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New To This And Don't Know Where To Start...


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19 replies to this topic

#1 nickra

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Posted 19 March 2004 - 01:44 PM

Hi
I was diagnosed 2 days ago and I am so lost and confused.
I've given the contents of my food cupboard to my house mates and now they think I am mad.

I have decided not to tell anyone about my celiac disease. House mates know and my parents, but i don't want to tell anyone else. Not because I am embarassed or anything, I just can't be bothered to explain it to people. I can't even explain it myself yet - I'm just not ready to tell anyone.

Has anyone else kept their celiac disease a secret? Just wondered if it is possible?
Thanks
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#2 joemoe003

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Posted 19 March 2004 - 02:22 PM

Well i dont know if it is possible to keep it a secret but i know how much trouble it in explaining it to everyone what it is and everything else. i dont know if i would be any help but if you want to you can email me or instant message me at pippigirl32@hotmail.com (thats my msn im) cjtsm@aol.com (my email). i have done lots of research on it and would love to help you. So feel free to im me any time.

Joe Moe
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Julianne

#3 nickra

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Posted 19 March 2004 - 02:50 PM

Hi,
Thanks for that - will hopefully have a chat with you on msn sometime - I would really appreciate some advice!
Cheers
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#4 Newbie

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Posted 19 March 2004 - 03:12 PM

Hi Nickra, welcome to the board. You know, I've been gluten free for almost 3
months, and I'm still trying to keep it a secret. Same reason like you... I'm not embarassed, I just don't think a lot of people understand what it's really like
unless they're going through it. The people who know are my immediate family and a couple of friends. That's it. And I'm doing my best to keep it that way, but
it's hard. Especially when they keep offering food and you keep turning it down and won't even have just a small bit. I sometimes just say, no thanks, I don't feel good after I eat bread and stuff like that. And that works most of the time. It's a challenge to keep it a secret, but do what you feel until you're ready to tell others.

Good luck and keep asking questions! :)
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#5 Laura

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Posted 19 March 2004 - 09:07 PM

I told my friends, especially because I often stay over with a lot of them and you really can't stay at someone's house and not tell them. I thought I wouldn't tell, like, strangers about it, though. But I pretty quickly decided that I'd rather not have people like waiters and stuff think that I was on Atkins when I asked for no bread. I think you just have to make a choice. People are going to think something if they're around when you eat, so you just have to decide what it is that you want them to think -- that you're on a diet, that you're just plain weird, that you have celiac disease.
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#6 hapi2bgf

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Posted 19 March 2004 - 10:23 PM

I can't say I wanted to keep it a secret, but then again with my Mom there is no way to keep ANYTHING a secret for very long. I was so sick for so long I was thrilled to have an answer that did not involve chemotherapy or worse. I am an extremely private person and I have found that by explaining the celiac disease to friends and family I actually have less to worry about when I eat with them. They all understand the very basics of a gluten-free meal and understand cross-contamination issues. And workers take my questions and requests much more seriously when I mention I have food allergies (I know it is not technically an allergy, but the word allergy equals lawsuit which makes them respond ).

In my opinion, the first few months are the hardest because the part about figuring out which foods you can actually eat is absolutely mind boggling to put it mildly. But it does get easier. I was biopsy diagnosed in Oct 2003. I still have mistakes but it gets easier. I made lists of staple foods, drinks (alcoholic), and restaurants that I know are gluten-free and I can eat at safely.
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#7 nickra

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Posted 20 March 2004 - 06:31 AM

Thanks everyone for the advice.
I think it was one of my house mates responses that put me off - i was feeling really down having only just been told i had celiac disease that day and he basically told me that doctors are full of rubbish and not to take any notice. - but he has no idea of the suffering i have been going through to make me go to the doc in the first place

when the doc first told me i was so relieved to actually have something diagnosed, ive struggled for so long with no real explanation - to have this immediatly pulled apart by a friend was difficult when all i really wanted was someone to tell me everything would be ok.

im feeling more positive today :rolleyes: but one thing i am not sure about is sticking to the gluten-free diet before i have my biopsy - i have had a positive blood test result but i am waiting for the hospital appointment now, but i dont want to continue damaging myself before i have the test. do most people wait until they have the biospy before starting the diet - my doctor didnt tell me to wait???

thanks again everyone
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#8 Guest_aramgard_*

