pixiegirl

I think some of you have mis understood the question, or at least how I understand it is this: Lets pretend there was a pill that really did cure you, then what? Or for those of you that keep saying its just a treatment (remember we are pretending here)... lets say they figure out a way thru stem cells or gene splicing or whatever to cure Celiac, then what?

I'd of course be cured, however.... I would continue to eat in a similar manner to how I am now... very few processed foods and more "real" food. But I would once in a while have a beer and pizza or sour dough bread. I can't believe if it truly was a "cure" that people would choose not to be cured, many of us may well continue our current pattern of eating, I'm not sure wheat is really good for anyone, but I'd give up the accidential glutenings and how they make me feel in a second.

However my daughter has a life threatening peanut allergy, she has airborn reactions and I'm hoping the cure for that comes first. She would not start eating peanut butter, the smell of it makes her sick but at least we could go places and not worry she was going to inhale it. Like the grocery store (open peanuts are in many groceries) or see a baseball game (she can't go to one, not even in a sky box), Thai food, chinese food, etc.

Susan

If in fact your intolerances are allergy related then you can do damage there as well, if you continue to eat an item that you are allergic to, your body continues to mount an allergic response to it each time you consume it, often this response gets more severe each time you consume the food, leading to more allergies and more serious allergy.

I think when you react to anything.. food, lotions, hayfever, your body is telling you that whatever is causing the reaction is NOT good for you.

I have food allergies and I test "slightly allergic" to a variety of items and some doctors say that you can eat those items occasionally, but for the most part I just avoid them, I can't believe when I have a reaction its good for me.

Susan

I believe Stephanies on Newbury Street has some gluten-free items. I've also eaten at Grill 23 and Capitol Grill without any problems. Turner Fisheries as well. PF Changs. I do fairly well when I'm in Boston. And I've never called elephant Walk ahead of time and never had any problems.

Susan

I have EGID in my stomach, and large and small intestines. I was diagnosed via endoscopy. I had allergy tests and an elimination diet and I take Gastrocrom prior to eating. I'm doing well for now. I avoid foods that cause me problems. The Gastrocrom really helped me turn the corner and without it I don't do well at all. I believe on the scale of drugs its got very few side effects. (often the first treatment for EGID is steroids but my doctors wanted to start with a treatment with fewer side effects rather then more) and for me this is working out well.

Susan

You get diagnosed with biopsies done by endoscopy and colonoscopy.

At first I could eat very little but it seemed as I healed my gut up I was able to tolerate more. I can only have tomatoes in small amounts, no peanuts, no squash and of course no gluten. Things like fresh fruits and veggies I can only have in small amounts but when they are cooked I have almost no problem with them at all.

I'm doing quite well and for the first time in 14 year feel really good.

Susan

Ahh here I go, always one to take the other side ... well not really... it does sound like the bride is out of control but thats certainly not unusual for some weddings... its a stressful time and sadly people put such focus (financial, mental, emotional) on one single day, in the entire context of our lifetimes or one's marriage its seems a little silly.

That being said... you knew the bride ahead of time and I'm guessing she has been high maintenance all along so choosing expensive bridesmaid dresses shouldn't be a surprise. I wish I could tell you how many times I hear woman saying things like "I couldn't say no" and then they go on and complain about the bridezilla. You know what..... you could have said no. (I do agree its too late now). But for future reference there are a lot of easy ways to say NO and still have the bride as a friend, such as:

My heath issues are such right now that I'm not sure I could manage all the responsiblities of being in your wedding, but I can't wait to help you celebrate it..... or I don't think we can handle the financial responsibilites of a wedding right now so I'd rather keep my funds for an awesome gift for you both.

However at this point your in it so... in regards to the rehearsal dinner... I'd tell the bride that she has enough to worry about and you'll handle your eating. Then just like the way you distract a 2 year old, I'd ask her about other wedding plans to change the focus from what you will eat.

However now that you know how she feels, is there any possibility that you could call the restaurant, speak to the manager and explain your eating issues and I'd flat out tell him the bride feels awful about the fact I may not be able to eat a thing, is there anything I can have there ? You may be able to get a baked potato, a salad, steamed veggies and if so you can tell the bride I've talked to the restaurant and its all taken care of. I know we have this eating out discussion all the time on this list and certainly I respect everyone's decision about that but I eat out at least once a week and travel at least once a month and I can say for sure I've never been glutened by a baked potato and butter. (if you can eat those things)

I do feel badly for you, it sounds like the everyone is trying to micro manage things but when you let them do it all, it often comes back to haunt you. Chalk this up to a learning experience and grit your teeth!

