What do I say?

[jcanolson]

The gastro's office just called. Alexa's biopsies came back positive for Celiac. How do I do this? How do I (we) tell her that her world, as far as food is concerned, must drastically change? How do I say what needs to be said without bursting into tears when I'm having a hard time even thinking about it without bursting into tears? With Nat it was easier. She was only 5. Alexa's 13. I'm just at a loss....

Any suggestions, books for teens on the subject?

[momtojess]

I am so sorry. You are living one of my worst nightmares.

I wish I had some advice for you, but I just want to give you hugs. I would let her see you cry, let her know it isnt fair.

[aklap]

Hi Carol,

UGH! It's not easy for anyone to deal with this, but for kids/teen/young adults it has to be the hardest. My heart goes out to you and Alexa.

I will preface my advice with this: I am a [married] guy, but we don't have kids [due to medical issues]. So, take my words with a grain of sand.

I think a parent can have a huge impact in how the child deals with this. I see it a lot. If a parent is matter of fact and straight forward with this [ie doesn't over react and over dramatize] the whole GF lifestyle will go smoother [it won't be easy no matter what]. If a parent goes overboard running around saying "the sky is falling, the sky is falling"...how will the child will respond to that?

Please understand that I'm not saying you personally over react/dramatize.

Which would you rather have...

"Alexa, the doctor's office called, your whole world is going to come crashing down, you can't do x, y or z any more. It's going to be horrible."

or

"Alexa, the doctor's office called, the tests were positive - you have Celiac Disease like Nat. I'm sorry I have to tell you this, I don't want to tell you this, it hurts me to tell you - but we need to do what's right to make sure you're healthy. I won't lie to you, it's not always going to easy. But you know something - we're going to work thru this together - as a family. It's OK to be angry about this, it's OK to cry over this, just know that we are here for you and will help you in any way we can. One good thing - we're already a head of the game on this - Nat has already blazed a trail."

Carol, have you and DH gotten tested? If not, you need to be tested - symptoms or not. This is disease is coming from you and/or your hubby. It's in your best interests to be tested. Generally it's suggested that testing occur every two years since a single negative test does not clear you for life -it can crop up at any time.

You might want to check out some of these books: http://alamoceliac.org/acbookskids.html

I wish you well! I am sorry your family has to deal with this.

[jcanolson]

Thanks for the advice Al. I'm tend to take the straight-forward approach and keep it positive with the kids. I keep the falling apart and blubbering to the forum:D!! It keeps me sane.

We let her know earlier (pretty much the way you suggested), and she took it better than I expected. I'm not sure what tonight will bring. For some reason night and bed-time is when everyone in our house seems to start worrying. I'm sure there will be frustrations and tears ahead, but at least we already know how to eat gf. Now we just have to figure out the teen angle - youth group, overnights, camps, etc., etc.:cool:

BTW - I have had celiac bloodwork and that came back negative. My husband has to have blood drawn in about a month for something else, and they are adding the celiac panel to that.

Thanks for the book suggestions. I'll have to look those over later.

[aklap]

You're welcome.

Do you think she had some inkling that she had it? Glad to hear the initial news was taken well.

Things like this always looks worse in the dark of night. When I was "sick", nights were THE worst! It wasn't helping that the doctors were short on answers for me and we both felt I was dying [but never told one another].

You parents have a tough row to hoe...I don't know how y'all do it! A family at our church is dealing with nightmare. Their 4 year old child has neuroblastoma (http://en.wikipedia.org/wiki/Neuroblastoma), they're doing chemo and will be entering an experimental phase of stem cell transplant. We saw the little girl at church yesterday, it was good to see her up and running around.

[Judy&Alli]

I am so sorry! I was so hoping it would not be. Give Alexa a hug for me. I really think Celiac sucks worse than diabetes! That is saying alot cuz I really hate d too! Hugs to you too Carol!

[aklap]

Hey Carol,

The other day I was reading thru Living Gluten Free for Dummies by Danna Korn (http://www.glutenfree.com/Publications-Living-Gluten-Free-for-Dummies/Item953034) - I recently added this book to my collection because I thought it would be a good reference for the support group I run. Chapter 17 - Raising Happy, Healthy Gluten Free Kids discuss your exact situation [plus a host of other issues]. See page 290 - Keping the discussion upbeat. According to Danna, it sounds like you handled the situation correctly :)

It's amazing how closely this book follows the philosophies that I have formed over the years [it's comforting to have that validation]. I highly recommend this book for those just starting out. I see this book as a continuation or update of her Wheat free Worry Free book. It also goes a bit further in depth on certain subjects.

Wheat Free Worry Free by Danna Korn (http://www.glutenfree.com/Publications-Wheat-Free-Worry-Free/Item953012) - This was the 1st book in my collection. I got it shortly after I went GF. Danna has a great persona in her books [I'd like to meet/see her in person some day]. Her style is very conversational, easy to read and fun! She includes humor in her books, which I think is a great idea! This is a great book to give to friends and loved ones [after you've read it yourself]. Often times they have a hard time understanding what you're going thru. I lent this to my Mom, after that, she seemed to "get it"...or at least stopped questioning why I couldn't have ___________ ;).

[newsholme1]

I am sorry you and your daughter have to go thru this. Your younger daughter has Celiac too? If so then you probably already have a handle on it. Tell your 13 year old all the things she CAN have when you are talking to her....maybe that will help. My daughter was only 5 so now she's 8 and doesnt' remember it any differently. I don't feel like the gluten free eating is an issue any more except when we are away from home (and then I'll pack something). I try and follow the diet too. Maybe you could try that and maybe it would help if your daughter knows that you are sacrificing too? Good luck with that. I know it's sad but you'll do fine.