pixiegirl

My Celiac symptoms started immediatly after child birth for me too. I suffered for 11 years with supposedly Chronic Fatigue, lactose intolerance, and IBS, when what I really had is Celiac.

Susan

I don't really miss any of the junk either... not any more, so maybe after more time goes by it won't be as important to you either... I do however miss pizza, it was a good I loved (not the pizza hut kind... gross!) and we have a great gourmet pizza place on Cape Cod, Sweet Tomatoes... there pizza is to die for (well almost) and once in a while I really really miss it.

I have experminted with various kinds of pizza crusts (gluten-free of course) and I suggest you do that.... its not quite the same and its not like stopping in your favorite pizza place and getting all your favorite toppings but with a little practice it can be pretty good. I've tried to recreate my favorite pizza (pesto splash) with pretty good results.

Its a great activity for a rainy saturday!

Susan

Our Whole Foods in Hingham, MA has all the fresh baked goods, so do the ones in the Boston area and they have had them for months. However they are often sold out or close to sold out but if you ask at the bakery they will go in the back and get them (they usually have extra in back).

Susan

Yesterday I was in Whole Foods and I was looking to try some new power bars (or whatever you call them) I eat laurabars, envirokids but wanted to try some with nuts and fruit in them (I did find a bunch). However one of them and I can't remember which kind, said gluten free right on the front but the ingredients said:

oats (made gluten free)

I didn't buy them as I'm not sure what that means....

Susan

I've read about similar experiences on these boards, I'm very thankful they have never happened to me. But I do agree with the poster that said, why did you stay? Probably you had other people in your party that wanted to stay but even so... there had to be other places that you'd all like that would be more accomodating. I make it a point to never go to places that won't work with me and to frequently visit the places that do. I'd never pass my money out to a restaurant like that.

Lastly, I think when the server told you that you should have politely said, Could you ask the manager to come to our table for a minute? However I'd be afraid in a place like that, that they would make it in the normal way and then take the bun off.

Oh well, I'm sorry you had such a rotten experience.

Susan

Darn... I can't lay my hands on it but I was told via an e-mail that Golds horseraddish is on the gluten-free list. Also Kraft makes a horse raddish sauce (it might have mayo in it) and Kraft will not hide gluten ingredients and that is also gluten-free.

Susan

I really enjoyed reading Dangerous Grains and the book makes perfect sense to me. I really love the statement that "closer the food looks to the way it comes in nature then the more likely I am to be able to eat it".

When I was first diagnoses with celiac disease I ate only that natural way, fish, chicken, veggies fruits, I loved carbs too but after about 6 weeks of not having them at all, (refined carbs that is, breads, chips, etc, fruit and veggies have carbs in them as well) the cravings I had went away. If you truly crave carbs and sugar and are deeply interested in good health I honestly believe the only way to get over it is cold turkey.

Now I do eat them occasionally, I will make a loaf of Manna by Anna bread, or have some toritilla chips and I don't crave them as long as I keep the amounts small and don't do it very often.

Susan

There are a lot of self diagnosed Celiac's around, I guess I'm one. I had problems for 11 plus years and my doctor did "the blood test" for Celiac. Right after I had the test I went gluten-free and by the time the results came in a week later, after just one week of gluten-free, I felt wonderful and most of my symptoms were gone. Interestingly when I went to my DR. for the results of the test, I was sure it was going to be positive..... he tells me its negative.

I was so confused and told him how all my symptoms went away after going gluten-free and he told me to begin to eat wheat again, its good for me and that I DO NOT have celiac. Well, I thought, "forget you buddy". I just couldn't risk being so sick again.

Then 3 months after being gluten-free I got glutened at Thanksgiving and that clinched it for me. I don't care what the stupid blood test said, after being glutened just once my symptoms came back with a vengence and lasted a good 2 weeks.

I finally paid for a DNA test, which doesn't tell you if you have Celiac, just if you have the genes that carry it and I do I have 2 DQ8 genes. The genes along with my gluten-free history, and I'm positive beyond any doubt that I have Celiac, blood test be damned.

I guess for some, having a doctor tell them they have it for sure is important. For me its not necessary at all, I eat gluten and get sick, therefore gluten doesn't agree with me. Easy answer: stop eating all gluten. And I have.

I'm very sensitive too, now if I accidently get glutened I'm sick for a good 6 weeks, I do get progressively better with each passing week but my symptoms take forever to go away now, so I'm really careful in avoiding it.

Susan

I do believe in alternative medicine and I do believe that a good, well trained accupuncturist can help with many things. Its certainly worth a try.

