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Well my brother is building a house in this area of Florida and we went for our first visit. For those of you not familar with the panhandle of Florida its very pretty, very "old Florida" in places, much of the area around where I was in protected in conservation areas so its all in its natural state.
However, let me tell you I was glutened every single day. I'm so sick now I can't begin to tell you. I took my gluten card into each restaurant, spoke with everyone... and each time I somehow got glutened. This is really upsetting to me because I do travel often (at least monthly) and I've had pretty good luck eating out. Now I'm very hesitant to eat out any more and I'm in a position where I really have too.
What was worse is that my daughter has a life threatening peanut allergy and every restaurant in this area of florida fries with peanut oil. So my daughter couldn't have anything fried, even many of the local potato chips were fried up in peanut oil. One restuarant put french fries on my daughters plate and I said to the waitress that she told us they were done in peanut oil. So she swipes them off the plate. I tell her we need a new hamburger, that we aren't taking that chance and she goes and talks to the cook and he says its fine. I say its not. They say tough. When the waitress comes back at the end of the meal she says oh didn't you like the hamburger? My daughter says, its covered in peanut oil and the waitress says, well the cook said its not. I was so angry. As an FYI there is not even a McDonalds in this area.
Is there anything I can do to make me less sick? I have the runs so badly and I feel terrible. I feel like never leaving home again. I'm very depressed about this.
Susan
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I was diagnosed in September 2004 and cruised over the holiday's with Windstar (part of Holland America) and they were wonderful to me, in 10 days I was not glutened once.
I have a lot of experience with cruising and food issues, my daughter has a life threatening allergy to peanuts and servere allergies to tree nuts. We have cruised with Norweigen (oops spelling is off and I'm too lazy to look it up) and Royal Caribbean.
Both cruise lines were very careful with my daughter's allergies and we never had an ounce of trouble. I did notify every cruise line prior to our cruising that we have food problems and all 3 cruise lines prior to the cruise told us they would "do their very best" to accomadate us, which did scare me a bit prior to getting on the ship. But once on the ship my first stop is to the Matire'd, who in all cases on all 3 cruise lines, didn't have any problems dealing with us, as a they said to me, we do this every day. They went over menus and ingredients with us every single day. On Royal Caribbean when I went to talk to the Maitre'd... I said hi my name is Susan Kelly and he said... ohhh the peanut/nut people, they were forewarned about us and totally ready!
My gluten-free experience on Windstar was great, its a very small cruise line (sailing ships) so they did not get a special gluten-free food for me but the chef would make me special things, especially desserts in the evening.
All in all my cruising experiences have been far easier then regular restaurants.
Have fun! Susan
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I have tried virtually all the bread products mentioned here... some are ok, and some are awful (to my taste buds at least) but so often rice type breads stick to my teeth, they seem to be ground so fine that they are sticky.
I have found only 2 products that to me are worth eating.... one mentioned here is the bakery at Whole Foods Markets, they are have their own gluten-free bakery now and although I've not tried all their products, I've not had one that wasn't excellent.
The only bread I really love wasn't mentioned, Manna by Anna, if you google it you will find where to order it. I use it in a bread machine and it comes out wonderfully (I do use a gluten-free dough enhancer). Its like a hearty wheat bread and it never crumbles or sticks to my teeth. It can be made in the oven too and I do it that way for hamburger buns and drop biscuts. I can't tell you how good it is!
Susan
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I've been able to get the EnviroKids Animal Crackers at our Whole Foods for quite a while, they are good and they do make good pie crusts. I love their rice bars too.
Susan
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I've been away on vacation for a week... (and got totally glutened.... but thats another story) and I wanted to say how impressed I am with everyone here voicing various opinions and no real fight has broken out. Thats the only way we can understand others views and the best way for change to happen. I always hate when the "discussion" gets personal and name calling starts because that effectively ends the discussion and I don't get the benefit of the views of others.
I'm a lapsed Catholic, but my mother is a very good catholic. Someone said it wasn't fair to call the new pope on his desire to keep the church the way it is. I disagree with that, this isn't about "fair" its just a discussion and even if my opinions are different I have a right to have them be heard. To disagree with someone, in my opinion, is fine, its how we learn, as long as its not done in a vicious manner.
