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Help With Results...


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5 replies to this topic

#1 Mom2_2girls

 
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Posted 07 February 2013 - 07:41 AM

Hello, My daughter is 2.5 and her big sister has Celiac (the only person we know of in our family).

She has had a couple of weird things happen.

1./ rectal prolapse several times over the last 8 months.
2./ Constipation since birth despite being breastfed exclusively for 8 months, and she still nurses.
3./ She has had ear pain, and loss of balance (were she just falls over). Going to ENT next week.

We were referred to Toronto's Sick Kids Hospital. They tested her for celiac and cystic fibrosis. Her results have come back negative (see below). I just feel like something isn't right. She has a HUGE HUGE belly but is just normal everywhere else - not skinny in the limbs. She seems really gassy too in comparison to my other daughter. She often gets dark circles.

Anyways that is just a bit of background. Wondering if anyone might have some thoughts on her results, as I know they can me inaccurate for a 2 year old.

FROM THE NURSE.

"The sweat chloride is negative (<10). Her vitamin D is low (68). She should take daily supplementation consisting of 600 IU daily. Her TTG is negative; IgG 1 and IgA 0.

I hope this helps. Her hemoglogin is ok, iron slightly low, 6, but her MCV is 84, so nothing to do right now about that. Her ESR is elevated at 21 (1-10), however, it does not indicate anything specific. It is an acute phase reactant, which means if she was getting over something, coming down with something, it would be reflective."

So what do we do going forward? Test her every year? I found it really hard to get her gluten into her everyday since we now have a gluten-free house. I wish they would do the gene test so we at least know if she is a carrier.

Thanks!
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#2 shadowicewolf

 
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Posted 07 February 2013 - 10:36 AM

Kinda hard to know without knowing the ranges for those tests (ie: 0-19 being normal, 20-29 weak positive, 30+ positive is what mine was).

She could very well be NCGI (non-celiac gluten intolerence). It mimics many of the same issues as celiac, but without the antibodies and the damage.
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#3 mushroom

 
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Posted 07 February 2013 - 12:42 PM

How much gluten was your daughter eating, and for how long? It sounds like she may not have been exposed to a lot of gluten in her life for such extreme reactions, even if her tests were negative. Did they run a total serum IgA on her? And if so, what were the results? The low D and iron, and the elevated inflammation (ESR) are telling.
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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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#4 Mom2_2girls

 
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Posted 07 February 2013 - 06:51 PM

That was my feeling Mushroom. She has been living in a gluten-free house for 5 months now, but I did give her one serving of gluten a day, plus she had gluten when we went out. I still worried it was not enough though although the GI doctor said it just had to be a serving the size of her palm.

My older daugther was originally tested by a naturopath at 2.5 so perhaps I will try that and see what those tests say (different than what they do at the hospital). I will make sure to really gluten her up for 6 weeks?!
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#5 mushroom

 
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Posted 07 February 2013 - 07:03 PM

With the potential gluten ataxia (balance problems, falling down) it may be that the celiac is manifesting more neurologically, too, if the ENT gives her the all-clear. Has she been having gluten all along or just for a pre-testing period since you say your are a gluten-light house. Did you ask the nurse about the total serum IgA? It would be a good idea to get a copy of her test results and keep your own file (I always recommend this); that way if you have to go to different doctors you always have her records with you.

Yes, I think a good six-week glutening, while it will be tough on her, will be long enough, and it doesn't have to be every meal.
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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 GottaSki

 
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Posted 07 February 2013 - 08:30 PM

I agree with Mushroom completely. Total Serum IgA is very important.

Symptoms along with first degree family and low nutrients is very telling.

No need to overdo during challenge - just be consistant.

Have you and Dad been tested?

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 :)





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