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Would like some feedback


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7 replies to this topic

#1 bfinnegan

 
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Posted 19 January 2004 - 09:11 AM

Hi, I am a brand new member and Im not quite sure what I am doing. Figured I would give this a try because it would be nice to have people to talk to that understand the seriousness of celiac disease and how difficult it can be to follow a gluten free diet. I was diagnosed some mths ago and still have difficulty making sure that I am steering clear of gluten. I read all the labels but none the less I know that here and there some gluten is getting into my system. When I do ingest gluten, I dont really get too many symptoms to let me know but I know my body well enough that I can feel some differences, such as upset stomach or diarrhea, but that doesnt always happen. Maybe this is not a good thing though because I am doing internal damage to my intestines without realizing it. I know now, after reading the most recent issue of Woman's Day Magazine about "The Disease in Disguise" that I need to research and gather more information than I currently know. There are times that I know I am cheating but in reality there is no cheating allowed!! There can be very serious consequences to pay and it's time I realized that I am shortening my life by doing so.
I would be very interested in any feedback from fellow celiacs. [QUOTE]
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#2 gf4life

 
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Posted 24 January 2004 - 01:40 PM

There are times that I know I am cheating but in reality there is no cheating allowed!! There can be very serious consequences to pay and it's time I realized that I am shortening my life by doing so.


bfinnegan, The way my kids doctor put it is that it is either 100% gluten free, or not at all. You really can't cheat on this diet. It is your health that is at stake, not just a few pounds like a weight loss diet.

I just wanted to say, welcome to the board, and feel free to ask questions. We are all here to support each other.

God bless,
Mariann :)
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#3 coveowner

 
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Posted 28 January 2004 - 08:16 PM

Hi,
I just wrote you a long note and then lost it somewhere. I was diagnosed with celiac disease four years ago after 40 years of diarrhea. It is a constant challenge to read obscure labels or to call companies who don't really understand what gluten is. My husband is diabetic and I watch his diet as well as mine, eventhough he doesn't always want what I eat. I have just discover that canola oil is sometimes planted in wheat fields and is often cross contaminated which was a revelation to me!!!

I am a good cook and have a master's degree, so I'm not exactly stupid, but it is hard to track down where I might be getting unintended gluten.

Ah well, life is certainly interesting!!!

Rose ;)
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#4 Naradowski

 
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Posted 29 January 2004 - 04:33 PM

Hi I am new to this also. It takes me forever to grocery shopping as I do read all the labels. I have found however that when I am in doubt I call the company. For the most part they have all been very helpful, however they urge you to read all the labels as their formulas change frequently--this adds to the frustration.I have trouble with the food additives. I have been on this diet a little over a year now and must say I do feel better. I am not up almost every night until 2or 3am "running". I have found that when I do cheat I am reminded of those nights, the pains and bloating and do not want to experience that again. It is a real challenge--especially when we go out to eat or go on vacation. I am still not to sure how to handle our next trip as we will be flying and then staying for a week in AZ. If anyone has suggestions I would appreciate them. I cannot bring my own food for a week on a plane.
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#5 seeking_wholeness

 
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Posted 29 January 2004 - 08:00 PM

Naradowski, someone (I think it was Virginia?) suggested in another thread that you could order gluten-free foods online and have them shipped to your destination. It's something to consider, if you will be staying at the same location for the entire week!
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Sarah
gluten-free since November 1, 2003

#6 alexa11219

 
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Posted 30 January 2004 - 06:50 PM

Naradowski, while you still have some time before your trip, I'd suggest find out online if there are gluten-free restaurants and organic food stores (they often have buffet bars) in destination area. If you find any, you won't have to take much food with you.

Try this:
www.glutenfreerestaurants.org
info@glutenfreerestaurants.org

Good luck.

Alexa
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#7 noglutenallgood

 
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Posted 11 February 2004 - 07:44 PM

PF Changs, Tony Roma's and Outback Steakhouse all have gluten-free menu and menu items available. I don't know if there are any in Arizona. Best of luck!

