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Help Me! -- 13 Yr. Old Just Diagnosed

celiac3270

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celiac3270 Collaborator
celiac3270
Posted

I had been having stomach problems for a couple years, but my doctor didn't attribute it to Celiac disease. Finally, after going to a specialist and taking some tests, he said that the blood test revealed that I may have Celiac diseas and that my slightly low bone age backs that up. About a week ago I had the endoscopy.

Prior to the procedure, I was told to maintain a regular diet. Now eating gluten-free, it has been difficult. I love potatoes, so I was glad to have a gluten-free starch that I enjoy. Unfortunately, I am a picky eater. Could someone please give a 13 year-old Celiac some advice on what foods are good? I can search stores for specific brands, if you have any.

School has been difficult as well. In the cafeteria, my problem is not about finding something I would like to eat, but something that I am allowed to have. All I have found is fruit (peaches, apples, banannas, grapes, etc.) and yogurt some days. Thus, I have been eating meal replacement bars for lunch, in addition to whatever fruit I can get. I have also kept corn cakes and some gluten-free cookies in my bag if I start to starve. I haven't found many good meal bars? Again, any advice?

Finally, having just begun the diet, I am not entirely knowledgable. I have read and researched a good deal and will soon see a dietarian about what I can eat and stuff. I have a nine year old brother who likes to eat gluten-packed foods, but that hasn't bothered me too much yet. The rest of my family is being tested. Any advice for a Celiac new to the diet and way of life? All responses are appreciated. Thanks for helping.

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Guest Libbyk
Guest Libbyk
Posted

Here's some snacks that work for me.

corn cakes "sandwich" with cream cheese or peanut butter

apples and cheese or peanut butter

LEFTOVERS

pickles

quesadillas- corn tortilla w/ refried beans and cheese, slasa

popcorn

can of soup (hippie brands are the easiest to figure out- annies, maybe newmans own, etc.)

do you have access to a microwave at school? (If not, start lobying). If you (or whoever cooks dinner in your house) just plans on making an extra serving of whatever dinner you have, it is an easy way to have yummy, interesting lunches.

If you are into cooking, I like to make up a big batch of things, and then have it for the next few days, or freeze some for those "I have to eat RIGHT NOW AND THERE IS NO FOOD" moments. My favorite is to make a big batch of baked beans and a bunch of rice. I can eat off of that for days. (this is making me hungry, actually.)

I hope this helps

Good luck

celiac3270 Collaborator
celiac3270
Posted
  • Author

Thank you for replying. I'll have to try some of the ideas you gave me. Unfortunately, I do not have access to a microwave. Student council has been trying to get a toaster for years, and at times, a microwave, but it hasn't been successful thus far. Thanks again.

flagbabyds Collaborator
flagbabyds
Posted

I'm also 13 and I have had celiac disease for 12 years. School is hard but because I have lived with it my whole life it is second nature to me and it will become second nature to you soon after you have lived with it for a while. For school I bring all my own food and buy chips in the Cafe. Open Original Shared Link has a Gluten Free list and they label all their chips with what they contain. If it contains any traces of Gluten they will label it Contains Gluten Ingredients or Contains Wheat Ingredients. If it doesn'tt say one of those on fritolay chips then they are safe. A lot of companies have started labeling what they contain and if they haev been processed on things that have had gluten on them. If you live in New York or New Jersey there is the website Open Original Shared Link that has a list of restaruants that have gluten-free menus around the east coast. If you have a P.F. Changs near you they also have a gluten-free menu which is really helpful. If you go out to any restaruant they can usaually accomidate you. One time I had to have a Hard Boiled egg for dinner, but at least it was food. I have problems at school because I get really hungry diring school hours because Celaics don't absorb all the fat and calories and nutrients so we need to eat more than normal people. I talked to my school counselor and she was able to get my teachers to allow me to eat in class if I get hungry. Well I have to go to dinner but if anyone has any questions you can e-mail me at flagbabyds@aol.com I reply to my e-mail really fast and my IM is missmolly3001 and I am on IM 24/7 if you e-mail me just put the subject as Celaic or something with Celaic in it so I don't just delete it and never write back to you because I have done that before. I can help anyone with the disease because I have lived with it all my life and it is really easy for me to live with it. But I have helped a lot of my Celiac friends just after they have gotten dx and they have gotten a lot better about the diet becuase we have helped them so much.