Susan

i have mixed feelings about the nut free school issue, mostly at the elementary level if there are children with peanut allergies like my daughter's then I support it. My daughter had reactions almost every day in her elementary school, they would give her benadryl and then she would sleep thru the afternoon (whether in class or at home). It got to the point where she hated school because she got sick there almost every day. It wasn't a fun place to be and she certainly wasn't learning much being in the nurses office constantly.

It was interesting because the school wouldn't go peanut free but they were latex free (for one highly allergic child). And when you say the "if you make a school peanut free then people get complacent" ... I'm not buying that, I can tell you for sure that most parents with a daughter like mine NEVER get complacent, you just can't. However when peanut butter isn't smeared all over the school you just have fewer reactions over all.

My daughter spent one year in a peanut free school and not once did she have a reaction. I'm sure occasional mistakes were made but again there wasn't peanut butter smeared all over the lunch room. You asked why they don't ban gluten, I'm not sure it often causes anaphalactic reactions. And according to our allergist the number of children not only with peanut allergies but also with severe reactions requiring the use of an epi pen has gone up dramatically.

Again I think at the elementary level we need to do what we can to keep our kids healthy and safe at achool, as a child gets older, like my 15 year old they do need to learn how to manage it themselves. But we never let down our guard, with medi alert bracelets, epi pens, benadryl, cell phones, etc.

Susan

I really don't know why that is with bee stings and peanuts... in elementary schools peanut better is virtually everywhere... kids eat and touch stuff. But my daughter reacts in airplanes when they pass out peanuts. She is very sensitive now.

Susan

I posted in the EG topic about this. Both my daughter and I have peanut allergies, mine is mild hers is severe. My daughter is also allergic to tree nuts and peas (legumes like peanuts). We both carry epi pens.

There is a ton of info on the net about peanut allergies, its certainly well documented and studied... its not an allergy that is commonly outgrown (it can be but usually isn't). It also has a tendancy to get worse with each exposure (like bee stings).

My daughter had a bad peanut allergy initially. In public school she kept getting exposed to peanuts... kids eat it and its on their hands and door knobs, she probably had up to 10 exposures a year and her allergy went from bad to severe, she now has airborne reactions. We did take her out to homeschool her for a while and she went back to public in middle school as not as many kids eat peanut butter and jelly at that age. All thru middle school she had very few reactions and now in high school this year, so far she has had none.

My reaction is mild with itchy eyes, neck, skin.

susan

Ok it seems like you all are cooking the stuffing in a pan of some sort (either oven or stove top) and mine was inside the bird, which of course cooked for hours and I think thats what broke the stuffing down.

I will try some in a baking dish in the oven but I still want to stuff the bird and I'm thinking of a rice/sausage stuffing for that. I've never done a rice stuffing does anyone have a recipe?

Susan

what is hydroxizine and is it as effective as an epi?

Susan

Both my daughter and I have peanut allergies.. we both carry epi pens even though my allergy isn't in the "anaphalactic" area with blood tests its really hard to tell and most important (to me at least) is that peanut allergies often become worse with each exposure, so you don't really know if the next exposure will be the one you need the epi for. My daughters allergy is very bad, she reacts to airborne peanuts, so if someone is eating them near her she has a reaction.

My EG was diagnosed thru biopises when I had an endo and colonoscopy (at the same time). My GI wasn't even looking for EG (I am her first patient ever with it), just for some reason why I wasn't getting better. After the procedure she told me I had 7 small ulcers in my stomach and showed me the pix, they weren't bad, just sort of raw spots but she said they did biopsies of them. It was a couple of days later that we got the report that all those areas were filled with eosinophilic cells and so were all the biopsies done in my colon. So there was my answer.

Often the first line of defense (at least for adults) is going on steroids to allow your gut to heal. Both my GI doctor and allergist felt that (prednisone) was just too "big gun" to start with and my allergist started me on Gastrocrom a Rx with very few side effects. I too went on a rotation diet for a good 4 weeks and between that and the Gastrocrom I really got better quickly. I still take the Gastrocrom today prior to each meal and for the most part I feel really good.

There are a lot of different ways to treat EG (or EE or which ever you have) and I think from the various things I've read that being open to trying things is a must, it seems like different things work for different people.

Susan

Hi Mandy,

I grew up in Michigan and I always tell everyone I've had my life time quota of snow while growing up. I bet I hate winter more then you do, with a passion, believe me.