I honestly believe that if you have accepted god into your heart and live your life (as best we can) with those teachings in mind, that wheat or not in the host is not an issue. So I agree with the person that said oreo's would be fine, I think so too.
Someone else asked why the Church has such an unfriendly stance towards women... thats easy... its because its run by men. I think in almost any organization that is run by only one group... you tend to eventually make rules, laws (whatever) that mostly benefit that group.
The catholic church has evolved over time and I think it will continue to, I honstly believe that it will have to change its stance toward woman and become a bit more open and welcoming to survive. However, I certainly agree that this will take a long time in the Catholic church, a really long time.
Susan
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I travel and I have to eat out and even if I didn't, eating out is so enjoyable for me that I refuse to give it up. I agree that steakhouses are the easiest, expensive resturants I've never had a problem at, just don't go on Friday or Saturday evening until they know you. Expensive places have a chef not a cook and in my experience they have far more food knowledge and seem to care more.
Some sour creams have gluten (so I've been told) so I usually stick to plain butter with my baked potato and fish is a good choice too. I will not let this disease change my life any more then it has too. And just fyi, I too (once) have been glutened at Outback.... and I not only tell the manager I have to be gluten-free but the server and I ask them to speak to the cook. But it still happened and I'm sure it was from cross contamination.
Susan
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Since the original poster said they were new to gluten-free I just wanted to say as far as Amy's frozen meals you don't have to call the company or do a lot of searching to find out if they are gluten free. They will say so on the front of the package usually in the right or left hand corner of the box. Also on Amy's other products its listed too, her salad dressings for example say gluten free on them if they are gluten-free.
Susan
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I have had great luck dining out and being gluten-free. I travel often so its just easier for me to eat out as opposed to carrying a ton of food with me. I've had good luck at the chain places that have a gluten-free menu and the best luck at fancy resturants (I just had 2 great meals at Nick's Seafood in Chicago).... but I always try to go on any day but Friday or Saturday nights when most places are really busy. If I have to eat for the first time at a restaurant on Friday or Saturday evening I call ahead and speak to the manager and the chef if possible, and once we work out my dietary issues I then tell them when I'll be there (and make a reservation if possible).
I've only been glutened once this way... so for me its working fine and I'm glad, I love eating out!
Susan
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Hi, I can't help you with finding a doctor since I'm not in your area but I just want you to know that there are a lot of people out there (and on this list) that are not officially diagnosed with Celiac. My doctor specifically told me I did not have Celiac. He's wrong.
I had symptoms for years, like you and have the runs every time I eat gluten. I went on a gluten free diet and all my symptoms went away. So to me, thats all I needed to know.
However when my mom started to show symptoms and my daughter gets belly aches a lot, I did have my genes tested and I have the 2 main genes that cause celiac. So that confirms it for me, my doctor was wrong and all the specialists I went to were wrong. You can have celiac and not have your intestines damaged (yet), which is why my blood tests were negative.
If you read this list a lot I think you will see that a gluten-free diet really isn't that hard. I travel often and I do fine out there in airports and the real world. I eat a lot of simple food, fruit, veggies, plain grilled meat, rice, potatoes. When I travel I always pack a few snacks for the plane. Find a good health food place, like Whole foods Market (I drive almost an hour to get to one) and they have a lot of great easy and quick gluten-free foods and snacks.
Each person has to make their own decision but for me to get rid of the runs, which I had for over 8 years (so badly I was often confined to my house) there is no way I'd eat gluten again.
I wish you the best! Susan
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I've tried all the above and they are good but the bread mix Manna by Anna is by far and away my favorite. I made bread, muffins, buns with it, its so good.
Susan
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I love EnviroKids bars (and I'm no kid!) they taste great and are fairly low in calories for a snack (and compared to other gluten-free foods like cookie). I keep a few in my purse all the time.
