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

Got The Test Results Back, Now Have More To Do "frustrated"


Guest GoofyG

Recommended Posts

Guest GoofyG
:( DD who is 3, had some blood work done. Her test for the celac disease came back neg. When they tested her to see how her nutrients was, it was very low. So dhe isn't getting any nutrients. They are now going to do a scope on her Wednesday. They said it would take 3 days for the results. I just hope they get what they need. My other DD who is 1 will see him on Monday, though he said he doesn't want to do the scope on her. So I don't know what all is really going to happen. I guess there is something going on since she doesn't absorb her nutrients. I'll update when I hear anything. Has anybody else been threw this? Is DD going to be herself that day, or just sleeping. This will be her first time having a sedation. I don't know what is going to happen. She is sooooo little.

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



Celiac.com Sponsor (A8-M):



ptkds Community Regular

Sorry you don't have a real answer yet.

When you take dd in, they will probably put an IV in and sedate her. She will go to sleep. The procedure should only take about 5-10 minutes. Then she will wake up. She will probably be a little groggy and grumpy. Make sure you bring something for her to drink in a sippy or whatever she uses. They won't let you go home until they are sure she can keep something down. She may sleep all day, or just be a little grumpy, or be her normal self! It all depends on the child and the meds they give her. Just try to relax, and everything will go well.

Keep us updated!

ptkds

Guest GoofyG
Sorry you don't have a real answer yet.

When you take dd in, they will probably put an IV in and sedate her. She will go to sleep. The procedure should only take about 5-10 minutes. Then she will wake up. She will probably be a little groggy and grumpy. Make sure you bring something for her to drink in a sippy or whatever she uses. They won't let you go home until they are sure she can keep something down. She may sleep all day, or just be a little grumpy, or be her normal self! It all depends on the child and the meds they give her. Just try to relax, and everything will go well.

Keep us updated!

ptkds

Thanks for the reply. I know I get sick when I'm sedated. I hope she will be ok. I didn't think about her sippy cup. She is drinking out if a normal cup, but I think that day I'll bring a sippy cup.

momof2sn Apprentice
Thanks for the reply. I know I get sick when I'm sedated. I hope she will be ok. I didn't think about her sippy cup. She is drinking out if a normal cup, but I think that day I'll bring a sippy cup.

I just wanted to say that both of my kids had endoscopy done on 3-28-07. They are 20 months and 5. Both of my kids did not have to have an IV and were just given a mask of ansthesia in the operating room, that only took a few seconds for them to be out. You may want to ask if you have that option. I know most of us don't want to have our babies poked anymore than they have to. I was able to be in there for both of my kids ( I have to tell you that that is hard, but they are my kids and I would want to be there with them. I would fine out too, if there is any blood work that needs to be done? Like allergy test or the antibody panel, or anything else that maybe your doctor suspects is going on, so it can be done while your child is out. The procedure took 5 min. for my daughter and about 2 min. for my son. They time to wake up was about 30 min. for each. They were given something to drink by the nurse. They were grumpy when they woke up, but they were eating breakfast about and hour later and then at chuckie cheese about another hour later and then ate some more. My daughter's biopsy was normal, but genetic blood work (another thing you may want to request while she is out, our ins. paid for it) and antibody panel were positive. My son's antibody panel was negative (they checked him just because of my daughter's symptoms)

My daughter had blunted villi, low iron, B-12, and folate. Inflammed intestines and chronic diarrhea. She has now been gluten-free for a week and the diarrhea was gone in 24 hours. Her tummy still looks big, but she is doing great!!!!!!!!!!

Just remember that you are doing this to help her get better and always remember that if something doesn't jive with you then trust your mommy instinct. You are the one with your baby every day not the doctor. If you don't get the answers you think you deserve, then push and if your still don't get results find another doc to work with.

Best of luck. Look to the future that your baby will soon be well!!!

VydorScope Proficient

Note on the "little grumpy" comment....

SOME kids wake up screaming scared, many just plain upset. Do not worry if she does, its NORMAL. She will not likely not even remember it later. Its a well known, but often forgotten to be mentioned side effect with small children and anthestia of any kind.

Some kids do not have a problem like this, I do not know the percentages, but the impression the docs gave me is MOST children have some kind of problem like this.

Nic Collaborator
Note on the "little grumpy" comment....

SOME kids wake up screaming scared, many just plain upset. Do not worry if she does, its NORMAL. She will not likely not even remember it later. Its a well known, but often forgotten to be mentioned side effect with small children and anthestia of any kind.

Some kids do not have a problem like this, I do not know the percentages, but the impression the docs gave me is MOST children have some kind of problem like this.

VydorScope is absolutely right, "little grumpy" did not cover it for my son. My youngest son woke up in this crazy frenzy and kept trying to jump off the table. It was almost comical. He is my non celiac. My celiac just had a colonoscopy last month and woke up very well and ready to play video games. He had the sedation through IV. I told the nurse about the experience I had with my other son and she asked if he had been gased, which he was. She said that when children are put out with gas they tend to wake more disoriented then with the IV.

Nicole

Guest GoofyG
VydorScope is absolutely right, "little grumpy" did not cover it for my son. My youngest son woke up in this crazy frenzy and kept trying to jump off the table. It was almost comical. He is my non celiac. My celiac just had a colonoscopy last month and woke up very well and ready to play video games. He had the sedation through IV. I told the nurse about the experience I had with my other son and she asked if he had been gased, which he was. She said that when children are put out with gas they tend to wake more disoriented then with the IV.

Nicole

Thank you all for the reassurance. I don't know how they are putting her under. I see the Dr with the baby tomorrow, I'll ask then. He was trying to not run the genetic test, due to the fact if insurance companies see it later they won't want to cover you. That makes since. I had my gahlbladder removed and I have issues with the insurance companies. I will let you all know what happens.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,205
    • Most Online (within 30 mins)
      7,748

    Sarahmegan
    Newest Member
    Sarahmegan
    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
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.