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nikki-uk

My Son Has Endoscopy On Friday

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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


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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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


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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:) 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 ! :):)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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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!

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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!


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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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

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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. :)


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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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 :( !


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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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


The Queen of Hearts,

She made some tarts

All on a summer's day.

The Knave of Hearts,

He stole the tarts

And took them clean away.

Diagnosed at age 49 by biopsy 31 May 2006

Learning how to bake those tarts gluten-free!

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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!


If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.

Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)

Husband - Type 1 diabetic, Negative bloodwork

Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06

Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05

"All things happen for good for those who love God..." Romans 8:28

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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...


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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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.... :)


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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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.

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

GRRRRR!!! <_<

Booked in for next Friday......


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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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.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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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.


- Vincent -

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still praying for you guys!


If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.

Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)

Husband - Type 1 diabetic, Negative bloodwork

Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06

Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05

"All things happen for good for those who love God..." Romans 8:28

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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!!

:):)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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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.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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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


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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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 :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I wish I could help with ideas. :(

Hugs for you.

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


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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


If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.

Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)

Husband - Type 1 diabetic, Negative bloodwork

Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06

Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05

"All things happen for good for those who love God..." Romans 8:28

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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!! :):)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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