I Am 26 And Just Diagnosed With Celiac

[Guest heidi26]

Please help me. I am turning 26 on july 18 and after 10+ years of complaining, I was finally diagnosed with this horrible disease. I am glad I finally know what is wrong with me, however I am totally new to this. I see my dietition on thursday, so in the mean time I could use all the help. I want to feel better. I am going to have a hard time following my diet. Can someone help with the basics, as well as the skin, hair care I can use? Thanks so much.

[BRUMI1968]

Welcome! I'm glad you got dianosed in your 20's -- for me it was 34 years of complaining - and 37 years old by the time of diagnosis.

You want to Private Message "nini" to get a newbie pack. It'll be really helpful.

If you live alone, you need to just get all gluten products out of your kitchen. You also, though, need to wash out all your drawers, your refers, wash all your kitchen towels/linens, vacuum like crazy, etc. YOu may have gluten hanging out in your kitchen that will cross-contaminate you. The problem with this disease is we're talking gluten on a molecular level. If you don't live alone, you should devise a system, or get your living-space partner(s) to adopt gluten-free too. Check out some of the posts about kitchen cross contamination - there is one going on right now.

Hopefully, you love vegetables and fruit. If so, you can eat all of them. Yay! Many folks with Celiac find they can't eat dairy for a while at least, since the lactase you need to digest lactose is released on your villi, the friendly fingers in your small intestine that you have been squishing and destroying with all your innocent gluten-eating. Many folks find they can add it back; some folks never can since they've developed allergies to it.

I would be especially careful to supplement for Vitamin B (a complex works well since it's balanced) and the bone-building materials, since often Celiacs have osteopenia or osteoperosis - thinning of the bones. That stuff is minerals and vitamin D. Yahoo, it's summer...go outside and get some Vitamin D.

There are lots of gluten-free substitutes out there at health food stores and the like. I ate some at first, but have given up on them as most are empty calories. If you continue eating other grains, there are some great ones like Quinoa and Amaranth as far as nutrition goes.

Anyway, I'm rambling now. Hope I've helped. Welcome!

[DingoGirl]

Heidi, welcome to the board. First, please know that it is wildly bewildering at first, I even cried for three days, had the breakdown in Whole Foods (lots of people do), but that it gets SO much easier. Keep that in mind for the frustrating times. Do as much reading as you can on this board, and there are some good books - "Dangerous Grains" is one.

You'll have to really start reading labels and figuring out what is okay and NOT okay. We are like detectives, really. Somewhere on this thread is information for newbies....if you go to search and type in "newbies" you can probably find that thread. someone wonderful - might have been Armetta? - posted that recently.

I have not worried too much about shampoo and conditioner, but things like lotions, lipsticks, cosmetics, toothpaste, etc. I make sure are safe. When I find new info, I copy and paste to a document - products, ingredients, new foods, recipes, and it grows all the time.

To start, the best advice I got was to eat foods that are naturally gluten-free: fruits and veggies, meats, chicken, fish, rice adn potatoes, cheese (many newly diagnosed Celiacs need to avoid dairy for a while - some forever, time will tell). You will find more and more things you can add....I was so excited I got to eat the ribs at my friend's the other night as they used Sweet BAby Ray's bbq sauce!

Do you have a Trader Joe's nearby? That saved my life.

Please search the boards, keep on reading and asking questions, and you'll be okay.

Blessings -

[psawyer]

Nini is having computer trouble and is not online at the moment. The info kit can be downloaded from her web site Open Original Shared Link Scroll down to the bottom for the link.

[jenvan]

Heidi-

Hello and welcome! Even in the midst of being overwhelmed, this is a good time to be grateful for finally getting a diagnosis! Take it a day at a time, you will get the hang of it soon. One of the basics is knowing what you can and can't eat and checking ingredients. Go here and print of these lists--they will be a great help in checking labels etc: https://www.celiac.com/st_main.html?p_catid=12 If you have a palm pilot or computer, you can also purchase this software that has a large listing of mainstream gluten-free products...and you get updates ever few months with more. It can really be helpful when you are starting out: Open Original Shared Link

[Jean-Luc]

Heidi,

I really would not say this is a "horrible diease." Maybe I am cynical but, I can think of somethings that are much worse.

