strawberrygm

wow.

i have never heard of clubbed nails. after reading this, i looked up pics of it. my nails curve under as well. i dont have the swollen look. i have the random white lines in my nails as well. i havent been tested for celiac, as i am currently without insurance. i have read that celiac is more common in ppl with european heritage, my mother is german. the more signs and symptoms i see of celiac, the more convinced i am that my dd inherited it from me.

back to your dd. i agree with the others. go with your gut, push until you have all the answers you need. there is nothing more scary than the thought of loosing a child. i completely understand where you are coming from. when my dd was 3, they tested her 3 times for cystic fibrosis before getting a negative result. she has been so sick all of her life and the first 2 tests were right on the line. i can remember getting in the shower in her hospital room sobbing hysterically b/c no one could tell me why she was so sick all the time and what was wrong with her. it is a paralyzing feeling. i will certainly be praying for you and your family. if you would like to talk, feel free to email or pm me!

We go to see the doc this wednesday (the ped gi) to find out wtc is going on, why he wont sign off on the forms, etc.

i will let you all know what happens.

in the mean time, does anyone have any suggestions of things i should ask, bring up, point out, etc????? thanks!!

her regular pediatrician signed off on the diagnosis, but since we also see the ped gi, they want the letter signed off by him as well.

ugghhhh

i just so do not understand why with 2 bloodworks, a biopsy, and telling me to put her on the gluten-free diet they would now say they arent going to sign this form confirming diagnosis.

they (the ped gi office) is 2 hours away from us, its not like i can just run by and talk with them.

nope. i am in TN. its a program thru the local health dept called Childrens Special Services. Similar to WIC, only for older children and for certain issues, such as celiac. I am not sure what other intolerances they cover. if we can get this form filled out correctly, we will receive $200 in gluten free foods each month! we can choose them, from a list they give us. you can only order once a month, but the list is like 4-5 pages long of things you can choose from, 2 columns of choices! i was so excited when i got the order list and filled it out, thinking my dd would get those items that i dont have easy access to! we are approved, just waiting on the form from her ped gastro.

below is the letter i just emailed to my dd's ped gastro office.

any advice?

lacee has had 2 sets of bloodwork and an endoscopy. all of these pointed to celiac disease. we were told by your office to start her on the gluten free diet.

now, after having her on this diet since july, you tell me in october that you will not sign off that she has celiac so that we can get financial help in providing her these foods??

i am beyond upset.

she has had a positive response to the diet, feeling so much better. her iron is a tad bit low, but vitamins will hopefully clear that up.

do you honestly think i would be making her eat these specialty foods, missing out on pizza, birthday cakes, and of the other celebrations at school, friends' parties, etc just for the fun of it?? do you have any idea how hard it has been on our finances to supply her these foods? do you have any idea how hard it is for us to even gain access to these foods considering the nearest whole foods store is 2.5 hours away??

in the voicemail you left me, you stated that you wanted to see her in the franklin office asap. he is only there on wednesdays. when can i come??????

no, i havent had her checked.

i will soon.

thanks!! =)

my daughter is 10, has been on gluten free since june.

she is always, always, ALWAYS sleepy and tired. i dont think she is depressed, as there is less drama with her friends (that i am aware of) right now than there has been in a long time.

is there something she is missing in her diet?

is this a side effect of celiac?

also, she has bad breath. even right after i know she has brushed her teeth. is this also a celiac thing?

what can i do to help her with her energy and breath??

thanks

These?

NEWMAN-O's

Product Description: Cr

thank you all so much for your help!!

i feel much better now!!

i am sure i spelled the title wrong.

anyway.

i thought that celiac did not cause emergent reactions.

i was recently told that people have gone into anaphalatyc shock from consuming wheat and gluten. people who are celiacs. is this true?

does my dd need to carry an epi pen?

The issue is underlying causes. There is nothing about celiac that makes a person unable to have milk. Depending on the nature of damage to the villi, an unhealed celiac might have problems but that would be due to damage not the celiac directly. Once off gluten and completely healed, there is no reason for a celiac to avoid milk. Of course, being celiac doesn't preclude you from having other diseases that might prohibit milk.

so as long as she has no other diseases she is ok with milk?

her damage to her villi was minimal but there.

They say they are wheat free, so i bought them and my dd loves them.

Then i noticed in smaller print it says "not a gluten free product"

nothing in the ingrediants list suggested issues to me.

what am i missing?

have i glutened my child?

i was recently told by a lady w celiacs that whole and 2% milk is a no-no for those with celiac.

is this true?

great!! thanks for your help!! i have never made one, i may try if i cant find one online.

i am starting a support group in my area on celiac disease

this meeting monday night is an informative meeting, as school teachers, school nurses, grandparents, etc will be there to learn about celiac and gluten free

i have the nutritionist from our local hospital coming, and i am doing a presentation as well

i want to cover signs, testing, and how to live with this disease. i want to stress the importance of staying gluten free, why occaisonal gluten is still really bad.

i really need a power point presentation............

any help is greatly appreciated!!!

thats pretty much what i was thinking, that the risk of cc would be too great.

i just wanted to get everyone else's opionion and experience.

i read somewhere that someone wasnt affected by cc, only consumation. how do you know if this is the case?

i want to make sure i am providing for her what she needs.

her biological dad still doesnt get it. i told him the other day that she nearly cried for bread as she hasnt had any since dx, his reply was to let her have some every one in an while. uggh! lacee even said the other day, you know mom, dad is gonna let me eat gluten when i am there. i told her yes he may allow it but are you going to eat it? she says no. i certainly hope she does!