I noticed that almost everyone here mentioned that it won't bring about a cure however from your e-mail I'm sure you know that, I don't think a cure is what you are looking for. I do agree with being sure you are not inadvertently being glutened but I have other symptoms and I'm thinking of trying some alternate medicine, I have in the past and will continue to do so and so far its always been helpful for me. It certainly well may help your gut to heal.

Good luck, keep us posted.

susan

Wow I usually don't buy expensive makeup but lipstick is the one area that I drop the bucks on (usually at Sephora, Dior, Chanel) I see a huge difference in the cheap vs. expensive stuff. There is something in cheap lipstick that when I put it on my lips in a few minutes I feel "something" almost like an itch in the back of my throat, then a few minutes later I start to cough. I know it sounds like an allergy but its just with lipstick and nothing else happens, it doesn't get worse. Its sort of more of a gross taste. Anyways that never happens to me with more expensive stuff. Sigh.

Not to mention for me the color stays put longer especially on glossy lipsticks, whatever they use to make the gloss on cheap stuff just slides off my lips right away on more expensive gloss you can feel its not a slippery and it stays put.

So I guess I need to contact those companies and Orgins as well and find out about their stuff.

Susan

The lipstick thing bothers me, I love lipstick and I gave most of mine to my daughter... is there a list of make up companies somewhere so I can find out what is gluten-free?

Susan

Arcades are fun if you can find them... here in New England we still have a lot of old fashion ones that have Skeeball and such, tons of fun. My BF and I love day hiking and of course we carry food for that so its easy. We picnic, that way you can enjoy food and wine and know its perfectly ok to eat (needless to say you pack the basket). I love kayaking, wallking on the beach, an art fair. I've often ended these types of dates with coffee or a glass of wine so they seem like any other date and not focused around what I can and can't eat.

Susan

I love California Baby products I get them at our local health food store and have been using them for a couple of years! Very mild.

Susan

I've had the rice at PF Changs and never had a problem.

I do want to add a quick note here about all rice being gluten-free, keep in mind at some good restaurants they cook it in some chicken broth for added flavor and that of course might not make it gluten-free.

I've not found this often but I have seen it once or twice so now when I see rice on a menu I always ask if its cooked with just plain water or if they use chicken broth or any other additive.

Susan

I have changed my facial lotions and I usually use a gluten-free shampoo but I have fine hair and when I'm going out on a big date with my BF I use my Bumble and Bumble shampoo for fine hair... now I don't know if there is any gluten in it, I've not checked but it sure does fluff up my hair better then any other shampoo. I try to be really careful when I use it and I'm going to start to watch closely to see if I get an itchy head when I use it.

One in a great while I will use some sort of "new, special" night cream on my face and again, I'm not sure if they are gluten-free for not (looking for the miracle wrinkle cure, no good news to report yet) so I'm extra careful not to get them in my eyes or mouth and I wash my hands really well after I use them.

Oh and I use only gluten-free soaps.

Susan

I just wanted to add this, in the beginning of this thread someone asked, if every 1 in 133 people has Celiac why isn't it more well known.

If I understand this correctly, this figure was derived from testing done at various blood banks (in think in the Carolina region, not sure about this bit), when people came to donate blood they asked them if they could run a test for Celiac and that 1 in 133 number are the results of that study. I'm not trying to question its legitimacy, from what I read it was scientifically done by a major Univ.

The point I am trying to make is this: Every 1 in 133 Americans has Celiac but the number of people that are actually diagnosed with Celiac is far different (not sure what and it was in the article I read about this blood bank study, closer to 1 in 400 maybe). So that's why awareness has to be raised because there are tons of people walking around with it and they don't know. (like most of us did)

My doctor told me that I did NOT have celiac, I'm going to use that letter and send it along with Celiac info to him. I changed to another doctor but he is still my mothers doctor and told her she doesn't have Celiac either, not she is not officially diagnosed but she is gluten-free and all her symptoms have gone away since going gluten-free. Just as an aside... my new doctor was born and educated in Spain and she knows all about Celiac.

Susan

I don't live with my boyfriend (yet) but we spend a lot of time together and travel a lot too. He isn't gluten-free and it certainly doesn't bother me. If we are out to lunch and his meal comes with bread/flour of some sort thats fine, I don't have a problem with that. Most of my cooking is gluten-free but I do make him and my daughter wheat pasta. He enjoys bread and pizza occasionally so I don't have any desire for him to give that stuff up (and yes he brushes well before we make out!)

Susan

I've read in many different places that the Kraft cheese powder is gluten-free and Kraft is a company that doesn't hide ingredients. The powder comes in a sealed packet so you don't have to worry about contamination but I'd wipe it off first.

