really perk up at the term allergy as opposed to celiac or gluten sensitive, etc. The food industry is pretty up to speed about allergies. I also explain to the waiter that if they accidently put crutons on the salad they can't pick them off, that it has to be made fresh.

So far I've had really good results with both places. Once Outback made a mistake with the crutons and they were happy to fix it. I do make a fuss in both places but never once has anyone been put off by all this and my health is far more important that then fuss!

Susan

I think it might be to your advantage to have the tests done. But I agree with everyone here, it takes a good long while for some people to feel better. When I first went gluten-free I did get improvment the first week but I wasn't "all better" just not feeling like I was run over by a truck.

However I was glutened on a trip to the Florida panhandle back in May and it took 2 months for me to feel normal again.

Lastly on one of the Celiac lists I'm on there was a link to an article about how gluten-free foods are not always totally gluten free, they tested some and many contained gluten so its my opinion that when one first goes gluten-free the best way to do it is without any processed foods at all (much more difficult with a child, I do understand that). Plain meats, chicken, fish, veggies, fruit, rice. I did that for the first 2 weeks and then slowly added things in so I could tell what worked for me and what didn't.

I also think a lot of us find that after having Celiac we are sensitive to other foods or additives. I can tolerate soy in some forms but not others (I've still not totally figured this out yet) and there is something in a brand of gluten-free rice chips I buy that gives me the runs every time (so obviously I avoid them, but they do say gluten-free right on the bag). As much as you'd like a quick answer sadly with this disease it usually takes a while to figure it all out.

I hope the tests give you a better answer, good luck!

Susan

Has everyone gotten their new issue of Living Without... I've been hearing about it here and I didn't get mine.

I guess i better get in touch with the publisher.

Susan

My best friend and my sister in law are very careful with my gluten issues and I love that they are.

Susan

Victoria's secret and I think a lot of the less expensive companies now sell all cotton "boy shorts" for girls in nice colors too. Do you know for sure the rash is DH or could it be something else? I'd see a dermatologist and see if they can figure that part out.

Susan

(who has a lot of skin issues and none are DH but gets a lot of rashes)

Hi celiac3270,

I can't even get to the web page (url) supplied here the one that starts with f2.. blah blah. I get the page not found thingy.

I can't understand why this happens, I've spoken to the owner of the yahoo group, I do get all their mail and can go to the start page of the silly yaks yahoo group but when I click on the link my adobe opens but stays blank. She said it was because I didn't have the latest version, well I got it and the same thing happens. My adobe works fine for other web sites so I'm not sure what the issue is I open lots of .pdf files.

My address is bailey@cape.com

Thanks, Susan

I too love the gluten-free Whole Foods products, they are good but... I love this bread even more: Manna by Anna (google it) its a mix and it works best with a dough enhancer but when made it is soooo good. It doesn't crumble and it tastes great even without toasting.

I make mine in an old bread machine and it comes out just right each time on the regular bread cycle. My mom tried to make it in the oven and it didn't come out as well but... she is known for cutting corners and I wasn't there when she made it so I can't say which corners she cut but I'm going to bet she did (sorry mom!).

I've tried tons of gluten-free bread and Manna by Anna is still far and away the best one.

Susan

The URL comes back for me as not found. Can I have a copy too, I'm a member of that list but can't ever get any of their lists and such to open for me.

Susan

Yes forward me the info about the meeting... are you going to go??

Susan

Wait a minute..... I thought Newmans Own had a lot more gluten free stuff then that! What happened?

Susan

I come from a family of eater outers.... my daughter went to her first restaurant at 4 days old, LOL. I've been gluten-free for a year now and doing well with eating out. In the past 2 weeks I've been to upstate NY and to Birmingham, Michigan and have not been glutened once, I've eaten out virtually 3 meals a day. I'm getting good at picking restaurants and good at ordering. I explain celiac as an allergy because most restaurants are pretty understanding of food allergies and try to be very helpful. I do best in upscale restaurants with a chef as opposed to a cook. And then there are a bunch of places that have gluten-free menu's, Out back, PF changs, Legal Seafoods, and a number of places that try to be gluten-free, McDonalds, etc. With a little work its very doable. I try to go to restaurants before the huge dinner rush so I have time to explain my food issues.

Susan

Hi I just got back from vacation and am catching up.... I'm not sure if I have the info about the cape celiac group but I'm sure I can find it on line some place... I'll see what I can find for you. They meet in Mashpee I believe.

I'm curious what GI doctor you found on the cape. My internist is Dr. Rosa Moncholi in Hyannis but I don't think she is accepting any new patients. She didn't diagnose me but she is very accepting about celiac and seems to know a lot about it.

Susan

I still think even with a gluten-free menu that in any restaurant you need to reinerate it over and over. I was at Outback a couple of days ago, they do have a special gluten-free menu, it does however look like the regular menu but with gluten-free stamped near the things that are gluten-free.