-Carolyn
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#8 EmilyP2004

 
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Posted 14 February 2004 - 06:53 AM

[quote name='bfinnegan' date='Jan 19 2004, 09:11 AM']Hi, I am a brand new member and Im not quite sure what I am doing. Figured I would give this a try because it would be nice to have people to talk to that understand the seriousness of celiac disease and how difficult it can be to follow a gluten free diet. I was diagnosed some mths ago and still have difficulty making sure that I am steering clear of gluten. I read all the labels but none the less I know that here and there some gluten is getting into my system. When I do ingest gluten, I dont really get too many symptoms to let me know but I know my body well enough that I can feel some differences, such as upset stomach or diarrhea, but that doesnt always happen. Maybe this is not a good thing though because I am doing internal damage to my intestines without realizing it. I know now, after reading the most recent issue of Woman's Day Magazine about "The Disease in Disguise" that I need to research and gather more information than I currently know. There are times that I know I am cheating but in reality there is no cheating allowed!! There can be very serious consequences to pay and it's time I realized that I am shortening my life by doing so.
I would be very interested in any feedback from fellow celiacs. [QUOTE][/QUOTE]


*******************************************************************


If you are newly diagnosed you might want to stick to plain food cooked from scratch for a while.

Plain cooked meat, fish, eggs cannot hurt you as long as you use pure ingredients such as butter and vegetable oil.

Eggs are useful, omelettes, scrambled, boiled or fried can all be a good quick meal.

You can have any plain vegetables- salad is good but remember to use your own plain wine vinegar &, say, olive oil, dressing.

Also plain nuts (not dry roasted, some contain gluten) and seeds are gluten-free & these make a good gluten-free snack.

As long as you know everything is uncontaminated by gluten, you should be well on the way to recovery.

At first your puddings can be fruit, fresh or dried, or fruit salad you make yourself with fresh fruit and pure fruit juice . Have this with plain cream or plain bio yogurt and/or home made meringues.

I suggest you have your own gluten free area in the kitchen if you share it, own gluten-free toaster, bread board, bread knife, wooden spoon, preparation surface etc.

Check that stock cubes etc are gluten-free or use plain herbs and your own stock.

Ask on this board for a safe gluten-free bread and also a suitable gluten-free mix/flour to use in your cooking/baking.

Plain boiled rice or jacket potatoes are a good standby.

There are different rices, eg Carmargue red, black rice, Indian Basmati which make a nice change. Potatoes can be mashed, boiled, roasted & sweet potatoes are, of course, gluten-free.

Hope you like bananas as these are a great help to coeliacs- you can carry a few & eat them if you are hungry & do not know if anything is safe for you.
You can fry them in butter & olive oil & have instead of potatoes or eat as pud with maple syrup or runny honey or preserved ginger & cream or plain yogurt.

Do you have a local celiac disease group which you can join?

It is helpful to contact other coeliacs (celiacs) who really have a lot of advice and information for you.

If you do not have a local group to talk to post your queries on here & I am sure you can get help.

It is very shocking at first to have a diagnosis of celiac disease or DH but we know that there is a safe and effective treatment (gluten free diet) which will help us to return to good health & as long as we remain gluten free we are doing the best thing we can do.

You may make mistakes (I think we probably all do unless diagnosed in childhood when the GFD is all we know and a routine thing) but as long as you really try your best to remain gluten-free you should recover well.

If you do make a mistake and accidentally eat gluten you will probably be ill (I have pain & diarrhoea & feel very ill for about 24 hours if I have gluten accident) but if you do your best to stick to gluten-free diet you will recover & eventually your gut will heal.

Some medical advisers say you will recover after 6 months on gluten-free diet but for me & others it took a lot longer- nearly 2 years in my case - so do not get downhearted if you do not feel well very quickly.

Having said that, my mouth ulcers healed within a week so you may find some symptoms ease fairly early on!

There are handy hints for newbies here:
http://coeliac.info/...topic.php?t=162

I can remember how shocked and unable to cope I felt when I was first diagnosed but I am sure you will be able to cope & eventually you can help others who are starting to have a gluten free life.


If you put 'celiac', 'coeliac' and/or 'gluten-free', gluten free' in a search engine you should find a lot of informatin re celiac disease & GFD.
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