Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

High Ttg After "gluten Free" Hospital Stay

chrissy

Recommended Posts

chrissy Collaborator
chrissy
Posted

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..........

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


wolfie Enthusiast
wolfie
Posted

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 Collaborator
Ursa Major
Posted

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 Mentor
ravenwoodglass
Posted
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 Contributor
TCA
Posted

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 Contributor
Nikki2003
Posted

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

I am sorry this happened.

Celina & Nicole

tarnalberry Community Regular
tarnalberry
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


schuyler Apprentice
schuyler
Posted

OMG :o

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

jerseyangel Proficient
jerseyangel
Posted
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 Collaborator
chrissy
Posted
  • Author

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,097
    • Most Online (within 30 mins)
      7,748
    Ann Den
    Newest Member
    Ann Den
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Your DGP-G is also high. The thing to do now would be to trial the gluten-free diet for a few months to see if there is improvement in symptoms.
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      Welcome to the forum, @Roses8721! How long were you off gluten before getting the celiac blood testing done? The testing is not valid after having been gluten free for a significant period of time. Many of your symptoms align with celiac disease.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Hello, I am feeling frustrated. I have hEDS and lifelong digestive issues but my GI PA is very focused on my celiac panel and I just want to make sure that she should be focused on that because completely changing my diet seems to have worsened my symptoms.  Symptoms are constipation, diarrhea, and acid reflux with spicy foods and certain foods like tomatoes, bell peppers, and onions. I also don't have a gallbaldder as it was removed almost a year ago. This also exacerbated my symptoms. I did have joint pain from hEDS but that was already treated with low dose naltrexone about 4 months prior to going completely gluten free. Endoscopy was abnormal but inconclusive; basically showed some inflammation - which common with hEDS. I don't have any vitamin deficiency.   Celiac Panel Results: TTG-A <0.5 U/ML Reference Range: 0.5-14.9 U/ML NEGATIVE: <15 POSITIVE: =>15 DGP-A 72.0 U/ML Reference Range: 0.2-14.9 U/ML NEGATIVE: <15 POSITIVE: =>15 TTG-G <0.8 U/ML Reference Range: 0.8-14.9 U/ML NEGATIVE: <15 POSITIVE: =>15 DGP-G 24.0 U/ML Reference Range: 0.4-14.9 U/ML NEGATIVE: <15 POSITIVE: =>15 IgG-A-M Results: IMMUNOGLOBULIN A, QN, SERUM 165 MG/DL Reference Range: 87-352 MG/DL IMMUNOGLOBULIN M, QN, SERUM 164 MG/DL Reference Range: 26-217 MG/DL   What are your thoughts, internet? Are there any questions I should be asking the PA? Thanks!
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Help. I’m spiraling. Years of extensive symptoms:  What could this be? Years of: Mildly elevated alk and alt Fatty liver Random days of feeling like I’m coming down w flu but no fever and nobody else in house sick Intermittent diarrhea Severe abdominal distension Long history of cavities and enamel deficiency Sound sensitivity Anxiety and depression Low libido Sun skin allergy Frequent fatigue ended up seeing PCP because I looked 8 mo preg. Started gluten-free diet then celiac serology negative. SW GI Dr dx me w celiac as I had been in bed for 3 days after eating gluten after cutting. GI said not to do biopsy because it was clear what was going on and added to chart. My spiral is not seeing anywhere this is done and want to see if anyone else has dealt w this. If not celiac idk what else I will do. Family history or celiac as well as a death related to this. 
    • miguel54b
      Canker sores

      By miguel54b · Posted

      I get canker sores one hour after eating Oats, and pimples in my butt. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.