jackie4

My daughter was diagnosed in feb 2006. She was diagnosed within six monthsso there was not much damage to her villi or intestines. She has been for a follow up with the gastro pediatrician and is really doing great. My question is do we need to acontinue to go for more follow up visits or does she need another endoscopy as a part of a routine follow up? We are close to nyc and i was wondering if she should see a celiac specialist at Columbia(I have heard that they have a whole department dedicated to celiac treatment).

I am a llittle confused on the whole oatmeal topic. Is it alright to eat and if so what brand? I heard that McCanns is good but are all of their products ? I grabbed the instant Maple and brown sugar flavored. Any help would be greatly appreciated. thanks

I am really craving french fries. I love(d) McDonalds french fries and miss them so much. Anyone know how to make them at home that taste like them??

If you have Red Robin by you their fries are awesome- Just tell them no seasoning!!

Hi. Does anyone now of any gluten free matzos? passover is coming and i would love to have some but can't seemto find any.

I am alittle confused on the status of white vinegar. Is it gluten free after it is distilled or not at all? Does anyone know? I have heinz white vinegar.

Hi! My daughter is going for her 6week follow-up appointment with her doctor. She was dx in January by biopsy. She definetly feels better since going gluten free but still has some bad days. I was just wondering if there are any questions I should ask. I already have a list that includes Lactaid use,vitamin supplements, second endoscopy. I am new at this so anything anyone might think of to ask would be very helpful. Thanks-jackie4

I LOVE THAT THEREIS THIS BOARD !!!!

I love that my daughter is starting feel betterand to look better.

I love that at fourteen she still asks once in a while - if she can sleep with me.

I love that my 11 year old son is such a silly-heart and dreamer.

I love that my husband can sense when I have had enough and will clean the whole house.

I love that after 17 years of marriage I still get butterflies in my stomach from my husband.

I love my closest friends for fixing an entirely gluten free dinner for my daughter and made her feel special.

i love being down the shore.

I love having a house full of kids and baking cookies(gluten free of course) and waiting til they all end up in the kitchen.

Ilove my mutt shaina.

I love that sometimes life can be really good!

I love listening to counting crows while I am in the shower!

I love putting my cold feet into a warm pair of ugg boots- with no socks!

Ilov eit when my husband warms up my side of the bed for me.

i love my early morning talks with my mom.

I love that my sister sends me positive reiki energy from 800 miles away.

This is making me teary eyed!

Frist off besides gluten, what other foods are off limits? Does she have access to a fridge or cooler or oven?

I only have to aviod gluten currently and I brought to work apple, yogurt, banana, and a bag with varius lunch meat.

So far it is just gluten. We go backk to the doctor on March 22 so I guess i will ask her about other foods. She doesn't have access to a fridge or oven . Yogurt would be great but she can't tolerate it yet. She has never been a lunch meat kid. She is such a picky eater to begin with. It is just so frustrating. I am going to go to whole foods today and wild oats and see if I can find anything. Also your son is soo cute. I love that age!

Hi ! My 14 year old daughter ws diagnosed about 6 weeks ago. I can see that she is doing better but still says that when she eats her stomach hurts a little. She usually has dry cereal for breakfast- she can't tolerate milk yet- and brings her lunch. She used to bring a rice cake with peanut butter and a juice box. Now she is down to just an apple. She eats dinner and some homemade granola bars when she gets home but I know that she is not getting enough nutrients. Any other suggestions for lunch. For some reason she refuses to eat salad at school. I am so worried and it causes such tension everyday. Does it get better ? jackie4

I never thought about the pan. I am not sure if I was the last one to use but now that I think about it it was drying on the counter so I guess it didn't go through the dishwsher. I will be more careful. I also think that I will just go gluten free in the whole house. I have gone through about 2 rolls of paper towels a day wipeing down the counters and the microwave.

The reason I think that the fries may have glutened her is because they were from the lunch room cafeteria and who knows how they are prepared.

I also question myself everytime she doesn't feel well. Could it be the celiac or is she just getting the stomach bug or the flu. I feel bad because I am constantly asking her how she feels and I know tht it must get annoying especially if you are 14. I will have to make an attempt to step back and let her tell me when she isn't feeling well.

I will also ask the doctor about the endometriosis. Sometimes it just seems so overwhelming. Thanks so much for the help and advice- it really, really helps to have somewhere to go with questions!

