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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 had quite a few of the medical problems that you have before I figured out that gluten was the problem. I can’t do basic math or writing when I eat gluten also I get depressed, irritable, low energy, etc. The best route to go is to do an elimination diet and monitor how certain foods affect you. I eliminated MSG (Monosodium Glutamate), Nitrite, and oat based on the reactions that I get once I consume them. You must be disciplined on a gluten free diet, there is not such a thing as –It is just one cookie! If you can manage to go 100% gluten-free for three weeks and you see those problems going away, you will have a good idea if that is the cause of your problems. The blood test I did after being gluten-free for two years came back negative so the doctor just make me feel that I was crazy and making things up. I have a stool test done which came back with elevated igA also a gene test indicating I have two genes that code for gluten sensitivity. My lactose intolerance went away too, eating a lot of cheese now. Rash in arms? gone, Brown spots in teeth? Gone, Intestinal noises? Gone, Lack of bladder control? Gone, Constipation? Gone, and a lot others.   
    • Oh you're most welcome!  Another thing --- no steroids, oral or injected for 2 months prior to a dh biopsy. Lay off any topical steroid creams for 2 weeks prior. Really, stand your ground with them. It would also be great if you can get a friend or family member to go with you in case they take the biopsy from somewhere that you can't see such as the back of your neck. Your friend/family member can watch to make sure they don't take it directly ON a lesion. Do you have a primary care doc? You can also go to that doc & ask for a full celiac panel PLUS an eTG or TG3. 60% of people with dh test negative on the celiac blood panel but maybe you're one of the 40% who will test positive. It's worth a shot.
    • Thank you so much for responding, it's so hard to go on this journey of questions and Drs. I really appreciate the time you took to respond. God bless you 💖
    • Do you have copies of your blood test results? Can you post them? Don't forget to list the reference ranges. Is the TTG the only celiac test they did?  Do you have a copy of your pathology report? Get it if you don't. How many biopsies did they take & from what areas? Were you eating gluten right up until the biopsy?
    • I got them on the back side of my knees too. All the literature points out knees & elbows but doesn't mention the "behind the knee" portion of your leg. I eventually got them ON the knees itself but that was one of the last places to present. I also got them on the inside bend of my arm instead of the elbow and just like the knees, it eventually presented on my elbows. Not to be forgotten; the literature also states it can present anywhere on the body. If you found those links I've posted about how a dh biopsy is done correctly then print them out & take them with you to SHOW them. Any derm should be able to follow the directions or they should turn in their license.  As to them saying herpes, well duhhhhhhhhhhhhhhhhhhhh, dh does have a herpes like presentation. That's why they call it dermatitis herpetiformis! Remember, they work for YOU, not the other way around. Insist. Make sure you're still eating gluten. Let us know how it goes. The best of luck to you!
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