I'm like you with the temp, I'm ok until about 50 ish and below that I really can't get warm. I have a dog that I have to walk at least a couple times a day (the other times its out in the yard) and you should see the get up I wear in cold weather, my neighbors often tease me that I could winter cold weather anywhere with all the down layers I put on.

My skin reacts poorly as well and I have to keep myself slathered with aquaphore. But the very worst part for me is the lack of sunlight. I have one of those "sun" spectrum lamps on my work desk and I use it every single winter. I get moody and want to hybernate until spring.

The lamp has helped a lot and I try to get a couple of projects going during the winter (last year I organized all the recipe's I have into a huge book with hand drawn illustrations). But right now when its getting colder and the days are getting shorter... I'm dreading it all!

BTW I live in Cape Cod and usually we don't even have much snow (we get socked good about every 8 years) winter here is some snow lots of rain.

Susan

Hi I'm sorry I'm late on this topic but I'm only a part time poster (too busy with work stuff). I have eosinophilic gastroenteritis. Its more common in children (or at least more diagnosed) so initially I was very frustrated with trying to get info for adults, so you should have a somewhat easier time finding info for kids.

I was diagnosed with Celiac a few years ago and I did improve but never fully and then started to get a bit worse... and I knew I was totally gluten-free. So last Feb. I went in for an endo and they took biopsies and found I also have EG.

I went thru allergy testing and was found to be allergic to a ton of foods and also have allergies to enviromental stuff (mold, pollen etc.) I'd be happy to answer any questions you might have, I'm no expert and its an issue that is just getting more diagnosis therefore more info is out there about it. But I'd be happy to help in any way I can.

Susan

Last year was my first year making gluten-free stuffing. I used gluten-free bread and made corn bread and cut that into cubes and dried it.

Well it wasn't so good, the cornbread turned to mush and so did a lot of the gluten-free bread, how do you avoid this, I want a stuffing I can cook inside the turkey not on the stove top.

I'm thinking of maybe doing a rice stuffing because the mush last year tasted good but looked gross.

Any suggestions?

Susan

You mentioned that you like to take cruises... just so you know I've cruised a number of times since going gluten-free and have had no problem. I've taken royal caribbean and Windstar with no problems.

Susan

I eat out often (by choice and due to frequent business travel) and I'm not often glutened any more, I've really got it down to a science, however I'm assertive and I get a lot of people involved (maitre de, waiter, chef). When I'm with my boyfriend he always asks to speak with the chef and I don't think we've ever been told that we can't.

However all that being said, I've given up eating at mexican type restaurants... I don't know why (flour all over the place maybe) but I've got into trouble more there then any place else.

I've always said that I have very little trouble at fine restaurants, but last week I was at Martha's Vineyard and we went to a breakfast place in Vineyard Haven. I was nervous about it but when I spoke to my waitress she said, just tell me what you need and I'll see that its done that way, we handle food allergies and issues all the time.

I told her I really wanted poached eggs over their corned beef hash and asked about the hash. The cook came out to the table and said they make the hash from scratch every day and ran everything in it by me, he even asked if gluten was my issue (I had said wheat allergy). I had it and had no problems at all.

It seems to me, lately, when I go into places more and more of them are familar with gluten issues.

Susan

My mom uses that excuse... that she only has a touch of Celiac, or that I have it "worse then she does". I've explained to her a million times that its more like being pregnant, you either are or your not, there is no gray area. So you either have Celiac or you don't.

Since I do and I already have other issues cause by the Celiac (food allergies, leaky gut, eosinophilic gastroenteritis) I'm just not willing to cheat and I've been gluten free for.... hmmm either 2 or 3 years now and I don't really miss gluten that much. Yeah it would be nice to have a beer but other then that I've found pretty decent substitutes for most things. I'm eating so much more healthy now and I feel so much better.

Susan

I honestly think I do all of those... how embarrassing.

Susan

I'm not at home right now so if you can wait I have a wonderful recipe for cheese cake. Virtually all cheesecakes recipes are gluten-free other then the crust. And the good thing about cheesecake is it sets up so you don't need a crust.

I've also made a crust out of gluten-free cookies.

Susan

LOL ok here is another opinion.... I think it depends on you, how likely you will stick to a gluten free diet if your not 100% sure you have Celiac.

I didn't even have a positive blood test at first, but had issues for years, I was tested for Celiac and was told the test was normal, having never heard of the disease I researched it and every single symptom (well almost) I had. So I did a test for a week... no gluten at all. And the runs I had for 11 years went away in a week. So I knew right then and there that I was not going to ever eat gluten again (intentionally).

