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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.

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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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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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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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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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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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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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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.

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

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/suppboard/viewtopic.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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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