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Help!- Newly Diagnosed

Babygirl6915

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Babygirl6915 Explorer
Babygirl6915
Posted

Hello All!

Just wanted to say hi & get a little bit of feed back if I may. I was diagnosed this past Friday (yea! <_< ) as having Celiac's Disease & also a severe allergy to Dust Mites (but that's another topic entirely). For YEARS i have gone to allergist after allergist who told me nothing was wrong with me & long story short, I made my way to an Internalist for a Thyroid panel & he sends my blood off for a complete work up & it comes back no thyroid problem but Celiac's Disease. I have been caught a little off guard by all of this. Does anyone have any helpful insight, tidbits, experiences, or sources for helpful info that you would like to share? I am kinda freaking out so anything @ this point would be super helpful! Thank you!

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Lisa Mentor
Lisa
Posted
Hello All!

Just wanted to say hi & get a little bit of feed back if I may. I was diagnosed this past Friday (yea! <_< ) as having Celiac's Disease & also a severe allergy to Dust Mites (but that's another topic entirely). For YEARS i have gone to allergist after allergist who told me nothing was wrong with me & long story short, I made my way to an Internalist for a Thyroid panel & he sends my blood off for a complete work up & it comes back no thyroid problem but Celiac's Disease. I have been caught a little off guard by all of this. Does anyone have any helpful insight, tidbits, experiences, or sources for helpful info that you would like to share? I am kinda freaking out so anything @ this point would be super helpful! Thank you!

Welcome to the Club! You have just found yourself the best source for celiac information available.

First, start simple - meats, seafood, potatoes, rice, fresh veggies and fruit, nuts with simple seasonings. Dairy is often hard to digest until the villi heal.

You also need to check your toiletries to include lotions, makeup, lipstick, shampoos...in other words anything can can get into your mouth.

As we all say, the learning curve is steep but it is very doable. The key to success is to learn to read labels, call companies with products in question and diligence.

We have some great folks here who a dedicated to helping those that come behind them. So, please feel comfortable to join in and read as much as you can from these post and ask away.

Babygirl6915 Explorer
Babygirl6915
Posted
  • Author

Thank you very much Lisa! I am feeling a little better than I was yesterday already. There is some very helpful information on here that makes this all seem not so bad...

pedro Explorer
pedro
Posted

Hi Welcome.

This is best site for learning searching, and most important to ask questions.

Please don't be afraid of asking, you will receive lots of advice and most important lots of support with the new changes.

Welcome.

happygirl Collaborator
happygirl
Posted

Jessica:

Welcome to the board! This is the best resource out there.

Here are some pieces of advice that I hope will be helpful.

Check out the book in my signature, written by a leading Celiac expert. You can get it at the bookstore or order online. Its GREAT.

Try Tinkyada rice noodles. I've tried a ton of brands, and these are the best! www.tinkyada.com. You can find them in many stores, health food stores, online, etc.

Stay on the board, read, read, read, and ask questions.

I have two pieces of advice that I think are the core of living sucessfully with Celiac Disease (Celiac, not Celiac's...I think we ALL called it that to start with....I even asked how to say it!!!)

1. Learn to successfully read labels. Its the only way to be independent and make informed decisions. Don't rely solely on lists or what someone says...they can be outdated, or ingredients have changed, etc. The combination of your label reading and others opinions, taken together, will be invaluable.

2. Don't eat ANYTHING unless you know a. the ingredients and if they are safe and b. how it was prepared. Having safe ingredients is only part of the equation. Knowing how something was prepared is equally as important. (It is not safe if the ingredients are gluten-free, but you use a knife that just cut a regular wheat sandwich, and then use it on yours).

Let us know what we can do to help......happy to have you on board!

lcbannon Apprentice
lcbannon
Posted

It can be a little overwhelming at times but stay right in there and you will find you feel better, and the better you feel the better you can cope with it. Tons of info and support are here and all over the web you can find receipes to help. You do not mention your age, but I know the younger you are sometimes the longer it takes to jump on board with this. I have a 23 yr old DD who feels much better when she eats gluten-free, but she is just not ready to make the commitment it takes-- YET..

Good luck...

Babygirl6915 Explorer
Babygirl6915
Posted
  • Author

Thanks very much happygirl for the book suggestion, i will definitely read that! And thanks for the Celiac thing... When the doctor told me what i had i had to ask him how to spell it!!! B)

lcbannon- I am 24 years old, work full-time & am getting my Bachelor's Degree @ night. I am very intersted in leading a gluten-free lifestyle but it will be VERY hard at first considering my schedule! Right now i am eating alot of fruit b/c it is easily available & leftover dinner for lunch. Hopefully once i get a better feel for all of this keeping food available wont be so hard.

Again, I cant thank you all enough for the information... Every little bit helps! :)

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Calikat4 Rookie
Calikat4
Posted

I can relate 100% -- I too had to ask my dr to spell celiac AND I was diagnosed in grad school (bye-bye fast food and pizza delivery)! Four years later, though, and it's so much more manageable. Everybody here is right -- this is THE spot for celiac and gluten info. It's been so helpful for me. Here are some tips I picked up along the way...

Shop at health food stores -- Whole Foods, for example has a gluten free bakery section (biscuits, bagels, some awesome treats!) If you don't have a lot of those stores, you can order things online through the glutenfreemall.com or glutino.com

Contact companies -- some places (like Nestle) were so helpful that they sent me gluten-free lists and multiple coupons. There have been times I have stood in a grocery store w/ my cell phone just to make sure I can eat a product.

Cook at home -- meats, fish, fruits, veggies. There are also tons of gluten-free cookbooks and recipes out there.

Eating on the go can be tricky, but remember that some fast food places will do a "protein style" (no bun) burger (like burger king). I also get some meats and cheeses at the deli and just roll them up w/ some mayo. There are also gluten-free crackers (rice crackers) and fruit and nut bars (Lara bars are really good) that you can carry around w/ you.

In the beginning, I had a rule of thumb when it came to deciphering hidden glutens -- if I couldn't pronounce the ingredient, I didn't buy it. But once you get a good base of the things you like to eat, it gets easier.

Don't forget to check your medications -- some contain gluten. There are lists on the internet and sometimes I just contact the manufactuers to make sure.

And it may sound corny, but remember that it's a slow process. It's okay and normal to feel frustrated and depressed, especially in the beginning. It took me a good 6 months to get over the whole "poor me" thing. But remember that it gets a whole LOT better when you stick with it.

Babygirl6915 Explorer
Babygirl6915
Posted
  • Author
And it may sound corny, but remember that it's a slow process. It's okay and normal to feel frustrated and depressed, especially in the beginning. It took me a good 6 months to get over the whole "poor me" thing. But remember that it gets a whole LOT better when you stick with it.

It funny that you mention that... I didnt really realize it until yesterday but this whole thing has kinda of depressed me. Its more anger though.... Anger that i have gone through years & years of the "different doctor, different opinion" game & in the end it was something this simple. Not simple to fix but all it was is an allergy! And sadness that if i want to feel better that i am going to have to make some HUGE life changes. Hopefully as i start to feel better these feelings will pass. Thanks so much for the helpful reply Calikat4! ;)

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