DON'T CHEAT ON THE DIET IT IS NOT WORTH IT!!!!!!!!!!!!!!!!

gf4life Enthusiast
gf4life
Posted

Open Original Shared Link

this is the most comprehensive gluten free food list available right now, and since it was updated last September, it should be accurate. You may want to print it out to refer to it when you or your parents go shopping. There may be foods on the list that you thought you couldn't have anymore. :D

Mariann

Guest Libbyk
Guest Libbyk
Posted

One more idea-

since the idea of not having a way to heat up food is cruel and unusual, maybe you could get creative/ agressive. does the teachers lounge have one? Maybe with the help of a parent/ school counselor/ doctors note you could get permission to use that one. you could pull out the "this is a recognized disability covered by the ADA" card.

huletts Newbie
huletts
Posted

Open Original Shared Link

DO NOT USE THIS LIST!!!

I have found far too many mistakes on it, so I would not trust it to be accurate now or ever!!

I recommend buying the Clan Thompson list for PCs (it also comes in a palm pilot version)

It is a pretty extensive list that gets updated frequently

Open Original Shared Link.

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celiac3270 Collaborator
celiac3270
Posted
  • Author

Thank you, everyone, for replying. Molly, thank you for showing me that restaurant site. I was already trying to think of what I'd do when I go skiing in March. I'll check to see if there are any restaurants around the area. If not, I guess I'll bring my own food and meal bars in case I can't find something one night. After doing some more research, a lot of people are talking about fritolays being gluten free. This morning, I had two eggs, an orange, and some potato chips. I've never been a big fan of junk food, but now that I have a limited diet, I think I'll reacquire a love for potato chips, etc.

As for the list Mariann gave me, I am now unsure of what to do. Upon first viewing the site, it seemed like a good source for gluten free food. Thank you, huletts, for warning me that it might not be accurate. I may still be able to use it for food ideas, but I know to keep reading labels (as I would have anyway). I'd rather be safe than go off course and face the stomach problems that have haunted me since first grade. Do you have any examples of "gluteny" foods they incorrectly deemed fine for Celiacs?

Libbyk, unfortunately, many people who have Celiac disease don't know they have it. Thus, I would be alone, or one of few in an attempt to gain access to a microwave. I don't believe the faculty room has a microwave; I could check, but I want to avoid getting too pushy with the teachers. I'll post it if I make progress.

Thank you for all the information. It is helpful to get advice from more experienced celiacs. I'll keep checking for updates. Thanks again.

celiac3270

gf4life Enthusiast
gf4life
Posted
As for the list Mariann gave me, I am now unsure of what to do. Upon first viewing the site, it seemed like a good source for gluten free food. Thank you, huletts, for warning me that it might not be accurate. I may still be able to use it for food ideas, but I know to keep reading labels (as I would have anyway).

This is very wise. The problem is that you will NEVER find a list that is 100% accurate. companies change their ingredients too often, and a lot of times incorrect information is given about the gluten-free status of a food when you call their information lines. It is always a good idea to read the ingredients on the package, every time! The lists are more lik guidelines, rather than gospel.

And any food that you seem to react to should be marked as off limits on the list, so you don't make the mistake again.

I found out some pretty frightening information last night. It came in an e-mail about a gluten free product I had asked about. This proves that we can't always trust the labels, either.

The FDA allows you to "run out" your labels though, because it's too expensive to throw away preprinted labels.

This means that if a company starts adding a gluten ingredient, they don't have to change the label until they run out of old ones! Thats scary. I wonder if that applies to the common allergens like wheat, dairy, nuts etc.

Just thought I'd pass on the warning.

Mariann

celiac3270 Collaborator
celiac3270
Posted
  • Author

Wow...that's scary. Thanks for the warning.

Kim Explorer
Kim
Posted

I am a lawyer and can offer some help regarding accommodations. Your school most assuredly has a microwave somewhere (most likely, the teacher's lounge). If not, then perhaps you can bring in your own. If you are in public school (or a school receiving federal funds), the school will have to accommodate you. If you are in a private school, they should want to accommodate you since you are paying tuition.

There are many things to snack on that you can keep in your locker/bookbag: Peanuts, dried fruits, Whole Foods has a chocolate (and I think a Peanut butter as well) protein bar that is gluten-free, Genisoy may still have some gluten-free protein bars (you'd have to check, they stopped making the one gluten-free flavor I liked), little individual apple sauces, etc. You just have to be prepared and bring your own food.

Good luck

Kim, gluten-free for 5 years

  • 1 year later...
fisharefriendsnotfood Apprentice
fisharefriendsnotfood
Posted

I just thought it was cool to see celiac3270 asking for help - when he's the one giving everyone else amazing advice!

