Testing In A 4Yo?

[grace83]

My 4yo son has been having ongoing issues for several months. Celiac runs in the family (my mother has celiac, a few others have symptoms, but no dx). Our PCP has been unable to give us an answer as to what is going on, I'm hoping maybe we can get some insight here.

 

He was dx'd with eczema at 2, and we've had trouble keeping it in check ever since.  Steroids did not completely eliminate the rash. We're still dealing with moderate/severe eczema over most of his body. DX was made by allergist.

 

At 10 months old he had an unknown virus that caused inflammation, high fever, and left him unable to walk for a week. Prior to that illness he was about 50% on growth charts, dropped down to around 10% after. Has been tiny ever since.  At 4 years old he is 32.5lbs and still wears a 2-3 in pants.

 

The last two months he's been having leg pain, fatigue, and chronic diarrhea.  The diarrhea is sudden and urgent, usually within an hour of eating, and a daily occurrence.

 

He had a celiac panel performed, but it wasn't a complete panel.  Are these results enough to cross celiac off the list as a possible issue? The test was performed by Quest.
 

Total IGA - 95 (33-235 range)

TTG AB IGA <1

 

TSH is normal (1.96).  Lyme test was negative. 

[BlessedMommy]

I would get him the complete panel. The Ttg test misses a number of celiacs.

 

If the doctor won't order the complete panel, I would either switch doctors or order the tests from a private lab and self pay. 

[grace83]

I would get him the complete panel. The Ttg test misses a number of celiacs.

 

If the doctor won't order the complete panel, I would either switch doctors or order the tests from a private lab and self pay. 

 

Thank you.  So it's still possible even with the normal IGA?

The test ordered was the comprehensive panel from Quest.  Is there a way to specify that they perform each test within the panel? The lab sheet merely specified doing the panel, from what I remember when reading it. Or is there a different test we need done?

 

From what I read it sounds like they didn't perform the TTG IGG and the two endomysial tests because the other two were normal?  It's all a bit confusing, honestly.

 

The test was performed about a month ago, and I was given the results over the phone originally.  Just got the printouts of all his labwork today at a followup.  He's not gluten free, and wasn't before the bloodwork either.

[grace83]

I don't know as it bears any relevance to celiac or not, but here are the results from other bloodwork we've had done.

 

Erythrocyte Sedimentation Rate - normal

Liver Function Panel - AST and ALT slightly elevated, all others normal. (AST 52, ALT 53. Normal values are 14-49 and 9-52)

Base Metabolic Panel - Creatinine low, all others normal (0.3, normal is 0.5-1.3)

 

CBC and Differential:

Mean corpuscular volume high - 86.9, normal is 73-84

Mean corpuscular hemoglobin high - 29.7, normal is 24.1-28.4

Neutrophils # low - 1.7, normal is 1.8-7.4

Neutrophils % low - 29.7, normal is 30-74

Mono % high - 9.3, normal is 4-9

EOS # high - 0.4, normal is 0-0.3

EOS % high - 7.2, normal is 0-4

 

 

So...   Some values are slightly off, but nothing alarmingly so.

[africanqueen99]

I'll leave the question re: bloodwork to some others here that are much more well-versed in the topic.

 

Have you had allergy testing done?  My oldest's little bestie has really bad eczema that flairs with dairy intake.  Once she went dairy free (really, she's dairy light b/c they only eliminate drinking cow's milk, yogurt and cheese) it went away.  I don't think she went through formal testing - it was more of a hunch by mom and she was spot on.

[nvsmom]

Welcome to the board.  

 

Yeah... the doctor only ran 1 of the 8 most common celiac tests.  He missed most of them, and the ones best for children.  If you can, get more tests run because most celiac disease tests have a sensitivity between 70-95% meaning they can miss 5-30% of all celiacs.

