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Diagnosing 18 Month Old

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New here and read back several years....but still not sure what to do.

 

My daughter is nearly 18 months old.  As an infant, she was diagnosed with silent reflux.  Didn't have blood in stool, but I eliminated dairy & soy and nursed her along with giving her Zantac from 10 weeks on because she had strange rashes on her body.  She was exclusively breastfed for a year but started solids at 6 months.....pretty standard, although Barley cereal seemed to give her more gas so I didn't make her eat it.  I was pretty certain she had a dairy intolerance because a slip up from me would result in eczema, but it was fairly manageable.

 

At 9 months, we went to the pediatric allergist and she was skin tested for everything -- no allergies.

 

At 1, I stopped pumping at work so she went on whole milk, per pediatrician's recommendation.  We had some issues with diarrhea starting at this time, so I switched her to Coconut & Rice milks......while she didn't have diarrhea anymore, her stool never really returned to normal.  But from here on out I was lax with dairy, and really didn't notice any horrible reactions if she had cheddar puffs or something baked.  (I never fed her yogurt or cheeses)

 

At 14 months, she developed horrific eczema all over her body and especially her face.  Eyes looked "ringed" a little - I've heard it described here as "raccoon eyes."  It mostly clears up with Steroids and I'm managing it with Protopic.....but it is chronic.

 

At 16 months she officially weaned off her night and morning feeds, and all hell broke loose.  Liquid, foul smelling, pale stool 2-3 times a day......Vomiting a la "Exorcist" -- silent, the entire contents of her stomach, mostly undigested food from 8+ hours before -- sometimes middle of the night, and at worst, every time she ate.  But she was still hungry so she would throw up and then keep eating.  She had gained less than 1/2 a lb between her 12 month and 15 month appointment.....and between 15 months and 17 months, she lost a lb.  Pediatrician told me the diarrhea was likely viral, her eczema would go away with age, and that some children were "regurgitators."  Fired him and found a new one.

 

Promptly got in to Pediatric GI.  He got us in for a barium sulfate swallow study, and it showed that she chews and swallows with no problem.  Has severe reflux originating in the large c-curve of her stomach.  Maybe something about that being "thick"?  (But I had 2 screaming kids in the room with the Dr., so who knows)  Told me her stomach capacity was only 4 ounces.  (Hard to believe -- the kid can POUND food when she wants to and easily eats double that at every meal)

 

Immediately following the swallow study, after a trip to the ER for dehydration, I put her on a dairy and gluten free diet.  I know!!!  But she was absolutely miserable and I felt like she was slipping away from me.  I had to do something.

 

Within days, her diarrhea disappeared.  She had her first solid poo since she turned 1 and I was literally dancing.  After 3 days, the vomiting stopped completely.  She's been gluten free for nearly a month, with NO MORE vomiting, improved eczema, and no diarrhea.  (Except for a few incidences where she had contaminated food)

 

Pediatric GI decided to run bloodwork to test for Celiac, and I got the results back today.  Her Eosinophils were high (EOS Absolute 0.7  <0-0.3 is normal>) but everything else looked normal.  I'm kicking myself because she had been gluten free for 2 1/2 weeks before these blood tests.  The Dr. told me to keep her gluten free.  I slipped her a French Toast stick the morning of the test, but I felt horrible doing it.

 

Antigliadin Abs, IgA    <1    Negative is 0-19

Antigliadin Abs, IgG   4      Negative is 0-19

t-Transglutaminase IgA   <2   Negative is 0-3

t-Transglutaminase IgG  4   Negative is 0-5

Endomysial Antibody IgA   Negative

 

 

I don't have a follow up with the GI for 3 more weeks.  But I'm not sure where to ask him to go at this point.  Since biopsy means she will need to be eating gluten, I don't know if I can do that to her in good conscience given the negative test results?  But I also know that if it's Eosinophilic Esophogitis, I probably need the scope.  Ugh!

 

Any advice?

 

 

 

 

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Since she's still a baby there may be a lot more leeway.  For example, our whole celiac journey started with a baby less than 18 month that had incredibly high blood numbers.  So her siblings were tested.  They were both scoped, but the baby wasn't.  Our Ped GI though the scope would be much on her little system - so she said we could talk about scoping in the future to see if damage is being repaired.

 

You might get to avoid all that based on age.

 

If her symptoms have gone away then you know that gluten is, at least, one culprit for her.  Which is really a good thing.  It is possible to get a DX based on removal of gluten and improvement of health.  BUT you're going to need a written DX for public school.  Some GIs require more to write it out - totally depends on the personality.

 

I know what you mean about her slipping away.  That was a dark time in our house before we knew what was really wrong.

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