View Full Version : coeliac disease
Just been diagnoised with coeliac disease, does anyone have any info on where to eat, this is a stab in the dark but i've been trying to find out on line, but not enough info [msnsad]
it's a gluten free diet, hopefully someone out there has some info
thanks in advance
Nostromo
20-10-2004, 00:03
In the UK, all Gluten Free food is clearly marked as such. I did not particularly look for the mark in the US, but I am sure that food sold in Publix & Winn-Dixie will be similarly marked. If you are going out to eat in a restuarant, make sure that the wheat containing products (bread, bun, rolls, pastries, pies etc) can be Gluten free. Gluten Enteropathy is now well recognised and I am sure that most major restaurants will be prepared for requests for gluten-free meals. If you are going out, ring the restaurant and speak to the manager beforehand to be absolutely sure.
The problem, of course, will be when you have to eat impromptu, like while visiting a Theme Park. You may not be able to 'tuck into a burger' like the rest of us can when hungry. The mainly youthful staff at smaller outlets may not be knowledgeable in such matters and you will be wise to making alternative arrangements - like taking your own food into the park.
Hmm....this is a stab in the dark too! Long time since I studied dietetics but you should be getting some good information from your doctors? In general gluten included products tend to be the things with thickening agents in, so flour, bread, potatoes, pasta that type of thing? I dont think you are going to find places to eat that are specifically useful but I do think that you should find that labelling on foods in the supermarkets is quite helpful.
Im sure there should be a coeliac society that can give you good info.
Like with all these things, information is the name of the game, Im sure you will find someone with better knowledge than that.
Best advice of all I think.............keep your chin up!!!![msnsmile2][msnsmile2][msnsmile2]
Nostromo
20-10-2004, 00:06
A lot of companies like Juvela that make Gluten Free foods like Pasta and cakes are multinational and you should have no difficulty in finding outlets in Orlando that sells them. It might save you time to check before you go.
Magical Dreams
20-10-2004, 00:07
Are you looking at Disney or orlando in general??
If its Disney, contact Guests services with your requirements and they should be able to help.
If its orlando in General, could you eat from a buffet type restaurant??
That way you could pick what you wanted to eat.
I know that it will be difficult for you and frustrating.
Its found in processed foods rather than Vegetables and meats etc isn't it??
[chatter][chatter][chatter][chatter][chatter][chatter][chatter]
I am finding it very hard in the UK finding the right food, i feel like i've been living on Baxters soup for the last four weeks, i was hoping the US were more clearly marked then here, i shall certainly take your advise and call ahead to see if the restaurant can accomodate
Doctor mmmmmmmm took them 5 years to suss this out, basically said this is what you have, change your diet, no other info, been left to get on with it,
think i'll go private :( fed up with it
tezz7628
20-10-2004, 00:18
thought it sounded familiar [msnwink]
http://www.orlando-guide.info/forums/topic.asp?TOPIC_ID=11540&SearchTerms=coeliac
http://www.orlando-guide.info/forums/topic.asp?TOPIC_ID=7224&SearchTerms=coeliac
plus page 1 of
http://www.orlando-guide.info/forums/topic.asp?TOPIC_ID=13118&SearchTerms=coeliac
plus search for gluten free is giving further results [msnwink]
thanks Tezz, shall read this in bed tonight, finding it hard to concentrate tonight watching farenheight 9/11, what a wally [if you know what i mean]
caroline
20-10-2004, 00:30
Hi Sam
If you want to eat in any of the Disney resort restaurants you can call ahead for reservations or special dietary needs, call (from UK)001 407 939 3463
eagleydo
20-10-2004, 02:36
<blockquote id="quote" class="ffs">quote:Originally posted by sam2112
Just been diagnoised with coeliac disease, does anyone have any info on where to eat, this is a stab in the dark but i've been trying to find out on line, but not enough info [msnsad]
it's a gluten free diet, hopefully someone out there has some info
thanks in advance
[/quote]
Hi, my niece was diagnosed with coeliac disease a few years ago. Know exactly what you mean about info of what to eat etc.We all had to find as much info as we could via the internet etc. In the UK, SAINSBURYS are very good as they have a gluten free range. Will send you an email later tomorrow with as much info as I can. She also went to Florida after being diagnosed and I will speak to her about where to eat etc.
Jan
Our local Sainsbury's have a large section of gluten free products. Disney will also provide special dietary meals in their restaurants with 24-48 hours notice. You can also purchase gluten free products in health food shops both in the UK and Florida.
All the major UK supermarkets will supply you with a list of gluten free product that they sell if you ask. Also try your health shops - it is more expensive but there are products out there!
Publix have a section of gluten free product, and as many of the others above have said, Disney are very good. Fast food is difficult, but steak and salad (or meat or fish) is easy in plenty of restaurants.
Hi Sam,
Don't panic - it's really not as bad as it sounds. I was diagnosed 5 years ago ,and my 10 year old doiagnosed shortly afterwards.
Contact CoeliacUK www.coeliac.co.uk
Loads of info on food - even a book which lists what manufactured food you can and can't eat - although supermarket labelling is getting so much better. They also have local groups whic get together from time to time, and do food fayre etc.