 

This is the full celiac panel:

• tTG IgA and tTG IgG (anti-tissue transglutiminase) - most common tests
• DGP IgA and DGP IgG (anti deaminated gliadin peptides) - a newer test that is superior in detecting celiac disease in children and in newer cases... try to get these done
• EMA IgA (anti endomysial) - tends to be positive in more advanced cases but is very specific to the disease (meaning if you get a positive it is caused by celiac disease 99+% of the time
• AGA IgA and AGA Igg (anti gliadin antibodies) - older and less reliable tests for gluten sensitivity
• total serum IgA - this control test is run because 5% of celiacs have an IgA too low for accurate celiac test results
• Endoscopic biopsy

He'll need to be eating gluten in the 8-12 weeks prior to testing so don't go gluten-free yet.

 

Take a look at this report by the World Gastroenterology Organisation (page 10-12). It discusses the tests, and as you can see, the sensitivity of the tTG IgA is only 75-95% so he could have easily been missed - only 5% of celiacs are low in IgA and are almost sure of a false negative. Open Original Shared Link

 

This article discusses symptoms in kids: Open Original Shared Link

 

This one talks about positive DGP tests when tTG is negative in kids: Open Original Shared Link

 

And another article that discusses the tTG IgG a bit more than the others: Open Original Shared Link

Best wishes

[grace83]

I'll leave the question re: bloodwork to some others here that are much more well-versed in the topic.

 

Have you had allergy testing done?  My oldest's little bestie has really bad eczema that flairs with dairy intake.  Once she went dairy free (really, she's dairy light b/c they only eliminate drinking cow's milk, yogurt and cheese) it went away.  I don't think she went through formal testing - it was more of a hunch by mom and she was spot on.

Hi there, yes we've had testing done.  He's been reactive to dairy since infancy, but all allergy testing (skin and blood tests) have come back clear of any allergens. We did food sensitivity testing this spring (ALCAT), but the pediatric panel only checked 40 foods.  He came back sensitive to a lot of things, but dairy and grains both showed as ok, so who knows...  Trialed dairy back in after getting those results, and it was a disaster, so he's once again dairy free.

 

 

 

Welcome to the board.  

 

Yeah... the doctor only ran 1 of the 8 most common celiac tests.  He missed most of them, and the ones best for children.  If you can, get more tests run because most celiac disease tests have a sensitivity between 70-95% meaning they can miss 5-30% of all celiacs.

 

This is the full celiac panel:

• tTG IgA and tTG IgG (anti-tissue transglutiminase) - most common tests
• DGP IgA and DGP IgG (anti deaminated gliadin peptides) - a newer test that is superior in detecting celiac disease in children and in newer cases... try to get these done
• EMA IgA (anti endomysial) - tends to be positive in more advanced cases but is very specific to the disease (meaning if you get a positive it is caused by celiac disease 99+% of the time
• AGA IgA and AGA Igg (anti gliadin antibodies) - older and less reliable tests for gluten sensitivity
• total serum IgA - this control test is run because 5% of celiacs have an IgA too low for accurate celiac test results
• Endoscopic biopsy

He'll need to be eating gluten in the 8-12 weeks prior to testing so don't go gluten-free yet.

 

Take a look at this report by the World Gastroenterology Organisation (page 10-12). It discusses the tests, and as you can see, the sensitivity of the tTG IgA is only 75-95% so he could have easily been missed - only 5% of celiacs are low in IgA and are almost sure of a false negative. Open Original Shared Link

 

This article discusses symptoms in kids: Open Original Shared Link

 

This one talks about positive DGP tests when tTG is negative in kids: Open Original Shared Link

 

And another article that discusses the tTG IgG a bit more than the others: Open Original Shared Link

Best wishes

Thank you!  I called the dr to see about a referral to a gastroenterologist today, for the chronic diarrhea, but didn't hear back.  I'll be calling them again tomorrow to find out what's going on. Would a gastro be who we would need anyway for the biopsy and such?  Do you think we'd have better luck pursuing this with them vs a pcp?  When the symptoms originally showed up he blamed growing pains for the leg pain, and a virus for the fatigue and diarrhea. (despite no fever).  When that turned out not to be the issue, he then said dairy was the culprit, even though he was already dairy free.  UGH!