Today is day 5 back to school.

So far we have been just sending her lunches.

She has permission to buy fruits, veggies, drinks, ice cream from the cafeteria.

I have this form to fill out, and I need your help on what to say. I am still new to celiac, so I dont want to leave anything out.

The following questions:

List any dietary restrictions or special diet

List any allergies or food intolerances to avoid

List foods to be substituted

List any special equipment or utensils that are needed

Indicate any other comments about the childs eating or feeding patterns

I also got a note from the cafeteria manager. She sent me the menu for the month, and said to let her know what days there wasnt anything lacee could eat and she would be happy to fix whatever she needed.

Thanks so much for your help and advice

I am starting a support group in Savannah TN.

Meeting this coming Monday, Aug 18, at 6pm at the Hardin County Library in Savannah.

The nutritionist from the local hospital will be speaking.

Savannah is 2 hrs from Memphis and Nashville, 1 hr from Florence AL and Jackson TN, 45 minutes from Corinth MS.

they know she has celiac disease at school. she was just diagnosed this summer.

school has been in for 4 days, tomorrow is day 5.

so far i am just sending her lunch, and she has permission to get fruit and drink and ice cream and veggies from school if there is something she wants and can have.

so far she has bought tangerines and a drink, but thats it.

today the school nurse called, and has sent home a paper to have filled out and signed by the doc just to help educate and make everyone aware and everything official.

(she is planning to come to my support group meeting i am having monday night)

so i need help as to what to put on this form.

it says:

list any dietary restrictions or special diet

list any allergies or food intolerances to avoid

list foods to be substituted

list any special equipment or utensils that are needed

indicate any other comments about the childs eating or feeding patterns

there is also a food allergy action plan, but i dont think that one needs anything as it deals with epipens, etc

also, a note from the nurse that the cafeteria manager sent me a copy of the menu for the whole month and wants me to know that if there is nothing she can eat on a certain day to let her know and she will be glad to fix whatever she needs.

thanks in advance for all your help

i am still new to this, and am learning..............

my son, age 3, tested neg for celiac via bloodwork.

my dd, age 9, just diagnosed this summer.

i havent had the baby tested yet.

i know children are famous for innacurate testing.

how long should i wait to retest?

its not that i want them to be positive, but i think it would be easier the sooner you know.

I stopped at the only health food store within an hour from here the other day and bought 4 items.

Bobs Red Mill Choc Chip Cookies -- we have made these and we like them, although they burnt very quickly on the bottom -- could be b/c I used tin foil to prevent cc from cookie sheet

Bobs Red Mill Pancake Mix

Bobs Red Mill Homemade Bread Mix

Arrowhead Mill Pizza Crust Mix

I want to make the bread today by hand (we dont have a bread maker). It calls for 1tsp cider vinegar. I dont have any. What is it for and can I make the bread without it?

This store did not have any other brands to choose from.

oh wow.

well, even if they just provide her with refrigerator space and microwave use, that would be extremely helpful. i hate the thought of having to eat a sack lunch every day, never getting anything warm.

in our district, the food is already placed on plates, the kids just pick a plate with a main dish, then they get a plate or bowl with a side dish. so its kinda self serve but not totally. as long as the cc is under control during the prep, cook, etc..i think it will be ok if she wanted a fruit or a veggie from school. now at the high school it is completely self serve, but she is just going into 5th grade this year, so i have a few more yrs before i have to stress over that.

thank you so much to everyone for your imput!

i am so glad this forum is here!!!

I was told yesterday that schools have to by law provide gluten free lunches to children diagnosed with celiac.

Is this true?

Do any of you have this done?

How much of a fight was it?

i called both of these restaurants in florence alabama.

the girls who answered the phone at both places was probably the hostess, and neither had even heard the term gluten free.

they each asked, and both came back saying they did not have a gluten-free menu, and that they could not guarantee.

my dd doesnt seem to have an issue with cc.

we live in a town with no chain restaurants other than fast food, so we are just having to tell the cooks, waitstaff, etc to be super careful. we are so lucky, they have all been awesome.

so anyway, do any of you have any experience with logans or texas roadhouse?

everyone has given great advice.

i am new to this as well, my daughter, lacee, is almost 10 and has now been gluten free 2 weeks.

she has had tummy issues in the past, ulcers..anxiety, and the like. i too was stunned to get the diagnosis, but am trying to make the best of it and be super positive for her sake.

its going really well so far.

we should get our kids together to talk and support each other!!