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

Testing For Kids


ashleyld

Recommended Posts

ashleyld Rookie

We just got the blood results and next is the endoscopy. Anyone taken their small child before (my little is 3)? to be honest i am freaking out a little bit about her being sedated.


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



Celiac.com Sponsor (A8-M):



Fenrir Community Regular

I have not had to have this particular procedure done on my daughter (she's 6) but she's have several other's. 

 

When she was 8 months old she had to have a cranioplasty (Basically rebuild of the skull from the eye sockets up) because her plates fused too early. 

When she was about a year old she had tubes in her ears, then they came out so they went in and took out the adenoides and put a second set of tubes. 

Finally, last year she had to have a second surgery on her head. 

 

So, she's been put under 4 times, came out perfectly fine each time. 

 

There are always risks with sedation but it is a relatively low risk. Doesn't make it easier for parents though.

greenbeanie Enthusiast

My daughter had her endoscopy just after turning 4, and it went totally smoothly. The nurses were wonderful and even gave her stuffed animal a gas mask and band-aid, and tucked him under a blanket too. I'd highly recommend bringing a favorite toy! I was nervous about the anesthesia too, but it was fine. They sedated her with gas before putting the IV in, so that wasn't traumatic. They also drew blood for more lab work while she was asleep. I was able to go into the procedure room with her and hold her hand until she fell asleep, and they called me into the recovery area before she woke up again.

The only other thing I wish we'd known beforehand is that the procedure room was very noisy, with banging equipment and lots of nurses and assistants all chatting. My daughter was a bit freaked out by all the sudden noise (the prep area had been quiet), and I hadn't realized there'd be so many people in the room. There were at least five or six people there, in addition to us. But otherwise it was really an easy process, and my daughter was thrilled that she got a ride to the hospital door in a wheelchair after! I think it's a lot more stressful for the parents than for the kids.

ashleyld Rookie

My daughter had her endoscopy just after turning 4, and it went totally smoothly. The nurses were wonderful and even gave her stuffed animal a gas mask and band-aid, and tucked him under a blanket too. I'd highly recommend bringing a favorite toy! I was nervous about the anesthesia too, but it was fine. They sedated her with gas before putting the IV in, so that wasn't traumatic. They also drew blood for more lab work while she was asleep. I was able to go into the procedure room with her and hold her hand until she fell asleep, and they called me into the recovery area before she woke up again.

The only other thing I wish we'd known beforehand is that the procedure room was very noisy, with banging equipment and lots of nurses and assistants all chatting. My daughter was a bit freaked out by all the sudden noise (the prep area had been quiet), and I hadn't realized there'd be so many people in the room. There were at least five or six people there, in addition to us. But otherwise it was really an easy process, and my daughter was thrilled that she got a ride to the hospital door in a wheelchair after! I think it's a lot more stressful for the parents than for the kids.

Thank you so very much for yur reply!

frieze Community Regular

yeah, noise is one of the bigger complaints in health care.  We, HCW, sometimes just don't hear it....

africanqueen99 Contributor

My middle kid was scoped at 3.5 years.  Child Life came in to help him prepare (put stickers on gas mask, etc) then he was taken and gassed before his IV.  Because he was gassed he had so much medication in his system that it took him quite a bit to wake up.  I was promised a huge nap that day - he slept not one minute!!

 

Overall, the experience was fine, but it was so much easier for my oldest to have the same procedure since she didn't need a valium and gas - she woke quickly and was ready to roll.

JennyW Newbie

It is scary to put your little one under for the procedure, but it is worth it.  My little girl was barely 14 months when she had hers done and it all went perfectly.  And it is a relatively quick procedure so you don't have to worry for too long.  More importantly we got the confirmed positive result that gave us a real diagnosis and we were able to make a very, very sick girl so very happy again :)


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



Celiac.com Sponsor (A8-M):



ashleyld Rookie

It is scary to put your little one under for the procedure, but it is worth it.  My little girl was barely 14 months when she had hers done and it all went perfectly.  And it is a relatively quick procedure so you don't have to worry for too long.  More importantly we got the confirmed positive result that gave us a real diagnosis and we were able to make a very, very sick girl so very happy again :)

Thank you! This is what i need. I need the confirmed positive diagnosis before i throw my family for a loop. I have 4 kids who will have to deal with this as well. Im just anxious now.

Cara in Boston Enthusiast

My youngest had it done at age 6.  I was a nervous wreck - had to send my husband with him.  He actually had a great time.  The staff at Children's was wonderful.  He got to play video games and joke around with the doctors and nurses.  He doesn't remember anything after picking a "flavor" for the gas.  He was up and about within an hour and seemed to have zero side effects once he got home.  

 

I wish they could have cleaned his teeth, cut his hair, done his nails, and all that other stuff while he was under as he is rarely sitting still.

 

My older son was actually jealous that he didn't get to have one.

JennyW Newbie

Thank you! This is what i need. I need the confirmed positive diagnosis before i throw my family for a loop. I have 4 kids who will have to deal with this as well. Im just anxious now.

I hear ya.  I have 3 kids and only one with celiac....at the moment that is, since I know it could potentially trigger in the other 2 at any time.  At home, we have all the kids eat gluten free, and at school we just have my celiac one eat gluten free.  It was the easiest way to not have to prepare so many separate meals and then the other kiddos can still eat the standard food at school.

ashleyld Rookie

I hear ya.  I have 3 kids and only one with celiac....at the moment that is, since I know it could potentially trigger in the other 2 at any time.  At home, we have all the kids eat gluten free, and at school we just have my celiac one eat gluten free.  It was the easiest way to not have to prepare so many separate meals and then the other kiddos can still eat the standard food at school.

Do they buy lunch or do you prepare their lunch? I'm worried about cross contamination. (we make our lunches here)

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    2. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    3. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    4. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    5. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748

    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure 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.