Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

High alkaline phosphatase prediagnosis

42yroldceliac
 Share

Recommended Posts

42yroldceliac Apprentice
42yroldceliac
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

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 Apprentice
42yroldceliac
Posted
  • Author

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.

  • 4 years later...
Jenn D Rookie
Jenn D
Posted

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?

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,634
    • Most Online (within 30 mins)
      7,748
    Linda whisenhunt
    Newest Member
    Linda whisenhunt
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Struggling to get into a good pattern

      By cristiana · Posted

      I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time.  Thankfully he is a fantastic GI, with  a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously!  But I needed my mind to be put at rest as my symptoms didn't seem to go away overnight as I'd hoped they would.  Initially I recall he recommended I went Dairy Free for three weeks, and he told me it would take that time to see an effect.  At that time, even lactose free milk went straight through me, so it is important, I would say, to even avoid that during a Dairy Free trial. My ongoing symptoms were bloating which did respond a bit to that trial.   However, within about 18 months there was a return to a very sore stomach, plus various aches and pains.   It turned out some gluten was sneaking in with my iron supplement (I was buying Floradix instead of Floravital), but I also think the dishwasher, the oven and eating out were contributors, too. Before my numbers normalised (from memory, about eight years!) I had several follow up appointments and a few more tests, but things gradually did get better.  Having read many accounts on this forum over the years, I don't think it is uncommon for symptoms to get a bit worse before getting better, that was certainly the case with me.  Your gut is damaged so you may well have issues digesting other food in the short term. But do try to be as scrupulously gluten free as you can possibly be as a first step, and I'd definitely try a three week Dairy Free trial.   Your villi because they are damaged are not able to create the lactase required to digest dairy at this time so you may well see some improvement if you come off dairy for a while.  Perhaps keeping a food diary of what you eat, where you eat it, whilst a bit onerous to do, will help identify foods that are causing issues.  For a while, apart from oats, I found peas, lentils and soya products hugely aggravating.  Things should calm down.
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thankfully those are normal. B12 was on the low end of the normal range when I first got diagnosed. When I last got it checked, it had come up a lot (455 last time checked).
    • Scott Adams
      mystery gluten?

      By Scott Adams · Posted

      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/  I didn't notice any gluten ingredients in Kirkland Almond non-dairy beverage, however it does contain Locust Bean Gum. Some gums may cause IBS-type issues in some people with celiac disease or gluten sensitivity:    
    • trents
      Struggling to get into a good pattern

      By trents · Posted

      Have you had B12 levels checked?
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      For the past few months, I've been taking several supplements (a multi-vitamin, an iron supplement, a vitamin C supplement, and a magnesium supplement), all of which state that they are gluten free on the label.  
×
×
  • Create New...