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New Here And My Son's Test Results


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20 replies to this topic

#1 GSRB

 
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Posted 11 April 2013 - 01:58 PM

Hi all.

About a month ago we had our 2 year old son allergy tested through NAET testing and he showed a reaction to gluten. We went to our GP and she sent is for a blood test. His results are as follows:

Gliadin IgA 5 (0-20)
Ttg Iga/Igg >300 (0-25)

Based on that, my GP was happy to confirm he had coeliac's disease and not bother with the biopsy. The paediatrician called a week later and said he needs a biopsy done to confirm it. We had taken him off gluten for approx 5 days and had to put him back on it until we get the biopsy. The first three nights after putting him back on gluten saw him screaming all night in pain. He also broke out is a rash. The paed dismissed these and said they aren't related. i disagree.

We phoned the paed gastro on Monday and first available appointment is end of June!!! The receptionist said to pencil in the procedure for the 9th May and they will try and squeeze us in before then for the consult.

I honestly don't know if we should even bother with the biopsy. The only thing is what if it is something else? Not sure what that could be but I don't know!

My daughter tested negative to the disease but positive to the gene.

I am going to have the blood test today for serology and gene testing.

Would you go ahead with the biopsy?

Thanks!
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#2 mushroom

 
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Posted 11 April 2013 - 03:03 PM

Those results as worded are very confusing.  Was the first test the antigliadin IgA (AGA IgA) or the Deamidated Gliadin Peptide IgA (DGP IgA), if you know???  Also, the tTG has both an IgA and an IgG version, and the second result has them lumped together so it is hard to tell which it is measuring.  Regardless, it is a high score.  Did they not do the Total Serum IgA, which is the control to make sure he produces normal amounts of antibodies?

 

The pediatrician doesn't sound very helpful....  Of course it's related, duh!!!!  Did the GP refer to the pediatric GI??

 

It is entirely up to you whether or not you go ahead with the biopsy.  If your GP is prepared to diagnose without it and he gets better off gluten, you have your answer.  The endoscopy could answer the question of whether there is anything else going on and how much damage there is, but if you have to poison him and put him through torture for a couple of months to get there, well, I don't know.

 

Welcome to the board.  I hope you will get some more responses.


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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

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

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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#3 nvsmom

 
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Posted 11 April 2013 - 04:05 PM

Welcome to the board.

I have heard many parents say that the want a doctor's diagnosis on a piece of paper so they can get their child accommodations in school in the future... Will your GP diagnose your child? If so, you might be able to skip the ped altogether.

You could always do the rest of the celiac panel as confirmation of the disease if you need more. All celiac tests that are available are:
Ttg IgA and ttg IgG
EMA IgA
Total serum IgA
DGP IgA and DGP IgG
AGA IgA and AGA IgG (older test)

...I'm not sure which tests he had done either.

I would personally interpret that very high ttg test as a confirmation of celiac disease, along with his positive reaction to the gluten-free diet. The choice to do a biopsy is a very personal choice. Inmy family, no one had a biopsy but my kids are homeschooled, and our province is not that fussy when it comes to accomodating food allergies or sensitives so I did not worry about it. All of us with gluten issues, and a few without, are all now happily gluten-free.

Best wishes to you.
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#4 GSRB

 
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Posted 11 April 2013 - 04:31 PM

I'm in Australia and I think the test is a little different.
The paed has referred us to the paed gastro - our GP can't do the referral, must be a paed.
I def have concerns about what I'm doing to him right now. I am so torn as to what is the best thing to do

I just phoned the paed gastro and they are still waiting on the referral from our paed.
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#5 mushroom

 
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Posted 11 April 2013 - 05:39 PM

I just did a google search on testing in NZ since we seem to follow Aussie pretty closely, and there was nary a mention of the DGP, it's all tTG, although they do recommend the total serum IgA, and the EMA if the tTG is positive.  This is so strange because Dr. Rodney Ford from Christchurch (a world leading pediatric GI) is a great proponent of the DGP so it must be available.   But the websites don't appear to have been updated recently (2009 :( ).  Now that I'm back down here this referral routine is driving me nutz :ph34r:  :D   The hoops you have to jump to get to the inner sanctum :rolleyes:

 

Best wishes for a speedy and satisfactory (to you) outcome for your little fellow.