We are in Berkshire - our local group is fantastic.
You should get lots of things on prescription - bread. pasta, pizza bases, biscuits.
Invest in a decent breadmaker and make your own - the bread is the worst thing but home made is fine.
As for Florida , it's really not too difficult, but get used to the fact that you don't get as many options before. I take flour with me and make rolls for the freezer when I get there - I'll give you a recipe / instructions if you like.
I find the buffet restaurants really good as you can see what you are getting - no surprises with things appearing smothered in mysterious sauces. Visit Chamberlains too , where the 17-92 crosses the 192 - it's a real treasure trove. I got so many goodies there I was really able to enjoy some treats on holiday. You can always have a big Mac no bun - and they don't hink you are mad in the states - they even have a button on the til which says ' No carbs' . Thank the atkins diet for that.
We always go self catering now, it's so much easier being in charge of your own food. Book yourself a villa if you haven't already.
I'll Dm you my phone number - ring me for a chat. The early days are the worst , when you don't think you can eat anything nice. There is loads you can it , you just need someone to point out whats Ok for you.
It's important you don't start the GF diet unitl you have had a biopsy , or you won't get a definite diagnosis.
Don't worry - you are going to feel so much better - changing your diet will be worth it.
Jo
Calamity Jane
20-10-2004, 14:08
This forum never fails to amaze me, If I had been in your shoes Sam I would also be feeling down and in despair with regard to what to eat or not, well done Jo ( and everyone else) for putting Sam's mind at ease.:D I am sure I worked with a lady a few years ago who had this. ( am I right in saying it is pronounced "Cee-liac" ??) I know she brought her own food to work and was very careful with her diet.
Good luck Sam, with all this help you will be fine.:D
You can order a gluten free meal on most airlines too - BA definately but i'm sure the others do too.
GF meals are available on the airlines, but it is hit an miss as to whether or not they actually make it onto the right plane.
We missed a connecting flight last weeek , but my GF meal managed to catch it, so I was meal less when we eventaully got a flight.
The time before that I was bumped off. For the money they were offering it was worth forgoing my meal.
I look at it as a bonus if the meal turns up on the right plane.
I usually eat at the airport (every airport seems to have a mcdonalds or burger king!) and take some snacks with me.
As a coeliac you get used to always having something in your handbag. Sam are you a male or female Sam? You may need to get a handbag!
Jo
Tracey K
20-10-2004, 22:51
Hi Sam
People here have already told you alot - feel free to DM me and I can contact you directly to talk about it more if you want some help and advice.
Hubby is a coeliac - you can get a lot of gluten free items on prescription from your doctor - flour, fresh bread, pizza bases, biscuits, pasta etc etc (you would need to purchase a prescription season ticket which will save you a lot of money). There are also ranges of Gluten free food in Sainsburys, Tesco, Asda as well as some great places over the internet (we have cornish pasties, sausage rolls, battenburg cake, cookies etc etc). It is also worth getting the breadmaker because then your bread tastes like real bread.
When we go to the states we always take some bread with us - we have never had any issue with customs over this. If you eat at Disney (eg character breakfasts etc) the chefs are amazing - even if you tell them as you sit down they will make you waffles and all sorts. They are very knowledgeable, you get personal treatment and we always learn something new everytime (even though hubby has had it all his life!)
Out of Disney the food in Orlando is generally great. You may have to watch the sauces or eat the burger without the bread but you should be able to eat really well whilst you are there.
Finally, Virgin are the only flight we have always had gluten free meals as ordered - therefore I would suggest that you take a snack in your handluggage just in case. Be warned though, Virgin will always serve you salmon, you always get strawberries in your dessert and you never get the little chocolate (can't remember what you get in it's place though).
Feel free to contact me - it's really a lot easier than you think once you know what you are looking for.
Thanks for all the info guys, had another biopsy on Monday [not cool] [msnsad], seem to be having lots of tests this weather, have found a range of foods in Tesco only thing is most of it sweet things and the occasional small loaf of bread, baxters soup is great but when i go back for more there's none left very annoying.
Any food lists would be so much appreciated tried Tesco and Iceland neither could supply a list :(
meant to say quite chuffed i can still have a wee chardoney :D:D:D
sorry also female with very large handbag
Visit www.coeliac.co.uk . Register with them and they will send you a food list covering all major branchs plus all supermarket own labels.
It will be your bible for a while!
Jo
jminmaine
21-10-2004, 23:58
Just wanted to add that my mother was diagnosed with celiac sprue just before our 2002 trip to WDW and as we stayed onsite we ate all of our meals in the parks or resorts. We could not believe how well she was treated. At every restaurant the chef came out to either walk her through the buffet pointing out what was safe for her, or went through the menu. At Boma at AKL the chef prepared her a special meal and brought it perosnally to the table. We had the same wonderful treatment in 2003. WDW is a fantastic place for people with food allergies!
She has adjusted very well to the condition and feels much healthier overall. As to -- ahem -- beverages... she has learned to like potato vodka!