High Ttg After "gluten Free" Hospital Stay

[chrissy]

i finally got the results of the Ttg test i asked the hospital to run on tianna while she was in-patient. her levels were over 100. i asked the reference range of the test-----30 was considered moderate to high----wanted to make sure i wasn't misunderstanding something. her levels were almost back to normal before she went to the IPU. i have a hard time believing that the hospital could make such a big mistake in her diet----but the numbers are there. they said that she was gaining weight slow..........

[wolfie]

OMG!!! I am still so very angry for you!! I am glad that she is now home where you can feed her safely! The hospital and dietician both need to learn some stuff about the gluten-free diet apparently.

[Ursa Major]

Yikes! As others said before, hospitals are definitely NOT safe places for people with celiac disease. Very sad and infuriating.

Good thing Tianna is home now, where she'll be looked after properly!

[ravenwoodglass]

i finally got the results of the Ttg test i asked the hospital to run on tianna while she was in-patient. her levels were over 100. i asked the reference range of the test-----30 was considered moderate to high----wanted to make sure i wasn't misunderstanding something. her levels were almost back to normal before she went to the IPU. i have a hard time believing that the hospital could make such a big mistake in her diet----but the numbers are there. they said that she was gaining weight slow..........

I would contact the head of the hospital in writing and include copies of the test. If you have copies of her tests preadmission send those also. You also should at the same time send a copy of the administrators letter to the nutritional services dept and to your insurance company. I would not be nasty but I would go into detail about the ill effects this had on your child and your deserved mistrust of their facility. I would also insist that nutritional services give you a letter in writing stating that they will check all foods and preperation areas before I would allow the hospital to feed her again. The only way we can stop stuff like this from happening is to be vocal, nice but firm.

[TCA]

It makes me so angy that a place we go to get well ends up poisoning us! I really feel for you. We had a really good experience with Vanderbilt Children's, but I questioned EVERYTHING!!!! If I wasn't sure, I didn't eat it. I hope Tianna starts gaining well soon! (((((((((((((((((HUG)))))))))))))))))))

[Nikki2003]

Could it have been a medicine she recieved,because medicines also have gluten in them.

I am sorry this happened.

Celina & Nicole

[tarnalberry]

I too would encourage you to contact the head of the hospital, copying the dietician, with the before and after results, noting that it is quite solid evidence that they were ignoring direct medical orders for her to be kept on a gluten free diet and not only contributing to her poor health, but impeeding her ability to gain weight, which was part of the point of her going there. Do include the incidence where she, and you, tried to correct them. This is definitely negligence - bordering on willful negligence, given the amount of involvement the two of you had with the staff over dietary issues.

[schuyler]

OMG

I'm so glad Tianna's home now where you can make sure that she eats gluten-free.

[jerseyangel]

I too would encourage you to contact the head of the hospital, copying the dietician, with the before and after results, noting that it is quite solid evidence that they were ignoring direct medical orders for her to be kept on a gluten free diet and not only contributing to her poor health, but impeeding her ability to gain weight, which was part of the point of her going there. Do include the incidence where she, and you, tried to correct them. This is definitely negligence - bordering on willful negligence, given the amount of involvement the two of you had with the staff over dietary issues.

I agree! This is obvious negligence.

Chrissy, How is Tianna doing now that she's back home?

[chrissy]

tianna is doing ok. she has lost 3 1/2 lbs. but they told us that they expected her to backslide some. we still need to get a far better routine established----but we keep making trips out of town for her appoitments. i have talked to the high school about what needs to be done. later my sister told me there is a medical 504 lawa that she should fall under and the school will need to take care of these things if i want them to. she said they just don't always tell you. we have a new principal, and he seems to want to be very accomodating, so hopefully we will be able to get everything worked out without too much hassle. a big problem is that they split the lunch, and the younger students don't go to lunch until 1:15, which is way to late for her.