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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

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

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

Celiac.com - Celiac Disease Board Moderator

#6 GSRB

 
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Posted 11 April 2013 - 06:30 PM

Thank you :)

 

My GP has signed off on the paperwork for us to join the coeliac society and was the one who was more than happy to have the diagnosis as coeliac without the biopsy.

 

I forgot to mention - my dad has coeliac (diagnosed about 17 years ago). 

 

Mushroom, i feel as though I am jumping through a lot of hoops and I do wonder how much of this is necessary!!!!  Putting him under a general isn't my favourite option so trying to figure how if it is a good idea to wait or not.


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#7 mushroom

 
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Posted 11 April 2013 - 07:14 PM

I think if it were me, and I had the diagnosis in hand from my GP, I would blow it off.  That is just the off-the-top-of-my-head humble opinion.

 

Disclaimer:  I am self-diagnosed :ph34r:


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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

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

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

Celiac.com - Celiac Disease Board Moderator

#8 G.F.Medusa

 
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Posted 11 April 2013 - 07:36 PM

Another aussie here.  I think if it was me I would want to rule out anything else.  I guess with a two year old it would be hard to find out from the exact symptoms etc.  For peace of mind sake I would go ahead just to rule anything else out. Good luck, not an easy decision.


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#9 mushroom

 
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Posted 11 April 2013 - 08:07 PM

Other points to ponder:  This, if you take him gluten free, will be your last chance to assess any gluten damage in his small intestine without putting him through a potentially even more painful gluten challenge later.  On the other hand, if he does not get better without gluten, you still have the opportunity to go ahead with an endo at a later time to try to find some other reason.


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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

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

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

Celiac.com - Celiac Disease Board Moderator

#10 gfreemarketingguru

 
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Posted 11 April 2013 - 08:57 PM

medical opinion may differ from mine, but i have no love for the doctors who screwed up my 22 month olds diagnosi,, if i followed their direction...he would have died.

do not make your baby eat gluten if he is suffering. Why torture your little one with food that is,hurting him. Find a doc who will give u a diagnosis based on symptoms/bloodwork.
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#11 GSRB

 
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Posted 11 April 2013 - 11:11 PM

One pro for doing the biopsy is he is already back on gluten so I don't have to put him through it ever again.

We are getting his gene test done (pathology stuffed up and did the complete wrong gene test!!!!) - they have his blood sample there still so they can do it without is having to have another blood test.
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#12 GSRB

 
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Posted 12 April 2013 - 01:04 PM

medical opinion may differ from mine, but i have no love for the doctors who screwed up my 22 month olds diagnosi,, if i followed their direction...he would have died.
do not make your baby eat gluten if he is suffering. Why torture your little one with food that is,hurting him. Find a doc who will give u a diagnosis based on symptoms/bloodwork.

What happened with your little ones diagnosis???
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#13 GSRB

 
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Posted 17 April 2013 - 01:27 PM

We have an appointment for the endoscopy. He sees the GI on the 2nd May and then in for the endoscopy on the 9th. I saw a different GP on Tuesday as his rash is now peeling (he got the rash when going back on gluten). She believes the rash is from the gluten and that we should get the biopsy done. I feel happier after speaking with her. Now just wait for a couple of weeks
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#14 GSRB

 
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Posted 11 May 2013 - 03:39 PM

We had the endoscopy done on Thursday and the dr said he couldn't see any villi. We get the pathology results early this week. I have taken him off gluten though and he just seems so much happier already. He is eating more and despite not having a day sleep for the past two days, he has been quite bearable.

I will update with his results when we get them.
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#15 GSRB

 
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Posted 12 May 2013 - 05:50 PM

UPDATE

The gastro called this morning and it has been confirmed Bailey does have coeliac disease. I am so relieved to finally have an answer. He has been gluten free since Friday and we are noticing small changes already. He needs to have follow up blood tests in 6 months the again at 12 months then every 1-2 years after that. As long as there are positive changes with blood results and diet he won't have to undergo another endoscopy.
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