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

My Son Has Endoscopy On Friday

nikki-uk

Recommended Posts

nikki-uk Enthusiast
nikki-uk
Posted

Those of you that have seen my posts before will know that my 13yr old son had a 'high positive 'result on his tTg blood test,and we've been waiting for an appt for biopsy.

I've just had a GI ring me( who works in a hospital the other side of London) to say that he's had a cancellation and can do my son's biopsies on Fri morning.(It seems my son's paediatrician 'called in' a favour to get it done so quick)

Although I'm relieved as this means I can get him on the diet after Friday-I'm a little nervous :blink: as he's had lot's of heart surgeries in the past and still has a leaky valve.

Do they just heavily sedate kids or use a general anaesethic?? :unsure:

Anyway,I'm sure it'll go okay-but you know we Mums like to worry!!

Fingers crossed he will have a positive result on his biopsy-keep you posted!! :D

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

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

Hi Nikki!

I think it's wonderful that they are getting him in sooner instead of having to wait. I just had the biopsy last month, and here in Canada, they don't use general, they just sedate you, you don't go right under, you are still aware, you just don't feel anything (personally, what a wonderful high it is for me!!! LOL!)

I am with you in the mums always worry. With four children, boy, do I hear ya!

Try not to worry, it will be over before you know it and you can start him on the road to recovery that much quicker!

Sending hugs over the water!

Karen

nikki-uk Enthusiast
nikki-uk
Posted
  • Author

:) Thanks for the hugs across the Atlantic Karen!!!!

I just want it done and dusted-diagnosis given and get him on the diet :D

I know it's a relatively simple procedure (and what with him having had heart surgery twice,this should be a walk in the park in comparison!)

But,-it's all relative.I'm a Mum,and it's my job to worry!!

Hope you and your crew are well ! :):)

C&M Newbie
C&M
Posted

My three year old had an endoscopy almost 2 months ago and they totally put her out. Her father and I were in the room when she went under sedation and were there when she woke up. She didn't remember or feel a thing.

Good luck Friday!

jayhawkmom Enthusiast
jayhawkmom
Posted

My daughter was 4 when she had her endoscope, and she was completely under. She was *mean* waking up from anethesia, but fell back asleep - and then once she really woke up, she was great, no problems at all.

It's horribly nervewracking to have your child go through any medical procedure. But, I do think it's worse for the mom who's sitting in the waiting room.

My very best wishes to you!

jcc Rookie
jcc
Posted

In the US, I was told by the GI that the recommendations are to heavily sedate adults, but use general anesthesia for children. My daughter, at age 15, was under a general. The anesthesiologists will give special consideration for your son, I'm sure. They are pretty cautious.

We were sent home the first time because my daughter's oxygen level was low so he wouldn't put her under a general because it can further compromise lung function. He said he could have done it under sedation, but preferred to just wait for another day. She had just come down with a cold that morning, and of course, and her asthma was flaring a bit.

When she finally had it done a week later, she was a little nervous about it before hand, but once she was out...everything went perfectly from then on.

Good luck! Hopefully you and he will sail right through it.

Cara

AndreaB Contributor
AndreaB
Posted

Thoughts and prayers will be with you both on Friday. When is Friday in the states? I think you guys are about 9 hours ahead of us on the west coast. It's heading toward 8:30 pm over here.

It is great that they can get him in so early. Thanks to your ped....sooner to start the diet and for him to feel better. :)

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

Celiac.com Sponsor (A8-M):


nikki-uk Enthusiast
nikki-uk
Posted
  • Author

AARGH!! It's been cancelled until next Friday (29th Sept)-they just phoned me <_<

Thanks for all your well wishes!-Hold on to them until next week.

I'll have to sweat it for another week :( !

queenofhearts Explorer
queenofhearts
Posted

Sorry you have to wait so long-- I fully sympathize with the raging mommy anxiety, & everything is always so much worse in the imagination than it turns out in reality!

Hang in there,

Leah

TCA Contributor
TCA
Posted

Nikki,

I hope things go well for him next friday. When Megan had hers done they got the cardiac anesthesiologist for her, just to be sure everything was covered with her heart. I'll be praying for both of you! Megan came through splendidly and had no problems and that was even before her last surgery to finalize the repair on her heart. Keep us posted!

jerseyangel Proficient
jerseyangel
Posted

Nikki--

I'll be sending my good thoughts your way and saying a prayer for your son :)

It's so much harder when it one of our kids, isn't it? I always wished it could be me instead of them going through these kinds of things.

Sorry you have to wait the extra week--that's always hard...

