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Would Testing Be Worthwhile?


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7 replies to this topic

#1 Ollie's Mom

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Posted 10 January 2013 - 06:10 AM

Although I suspect I already know the answer, I'm not really sure why I'm asking. But I was hoping someone might have some advice I hadn't thought of.

My son is almost 2.5 yo. After the introduction of solids at 6 months, he started to slide down the weight percentilrs (90+ down to 50 over a 3 month period). His bm's were very loose, very frequent, and a nasty pale green with a sandy texture. I am self diagnosed (after years of suffering), so my immediate thought was gluten. Eliminated it from his diet and things improved, his weight went up, and he got down to 2-3 bm's per day down from 8+ at its worst.

His poo was never very solid, and since he was in daycare (although on a gluten-free diet there) we had assumed he was just getting cc somehow (highly likely) but he was happy and growing etc.

He moved to a new room in the daycare centre and his pools got worse. We assumed the staff wasn't paying as close attention to his diet as the previous teachers. I at this time also suspected that he may have an issue with dairy (dark circles under his eyes, lethargy after drinking milk, then vomiting sometimes after having milk). I had him home for 1.5 weeks over Christmas, and kept him strictly gluten-free and dairy free. After about 1 week he had the most normal pools of his entire life.

Two days after going back to daycare, his poos became horrendous (worse than before). If he eats an orange at noob, he's pooping the orange out by4 pm, totally undigested. To me he llooks like he has a headache. The dark circles are back.

I'm thinking of asking my doctor to run a celiac panel blood test on him, but he has been on a gluten light diet since he was 9 months old. But minor symptoms seem to have persisted all this time.

Do you think the testing is worthwhile or a waste of $$? I am in Ontario, and for whatever reason our government health plan won't cover celiac testing.

TIA
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#2 Ollie's Mom

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Posted 10 January 2013 - 06:47 AM

I also wanted to add that we suspect he's on a "gluten light" diet. The daycare's caterer has a gluten-free menu, but kids being kids, they grab food from each other and off the floor. Plus we've caught teachers who were just filling in in his class offering him crackers in the afternoon because they weren't aware of his dietary restrictions (yes, I was annoyed beyond belief, and it hasn't happened recently).
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#3 StephanieL

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Posted 10 January 2013 - 10:13 AM

I would think you would need him on a full gluten diet to get proper results. The thing is, if he'll be in traditional school and you need/expect accommodations for that you will need a confirmed dx. Also, if he vomits when drinking milk, you should really consider seeing an allergist for dairy testing. Allergic reactions can start "small" with vomiting but can progress at any time to an anaphylactic emergency for which he would need epi pens for.
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#4 LFitts

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Posted 10 January 2013 - 12:11 PM

That sounds soo familiar. My recently diagnosed 9 year old had those exact symptoms as a baby - green stools and all. She has been sickly off and on eating a high gluten diet her whole life. When we finally realized that IBS medicines weren't helping, reflux medicines weren't helping, and her level of discomfort / frequency of painful / horrible stomach cramps was increasing, we took her to a pediatric GI doc. After endoscopy - upper and lower - with about 30 biopsies of all of the lesions / ulcers, they were fairly certain that she had celiac. This was confirmed with the antibody test. My insurance co would not pay for the antibody tests without have the endoscopy first, even though the newest Journal of New England Medicine (Dec.2012) has an article recommending the antibody test as a first step.

I wish we had known and had a diagnosis when she was younger. I think it's hard to take the gluten-free option seriously and make a real commitment to it without a diagnosis. I do think it's worth the trouble and cost to get the diagnosis, just so you will know if that's the cause or they may find something different.
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9 year old daughter diagnosed celiac November / December 2012
Postive endoscopy / biopsy, positive antibody test, positive genetic test

She's been gluten free since diagnosis. I've been gluten free with her since Jan 2013.


#5 tarnalberry

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Posted 10 January 2013 - 01:03 PM

Yeah, with kids, because you need cooperation from other institutions, I think that going for testing and a formal diagnosis is worthwhile. I would take him as gluten free as you can after that, of course.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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Bellevue, WA

#6 Ollie's Mom

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Posted 10 January 2013 - 09:49 PM

The problem I'm having is that I know gluten does not agree with him, and I don't want to put him back on it. But I know that testing will almost definitely come back negative even if he has celiac because he is not consuming much gluten.

We scared the ladies in the daycare (explained that he would not absorb nutrients, it would stunt his growth, lead to a higher risk for developing cancer, etc) at the beginning of this week, and to my surprise his poop looked fairly normal tonight. So maybe all I needed to do was really reinforce the dietary requirements with them.

Argh, it's an awful feeling. I know what makes him sick, but to get a diagnosis I'd have to put him on what makes him sick. I really don't want to do that to him.
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#7 GottaSki

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Posted 10 January 2013 - 10:16 PM

In my opinion - testing is always worth while - of course it is most accurate if consuming gluten and that should happen if at all possible.

Again IMO get all the blood data you can at every draw with young children especially - all nutrients and full celiac panel along with CBC & CMP - for us it is all about distraction - the first stick is the worst - read, sing, turn cart wheels if needed to distract little ones.
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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 :)


#8 Mom2_2girls

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Posted 15 January 2013 - 10:32 AM

In my opinion - testing is always worth while - of course it is most accurate if consuming gluten and that should happen if at all possible.

Again IMO get all the blood data you can at every draw with young children especially - all nutrients and full celiac panel along with CBC & CMP - for us it is all about distraction - the first stick is the worst - read, sing, turn cart wheels if needed to distract little ones.


Not sure if you are close to Toronto but could you get your doctor to refer you to the GI clinic at Sick Kids? I wish we had done that first... the wait list was pretty long. It might be worth it to try and get in there.

If you do the full panel that is great but if you are going to choose between TTG and EMA go with TTG (if you think you will end up at Sick Kids). My daughter had to be retested because even though her EMA was strongly positive, at Sick Kids they use TTG. FYI testing is free at Sick Kids but they don't do a full panel.

Another frustrating thing... my daughter got her blood test in May but it wasn't until October that she had her endoscopy and we could go gluten-free.

My other daughter is currently going to get tested and I have been giving her one small serving of gluten a day. The size of HER palm is enough apparently.. according to Sick Kids.

I am SO glad that we went through all the emotional and )for my daughter) physical pain to get a proper diagnosis. It was a hard 6 months but was worth it. Now we will have follow ups at Sick Kids and had access to their dietician.

Good luck!
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