Need help understanding blood tests

[Notso]

Hello!  I've been following the board forever, but haven't posted in years.  This community has been so helpful navigating Celiac since my youngest was diagnosed in 2011.  So, I don't get too wordy, I'll post my question first followed by our history in case that is helpful.

 

My oldest child (9) just got the results from her celiac panel:

tTg Ab igG - Normal

Gliadin Peptide Ab, IgA - Normal

Gliadin Peptide Ab, IgG - Normal

Endomysial Screen - Negative

igA - High (no given range)

tTG Ab, IgA - Antibody detected 5U/ML (range <4 no antibody)

 

I just have the raw scores, her pediatrician hasn't given me her thoughts yet.  Should I be concerned that this is celiac even though most portions of the test are normal?

 

Here is our history:  Lots of autoimmune in my family.  My dad and his sister had very late onset type 1 diabetes develop in their 40's.  I have hashimotos.  Celiac didn't come on the scene until my first daughter's one-year old well visit.  She had lost weight down to 10lbs.  The only food she could keep down was breast milk, mucous stools, distended stomach, etc.  She was diagnosed based on dietary response (she gained 5lbs in two weeks) and genetic testing as the blood test is unreliable at that age and they didn't know if she would survive the general anesthesia needed for the scope at her size/health.  My oldest was tested when my youngest was diagnosed, but the blood test was fully negative at the time.  I asked for her to be tested again because she is losing weight, and has chronic constipation.  She has no symptoms as severe or text book as my youngest, but we are mostly gluten-free at home and she really only has gluten a few times a week at school, restaurants, or playdates.

 

Thoughts?  Thanks for letting me get all of this out.  I am really worried for her as she will be devastated.    

[Gemini]

  On 5/18/2016 at 4:03 PM, Notso said:

Hello!  I've been following the board forever, but haven't posted in years.  This community has been so helpful navigating Celiac since my youngest was diagnosed in 2011.  So, I don't get too wordy, I'll post my question first followed by our history in case that is helpful.

 

My oldest child (9) just got the results from her celiac panel:

tTg Ab igG - Normal

Gliadin Peptide Ab, IgA - Normal

Gliadin Peptide Ab, IgG - Normal

Endomysial Screen - Negative

igA - High (no given range)

tTG Ab, IgA - Antibody detected 5U/ML (range <4 no antibody)

 

I just have the raw scores, her pediatrician hasn't given me her thoughts yet.  Should I be concerned that this is celiac even though most portions of the test are normal?

 

Here is our history:  Lots of autoimmune in my family.  My dad and his sister had very late onset type 1 diabetes develop in their 40's.  I have hashimotos.  Celiac didn't come on the scene until my first daughter's one-year old well visit.  She had lost weight down to 10lbs.  The only food she could keep down was breast milk, mucous stools, distended stomach, etc.  She was diagnosed based on dietary response (she gained 5lbs in two weeks) and genetic testing as the blood test is unreliable at that age and they didn't know if she would survive the general anesthesia needed for the scope at her size/health.  My oldest was tested when my youngest was diagnosed, but the blood test was fully negative at the time.  I asked for her to be tested again because she is losing weight, and has chronic constipation.  She has no symptoms as severe or text book as my youngest, but we are mostly gluten-free at home and she really only has gluten a few times a week at school, restaurants, or playdates.

 

Thoughts?  Thanks for letting me get all of this out.  I am really worried for her as she will be devastated.    

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With your family history of diseases closely associated with Celiac and your second daughters diagnosis, even though your other daughter has only a mildly elevated tTg, it warrants further testing.  She's losing weight too. I am sure if she were eating a full on gluten filled diet, her blood work would be more elevated.  She really needs to find out if she also has Celiac, as you know.  She may not like it but it is highly likely, from what you have stated, that she does.  Like everyone else, she will adapt and live a fully functional life.  If she is already eating mostly gluten free, then the transition should not be too hard for her.  But find out first because it's important!  Good luck!

[Notso]

  On 5/18/2016 at 6:45 PM, Gemini said:

With your family history of diseases closely associated with Celiac and your second daughters diagnosis, even though your other daughter has only a mildly elevated tTg, it warrants further testing.  She's losing weight too. I am sure if she were eating a full on gluten filled diet, her blood work would be more elevated.  She really needs to find out if she also has Celiac, as you know.  She may not like it but it is highly likely, from what you have stated, that she does.  Like everyone else, she will adapt and live a fully functional life.  If she is already eating mostly gluten free, then the transition should not be too hard for her.  But find out first because it's important!  Good luck!

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Would you request a biopsy at this point?  Do we need to up her gluten for that?  I agree with you that she will learn to cope if she has Celiac.  She is 9 so this is about the worst thing she can imagine.  

 

Thanks so much for the response!

[Gemini]

  On 5/18/2016 at 6:50 PM, Notso said:

Would you request a biopsy at this point?  Do we need to up her gluten for that?  I agree with you that she will learn to cope if she has Celiac.  She is 9 so this is about the worst thing she can imagine.  

 

Thanks so much for the response!

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if it were my child, I would feed her gluten whenever possible until she has further testing.  The problem with going for a biopsy while gluten lite is that the damage may be very, very patchy and they will miss it and tell you she is fine....but they will keep an eye on it.  That is not good enough.  She has a slightly elevated tTg while eating gluten lite and weight loss.  They need to do the testing correctly. Maybe feed her a lot of gluten for a month and then go for another blood test?  If she has Celiac and starts upping her gluten dramatically, it's bound to raise her tTg even higher.  If her symptoms worsen, then that certainly would add to the diagnostic criteria.

I understand her reaction to this.  Everything is huge when you are 9.    But it really is getting easier and easier, compared to 11 years ago when I was diagnosed. It is just so important to know, one way or the other.

[Sugarcube]

I think it would be helpful to do the celiac genetic test next. It can help rule out celiac.

[cyclinglady]

I agree with Gemini.  Get her retested (blood test) but make sure she's eating gluten daily for a month or longer.  

My daughter tested negative for celiac disease.  Because she had been gluten light (both hubby and I are gluten free and our house is gluten-free too), I made sure she ate gluten every day for three months.  I bought pre-packaged stuff for her school lunches or made her eat a donut or cookie out on the porch and then had her wash her gluteny hands before coming back in.  I stopped for gluten foods when we were running errands.  "Wanna burrito or sandwich?"

I'm going to do use this same strategy before testing her again.  

I did not bother with the genetic testing, because odds are she has the genes.  Autoimmune disorders on both sides of our families.  During each doctor visit, her thyroid, blood glucose and iron levels are checked.  All normal so far.  She can pop for the genetic testing when's she's an adult.  Right now, with my diagnosis, our insurance is willing to pay every two to three years.