I react to Fritos, every single time and yet they are supposedly made on a dedicated line. I don't get it, I eat many other corn products without any problem at all, so I can't figure this one out but I do react every time. However I rarely eat greasy food so maybe its the grease involved in them. Another greasy food I rarely eat but don't have any problem with is McD fries. They have always worked for me.
Susan
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Well in a round about way, I've been dealing with this issue for years even though I just went gluten-free in Sept. 2004. My daughter has peanut and tree nut allergies (life threatening) and on top of that, is a picky eater. My daughter and I have traveled extensively and we have never had a problem with her food so now that I am gluten-free I am doing the same thing for myself as I do with her.
The only sort of restaurant we've had problems in are big chain places so unless you know they are gluten-free friendly (like PF Changs, McD or Outback) I'd stay away from them, but in small mom and pop places or nice places with a "chef"... or local joints I just tell the manager and waiter that my daughter has life threatening food allergies and that we need her food cooked plain. I'd pick something off the menu that she liked (salmon, chicken, etc) and tell them to just grill it, no sauce, no seasonings and they are happy to. When they hear the words "life threatening" they listen.
Now when I'm out on my own, I don't usually say "life threatening" (unless I feel they are not listening to well) but I do say I have food allergies and I need my food done a certain way. I have not had any problems getting my food grilled plainly, a baked potato, steamed or sauted veggies. I react to gluten very obviously so I know when/if they screw up and its only happened once and that was at Outback (sadly).
In good restaurants I usually go thru the song and dance about gluten because they have a chef and they know what's in their food, sauces etc. I was in Mortons in Houston a few weeks ago and I actually had the sauces and such because the chef assured me that he would never us flour to thicken a sauce, he made it perfectly clear they are reduced and thickened by cooking them down. They really went out of their way for me and even our server was very nice. She asked if we'd even like bread at our table (my boyfriend is not gluten-free, so yes he wants the bread). On the steak I had he didn't want to use Morton's seasoning but seasoned it with olive oil, garlic, salt and pepper. It was a wonderful meal.
Susan
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I second Manna by Anna its so good.... doesn't even taste gluten-free.
Susan
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You said "they are telling you to trust your doctors"..... what authority is telling you this? Quite frankly everything I've read lately, on the net, in magazines, in newspapers says just the opposite, a good doctor is just one piece of the puzzle in our total health care picture and we need to advocate for ourselves when it comes to health.
Doctors are not god and I'm hoping you know that. My first doctor took one blood test and said go back to eating gluten you don't have celiac. I said to him but I've been gluten free for only a week and every single symptom that I've had for years and years is now gone. You know what he said, "its all in your head". (felt like it was all in my digestive system!).
I changed doctors and was lucky enough to find one that agreed with me, if going gluten free makes me symptom free then its obvious that I have a gluten problem. I finally got my DNA tested and I have both of the main gene for Celiac.
You have to be part of your own health care.... and you have to help decide if you are Celiac or not. If you symptoms go away on a gluten free diet, if you feel better, then do it, if not continue to investigate. Be aware that getting a biopsy isn't the key to the city either, the other testing I had indicates that I have no malabsorbtions problems and such so mostly likely if I had a biospy (I didn't) it would be negative for celiac... but all this indicates is not that I don't have Celiac but only that it has not damaged my intestines yet. Well I'm not waiting for that to happen!
I guess my point with this is, its not a disease thats easy to diagnose... and most people suffer from symptoms for years with it... so its not a matter of getting our stories straight, may of us have totally different symptoms and yet we all have the same disease... its not cut and dry.
I'm not sure who you are mad at but anger won't fix this either. I know of some Celiac's with very few symptoms that still eat gluten on occasion... as most on this list will tell you, thats a bad idea, but in the end, you have to decide.
Good luck, Susan
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I was diagnosed on 9/04 too... most of my family is clueless too and really don't have the drive to figure it out for me... I was pissed about that over thanksgiving but I've come to a far better place about it. Hey its my disease and my issue and they all have their own problems... I decided I can stay mad at my family forever or just do what I have to do. So I choose to love them and I'll deal with my Celiac issues.
I tend to think every that happens to us in our lives will turn out exactly how we embrace it. If you think having Celiac is a pain or hassle, thats exactly what it will be. If you look at it like a new challenge then thats what it will be.