DingoGirl Enthusiast
DingoGirl
Posted

Oh not another week! That is heinous and don't you hate it when they do that! I hope you can somehow relax all week.... :)

beaglemania Rookie
beaglemania
Posted

Its not that bad, I'm 14, had my endoscopy almost a year ago. My mom freaked out but it was fine. You have to take nasty tasting stuff, and do they prick u with a needle or no?? I forget. Anyways once they give you the stuff I just fell right asleep and then afterwards I woke up and I felt groggy, but other than that I was fine. I think I might've woken up a bit during the procedure. I remember someone holding me and telling me to lie still. And I think I remember something in my throat but I'm not sure. I fell back asleep then.

nikki-uk Enthusiast
nikki-uk
Posted
  • Author

Just to update-it's been cancelled-AGAIN!!!!!

GRRRRR!!! <_<

Booked in for next Friday......

AndreaB Contributor
AndreaB
Posted

Can't you tell them you've been cancelled twice and set up a definate appointment?

My husband surgery was postponed a week and since he had to take a day off without pay he asked that they book him for the next week. He was first one in, so they couldn't bump him.

VydorScope Proficient
VydorScope
Posted

Nikki,

First of, I have personaly had the endoscopy TWICE, and my son had it at 20 months (if I could go back and do it over I would have skipped it knowing what I know now about celiac disease and the worthelessness of the bisopy...)

With a decent doc/staff its not normaly a big deal. Our son showed absolutly no indication of any side effects or discomfort once the drugs wore off. I had a mild sore throat after my first one, but not after my second one.

TCA Contributor
TCA
Posted

still praying for you guys!

  • 2 weeks later...
nikki-uk Enthusiast
nikki-uk
Posted
  • Author

Thanks to everyone for your support!!

My son had his endoscopy on Friday at last with no problems.

He was put under a general anaesthetic-so he doesn't recall any of it!

He woke up a little confused but ravenously hungry!

They took around 18 samples for biopsy and some more bloods to do another coeliac panel and we get the results next week.

The staff were absolutely fantastic with him (and me!) but I'm glad it's done!!

:):)

AndreaB Contributor
AndreaB
Posted

We'll be waiting for the results along with you Nikki. :)

Ursa Major Collaborator
Ursa Major
Posted

Oh, finally! I am glad you're both okay. And 18 biopsies, that's great, hopefully they didn't miss all the bad spots then (if there are any). It sounds like they knew what they were doing, anyway.

nikki-uk Enthusiast
nikki-uk
Posted
  • Author

Finally the results are in and.....(drum roll).....

They were positive!!

So,it's official.

Docs said the biopsies showed damage consistent with coeliac disease.

Feeling slightly 'down' actually. <_<

I know that's crazy, as it's been caught fairly early, and it's within our power to right everything with diet, but....,he's doesn't really understand why he can't eat his favourite things anymore, and well it's just another thing that sets him apart from other kids. :(

I have told him that he has to eat what Daddy eats otherwise he will get a tummy ache but as he has Downs Syndrome it's *hard*.

One of his real pleasures in life is eating!!!

Well, must snap out of it!- I'm sure I'll be feeling more positive tomorrow!!

Thanks to all for your kind words and support. x

jerseyangel Proficient
jerseyangel
Posted

I'm sorry, Nikki :( It just dosen't seem fair that Alan will have this to deal with too. At least he has his dad to partner with.

I think you're an absolutely amazing mom :)

AndreaB Contributor
AndreaB
Posted

I wish I could help with ideas. :(

Hugs for you.

Ditto what Patti said.....you're great!

TCA Contributor
TCA
Posted

I'm sorry for the positive diagnosis, but glad that you know now. I will be praying for you!

nikki-uk Enthusiast
nikki-uk
Posted
  • Author
I think you're an absolutely amazing mom :)

Ditto what Patti said.....you're great!

I'm sorry for the positive diagnosis, but glad that you know now. I will be praying for you!

Thankyou all!! :):)

Archived

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

Go to topic listing

  • 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. Russ H
      - Russ H replied to Surinder's topic in Related Issues & Disorders
      1

      Gluten intolerance and coughing fitsfits

      Hello Surinder, and welcome to the forum. Thank you for sharing your experience. Have you been diagnosed with coeliac disease? Although less common, there are reports of coeliac disease being associated with pulmonary conditions causing symptoms such as a chronic cough. Case Report: A case of cough, lymphocytic bronchoalveolitis...
    2. Surinder
      - Surinder posted a topic in Related Issues & Disorders
      1

      Gluten intolerance and coughing fitsfits

      I read with interest someone's article regarding gluten and coughing and how drs could not diagnose the cause. I am a prediabetic and in the process of cutting down on carbs I slowly eliminated bread and added more complex carbs and found that my cough had gone and I was feeling generally calmer and happier. This was an accidental finding and I...
    3. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      2

      Help understand results

      tldr: "we tested your daughter with one test and that result does not suggest Celiac. However, the test we used should not be used as the initial screening test for celiac (like it appears they did) because it misses a lot of cases ("low specificity"). No further testing is scheduled or pending" We eat "gluten" and our bodies digest part of it into ...
    4. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      41

      My journey is it gluten or fiber?