About a year later in an argument with my doctor (I have since changed doctors) I when thru Entrolabs and came back with everything saying Celiac, my DNA test I had both of the really "main" genes for Celiac (my doctor was insisting that going gluten-free help me only "in my head", but in truth is sure helped the other end too) and he still didn't buy it.

So my point is.... some people need a positive test to actually stay gluten free, some don't. All I needed was a week of going gluten-free to convince me.

Susan

This thread is funny... I'm not always here enough to know all the personalities but I guess I should hang around more.

I have fake nails... I have thin fine hair and my nails are the same way, they DO NOT grow long, they are so thin they bend and break so I started getting acrylics and for the past year I have Creative nail pink and white acrylics... so I have a french manicure that never chips, scratches, fades. But high maintenance, they have to be done every 2 weeks.

I guess I'm a girly girl... I love clothes, make up, shoes, handbags. However I grew up in Michigan so I can ride a dirt bike and use a circular saw too! My boyfriend (of 5 plus years) loves me with make up and all girly girl, but he also loves me in the morning with my hair sticking up and no make up. He's a real charmer so don't get me started on him.

I don't get in to Grey's... I've tried... I love Lost and now my daughter and I watch Jerico which is on just before Lost... I can't watch it without her because it scares me too much (its my worst nightmare, about getting nuked). My daughter told me if I tell anyone I like Meerkat Manor she will run away from home. HA HA so don't tell her I just told you all.

Well.... I can't wait to come back and read another 20 pages but I'm off shopping in Boston!

Susan

I love it too, its a bit more pricey then most chain restaurants but certainly not expensive.

susan

Yep botox is expensive, but it really works, the most important part of botoxing is to find a really good injector... everyone does it but you need to find someone that is good with it. I get my done by a Plastic surgeon in boston and nothing is frozen on me. I can still raise my eyebrows and wrinkle my forehead... a bit. My dr. agrees that frozen looks totally fake so he's very skilled at reducing the wrinkles but leaving some movement in the areas I get it.

Susan

Wow I'm always surprised when some of you think that perhaps a friend isn't a friend if they don't "get" your gluten issues. I guess it depends on the level of friendship and I guess the friend. My very best friend in the whole wide world (since I was 14) understands that I can't have gluten and she generally knows where gluten resides but... each time she is cooking for me, she asks what I can eat what I can't (she knows i can't have bread but say with dressings or rice, sauces) and even though its repeated over and over she still asks and I don't get mad.

When we go to restaurants I figure it out, I don't expect her or any of my friends to only go to gluten-free places for me, especially where I live we'd be forced to go to only 1 or 2 places. I handle it, its my issue and honestly I wouldn't trust it for others to remember it all, it took me months and months to figure out gluten so to expect my friends to do it now and then... well I just don't.

Once in a while they all go to restaurants that I know I can't go to, that have huge cross contamination issues and I would never sit there and not eat so I turn those invitations down, however when I do decline I say... I know that restaurant and I'm positive that I can't get something safe for me. In almost all cases my friends stop and say.... oh well we could go somewhere else. And I'd say 75% of the time they are willing to go to a place I can eat. Most of the time they have just forgotten and thats fine with me. But once in a while they pick someplace I can't go and thats fine too.

I have said this many times here before... I travel all the time and I've almost never been glutened in an upscale restaurant. Last week I went into a nice place with a friend and I didn't have the opportunity to call ahead (I usually try to do that). I walked in and talked to the maitre d and the minute I started he smiled and said we have dealt with gluten issues many times don't worry.

My waiter was tipped off and said to me why don't you tell me what your interested in, pick any menu items and I will speak to the chef about them. So I choose 3 items and one was a seafood pasta (with lobster) and the waiter came back with the chef... who told me he understands gluten and talked about it and i realized he knew his stuff and he said he could do the seafood pasta over parmasean risotto that he makes from scratch (including the chicken stock so there was no gluten in that either) and thats what I got and what a fantastic meal! This has been my experience 99.9% of the times in fine restaurants, most chefs are a bit insulted when I ask about flour in sauces .... a good chef cooks his hollandise and such down, they don't add flour to thicken.

I'm thankful I can afford good places but even in small places I can do fruit and poached eggs for breakfast, salads or fish/chicken for lunch or dinner... baked potatoes... But again I like it when my friends remember I have food issues but I don't expect them to actually help me manage them.

Susan