Someone (I think on this list) said they were so glad when they found out it was Celiac and not some terrible disease.. heck this can be controlled with diet, so essentially its curable. My brother has mouth and tongue cancer.... he has 4 months to 4 years left (odd time table, I know) so in comparison to that, wow did I get off easy!
If you look at it like a path to good health its just easier. If you decide to go totally gluten-free keep in mind you will have slip ups, I've read of some on this list by people who have had Celiac for years... it happens but its no reason to get depressed, you just learn from it and go on! Enlist your boyfriends help... I did that with mine and he is so supportive, he goes to bat for me all the time in resturants and he carries a gluten free card I made on my computer with him so he can show it to the chef at resturants..
You can do this, its not so hard. Also if you have a Whole Foods market around you (check on their web site for locations, they are really almost everwhere) they carry gluten-free baked goods which are really tastey (and lots of other gluten-free stuff) I drive an hour to get to the closest one but its way worth it for me.
Best, Susan
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Linda.... I hate to say this but I don't think you can go around eating things like frozen dinners unless you have checked the company websites to see if they are gluten free. Amy's makes frozen meals and some are gluten free but they label it right on the front of the package. There are a few companies I think that make Thai and Indian frozen foods that are gluten free and say so on their web sites.
But in my estimation, very few "mainstream" frozen foods will be gluten free and even if its not on the label the issue of cross contamination is there.
Once you get the hang of this its not hard but I'd never eat a prepared or packaged food unless I checked it with the company first. Sadly reading the label isn't enough.
Susan
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Its my opinion that very few in the medical profession have much to offer for us Celiac people, even if you get diagnosed by them they are clueless about where gluten is found.
I have learned more on the internet then my doctor knows, that's for sure.... I love the various lists like this one, people are so helpful and there are a bunch of good websites too.
Susan
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A lot of good advice here, as usual, but I want to add that when you take advice from someone about what has gluten and what doesn't, think about who you are taking it from... a worker in the grocery store is NOT someone I'd trust with my gut.
Purdue rotisserie chickens are gluten-free and I spoke to the grocery store manager and the Deli manager to be sure they don't add anything to them at my store... they don't, they just roast them.
I would never eat the sweet potatos or mashed potatos at the Deli counter, they have a huge ingredient list and even if they are gluten-free I don't want all that other stuff in them. It doesn't take that long to chop up a potato and boil it, since you didn't have a stove, nuke a baked potato.
As far as eating out.... I am forced to do it, I travel a lot and there is just no way I can carry food with me. I just got back from 5 days in Houston, I ate out every meal and was not glutened once. For dinner I eat at a restaurant with a chef not a cook, there is a huge difference and if one can't afford that there are some chain and fast food places that have gluten free menu's. But I almost never have problems at a good restaurant.
I know its not easy and you really have to think differently when you first start this..... but once you get the hang of it, its not so bad. keep trying!
susan
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Oh I made my Manna by Anna in an old bread machine too... mine is an old Panasonic and the mix by Anna is actually too much for my small loaf thing in the bread machine... so... here is what I do:
I put it all in the bread machine loaf thing and mix it up just like it says... I put it in the machine and set it on the white cycle which is 4 hours long (2 rises) I set a separate kitchen timer for 2 hours and catch the bread on a rise... by this time its risen above the top of the pan to the bread machine top. I take out some of the risen dough at this point and pop it into the english muffin rings I bought. I put them in the oven and cook them separately. In 2 more hours my loaf in the bread machine is done.
So the final tally is: one loaf and 4 english muffins from the one package of mix. This bread is great and I'm limiting myself on how much of it I eat and how often because since going gluten-free I've lost 8 lbs and I don't want to gain it back!!
Susan
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Wow, you're all going to hate me. I've been gluten-free since late Sept. 2004 and I've lost about 8 lbs now, without trying. The major difference for me is I'm not eating hardly any "bread" products. Almost no bread, cake, cookies (yes I know there are tons of gluten-free products). I do have starches.... rice, potato, pasta (very rarely).
