Just diagnosed..please help!!

[Veronica]

Hi there.
My name is Veronica and I am married with 2 teenage sons.
I was recently diagnosed with Celiac Disease last week. My Dr put me on medication and of course I have to completley change my diet.
I have never heard of this disease, I'm getting all of my information off the internet.
I'm very grateful that there is a discussion forum for some help and support.

Since I don't know anyone who has this, I'm hoping someone can answer some questions I have.

I have the 'usual' symptoms...lots of pain and cramping ,diareah(sp),loss of appetite,I have lost 70 pounds since January...and I feel like garbage!!!

The biggest problem I'm having right now is my family understanding this. There are alot of times that I can't eat because I don't feel well...sometimes eating makes me feel worse. But noone understands that and they are always after me to eat something...non gluten of course.
I feel miserable cranky and get alot of headaches. I know this affects them as well but how can I explain this?
Any help would be greatly appreciated. Thanks.

[northman235]

Hi Veronica
This is all new to me also, I was diagnosed just 2 weeks ago. You've definitely come to the right place. I felt lost when I found out I had Celiac and thank goodness I found all the great people here! Please feel free to ask anything you like, I've been told there are no 'stupid' questions when trying to find answers here. Hopefully you will start to feel better soon, but I've been told it can take months for the damage to heal and the symptoms to go away. Best of luck
Steve
_________________
GF since 7-18-05

[Nikster57]

Hi Veronica and welcome to the group. I just want to tell you that you are not alone. We have all been there and our first post is usually the one of "HELP". It's scary and frustrating and it hurts and you feel lost. You will find lots of help here. Read other posts. I probably spent an entire month just reading and asking questions and I am still asking questions. I have been GF for about 2 months so I am still new at this too. I will tell you though, when it comes to the family, get them reading. Print out what you find and let the family read it so they can become educated. Kids are the best. A few times I have ordered a salad and one of my kids will blurt out "NO CROUTONS" and it really helps. They will get supportive when they are informed of what it does to you and how it makes you feel and why you feel so crummy and how to make you better. I ate lots of mashed potatoes when I first started and was hungry for a couple of weeks until I figured out, no doubt with the help from this group, what I could eat and what to stay away from. Things that I never thought had gluten actually did. Don't worry, we will help you through it and I hope in the next couple of weeks to hear you are feeling better.

Nikki

[Guest]

Hey, there. Guess there are a lot of new celiacs out there. Me too. Just discovered it last Sunday! I was really feeling much more horrible than usual and needed relief. Checked AGAIN into celiac disease and discovered that I have 13-15 of the 25 symptoms listed on the CSA website. My doctor has agreed that I should follow the diet and contact him if I have other problems. I am already finding a difference in how I feel. Just scrambling to find out what to eat! Like all of you, I would appreciate any input that you can give me. I'm starting from scratch. Feel free to PM me anytime. Thanks for listening and I'm glad to be here. Blessings to all...

[aklap]

Hi Guest,

Welcome to the world GF eating!

Did your doc run any tests on you?

The best thing you can do, is to spend some time and read thru all posts in the different forums. Don't worry if it gets your head spinning...that'll stop after awhile...just read as much as you can take in in one sitting.

If you have questions, don't be afraid to ask!

Good luck in your GF Journey!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[GFSarahSmiles]

Hi there, Veronica and "guest" Welcome aboard.

The family education thing may take some time, but it's well worth the effort. Not everyone has such understanding families (some just don't get it - ever), and although I certainly hope yours will be great about it, don't be too discouraged if they just don't understand. It's a lot to take in for us, but it's even more for someone to take in who doesn't even feel it or experience it first-hand.

Don't worry about the feeling of being overwhelmed in the beginning. It may feel like you'll never learn it all, but trust me - you will. It's a lot to take in at first, but you'll catch on quicker than you think. You will probably find that you will remember more than you think, too, right when you need to remember it.

Poke around here and read as much as you can. Somewhere you'll find a list of hidden glutens and the ingredients that contain (or at least may contain) gluten and therefore must be avoided. Memorize these.

Last but not least, ASK QUESTIONS IF YOU HAVE THEM! Have fun learning and feeling better!
_________________
Sarah
Birthday: December 6, 1982
Gluten-Free Birthday: March 2, 2004
Remission & Dx Confirmed: March 30, 2004

[northman235]

Here's the list of Safe and Forbidden foods Sarah spoke about

http://www.celiac.com/cgi-bin/webc.cgi/st_main.html?p_catid=12&sid=91hH9H0@-J--4O5-17104200761.6d

Best of luck!

Steve
_________________
GF since 7-18-05

[aklap]

[northman235]

Al is correct on two counts - the Delphi lists are great, and there is a far better group of people here! Don't get me wrong, the people there are great but I feel more comfortable here When you click on Al's Delphi link, just scroll to the bottom of the page and click 'no thanks!'

Steve
_________________
GF since 7-18-05

[maria1223]

Hi veronica, welcome
I have 1 grown son who is 20,3 others that are 18,16,15 & my hubby.. when i was DX with CD in dec 04 it took me 3 weeks to get my stuff together. now everyone in my house eats most of my Gluten free foods. don't get me wrong they still eat thier foods too but they like mine more. I cook pepper steak still but use gluten free things. I still make thier favorite foods but gluten free there is no difference to them with the taste. I just got married & my wedding cake was gluten free & no one knew the diffrence . they could not believe it when I told them that it was. it will take time for your family to get use to your C/D but they will come around.. as for you losing weight we all did at one time but when you start getting healthier you will gain some weight back. I gained 30 lbs back. which is great for me I wasn't eating for a while cause I was so sick. And kept losing weight I' 5'11 I should weigh at least 190. I went down to 130 or less my Dr kept weighing me backwards so I wouldn't see. now i weigh about 165 the last time I was at the Dr's. just keep trying it will come.

good luck

[confang]

Headaches and mood swing are part of being nutrient deficient. Tired and depressed, iron deficient. Moms are never able to focus on themselves but this time you need to.
My daughter was four when she was diagnosed. My mother was vigilant with me, my mother in law gave her god knows what at every turn. I finally took my m-i-l to the stanford celiac conference so that someone there could make her understand that graham cookies are in fact WHEAT cookies. She slept through most of it... That is on her and it made me realize my daughter wasn't safe with her, her fault. You have to make some choices about how YOU feel before you can worry about how others feel. Educate yourself, then (with confidence) you can educate yourfamily. Mean while try cutting out dairy for a week or so, a lot of celiacs don't realize they are also lactose intolerant. Really a HUGE percentage are. It took me an additional 2 1/2 years to figure out my daughter was and only because the receptionist was listening to me better than the doc was. If you don't feel well something may still be wrong. I learned that sometimes prednisone is used to help people respond to the GF diet. Short term of course.