However when the server comes to the table I ask them if they have had a gluten-free customer before, if the answer is no, I go on to explain how important this is to get right and I ask them to mark my meal as gluten-free on the ticket AND to tell the chef that she has a gluten-free ticket to expidite. I do this every single time because its MY health and I've got to be the one to watch out for it. So far when I go thru this I've had good luck with both Outback and PF Changs.

Susan

Someone mentioned Risotto and said isn't it gluten-free, the answer to that is usually not. It is almost always made with chicken broth and unless they make the broth at the restaurant they probably won't know if the broth is gluten-free.

I just spent a week on the road in upstate NY and wasn't glutened once, I was in the finger lake area and syracuse and rochester. In Syracuse we had the best experience.. we went to a newer place called bc's (I think I have the initials right, if someone wants to know for sure I can ask my BF) and we called them and asked about gluten-free and they said come on down you'll be surprised. It was a very nice hip place and they even had gluten-free crackers for me. No gluten-free menu but everything including sauces and their chicken broth is made on site from scratch. The food was excellent I did have risotto there and fish too wow was it good. No gluten in site of my dinner. I think it was the Maitre d` that has a gluten-free who is celiac so they have it all figured out. We also hit an ice cream parlor that made all homemade ice cream and they had a gluten-free list wow that Purple Cow was excellent!

My BF and I have started to tell places that I have a severe allergy to wheat (even though its actually celiac) and that seems to work far better, most restaurants are very well versed in allergies. They are afraid of anaphalactic shock and in almost every place, casual and fancy when I said allergy they brought the chef/cook out to speak with me. I had a wonderful time and in 5 days of 3 meals a day I wasn't glutened once.

Susan

Since yesterday the board is working differently for me. I go to my assistant and it tells me how many new posts I have and normally when I click on it it goes to the board and the topics with new posts are in dark bold headings and the ones not in bold are older topics that do not have new posts.

Now nothing is in bold, its just all the topics so how do I know which one has new posts and which ones don't? I can't figure out what happened, I didn't change anything and I can't find which posts are new.

Susan

If you have a Whole Foods Market near you they make chocolate chip cookies in their gluten-free bakery that are great..... a million calories but really good.

Susan

Yes their coconut milk is gluten-free. I use it all the time, sometimes it makes my stomach a bit funny but that's when I use it with tons of green hot curry. Here is Thai Kitchens list of gluten-free:

Open Original Shared Link

Susan

Well the only advice I can think of is before leaving to get a gluten-free dining card translanted into the languages you need. Some of them are already available on the internet (I can't remember where but I do remember seeing them), but I can't imagine it would be too hard to get them in any language.

Susan

My boyfriend is similar.... he starts talking to restaurants before I do. This weekend we are leaving on a week trip to upstate new york and he has already mapped out where the gluten-free places (chains and places that we found by writing to the various celiac groups in the area. He also mapped out health food stores and called them to see if they have gluten-free food. I've said to him a million times leading up to this trip that I'm afraid I'm going to be glutened and he has assured me I won't be. I actually believe him, with all the research and work he's done for this trip, I'll be as safe as I can be while traveling.

I often travel but its usually to larger cities where I can get to chain gluten-free restaurants or very high end places and this is going to be a trip to a very rural area with smaller mom and pop places. But we are also going to picnic a lot, so we'll see how it goes!

Susan

I'm a bad mom I guess.... I'd just toss out the stuff that makes him sick and replace with gluten-free. No its not always the same but some of it is really good. It gives you a chance to try new stuff and you can buy some of the baking mixes (brownies, banana bread) and bake them together.

At 6 my daughter could bake cookies by herself (ok I'd do the oven part) so he's certainly not too young for this. Often times if they help bake it they will eat it.

I think my daughter isn't a whiner or crier because I don't put up with that cr*p. I'd certainly explain that they have Celiac (in 6 year old terms) and what that means and tell them if you continue to eat this this and this you are going to get really sick. Kids don't want to be sick...

This list should help a lot because a lot of people here know whats good and what isn't. There are at least a couple of gluten-free mac and cheese (mix and frozen) you can buy or if he likes kraft (like my daughter does) use their mix with gluten-free elbows.

Susan

I go to our local PetSmart, they do have dogs and cats there for adoption but they are all from the local shelter. I feed my dog Nutro Natural Ultra Senior (a mouth full!) and I know they have cat food as well. But again, cats don't need ceral ingredients and I won't feed my dog wheat ingredients, I'm ok with rice but not doing wheat in my dogs food. When was the last time you saw a canine in the wild eating wheat (I know or rice for that matter!, just being silly).

Susan

Cats are one of nature's very few carnavoirs and they really don't need anything like wheat in their diets. The manufacture adds it to control costs. You'd be doing your cat a favor to feed him/her wheat free cat food.

Susan

I'm in Cotuit!

Susan

HI and welcome to the group, I'm on Cape Cod and there is a Celiac group on the Cape (I'm not a member yet....) and I know there is one (probably more then one) in Boston too.

Are you saying that the bakery in Vermont is Gluten Free? Heck I'd drive to Vermont for that! I love VT any how. Why isn't there a gluten-free bakery in Boston thats what I want to know??

Susan