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Awaiting doctors response

CynH1113

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CynH1113 Newbie
CynH1113
Posted

My 3yo was just blood/stool tested for Celiacs through Kaiser. This has been my biggest worry since our friends son was diagnosed last year.

 

Symptoms that made me think Celiacs- nasty stools (so foul we had to change his clothes after- he isn't potty trained yet), massive mood swings, and the last few months complaining of a constant belly ache. He isn't failure to thrive, but since birth he has steadily fell off the chart. He is currently in the 3%, but has always been less than 5% (even off the charts), since about 1 year old. He will eat, but within a few minutes after claim his belly hurts. 

 

As the blood tests kept rolling in, it seemed less likely he had celiacs. His iron was okay (he was .1 less than the standard range), his calprotectin test came back in normal ranges, his liver came back on the high end of standard (0-40 range, and he was 40).

 

Then the ttg IgA came back <1 m/up (standard is <.90 m/ul), but his IgG came back at 3 m/ul (standard <.90 m/ul). 

I'm waiting for his doctor to call, but I am an anxious person. Are these normal? They arent soaring, but it seems like the 'standard range' is lower compared to other Googoe relsted test searches.

Am I being paranoid? I just keep thinking that I could potentionally be feeding my child foods that are going to cause him major health issues later in life. 

 

Currently we are using Zantac to clear up some possible acid issues (he would burp and cough, complain of 'nasty' in his mouth, so we are going with stomach acid issues) and restricting some of his diet. Still consuming gluten.

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cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, CynH1113 said:

My 3yo was just blood/stool tested for Celiacs through Kaiser. This has been my biggest worry since our friends son was diagnosed last year.

 

Symptoms that made me think Celiacs- nasty stools (so foul we had to change his clothes after- he isn't potty trained yet), massive mood swings, and the last few months complaining of a constant belly ache. He isn't failure to thrive, but since birth he has steadily fell off the chart. He is currently in the 3%, but has always been less than 5% (even off the charts), since about 1 year old. He will eat, but within a few minutes after claim his belly hurts. 

 

As the blood tests kept rolling in, it seemed less likely he had celiacs. His iron was okay (he was .1 less than the standard range), his calprotectin test came back in normal ranges, his liver came back on the high end of standard (0-40 range, and he was 40).

 

Then the ttg IgA came back <1 m/up (standard is <.90 m/ul), but his IgG came back at 3 m/ul (standard <.90 m/ul). 

I'm waiting for his doctor to call, but I am an anxious person. Are these normal? They arent soaring, but it seems like the 'standard range' is lower compared to other Googoe relsted test searches.

Am I being paranoid? I just keep thinking that I could potentionally be feeding my child foods that are going to cause him major health issues later in life. 

 

Currently we are using Zantac to clear up some possible acid issues (he would burp and cough, complain of 'nasty' in his mouth, so we are going with stomach acid issues) and restricting some of his diet. Still consuming gluten.

Kaiser, like so many providers,  usually only allows the TTG to be ordered as an initial screening at the PCP level.  The problem is that although the TTG is very good it does not catch all celiacs, especially small children.  The DGP and EMA tests should be ordered.  An IgA (Immunoglobulin A) deficiency test should be ordered as well.  It is used as a control test to validate any IgA celiac  tests (at this point you can not tell if the TTG IgA worked).  You did get a positive on the TTG IgG.  That means you should insist on a referral to to GI who can order these additional celiac tests.  Document and use the patient portal (email) to document in  writing your concerns.  Be nice, but firm.  All celiac testing requires a patient to be on a full gluten diet.  This is critical.  I know he is sick, but keep feeding him gluten until you see the GI and get that endoscopy.  

Hugs to you, Mom! 

CynH1113 Newbie
CynH1113
Posted
  • Author

Thank you. I'm hoping his doctor will do a GI referal. I have no idea what the test usage is, but the fact that he is above Kaisers 'standard range' has me concerned. Google says 3 is 'negative', but all the standard ranges are like..20-50 (example). And most are in a different unit count. I had to push to get the blood test (only after using probiotics for a few weeks, then documenting all poops/food for another week), so I'm *hoping* i don't have to push hard for any other testing.

cyclinglady Grand Master
cyclinglady
Posted

He has an elevated TTG IgG.  It only takes one positive on the celiac panel to move forward.  Again, document with Kaiser.  Keep researching.  

I can not say he has celiac disease, but something g is wrong.  Read this article.  Jebby (aka Jessica) is a member and is a preemie doctor.   She has celiac disease and advocates for the community:

Open Original Shared Link

Did Kaiser run an Immunoglobulin A test?  

RMJ Mentor
RMJ
Posted

Different labs use different units and standard ranges, so searching google for a standard range isn’t helpful. The range to compare to is Kaiser’s, and that gives him a positive.  I hope you can get the referral and the rest of the tests easily.

CynH1113 Newbie
CynH1113
Posted
  • Author

I do not see a panel for the immunoglobin a. He ran a series of blood tests to check liver, kidneys, inflammation, etc because he didn't know what was going on with my son. 

 

My son only has a few symptoms-

 

Constant soft stool (think soft serve that sometimes is melted), that smells so foul we have to change his clothes (he's in a diaper)

Mood swings

Tummy aches 

Barely eats

He is growing, but has always been below 4th %, and sometimes even off the charts.

He seems to have acid reflux, so we're using Zantac for that.

Always looks so tired.

 

The doctor was stumped and randomly ordered the celiacs test. I only thought of it because I researched a little when my friends kid was diagnosed, and light bulbs were going off in my head. 

 

I'm hoping the pediatrician calls asap tomorrow, so I can ask about other tests.

cyclinglady Grand Master
cyclinglady
Posted

Get On the Kaiser site and start looking for a Kaiser GI who is celiac-savvy     Even if he/she is not a Ped GI.  At least they can refer to the Ped GI later.  I am not sure a regular Ped will refer.  He might just say it was a fluke since the TTG IgA was not positive.  But I can tell you that I only test positive on the DGP IgA and never the TTG tests.  I am biopsy confirmed and have healed (confirmed via biopsy just this year).  I also was only anemic, so going by symptoms is meanless.  Everyone with Celiac Disease has different systemic issues and not just GI issues.  

Your baby is sick.  He deserves to have a proper diagnosis.  

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