See, everyone starts somewhere!

-Jackie

ravenwoodglass Mentor
ravenwoodglass
Posted
I do not have access to a microwave.  Student council has been trying to get a toaster for years, and at times, a microwave, but it hasn't been successful thus far.  Thanks again.

<{POST_SNAPBACK}>

Bring up the microwave issue at the office, as a former sub teacher I can assure you they have one in the teachers longue. Your parents may be able to work out a way for you to use it. If admin won't allow ask a favorite teacher or aide who has the same lunch block, they might sneak something in to heat for you. After all you have a physical problem it's not just a whim. Also celiac3270 have you tried Lara Bars? these are a pretty good energy bar sort of thing. Atkins makes a couple good ones too but check labels carefully or call them not all are gluten-free.

celiac3270 Collaborator
celiac3270
Posted
  • Author

This thread is nearly 2 years old, so I'm now in high school. There is a microwave in the cafeteria available for anyone to use. Thank you, nonetheless, for replying. I have now tried Lara Bars and the Atkins ones. The Larabars are okay...and I eat them occasionally. I also eat one or two of the (gluten-free types of) Genisoy bars. Oh, that's for snacking, though, at school I now usually heat up a Mrs. Leepers meal that I made at home that morning or leftovers from the night before. I don't really trust Atkins anymore after having been told that the cookies and cream bar is gluten-free, despite containing malt. Even after calling again--and again, they would not budge (that happened maybe 8 months ago). So I have buoycotted the entire product line...if they don't know what malt is, how can I trust that the natural flavors are okay?

Thanks again!

-celiac3270

(wow, you must have gone REALLLY far back to find this one, lol)

Canadian Karen Community Regular
Canadian Karen
Posted

NO WAY!!! celiac3270 WHEN HE WAS A NEWBIE!!!!

That is sooo cool!!! :P;)

Hugs.

Karen

fisharefriendsnotfood Apprentice
fisharefriendsnotfood
Posted
NO WAY!!!  celiac3270 WHEN HE WAS A NEWBIE!!!!

That is sooo cool!!!  :P  ;)

Hugs.

Karen

<{POST_SNAPBACK}>

I thought so too. I also found one when MySuicidalTurtle was a newbie. Hehehe.

skoki-mom Explorer
skoki-mom
Posted

Actually, I find it nice to see some of these threads and see that we *all* had to start out somewhere, gives me hope! I have sure learned a lot in less than a month!

celiac3270, your posts always sound so mature for your age, you are a very impressive guy!

celiac3270 Collaborator
celiac3270
Posted
  • Author

--

fisharefriendsnotfood Apprentice
fisharefriendsnotfood
Posted
Awww...I'm embarrassed.  Let's let this one slide to the back again.  Make lots of posts in other teen-section topics.

<{POST_SNAPBACK}>

Don't be embarrassed!

  • 8 months later...
Guest ChloeB
Guest ChloeB
Posted
I had been having stomach problems for a couple years, but my doctor didn't attribute it to Celiac disease. Finally, after going to a specialist and taking some tests, he said that the blood test revealed that I may have Celiac diseas and that my slightly low bone age backs that up. About a week ago I had the endoscopy.

Prior to the procedure, I was told to maintain a regular diet. Now eating gluten-free, it has been difficult. I love potatoes, so I was glad to have a gluten-free starch that I enjoy. Unfortunately, I am a picky eater. Could someone please give a 13 year-old Celiac some advice on what foods are good? I can search stores for specific brands, if you have any.

School has been difficult as well. In the cafeteria, my problem is not about finding something I would like to eat, but something that I am allowed to have. All I have found is fruit (peaches, apples, banannas, grapes, etc.) and yogurt some days. Thus, I have been eating meal replacement bars for lunch, in addition to whatever fruit I can get. I have also kept corn cakes and some gluten-free cookies in my bag if I start to starve. I haven't found many good meal bars? Again, any advice?

Finally, having just begun the diet, I am not entirely knowledgable. I have read and researched a good deal and will soon see a dietarian about what I can eat and stuff. I have a nine year old brother who likes to eat gluten-packed foods, but that hasn't bothered me too much yet. The rest of my family is being tested. Any advice for a Celiac new to the diet and way of life? All responses are appreciated. Thanks for helping.

I know what you mean but heres what I do for lunch I pack! I also just found out that I had celiac disease also just two days ago! rice chips are really good! so if you want chips I would try that.

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