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spinal77

Recently Diagnosed - How To Cope?

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I was just recently diagnosed with Celiac Disease about a month ago after a blood test came back positive and they did an endoscopy and that too came back positive.

I'm struggling with it because eating food with gluten in it really hasn't bothered me like some of the stories I read on here about people. I don't feel bad, I don't have pain. The biggest problem I've ever had was gas. I know I have to eat this way for the rest of my life, but its hard to cope with such a drastic change when you can't see any real improvement in your life and health. It just goes on the same as before. Its like, I know I have to eat this way, but I have a hard time justifying it to myself.

Truth be told I'm kind of overwhelmed by the huge changes I have to make (re-equipping my kitchen, being paranoid about food in the grocery store, never being able to eat at my friend's or families' houses again, not really being able to eat in restaurants anymore) when there doesn't seem to be a payoff.

Has anyone else felt this way?

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First, breathe. It is overwhelming at first I know. You will be able to eat outside your house again I promise. Have you considered yourself lucky that more severe symptoms havent shown in you? You should...be happy your preventing them. Time will help you adjust to your new life style. There are so many gluten-free products out there and any recipe is adaptable.

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The first few months are the hardest. I guess, feel lucky that you got diagnosed early, and that you didn't have to get really sick before people started to guess at what was going on (some of the guessing has ended in multiple diagnosises for many of us.. unneeded medications, tests, and lost years of health).

You'll be able to eat out of your home again, and at your friends'/families' houses as well. It took awhile for me to adjust to my new diet, and it took my family and friends even longer! But, it will hopefully happen. And, once it does, you can work with them to prepare or plan foods that you can eat with them.

Start finding foods that you enjoy that you actually can eat. In fact, you might discover new foods that you never even considered eating before.

Good luck! We're here to support you!

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Its interesting - because I was just saying to my mother the other day - in a way my severe reactions are a blessing. I don't think I would do the diet if I didn't get really ill with it. I'm one of those - 'it'll all be ok' people.

I guess maybe read some of the stats on gluten consumption - depending on which study you read celiacs who don't follow the diet are at a 9 - 39 times increase of some cancers...that is pretty scary!

Also - once you get used to the diet - it is fine. Buy a bread maker and make your own gluten-free bread - some of them are so good you would never even know they are gluten-free. It takes a bit more work - but most of the time I forget that I'm gluten-free..

Good luck!


HLA DQ8, gluten-free since January 2011

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It's always harder for those who do not have the GI symptoms to adjust to the fact that they cannot eat gluten because they don't get any immediate rewards. You just have to reinforce in your mind that those antibodies that they found in your blood ARE causing damage to your GI tract (and to other unknown parts of your body) and you will actually have to work a little harder than those who get kicked by gluten cross-contamination to eliminate all trace sources of gluten :(

Once you have learned all the places where gluten hides and have adjusted your lifestyle and diet to its elimination you will feel a lot more confident shopping, learning how to ask the right questions of the right people in restaurants, etc. It is usually easier at first to eat naturally gluten free foods, meat, fish, veggies, fruits, rice, eggs, until you get the hang of it. Find a few staple gluten free subs, such as Tinkyada pasta, Udi's bread, Larabars (I always keep at least one in my purse for emergency muchies) so you don't feel deprived.

You can teach your friends and family how to cook for you safely but until then you can take your own food with you to social occasions (we all do it - or offer to cook when you get there or invite people to your place and ask them to bring things like fruit, wine, or send them instructions on how to prepare a veggie dish for example). It always sounds worse than it is at first - it is just a different way of living and quite easily done. You CAN do this :)

You will probably want to have another celiac blood test in six months to make sure you are doing it right. Don't forget to check your toiletries, cosmetics and medications for gluten, and don't kiss a gluten eater if he has not brushed his/her teeth.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Oh - another thing, if you keep eating gluten you could trigger another autoimmune disease, and the rest of them cannot be controlled by diet alone. I have two confirmed and another one that I'm undergoing tests for. They are just awful and the medication is poison -ugh!


HLA DQ8, gluten-free since January 2011

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Try contacting love2travel. She essentially was asymptomatic when she was diagnosed. She can probably give you some great advice.


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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