I am not sure that this goes in this section. My daughter has been gluten free since January except last week she ate two fries from a friendds lunch. She was out of school for two days. Since that we have been super careful and she was doing great until last night. I made her eggs for dinner which she has once a week. Two hours after that she had horrible stomach pains and woke up with them this morning. She is also due to get her period soon and everythng seems to get much worse at this time of the month. Is this normal and has anyone ever had a reaction to eggs? I just want her to go for a while without being in pain. Jackie4

Please feel free to share with anyone! I am just so glad to be able to give something back to this board .

I have been having a hard time finding cereal bars for my daughter to take to school. She hates them all so finally I made my own. I used a recipe and added some of my own stuff. After they cooled off I cut them into squares and wrapped them in wax paper. I froze some too. They passed the taste test - similar to quaker choc. chip bars.

Recipe- 1/2 c brown sugar-1/4 c dark corn syrup-1/3 c sweetened condensed mild-2TBSP butter- 1/2 tsp vanilla- 31/2 c granola( I used the enjoy life granola cereal- it tastes nasty by itself but worked in this recipe) 1 c crispy brown rice cereal.

Mix sugar, corn syrup, milk,butter and vanilla together. Add both cereals and mix . It will be very sticky. Press into a greased 9" by 13" pan. Bake at 350 for 20 minutes. After about 10 minutes I took them out of the oven and put semi sweet choc chips all over the top and baked for another 10 minutes. Then I let them cool about 15 minutes and cut them .

They were really good and really quick to make. Hope this helps you guys out. jackie

Just wanted to let everyone know that all of Rita's water ices are gluten free except fudge brownie, choc chip cookie dough and cookies and cream. I didn't ask about the custard but they did say that they don't mix serving spoons. Also if anyone is from central Jersey there is an ice cream place called Applegate Farms and they post their glluten free icecreams-too many to list. It is by Freehold Mall.

-I am new at this and my daughter is a cereal person. She ws dx 4 weeks ago and I read that cocoa pepples were gluten free. Is this true or is there a chance of cross contamination? Sometimes they bother her and sometimes they don't. I was thinking that maybe it is the small amount of milk that bothers her. Any suggestions?

What are the dining cards? I have heard about them but I am not sure what they are.

Hi! My daughter was diagnosed 4 weeks ago and has been really good about being gluten-free. Monday at school she had 2 fries from the cafetria. She said her stomach didn't hurt until that night. She stayed home from school the next two days with severe sharp stomach pains but no diarhea or vomiting. At first i thought the start of the stomach virus but now she is fine. Could this be a reaction to the fries even if the pain didn't come for several hours?

Hi Mbg! I am in the same situation. My daughter was dx 4 weeks ago and about twoweeks before that we booked a trip to the Dominican Republic. I am so nervous because it isn't like vacationing in the US . I don't think that there are any supermarkets to run to. I am going to call the resort ( it is all inclusive so maybe there is one restaurant that will work) and ask them for a frig in our room. Then I am going to pack up the rice cakes, peanut butter, homemade muffins,salad dressing and cereal. the one good thing about going to the islands is that there is always fresh fruit and salads. hopefully it will work out better than our last vacation. We went down the shore and we thought liz had ulcers so I kept pushing bagels, pasta, and cereal bars on her thinking they were mild and wouldn't uspset her stomach. Now I know why she was sick the whole time. AHHH.

Good luck and enjoy your vacation!!

Hey! I was wondering about that too. I have heard people talk about them but not sure where or how you get them. I am not sure my daughter would use it when she goes out ( she is 14 ) but it would be helpful when we go out as a family. jackie4

You are in the right place. My daughter was diagnosed four weeks ago and I felt the same way. I got so much information and everyone is so nice that it made an overwhelming situation more manageable. She is feeling better and that makes keeping to the diet a lot easier. One tip I do have is always carry your cell phone with you when you are shopping. Since i am not 100% sure about ingredients yet , if I find an item I am not sure about I call the 800 number and ask. Then I add it to my neverending list of gluten free foods. Good luck with your visit! Jackie4

Ps. Gluten free Pantry makes an amazing brownie truffle mix and I can find it in the supermarket. I made a bunch and then cut them up and froze some. They are great!

Hi all!!!!!! I just wanted to share some good news about this past weekend! I had posted that I had concerns about going out of town this past weekend- eating out, feeling bad, ect.....

Well I took everyone's advice. I packed a bunch of Lara bars, my favorite crackers, stocked up on Whole Foods cookies, and had the hotel put a refrigerator in the room. When we were settled in the room, we found the local whole foods and stocked up on yogurt, fruit, and other things that would be helpful.

