High alkaline phosphatase prediagnosis

[42yroldceliac]

I just recently found out I have Celiac Disease, and my daughter has been having vomiting and stomach pain for the past year.  The doctor did not think anything of it at her last well check.  However, I asked to have her screened for Celiac after my bloodwork came back positive for Celiac.  They tested her TTG IgA and DGP IgA, which both came back negative.  Her serum IgA was normal, so they sent us on our merry way thinking she did not have Celiac Disease and she must just have a “nervous stomach”.  On separate blood test taken at the same time, her lymphocytes were high and alkaline phosphatase was high.  I read that alkaline phosphatase can be elevated due to gut inflammation.  Has anyone else had high alkaline phosphatase prediagnosis?  I know they attribute this to malnutrition and possibly liver involvement, but given it’s vital role in the gut of downregulating inflammation, I’m surprised that’s never a considered hypothesis.

[cyclinglady]

How old is your daughter?  Small children (under 3) take a while to develop antibodies.  It is a shame they did not run the entire celiac panel.  I am not IgA deficient, yet the only positive for me was the DG IgA.  Negative on the common TTG IgA and EMA IgA even on follow-up Testing many times.  Know that some celiacs are seronegative (about 10% if I recall correctly).  So, I would not rule out celiac disease yet.

I thought for sure my teen niece had celiac disease.  She had the complete celiac panel twice.  She had an endoscopy and colonoscopy and both were negative.  Her fourth GI ordered a pill camera and they found severe damage out of the reach of both scopes.  She has Crohn’s.  ?. It may not be celiac disease but something else.  

[42yroldceliac]

I’m so sorry about your niece.  It’s heart-breaking when this happens to a child.  My daughter is 12.  I know there is something going on.  She has thrown up 3 separate times at school and several times at home.  She is always nauseous.  This has been going on for a year now.   She is super thin and pale and just doesn’t look well.  I don’t seem to be getting any help from her doctors.  We are just going to try gluten free and dairy free diet and see if there is any improvement.  I’m just really curious about her high alkaline phosphatase.  My other daughter’s alkaline phosphatase was high too.

[Jenn D]

My 12 year old son was diagnosed April 2023. His ALP was elevated to 489. (Normal range is 150-409). Dr. was not concerned. 6 months later his follow up bloodwork showed decrease in celiac numbers and his ALP decreased to 467. I told her I was concerned but she wasn't. Today his bloodwork came back and his ALP decreased to 441 which is still high. I expressed my concerns again and she is finally sending me for additional testing. I am terrified that it could possibly be something with his bones or liver. All she said was don't worry. How did your child's levels look after follow ups?