You could think of this a as gift in a strange sort of way. This diease is one that is completely controlled by diet and early intervention can prevent the development of new and much nastier things. The way I look at this is that I can and will wake up every morning with celiac disease. My life is in my own control, not a Dr. or a Radiologist or some experimental drug. Yes, there are associated risks and side effect of being glutened but, YOU now control your own diet and well being.

This board is a wonderful and useful place to come to discuss your fears, concerns and joy in finding new things to replace your old comfort foods (for me I like beer, well now cider is my new drink). Please if you have questions, post them or e-mail one the group, nini and rachel-24 have a lot of good insight.

I wish you the best.

Picard

[floridanative]

Welcome Heidi - just six months after my dx I feel better than ever and I'm still learning about this gluten free way of life. It's more than a diet really. But it does get easier with time. In my case I wanted to know everything I needed to like yesterday. That was not possible so I had to slow down and take my time, doing the research, joining a support group and coming here for help. This board is invaluable but I personally recommend joining a support group if there is one in your area. It's so nice to meet others like yourself and taste all kinds of gluten free food - for free. This way you don't buy a zillion things that taste like flavored styrofoam. Download nini's newbie kit as suggested and that will help you immensely.

Since you're so young, you can avoid all kinds of other health issues down the road if you learn and stick to the diet. And trust me - there is so much great gluten free food out there you will not believe it. Good luck and remember it takes time to do this gluten free thing.

[wozzy]

Everyone else has given you great tips.

One other thing. At first, it is very intimidating, and you'll probably feel sad about all the food you can't eat anymore. As you adapt and realize that there are foods you can eat, that seems to go away. Now, I'm, dare I say it, proud of my Celiac Disease because it forces me to eat healthier than everyone else and because I actually know I have it unlike the rest of the undiagnosed population.

Think of yourself as one of the chosen ones.

[uclangel422]

Welcome to the board Heidi.

I was diagnosed at 24, and it has been a full year. Everyone has already said what I would have said. Just know that you have found the right place. I dont post very often but I read every day and I dont know what i would do without the information and support that I have found here.

Let me know if you need anything.

Denise

[jerseyangel]

Hi Heidi--wanted to welcome you to the board!

The diet is not so hard--it's just a matter of getting used to it. Everyone has already given you good advice--there is a ton of useful information to be found here.

Celiac is not so horrible--what is worse is being sick for 10+ years, as you were, and not knowing why or what to do about it. It may take a little time, but you will feel better on the gluten-free diet

[DingoGirl]

Nini is having computer trouble and is not online at the moment. The info kit can be downloaded from her web site Open Original Shared Link Scroll down to the bottom for the link.

thanks Psawyer, that's just what I meant! And Jen - - more good stuff. We should just automatically send these links to everyone who's new.

[jenvan]

thanks Psawyer, that's just what I meant! And Jen - - more good stuff. We should just automatically send these links to everyone who's new.

Yeah, those were a huge help to me in the beginning... How else would you know!??

[Daxin]

I was dx'd when I was 30, and I can tell you it's not the end of the world. In the beginning it can feel like a horrible disease, but with time it gets better.

There are MANY things out there worse than being a celiac, and since more of us are out there than there used to be, more and more companies are making products that are safe for us to eat.

I hope you find some help and answers in these forums. The people here are full of useful information. All you have to do is ask.

[NicoleAJ]

Dear Heidi,

I don't think I can add to all of the great advice everyone has given here, but I will emphasize that it will get better. Also, unless you are going to a nutritionist that specializes in celiac, then he or she might not know all of the ins and outs of the diet. I had this experience, so I got a bit of misinformation before I knew any better. Use the nutritionist's guidelines as a starting point, but be sure to do your own research as well. It's not a horrible disease after some time, but it is one that requires that you be proactive.

By the way, I'm also 26. I was diagnosed exactly two years ago, and I feel sooooo much better than I did two years ago. If you need any advice on how to live gluten free in your mid-twenties, feel free to PM me.

Nicole

[lorka150]

I'm also a mid-twenty something, and trust me (and all of us!) it's not a horrible disease because finally you'll start feeling good! Welcome to the board.