This is the first time in about 10 years that I actually felt really good on a vacation. I did not get sick, not once! I actually ate at a seafood restaraunt, I ate at Chili's and I ordered room service berries to go with my yogurt. You see, I had not really eaten on vacation in all that time. I would always feel sick, I wouldn't have any energy, and by the end I couldn't wait to get home to where it didn't really matter that I was sick-it's always easier at home. But this time, and most importantly......I was able to really relax, and enjoy this mini-vacation!

I wanted to give a positive side to this crumby disease.....I would give up all the bread, restraunts, whatever, to just feel good and enjoy my life again, and now I feel like I finally have that, a LIFE!!!!!!

Thanks to all who gave me advice! And here's some hope to those just starting out- it does get better, just try to focus on the positive when ever you can!

Lollie

That is so reassuring. We booked a vacation to the Dominican Republic before my daughter was diagnosed. She is 14 and I was nervous about what she could eat but putting a refrigerator in the room is a great idea. It is great to hear such positive feedback. It makes me feel so much better to know that it does get better!! Jackie4

Kinnikinick makes some pretty good bagels and you can order them off their website if you can't find them in stores locally.

Open Original Shared Link

Chebe makes a really good pizza

Open Original Shared Link

if you have a Whole Foods near you they have an awesome line of pre made Gluten Free baked goods

Open Original Shared Link

hi nini! Thanks for all of the info. I have tried the bagels and they are good. my son- who does not have celiac disease- keeps eating them. I willl ltry the pizza. elizabeth really misses that the most. Everyone on this forum is so supportive!! I really appreciate it . have a great day!!! jackie4

Hi Jackie4,

I was diagnosed about 7 months ago and felt so helpless after my first gluten-free trip to the supermarket. I have been sticking with a very basic diet of foods which I am sure are gluten-free. I tend to buy items which say "gluten-free" right on the package.

I started to put together a binder and divided up the sections into gluten-free medicines, recipes, product lists, eating out, and recipes. I bring it with me when I travel and find it works well.

Bette Hagman has some good cookbooks. I think the one I have is "The Gluten Free Gourmet". It has a lot of basic food ideas.

My kitchen is not completely gluten free and my husband and I have a good system going. We both wipe down the counters after preparing food on the counter and I have my own peanut butter, butter, jelly, and salsa labeled. I also have my own toaster labeled. I'm a bit neurotic about it, but it seems to work well. My husband is really open to the diet and listens to my concerns about the shared kitchen.

Let us know what else you need help with.

I have been sticking to a lot of fresh fruits and veggies but it just isn't cutting it for a fourteen year old who lived on pizza and bagels. I just bought another toaster and have dedicated a pantry and a shelf in the frig for her butter, jelly etc. I will try the cook book and the binder idea sounds good. At least I won't have all these papers scattered in my grocery cart. Thanks for the help and support! jackie4

I haven't used it, but I've thumbed through The Wheat-Free, Gluten-Free Cookbook for Kids and Busy Adults and it looks like it has a lot of good, easy recipes in there. I saw it at my local barnes & noble.

My kitchen is gluten-free (I haven't touched my canisters, I'm afraid to! I think I'll buy new ones), but DH has a dedicated glutened shelf where he can keep his cheerios, mac and cheese, etc. He can only have pre packaged glutened foods in this house!

DH doesn't mind that I'm not making gluten stuff, and he likes tinkyada pasta better than regular pasta!

I like your idea of only packaged gluten foods in the house. Today I went to make my son cookies (he does not have celiac disease) and the flour sort of puffed out all over. i never noticed how much gets all over everything. I just threw it out and wiped everything down about 10 times. Pre packaged gluten items are much easier. Thanks for the tips. jackie4

Hi. My fourteen yearold daughter was diagnosed three weeks ago. At first I thought I had everything under control and then all this information came flooding in. When I go to the food store I have about 20 pages of lists to look through . Does anyone have any organizing ideas. Also I was wondering if there are any good books or cookbooks out there with meals that a picky teen would eat. My son who is 11 loves all the gluten free food so I am thinking about making the whole house gluten free. i t just seems like an easy solution. HELP jackie

My daughter , Lizzie, was just diagnosed last week- through a positive biopsy. She is 14 and has exercise induced asthma. Has anyone noticed if this was directly related to the celiac. Also since having the stomach pains they seem to comemore often when she is running and they are more severe than usual ? Is this something that is normal with celiac disease? Jackie