I've also heard that you can buy just the powder in some stores but I've never been able to find it, if someone has a source for this (online preferably) please post it!

Susan

I don't know about Phayzme but Rolaids makes a antiacid and anti-gas called Rolaids Multi Symptom and they told me it was gluten-free it works wonders for me.

Susan

Oh I have mixed feelings about this... of course we all know its not a wheat allergy and totally different. I certainly try and teach people who say its an allergy that it is totally different. However, when I get the people like the woman that you ran into, I tell them once and move on. For me its not worth the aggravation of getting so pissed off. The only person you upset was yourself and your husband and whats the worth in that?

I hate to say that some people are either not smart enough to get this or they don't care or they are nasty people and see they are upsetting you and they continue to do that.... exactly because they like the reaction they get from you. My life is flying by... and I refuse to waste a single minute on those people. I'll tell them once and I'm done.

As far as your husband, well I know personally I want support from my partner however maybe he saw the futility of the situation and that must have frustrated him. Talk to him about it.

Best to you, Susan

I don't have much new to add to the great replies above but I can say that my boyfriend is so very supportive of me and I can tell you how much that helps. If your boyfriend follows a gluten free diet very carefully you won't have to worry about future health issues caused by Celiac.

My boyfriend learned about Celiac and read all the info I sent him and asked me a lot of questions, after that it was totall 100% support all the way. We were in Boston for a week this summer and during our afternoons of sightseeing he would pull me into a restaurant we wanted to eat in that evening so he could talk to the chef. He was just so cute stepping up to the plate like that and it was nice to have someone else on top of the gluten free thing for me, once in a while.

We travel a lot and he always checks before hand if there is a Whole Foods market in the place we are going to, if so after we get our car at the airport we stop there and get stuff I need, if not, then we travel with a carry on bag of snacks for me (and things like gluten-free soy sauce so we can have sushi).

Inspite of all this wonderful caring, he has somehow managed to make it "not a big deal" for me. I was afraid when I got it that gluten-free would become an issue for us, we both love to eat in new places and we travel together a lot. After I told him about it his answer was, ok no problem not a big deal at all. And although he takes my gluten-free status very seriously, he never makes me feel funny or odd because of it. And that makes me feel sooo good. My attitude, in great measure because of him, is: its not a big deal, I do it and I'm healthy.

So like everyone said, support is the most wonderful thing.

Susan

Well I felt like you in the beginning too and I still use some shampoo's that may contain wheat in them (my Bumble and Bumble.... but I have very fine fly away hair and it really adds body and bounce) but I use a hand held shower sprayer and make sure I rinse it down my back not near my face or mouth.

However that being said, since even a little gluten can make us sick its important for us not to ingest even a little bit and I guess those people are just being super sensitive. I don't think you can get symptoms of being glutened by rubbing a body lotion that contains gluten on your leg for example. However you have to be sure not to get it in your mouth, ie, be sure you wash it off your hands and etc. I think for a lot of people its just easier all the way around to be totally gluten free.

Susan

I submitted a long comment, the more of us that do the better. I had to search to find it there are pages of "dockets" and I think the gluten one is on the 4th page at the top.

Susan

I'm not familiar with Joe's ..... is it a chain?

I really understand with the poster that said, when I go out I want food I can't/won't cook at home. Me too! I've found here on Cape Cod that in our better restaurants... one of my favorite being Grill 16 in Hyannis, first off the chef makes most of his sauces by the reduction method, he does not thicken with flour at all so most of the sauces I can safely eat there. Not only that when I do find a dish there I want, say the salmon and it has something on it that might gluten me, he just takes it out (when possible) or takes a plain piece of salmon and doctors it up for me with things I can have.

Needless to say I don't go there on Friday or Saturday evenings because I'm sure I would not be able to get this sort of service.

Thanks, Susan

I like the idea of a newbie being directed to a page just for them... with links and maybe common quesstions.

I know when I first got here the whole message board concept was fairly new to me and like speaking greek, I didn't know how to do it, so I couldn't have searched even if I had known you could do that. It took me months to see the "My Assistant" thingy and another few weeks to figure it out.

So as much as I hate reading the same questions over and over sometimes people are so overwhelmed with the diagnoses of a life long disease and may not be as adept as some of you all on the computer... well they don't search and just ask.

Which is why a newbie page they are forced to go thru would be good, had I been sent there initially I would have checked out the food lists, the restaurants, the products and I would not have been so frightened. But lastly I wanted to connect with some people that also had Celiac.

But anyhow I'm sure you all know this but still when I read another can I have xxxx question instead of saying "on no, not again" I try and be patient.

Best, Susan