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Celiac Teen Book

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I got this e-mail from a woman I met at our Celiac walk. She is putting together a book about celiac teens and she wanted stories from teens around the country. I wanted to post it here so you could write for it too. her e-mail is You can e-mail me if you have any questions or e-mail her. My e-mail is here is the e-mail. I really hope some of you write for this. It will be a really good book.

Hey girls!

My name is Reyanna (ray-AWN-uh). I met you at the

Celiac Walk.

Mary-Lou (a woman from Southern California) and I are

putting together a book for teens with Celiac... I

mentioned it to you at the Walk.

Well, I was just wondering if you all wanted to

participate. You can write a story for one or more of

the chapters. If you want to write for more than one

chapter (like three chapters), then write different

stories for each chapter. Share a positive experience

you've had in any of these areas. We want this book to

be encouraging and positive for other teens so make

sure to show that in your story.

I know there were more teens at the Walk, but I only

met the three of you. If any of your friends from

R.O.C.K. (7th grade through college) would be

interested, let me know, and I'll send them an email

as well. :)

Here are the chapter topics:

1. Family Support (and what the impact is when

family members also have celiac)

2. Friends (how friends can help ease the peer

pressure and be a support)

3. Junior High (how younger teens balance

having celiac along with the other peer pressures of

junior high)

4. High School (does celiac interfere with many

of the routines and activities of high school?)

5. Going Out To Restaurants and/or With Friends

(What are your favorite restaurants? How does this

diet affect your choices in restaurants/fast food

places? Does anyone use a restaurant card?)

6. Applying To College (How has celiac affected

your choices in colleges, location of colleges, etc.?)

7. College (What is campus life like without

all the gluten containing foods? What are some tips

you can give others regarding this time away from


8. On Your Own For the First Time (Is it easier

of harder than when you lived at home and had someone

else cooking for you? What are some of your secrets

to adjusting to this lifestyle?)

9. Power of Support Groups/Websites (What

affect, if any, have these groups had on your psyche?

What have you learned from them?)

10.On-Line Food Shopping and Grocery Shopping


11.Dealing With Other Food Allergies Along With


Here are frequently asked questions so far:

1. Where do I send them?

You can just send them to me.

2. One big story or separate stories for the separate


Don't make it one big story, write a different story

for each chapter you are planning on writing for. :)

3. Do I write about my diagnosis and symptoms while

answering the questions?

It's your call. If you think it sounds good, stick it

in there. Use your best judgement. :) If you're

deciding on using your diagnosis story for each story

you write, make sure it's not word-for-word because

that could get boring if you submit 5 stories. LOL. Be

creative and use where necessary.

4. Will all stories (written by different authors) be

lumped together in each chapter and appear as if one

person wrote it?

NO! Each chapter will consist of several stories

written by different people. This is 'Chicken Soup for

the Soul' style.

5. Will you make changes to my stories?

We will only edit for spelling and grammar, and if we

need to take out parts of your story, we will contact

you for your permission first. Although, I don't think

that will be happening because Mary Lou would have

mentioned that. There currently is no length limit.

6. Will you change my name?

If you want us to. You can be credited if you'd like

or we can keep you anonymous or we could create a fake

name for you (I'd actually enjoy that because I love

names so much! Tee hee.) or you could create a fake

(pen-name) for yourself. It's your choice. :) My hope

is that everyone will want to use their real names,

and your name will appear at the end or beginning of

each of your stories. I think this is only fair to

you. :)

7. When does it need to be finished?

August 10th... so get started soon. I'll be sending

reminders during the next few months. :)

Happy Writing!

Stay strong.


p.s. Let me know what chapters you'd like to write

for. If you don't want to write any stories, let me

know that as well. :) Thanks girls! I'm looking

forward to hearing from you.

I really hope I get responses from people because she really wants lots of stories for this book.

Thanks so much!!!