When I found out I had to be gluten-free I took that as a good time to change my entire diet.
Susan
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I had EntroLab testing done and I had both of the main "genes" for celiac... I also showed auto immune reaction as well. Just like you I didn't have any malabsorbtion so I guess I don't have any damage yet.
But why push it until I get damage, my health is really important to me so I never considered continuing to eat gluten... what will you do, eat it until you damage your intestines? And after reading this list for months I've become well aware that many different types of damage can occur.
The other issue is that you said you have had various GI problems for years, I'm exactly the same way... do you want to continue to live with those GI upsets? I guess these are questions that everyone has to answer for themselves.
Once I went totally gluten-free all my GI upsets went away and I can't begin to tell you what its like to live normally! I really had forgotten what it was like not to have gas, the runs, pain, wow I wouldn't go back to gluten for all the tea in china. One other great thing is that my outlook has changed, I'm far happier and have more energy then I had before going gluten-free. (not to mention that I've lost 5 lbs and its come off without dieting).
I'm a happy camper.
Good luck on whatever you decide!
Susan
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Hmmm it makes me wonder if it is DH if you are gluten free...
I was only diagnosed in the fall of last year and I've had a rash on my foot and butt cheek for years, if I use cortisone they do tend to get better (not gone but better). No one ever knew what the rash was.
Then I got diagnosed and did a lot of research about being Celiac and of course I ran across information about DH and I though, Bingo, thats what I have. My rash didn't quite look like the pix on the internet but it resembled it close enough... since being gluten-free for about 4.5 months now the rash is better then it ever has been and doesn't itch at all any more and has shrunk down to about 1/3 the size it was on my foot and the one on my butt check (sorry to be so graphic) is totally gone. So I'm pretty sure that's what my issue was.
Perhaps you have your reasons for not wanting to drive a couple of hours to get a positive diagnoses but don't you think it would be worth it to be sure... that Dapsone is pretty powerful stuff (from what I've read, I've never used it) and I'd think that its not the best option to be using it if you don't have DH. I think your health is more important then a couple hour drive (I drive into Boston to see my doctor, 150 mile round trip every 2 months).
I'd consider getting a biopsy.
Susan
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Hi Gina! Welcome to the list.. I think a lot of us have somewhat similar stories in that we have been diagnosed with everything else first other then celiac. I too had the IBS and lactose intolerance thing and my blood work for Celiac came back saying I do not have Celiac. I just didn't believe that because immediately after having the blood drawn I went totally gluten-free and in days 90% of my symptoms were gone, and like you, I had years worth of symptoms...
My doctor apparently relies on the blood test because he specifically told me, start to eat grains again you need them. Well I switched doctors (my new one is somewhat better in regards to the celiac thing) and I paid for the EnteroLab testing. It came back that I have the two "main" genes for celiac. NO KIDDING, I knew this. My current doctor wanted to do the invasive tests to be sure, but I don't need that. I know this is what I have.
Every time I've accidently ingested gluten since going gluten-free I'm sick as a dog, so its pretty clear. So don't feel badly if doctors don't support you in this, if going gluten-free cures your symptoms then to me thats the answer. I finally talked my mom into going gluten-free, she has had the runs for years and has seen doctor after doctor and guess what, 5 days after going gluten-free they were gone. But she cheats because she can't live without bread, sigh.
This weekend I'm making her some Manna by Anna bread, I ordered a case of it and its unreal! The best gluten-free bread I've ever had and better then many regular (flour) breads I've eaten. So if you need bread or sandwiches, try this stuff, its awesome!
good luck, Susan
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Its supposed to ensure the bread doesn't get crumbly and it prolongs its freshness, its got lecithin, citric acid, and other stuff in it. I was told to get it at the Gluten free mall but they are sold out right now so I googled it, just like you did with the muffin rings.. and found some gluten-free dough enhancer at:
Open Original Shared Link
thanks for your help, Susan
I Swear I Didnt Eat Gluten
in Coping with Celiac Disease
Posted
I get stomach pain when I get glutened, thats how I can for sure tell its gluten and not some sort of bug... My belly and intestines actually hurt.
Susan