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Posted 20 March 2004 - 10:09 AM

As usual your doctor does not know much about Celiac. Please do not go on a gluten free diet until after your biopsy, it will skew the results. And ask the doctor who gives your the endoscopy to take a lot of biopsies, because Celiac is often missed because there can be spotty damage to your jejunum. Also, even if (and I do say if) the biopsies are not positive. Most of us Celiacs would suggest you try a gluten free diet for at least several months. Also the first month or so stay dairy free, often the digestive system in Celiacs cannot handle dairy. But when the villi begin to heal, you may again be able to consume dairy. Don't allow anyone to deter you from a proper diagnosis, friend or not. You are entitled to feel better and your health is the most important thing in your life. Believe me, I am the poster child for misdiagnoses. I started showing symptoms, dermatitis herpetiformis, when I was 14. And after many, many years of health problems was finally diagnosed at age 67, three years ago. If the dermatologist had put me on the wheat free diet, forever, that he suggested for three weeks, I would probably have a much healthier immune system. So-o-o, make your health your priority. Learn about Celiac. Read the celiac.com website carefully. Go to the GIG website and read that one. I hope your quest reveals the problem and you can lead a health life from now on. Shirley
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#9 nickra

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Posted 20 March 2004 - 10:27 AM

Thanks for your advice Shirley,
My doctor was quite honest with me and said she didnt know much about it - in fact she said i was the first person she has had come back positive from the blood test. so i will give her a ring on monday and tell her i dont want to affect the biopsy by going gluten free too soon.

not looking forward to cutting out dairy - but it will be so worth it if it makes me feel better!

thanks again to all of you, this forum has been a godsend in my first few days since being dx

nickra
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#10 andyc

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Posted 21 March 2004 - 02:12 PM

I have been gluten-free for over a year - well almost. I don't really tell anyone anything except that I can't eat wheat it is too much to explain. I am sure that I still injest some glutin. Before i went gluten-free I never had any symtoms - now when I have an accident _I get sick -
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#11 mario

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Posted 21 March 2004 - 04:03 PM

andyc;

thats because your body got extra sensitive to gluten and, doesn't want it at all
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I'm me and, from Canada, Montreal

#12 Guest_neRdz_*

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Posted 26 March 2004 - 04:31 PM

hi i was diag.. last summer and i found out that i had celiac disease ... and found out that i had it for a year ,, now i'm going crazy i'm stok in a smal town called lachute whit no one i know that as celiac disease there is nothing in town that can help me the stores that as special food and stuff are far .. crapy .. since the day that the symptomes started my life turn to be crap ... don't know what to do,, tired of having to eat wierd food that taste like crap... need help ,, i'm 22 years old live in a appartment i have look on the internet for stores and it cost so much no credit card ,, don't no what to eat no more .. don't no what to do no more ,, anyway al stop "bitching" i just don't know to who to talk about this kind of stuff ....




sorry for my poor spelling i'm french .... :unsure:
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#13 DLayman

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Posted 27 March 2004 - 10:32 AM

NeDrz,
stick with the basics.. meat fruit and vegetables also cheeses if you can tolerate them. There is alot of variety just among those things if you give it a try! You can do it!!!
Denise
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#14 Guest_neRdz_*

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Posted 27 March 2004 - 11:21 AM

yeah i got no problem whit milk (lactose) :D
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#15 Laura

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Posted 27 March 2004 - 12:42 PM

neRdz,

If you can eat corn, corn tortillas are really helpful. I make cheeseburgers, tuna salad, chicken breast, just all kinds of things, and eat them wrapped in corn tortillas. And obviously there's all kinds of mexican food you can make that way. One of my favorite easy lunches is quesadillas -- I put cheese in a tortilla and microwave it for 45 seconds or so and eat it with lots of salsa so there's even a little vegetables in it.

Plus you can do a lot with potatoes...I'm making hash tonight for dinner.

It's definitely easier to live where there are health-food stores that sell gluten-free foods, but even if you don't, there's a lot you can do with regular food ingredients. It just means you have to cook for yourself more than lots of Americans do. And if you ever visit a town with a health-food store, or even just with a bigger grocery store than you're used to, look around for things to bring back home. I also write lots of requests to my grocery store, and every now and then they actually get something I asked for, like gluten-free toaster waffles.
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