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P.S. you have to be a teen to write for this book, no parents writing about their, or their children's experience



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    • As for eating out, I have found anywhere in the UK that in even semi-decent restaurants I can tell them exactly what I want. Look through their menu and pick things you like and tell them what you want and how to cook it. Most decent chefs will like a change and a challenge and I have been pleasantly surprised with the help that they have given. After a while you will have list of decent restaurants that you can trust. Usually I ask for a rare staeck cooked in Corn oil or olive oil with boiled potatoes and non-buttered veg. If you starts thre the chef usually gives other suggestions but make sure he/she is well aware of basic coeliac gluten cross contamination in kitchen, esp deep fat fryers.
    • Hi plumbago, No, D is not a symptoms only associated with severe celiac disease damage, if that's what you are thinking.  Every time we ingest gluten the immune reaction is kicked off again, and the damage starts all over.  If we ingest gluten daily, the immune reaction never stops, and we end up  with significant damage.  If we stop eating gluten, the immune reaction will decrease over time, and the damage will decrease also.  Healing will also happen as well. The moral of the story is Stop Eating Gluten!
    • Hi Ken. I know how you feel. I am Coeliac (UK!) with multiple intolerances and it has taken me meny years to isolate exactly what the problem foods are. I cannot really advise you what to eat or to avoid as everyone is different but I can suggest you "go back to basics" - in other words absolutely no processed foods even those that are heavily advertised as Gluten Free etc etc - just have a good look at what is in them. Basic food, cooked from scratch is healthier and much easier to isolate foods that you may be intolerentto. I cannot eat: Gluten, including Oats, all dairy, eggs (whites are worse than yolks), soya (a real b---h), preservatives (phosphates, sulphates, sulphites -which rules out 99.9% of wines and most bottled drinks) and various veg/fruits including butternut squash, cashews, grapes, pears, leeks, Celery (sulphites) and artificially "smoked" meats and stock cubes (I keep all bones and make my own stock, free!). I now cure my own bacon (simple - belly pork with dry cure of rock salt and molasses/demarara sugar for 5 days in fridge) but stay away from all pre-packed sliced meats which are full of preservatives) and the only bread I can eat is Seattle Brown Loaves. Keep well away from "E" numbers and any foods that require processing in their production and beware of "Vegetable" oil which is usually soya. Use Corn oil, Ghee (salted butter melted in a pan, remove the scum which is the protein and you are left with a golden liquid) or walnut/coconut oils. Also beware of Crisps/Chips (USA term). Most are sprayed with some liquid prior to cooking and only one type does not affect me - Kettle Crisps/Chips, low salted only NEVER take artifical flavourings in any foods - hidden in E numbers. If I do eat any of the above the symptoms are basically the same, headaches, wind, tiredness, migraines and a feeling of "low" almost depression but not quite as bad. Can last for up to 5 days but usually 1/2. It is really the caveman diet - absolutely no fast foods. I can make myself a meal in a few minutes with anything I have in the house. I eat any meats, most veg (onions, carrots, garlic, peppers, potatoes, of course, green veg etc). A wok is good to have as is a pressure cooker for making stock out of bones. Menus: Breakfast, bacon, fried potatoes, onions peppers. Tea with Honey and Coconut cream (coconut a gem!) and Seattle bread toasted (best that way with "Pure" Sunflower spread) . Lunch: soup, toasts and meat of some kind. Apples, oranges etc Dinners: staples of potatoes, pastas (Gluten free of course), rice, meats, veg, fish. Never concern yourself with what you cant eat, concentrate on what you can and I enjoy cooking my own food and I can also prepare a dinner party and nobody knows it is designed for me! Best of luck, it is a change of lifestyle for the good. Excuse ramblings at times as I keep remembering things as I write.
    • Hi Weary, I think what you are talking about is refractory celiac disease.  Refractory celiac disease is when the immune system does not stop attacking the gut villi even in the absence of gluten for a long period of time.  I don't know a perfect treatment for that condition, but sometimes people use enteral (tube) feeding.  Refractory celiac disease is pretty rare so not many members have direct experience with it.  I posted a link to a thread started by glutenwrangler who used enteral feeding. I think in glutenwrangler's case they thought he had refractory celiac disease but eventually were thinking he had eosinophilic esophagitis.  But glutenwrangler hasn't been around the forum for years. I've read about people with Crohn's Disease using low dose naltrexone as  treatment. I think if you have a serious food problem doing the Fasano type diet for a year or more might make sense.  Maybe give your immune system more time to settle down?
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