Negative Results At 20 Months, Retesting At 4 Y/o?

[Capegin]

Hi all!

When my daughter was young up untill about two years old, she seems to have a host of G.I. problems. Nothing was ever severe or serious, but enough to call attention to it. She spit up much longer than most babies did she seem to get rashes and hives with no explanation. She didn't grow well was always very very low on the percentiles and dropped for a while, and she seem to have a lot of belly pain. Her doctor referred her to a pediatric G.I. doctor, who tested for celiac. At the time her test was very normal. They also did an endoscopy, which showed no abnormalities.

Now, my daughter is four years old, and complaining daily of belly pain. She had an x-ray, which show that she was severely constipated, and even though she's been all cleaned out and taking daily MiraLAX, she still complains of belly pain routinely. Her gas is pretty noticeable, and Very potent, and her belly is big and round. She saw her pediatrician today, who sending her back to the gastroenterologist for more celiac testing. She also wants to explore lactose intolerance.

Any thoughts on this? The pediatrician says it's highly unlikely she would've had a false-negative earlier, but she said it could've developed since then. I'd love to hear from any parents who may have had a similar situation! Thank you so much!

[nvsmom]

Your pediatrician is wrong.  Celiac can develop at any time in life from early infancy well into the senior years.  Plus, the disease needs to build up to quite a high level (of inflammation and intestinal damage) before it can be caught.  Tissue transglutaminase levels (tTG) can be low in children and slowly build over the months and years until it finally hits detectable levels - it is not the best test for detecting celiacs in kids to begin with. 

 

Those with celiac in the family (1st degree relative) are advised to get tested every 2 years for their entire life.  They cannot just test once and then cross it off the list.... Young children will test negative for most diseases (heart, cancer, diabetes) but that doesn't mean they could never develop it later in life - same thing with celiac disease... Unfortunately.

 

False negative aren't super common, but they aren't rare either.  A test's sensitivity will tell how accurate it is.  For celiac tests, that means it shows what percentage of celiacs will test positive on that test, and non are at 100%.

 

This report lists the sensitivities of the tests on page 12: Open Original Shared Link As you can see, the best bet it to test DGP and tTG in bothe IgA and IgG - it has a sensitivity of 83-100%.  One of the older tests can catch as few at 17% of all celiacs!

 

When she gets tested, get as many tests done as possible  so if she is a celiac there is a higher chance of it being detected.  Ask for:

• ttG IgA and tTG IgG - tissue transglutaminase (most common test)
• DGP IgA and DGP IgG - deaminated gliadin peptides (best test for children)
• EMA IgA - endomysial antibodies (detects more advanced disease, similar to the tTG IgA)
• total serum IgA - a control test, if it is low then all IgA based tests will be inaccurate
• AGA IgA and AGA IgG - anti-gliadin antibodies (older and less accurate tests replaced by the DGP tests)
• endoscopic biopsy - 6 or more samples taken

She needs to be eating gluten in the 2-3 months prior to the blood tests or they will be inaccurate.

 

... And the biopsy can miss up to 1 in 5 celiacs, meaning its sensitivity can be as low as 80% - intestinal damage is often patchy and doctors often do not take enough samples or sample from the right spots.

 

This article discusses the uselessness of symptoms in diagnosing celiac disease in kids: Open Original Shared Link

 

BTW, I was that kid who had stomach aches and constipation every single day, and I lived on raw veggies as a kid.  In fact I had less symptoms because I was a very tall child without skin problems.  Celiac can present without obvious symptoms.

 

If they won't test, or you still suspect celiac disease, you may need to make her gluten-free anyways... perhaps push for a non-celiac gluten sensitivity (NCGS) diagnosis so you'll have something to show her schools.  I KNOW two of my children have issues with gluten but they had normal ttG IgA tests (the only test we could get).  I made them gluten-free anyways and they have been much healthier ever since.  

 

Best wishes.

[KenzMom]

Please let me know what you find out-- I have an 18 month old daughter with nearly identical symptoms. She is going for her first (and hopefully only) endoscopy this Thursday. I have eliminated dairy from her diet, her symptoms are less severe, but she still has extreme bloating, reflux, eczema, etc....I am hoping they find SOMETHING but I am also worried I will end up in the same boat that you are in! 

[C'smum]

My daughter who is now 9 was tested 3 times up to age 4 with negative results.....she now and has been eating gluten free for 5 years. There are 5 people including myself in our family who are gluten free with different reactions and symptoms. I did not want to give her an endoscopy as it is very invasive. Since many of my family members were tested many times themselves over their lives and many negatives before a positive and because the early years in a childs development is so important i just decided to quit the nonsense and put her on gluten free. If in the future she rebels at least i know that i gave her the chance to put as much calcium in her bones as possible, unlike me who was diagnosed with osteo at age 35.

[kareng]

My daughter who is now 9 was tested 3 times up to age 4 with negative results.....she now and has been eating gluten free for 5 years. There are 5 people including myself in our family who are gluten free with different reactions and symptoms. I did not want to give her an endoscopy as it is very invasive. Since many of my family members were tested many times themselves over their lives and many negatives before a positive and because the early years in a childs development is so important i just decided to quit the nonsense and put her on gluten free. If in the future she rebels at least i know that i gave her the chance to put as much calcium in her bones as possible, unlike me who was diagnosed with osteo at age 35.

And they are working on better tests that require less days of eating gluten or maybe no gluten consumption. So maybe in 10 years, when she might rebel, she could get tested easily.