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6 Year Old Son... Confused By Test Results


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25 replies to this topic

#16 GottaSki

 
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Posted 22 January 2013 - 10:19 AM

I think your plan is perfect!

A gluten challenge does not guarantee positive pathology from endoscopic samples. The current challenge would be enough reason to remove all gluten. I do think an endoscopy is valuable - even after gluten removal -- if there is any way to move this up - I'd suggest that, but do not believe a 6 week / 4 slices of bread challenge is a good choice for your son. Perhaps down the road if you and your doctor think it is a good idea go with the 1-2 slices a day for at least six weeks - again if he gets extremely ill from the challenge I'd stop it.

Good detective work Mom -- this is the way we train our medical professionals -- one at a time :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


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#17 chickpea77

 
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Posted 11 February 2013 - 07:38 PM

So, we got the results from the repeat blood test today. His ttg iga went from a 25 (weak positive 20-30) to 37 (moderate to strong positive >30). He was still negative in his gliadin iga (he got a 4) and gliadin igg (he got a 13) {both of these are <20 negative}. His total iga was in the normal range and his EMA came back negative. Dr. said he is pretty positive that he has Celiac Disease (between my own history, his weight loss, tummy aches, constipation since upping his gluten intake, and the ttg results). We have the pediatric gastroenterologist appt on Tues., February 19th. not sure what she will say from here on in... relieved about the results (at least we finally have some sort of idea of what is going on), but broken that my 6 year old will soon be missing out on pizza days, bday cake, play dough.... Just want to get an official diagnosis :(
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#18 GottaSki

 
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Posted 12 February 2013 - 06:23 AM

So, we got the results from the repeat blood test today. His ttg iga went from a 25 (weak positive 20-30) to 37 (moderate to strong positive >30). He was still negative in his gliadin iga (he got a 4) and gliadin igg (he got a 13) {both of these are <20 negative}. His total iga was in the normal range and his EMA came back negative. Dr. said he is pretty positive that he has Celiac Disease (between my own history, his weight loss, tummy aches, constipation since upping his gluten intake, and the ttg results). We have the pediatric gastroenterologist appt on Tues., February 19th. not sure what she will say from here on in... relieved about the results (at least we finally have some sort of idea of what is going on), but broken that my 6 year old will soon be missing out on pizza days, bday cake, play dough.... Just want to get an official diagnosis :(


Completely understand your sadness. But once the transition has been made he will be feeling much better and he will live a much healthier life.

He can still have pizza, birthday cake and play dough -- let us know his favorites - we can help direct you where to purchase or replicate nearly anything -- my celiac teens have pizza regularly - we make it.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#19 chickpea77

 
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Posted 13 February 2013 - 05:25 PM

Thank you for your suport :wub: This has bee a stressful time. Honestly I am most worried about the scope because of what happened last time he was put out (he was tongue-tied and had to go for corrective surgery at 4 years old). They practically tore him off of me while he was letting out blood curdling screams staring at me and reaching for me as they took him down the hall to the OR.... And the fact that one of my best friends had a hole punched through her intestine during a colonoscopy--I know it isn't exactly the same, but still scares me! Argh... I just can't wait until all of this is over:-(
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#20 GottaSki

 
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Posted 13 February 2013 - 10:51 PM

Oh goodness...poor baby and mama...I know it is tough but do try to distract - it has been a couple years since the other procedure -- for kids that can be enough to forget somewhat.

You will likely not sleep much up until the procedure, but try. Is there something you do for yourself to relax -- exercise, hot bath, etc. Do that - even if you have to get up extra early. Set the tone, make it clear it is something the doctors need to do and he will be safe.

Hang in there!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#21 Purplemummy

 
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Posted 15 February 2013 - 06:15 AM

Hi ,

I am in the UK & my son tested positive for coeliac by blood tests - My children have Diabetes & coeliac disease is linked with that - so is part of my childrens yearly blood testing .....

The professor ( who also works at Gt Ormond Street London as well as our Hospital a mile away ) said that we did not need to have endoscopic samples. That the blood test were enough ( we tested twice to confirm ) .

My son grew 5 cm in 3 months ...

He was 7 at the time .... Yes it was very sad as he had few symptoms so it was difficult for him to understand ..... But he sure loved being taller ..

Regards
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#22 chickpea77

 
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Posted 17 February 2013 - 06:33 PM

2 days until we see the Pediatric Gastroenterologist.....I don't know why I am freaking out so badly because, regardless of what s/he says the issue is, he is going gluten free.... a weak positive ttg, then a positive ttg, a tummy ache every single time he eats and they seem to be getting more painful, plus I have celiac disease too.... There is no way I am going to keep poisoning him just to keep scoping him until enough damage shows up to diagnose him! *blush* perhaps I am getting entirely too ahead of myself.... guess we still have 2 days until we find out what the next step will be..... thanks for letting me freak out........
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#23 GottaSki

 
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Posted 17 February 2013 - 07:17 PM

2 days until we see the Pediatric Gastroenterologist.....I don't know why I am freaking out so badly because, regardless of what s/he says the issue is, he is going gluten free.... a weak positive ttg, then a positive ttg, a tummy ache every single time he eats and they seem to be getting more painful, plus I have celiac disease too.... There is no way I am going to keep poisoning him just to keep scoping him until enough damage shows up to diagnose him! *blush* perhaps I am getting entirely too ahead of myself.... guess we still have 2 days until we find out what the next step will be..... thanks for letting me freak out........


Completely understandable...those doctor visits where they want to keep watching are very stressful. You know what to do and will. If you have any lingering angst...this is the place to hash it out :)
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#24 chickpea77

 
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Posted 19 February 2013 - 06:35 PM

So we went to the Ped. GI this morning and my son is booked for his scope next Monday morning. They will take 6 biopsies. I was concerned that because his only positive test (tTG iga) was only at a 37 (20 - 30 weak positive/ >30 moderate to strong positive) that the biopsies would be negative/inconclusive but the Dr didn't seem too worried about it and told us we could start on the gluten-free diet immediately after the test! She seems to be pretty sure that Celiac is the issue here, which makes me very glad because the alternative to elCeliac when it comes to elevated ttg are much more ominous. Wish us luck! And once again, THANK YOU!!!
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#25 chickpea77

 
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Posted 27 February 2013 - 12:49 PM

So, we just got back from the scope. The Dr told us they saw some slight redness, and then in recovery the nurse was reading the chart and said that they found some scalloping.... any opinions on what that might mean?
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#26 mushroom

 
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Posted 27 February 2013 - 01:24 PM

Here is what Dr. Scott Lewey has to say:

 

Endoscopy in celiac: What are the typical findings?

The characteristic appearance of the surface of the small intestine in
celiac disease include superficial ulcerations that are commonly linear,
flattening of the folds, notching or scalloping of the folds and a
mosaic like pattern. However, the surface may appear normal and only
under microscopic examination of samples will the lining show signs of
gluten caused injury.


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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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