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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,085
    • Most Online (within 30 mins)
      7,748

    M A Humphries
    Newest Member
    M A Humphries
    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

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.