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Seeing The Specialist Monday - Advice?


balmerhon

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balmerhon Rookie

To recap quickly, my DS was seen at the Univ of Maryland for persistent diarrhea and failure to thrive. He is 3 years 3 months old and weighs 25lbs. His height is average and his BMI off the chart low.

Aside from being skinny with diarrhea, he is happy and energetic. No tummy pain, etc.

All his tests came back negative for celiac. He has not had a biopsy. They did allergy blood tests but I don't know what for as they have not provided me with a copy of any of the lab results yet. They did stool tests, too.

Meanwhile, he has lost 1/2lb since being weighed by his pediatrician on June 1 and gained 1/4 inch in height. He's had one tummy bug (vomiting, worse diarrhea, no appetite - lasted a day and a half) and one strange week-long episode of BAD diarrhea but was eating, playing and otherwise happy. :blink:

Naturally, we don't *want* anything to be wrong, but we can't help but think that something must be causing this.

We took him off gluten for 2 weeks. I know that's not a long time, but his diarrhea got worse and he ate less. :(

I think he is sensitive to acidic food, which is a problem as he loves fruit and tomato sauce based things like pizza and pasta. He is VERY picky so I'm running out of options when I eliminate anything.

From other posts and our pediatrician, I have had suggestions for other things to ask the specialist about. We see her this Monday:

fructose malabsorption

genetic testing for celiac

will he need a biopsy for celiac

eosinophilic gastroenteritis

other protein and sugar intolerances

Can you think of anything else I should ask about?

Thanks so much!


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LexsMama Newbie
To recap quickly, my DS was seen at the Univ of Maryland for persistent diarrhea and failure to thrive. He is 3 years 3 months old and weighs 25lbs. His height is average and his BMI off the chart low.

Aside from being skinny with diarrhea, he is happy and energetic. No tummy pain, etc.

All his tests came back negative for celiac. He has not had a biopsy. They did allergy blood tests but I don't know what for as they have not provided me with a copy of any of the lab results yet. They did stool tests, too.

Meanwhile, he has lost 1/2lb since being weighed by his pediatrician on June 1 and gained 1/4 inch in height. He's had one tummy bug (vomiting, worse diarrhea, no appetite - lasted a day and a half) and one strange week-long episode of BAD diarrhea but was eating, playing and otherwise happy. :blink:

Naturally, we don't *want* anything to be wrong, but we can't help but think that something must be causing this.

We took him off gluten for 2 weeks. I know that's not a long time, but his diarrhea got worse and he ate less. :(

I think he is sensitive to acidic food, which is a problem as he loves fruit and tomato sauce based things like pizza and pasta. He is VERY picky so I'm running out of options when I eliminate anything.

From other posts and our pediatrician, I have had suggestions for other things to ask the specialist about. We see her this Monday:

fructose malabsorption

genetic testing for celiac

will he need a biopsy for celiac

eosinophilic gastroenteritis

other protein and sugar intolerances

Can you think of anything else I should ask about?

Thanks so much!

not to freak you out but have the run a cystic fibrosis test? i also know Fructose issues can cause the same kind of symptoms as celiac. GL at the specialist

balmerhon Rookie
not to freak you out but have the run a cystic fibrosis test? i also know Fructose issues can cause the same kind of symptoms as celiac. GL at the specialist

It's ok. Yes, he's been tested for CF and it was negative. :)

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
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