      So I have the Benfo, Thiamax, and Neuromag along with my Super B Complex. When I read the labels it says take 3/take 4 times a day but one pill a day is ok correct since its 4 pills at breakfast.
    5. cristiana
      - cristiana replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      2

      Celiac support is hard to find

      Hi @tiffanygosci Well done for reaching out, fantastic you have found this forum. It sounds like you are managing the diet well, it can be overwhelming at first, but it will get easier. I wonder if you have seen the short film 'Glutened'? - someone shared it on this forum a few months ago and it reminded me of how isolating it can be,...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,974
    • Most Online (within 30 mins)
      7,748
    2972
    Newest Member
    2972
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Russ H
      Gluten intolerance and coughing fitsfits

      By Russ H · Posted

      Hello Surinder, and welcome to the forum. Thank you for sharing your experience. Have you been diagnosed with coeliac disease? Although less common, there are reports of coeliac disease being associated with pulmonary conditions causing symptoms such as a chronic cough.     Case Report: A case of cough, lymphocytic bronchoalveolitis and coeliac disease with improvement following a gluten free diet
    • Surinder
      Gluten intolerance and coughing fitsfits

      By Surinder · Posted

      I read with interest someone's article regarding gluten and coughing and how drs could not diagnose the cause. I am a prediabetic and in the process of cutting down on carbs I slowly eliminated bread and added more complex carbs and found that my cough had gone and I was feeling generally calmer and happier. This was an accidental finding and I relate to your story. I have shared my story for you. Kind regards, Surinder
    • Aretaeus Cappadocia
      Help understand results

      By Aretaeus Cappadocia · Posted

      tldr: "we tested your daughter with one test and that result does not suggest Celiac. However, the test we used should not be used as the initial screening test for celiac (like it appears they did) because it misses a lot of cases ("low specificity"). No further testing is scheduled or pending" We eat "gluten" and our bodies digest part of it into "deamidated gliadin" (GLIADIN (DEAMID)). The gliadin is what actually triggers the Celiac disease pathway. The celiac's immune system sees gliadin much like an invading virus, and makes antibodies (AB) against gliadin. Each antibody has the ability to recognize a specific target (anti-gliadin antibodies recognize gliadin). When antibodies find their specific target, they stick to it and call in other parts of the immune system to help eliminate the target. This process also causes the immune system to make a lot more of that antibody, and your test was designed to measure if there was an elevated level of type A (IgA) anti-gliadin antibodies. Antibodies, which are also called immunoglobulins (Ig), come in different types (e.g. class "A" or "G"). Think of antibodies as different kinds of cars, and antibody types as different colors of car. An "A" type (color) is called IgA, and a G type is called IgG. IgA's are more relevant to Celiac disease than are the IgG's or other types. Unfortunately, some people don't make very much of the IgA class (like not making aqua-colored cars, even though they make the same cars in green) and that's a common reason for the gliadin-Ab-IgA test to fail to identify celiac. As Trents wrote, they should have given her a "total IgA" test and probably tested her for the anti-tTG IgA antibody.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      So I have the Benfo, Thiamax, and Neuromag along with my Super B Complex. When I read the labels it says take 3/take 4 times a day but one pill a day is ok correct since its 4 pills at breakfast.
    • cristiana
      Celiac support is hard to find

      By cristiana · Posted

      Hi @tiffanygosci Well done for reaching out,  fantastic you have found this forum. It sounds like you are managing the diet well, it can be overwhelming at first, but it will get easier.     I wonder if you have seen the short film 'Glutened'? - someone shared it on this forum a few months ago and it reminded me of how isolating it can be, particularly at first, when you don't know anyone with celiac disease.  *see link for film below. I realise now how blessed I was that when I was diagnosed two friends were also diagnosed around the same time, as we shared a lot of tips and recipes at the start.   Since then the number of people I know diagnosed with coeliac disease has grown and grown, there seems to be a much greater awareness of it among healthcare professionals and the public, at least this side of the Atlantic (I'm British).  I think in time you may find this, too. That said, those two coeliac buddies were 'straightforward' cases who seemed to recover very quickly when on a gluten-free diet - I struggled for some time.  So I found that I spent much more time discussing things with this online coeliac family. If you have any more questions, we're here for you.  I hope your event on 15th goes well.  Sounds like a good start!  I like you am not keen on Facebook, but perhaps setting up an account short-term might help? * https://vimeo.com/486284734 Cristiana     
×
×
  • 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.