[africanqueen99]

YES, get a pediatric gastro.  Celiac is bigger than the average Ped/family doctor can handle.

[nvsmom]

Yes, a paediatric GI would be the one you would want for an endoscopy, but a pcp should be able to order the blood tests for you, and you want those tests because the biopsy is not foolproof either - it misses up to 1 in 5 celacs. Getting the blood tests now might let him go gluten-free sooner too because although the blood tests need 8-12 weeks of gluten, the biopsy only needs 2-4 weeks, so he might be able to cut back on the gluten for a while before the procedure... If you decide to get it done.

I was told my pains were growing pains too. In hind sight, someone should have known better - growing ais in the knees? Hmph, now it's arthritis. I am glad you are advocating so well for him. Great job mom!

[grace83]

My oldest had growing pains around this age, but it was completely different.  He (the 4yo) did have some pain that could have been growing pains in his legs, but there's no way what we're still dealing with is that.  He's a very independent, headstrong, child, and he doesn't even want to walk at the grocery store anymore. As soon as we get out of the van he's asking to sit in a cart.  Not like him at all!  He's also getting tired easily - hasn't taken naps in at least a year now, but he falls asleep almost every afternoon lately.

 

We have referrals to gastro and derm, but we're waiting to see how soon we can get in.  If it will be soon, we'll likely wait and have the gastro do the bloodwork.  We switched to this PCP because he is local, but he isn't taking things seriously with the 4yo.  I'm thinking it may be time to look into switching again, though I'm not sure how that will mess with the referrals.  We're on state insurance right now, so getting it all done is a bit of a pain.  As of yesterday afternoon, they hadn't found a derm that would take us yet. I'm hoping finding a gastro dr won't be so difficult.

 

 

In the end though...  How likely is it that celiac could be at the root of his issues? Some days I just feel like I'm grasping at straws trying to figure out what is going on with him.

[StephanieL]

It's hard to say how likely it is. You said your Mother has Celiac but isn't dx so without a dx there could or couldn't be a genetic link depending on if she has it definitively or not.

 

As for all the testing, allergy testing isn't 100% accurate but a negative result is about 90% true.  People often run to allergies when there is eczema but about 80% of the time there is no link between eczema and foods.  Sensitivity testing is really not suggested as it's not accurate. It doesn't really reveal anything useful and a really detailed food log will give you much more accurate results of what could be causing issues IF it's even food related. 

 

I know that feeling of wanting answers. Hopefully getting into a GI will be useful and it can happen fast for you!!!

[grace83]

My mother was diagnosed celiac.  Took a couple times, but she finally got a dx a couple years ago.  There are a couple other family members who have symptoms that haven't been tested.  Sorry for the confusion.

 

We did see an improvement after cutting some of the foods he tested reactive to on the sensitivity testing, but it hasn't been a cure for sure.

[nvsmom]

If an immediate family member has celiac disease (you) then his chances of getting/having celiac disease are about 1 in 10 (the last stat I saw) and his chances decrease with it being a second degree relative (his Grandma) to around 1 in 30).  I'm not positive of those numbers but I think that is what I have read.

 

Celiac does run in families. If he has the symptoms, that could definitely be it.

 

The tests don't always give answers though. When I went gluten-free my kids were 4, 7, and 9. The youngest and oldest had symptoms so I had them all tested. In my area, doctors will only run the tTG Iga and then the EMA IgA if the first is positive.  They all had negative tests.  I decided to try them gluten-free anyways and within weeks my oldest and youngest improved.  Less headaches and D, better concentration, and they all had a growth spurt although my oldest has not regained his spot on the growth chart. 

 

I don't know if they had non-celiac gluten sensitivity (NCGS) or celiac disease, but I do know they had a problem with gluten. I am keeping them gluten-free without a diagnosis because I won't wait for them to get sick enough possibly diagnose.  If you don't get answers, do what you think is best. Going gluten-free sounds daunting but within a few months, it is really not that hard.

 

Best wishes.