Omg...i Am So Mad I Could Spit Gluten Free Nails!

[strawberrygm]

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??????

[ShayFL]

I would be upset too!! But I have never heard of getting financial aid for gluten-free foods in America? Are you in Europe? Do they have Whole Foods in EU? Does your insurance pay for specialty foods?

[strawberrygm]

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.

[*lee-lee*]

can you go to another doctor? you can take all your daughters test results and see what someone else says. my GI would not officially diagnose me but my regular doctor was like "if it looks like a duck and quacks like a duck, it must be a duck".

that's an awesome program...what i could do with $200 in gluten-free foods each month!

[strawberrygm]

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.

[ShayFL]

That really does suck bad. I hope it goes through cuz that is a wonderful program.

[strawberrygm]

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!!