Celiac Test Results...now I Have Questions

[mommy2krj]

Ok, so my youngest (6 year old) has already tested positive through blood work and we go for his endoscopy on the 19th. I don't have copies of his blood work results as they are with the docs in Madison and I didn't think to get them when we were down there last time.

 

Now. I have had everyone in the house go in for blood work. Myself, my husband, 18 year old daughter and 15 year old son. I went in today to the same lab tech that took my older kids' blood on Wednesday...2 days ago. I asked her when I could expect the results from the blood work and she told me by Wednesday for mine (granted I had a little more done than the kids as they are also running lipids and stuff for my thyroid) and that the kids' would probably be back on Monday as they had to be sent out to Marshfield.

Well...we went also for little guy's pre op appointment so I spoke with the pediatrician. At the end of the appointment he lets me know that the older two's labs came back and they are both negative. Huh. That was pretty quick considering what I had just been told and the fact that my husband's hasn't come back yet and he did his a week ago.

 

Now...here are my questions....I'll type out the results exactly as they appear on the page. It doesn't even seem like they ran the right tests....aside from the TTG...though maybe it's just that they didn't run a complete test? I don't know...I don't even know what I'm looking at...so here it is:

 

For my 15 year old son:

Tests: (1) Immunoglobulin A # (2458-8)

OBSERVATION                          VALUE                              EXPECTED

IGA                                              147 mg/dL                         66-436

 

Tests: (2) TIS.TRANSGLUTAMINASE  IGA AB (L.TGAA)

OBSERVATION                          VALUE                             EXPECTED

TTG IGA AB                               <1.2 U/mL                         0.0-3.9

 

 

 

 

For my 18 year old daughter:

Tests: (1) IMMUNOGLOBULIN A # (2458-8)

OBSERVATION                           VALUE                             EXPECTED

IGA                                               289 mg/dL                          66-436

 

Tests: (2) TIS.TRASGLUTAMINASE  IGA AB (L.TGAA)

OBSERVATION                               VALUE                        EXPECTED

TTG IGA AB                                    <1.2 U/mL                        0.0-3.9

 

 

 

Both of these labs were done at the local hospital under MEDITECHLAB if that makes any difference. I am going to bring these results with me to the GI when we go down on Wednesday to see what she says. I may need to find a new pediatrician as I think I've lost all faith in the one I have. *sigh* Maybe I'll just move them all over to my doctor since she's family practice. At least she understand what it means to be gluten free as she is herself.

Any thoughts on those test results would be most appreciated thank you!

[nvsmom]

I think you are right that the only celiac test they ran was the tTG IgA. That is pretty common; my city only runs the tTG IgA and then if that is positive they run the EMA IgA.    

 

The IgA test they ran was the total serum IgA which is a control test to make sure the patient makes enough IgA for a valid  tTG IgA test - about 5% of celiacs are deficient in IgA so their tTG IgA test would not be accurate.

 

That being said, the tTG IgA test does not catch every case of celiac disease that it tests for. The tTG IgA has a sensitivity of 75-95% which means that 5-25% of undiagnosed celiacs eating a diet with gluten will test negative on those tests. They could not be celiacs but they have a 5-24% chance that they are celiacs and it was just missed somehow. With a history of celiac in the family, I think having other tests done could be helpful.

 

The full celiac panel is:

• tTG IgA and tTG IgG
• DGP IgA and DGP IgG (newer tests that are better at catching the disease in kids)
• EMA IgA (very similar to the tTG tests but positive after a high level of villi damage is done)
• AGA IgA and AGA IgG (older and less reliable tests but thought to show NCGI (gluten sensitivity) unlike the other tests which just indicate villi damage - as I understand it)

This report, on pages 11-12, discusses the various tests as well as their sensitivity and specificity (how often it indicates celiac disease when positive): Open Original Shared Link

 

Good luck with getting answers and with your other labs.  

[momma bee]

We had the same tests run here on our family once our littlest one was diagnosed and we all came back negative as well (but hers had been negative as well)... I am wondering too if more tests need to be run to be sure! Seems odd and a bit un-nerving!

Good luck and let us know if they agree to run more tests in you all...I am thinking when finally meet the gi doc once the diagnosed one is over 6 months gluten free we can ask her about more testing so I would love to know what they recommend to you!

[mommy2krj]

Thanks for the replies. I do plan on talking to the GI about the whole family. I'm curious what she has to say. Still waiting for the results for myself and my husband. Going to have to call on Monday to see if the results are in for his....they should be!

 

I do plan on having the entire house go gluten free after the 19th. I've sat here and watched my little guy get sick and be in pain from something that is preventable....I'm not willing to even take the chance that there would be cc because someone wasn't careful enough with their food in my house. Bad enough we'll have to deal with it outside our house. Not to mention I'm not a big fan of cooking to begin with....so cooking two separate meals? Not gonna happen! Which is why I wanted everyone tested now. Regardless of whether they have Celiac's or not...if you live here you will be gluten free!

 

I will come back and post what the GI says and if my husband or I or both of us are Celiac or not. I also plan on trying to keep track of the things I notice in both my Celiac child and the older two that "aren't".

I just feel so bad having to continue to feed him like this when I know it doesn't make him feel good. We went the whole foods route thinking we were doing something healthy for our kids....and look where that got us! We will stay with the whole foods...it'll just be devoid of grains (or at least the ones that hurt the little guy!)

[nora-n]

I would ask for the DGP IGG test as well, they are standard now together with the Ttg-IgA over here in northern europe

[nvsmom]

  On 6/15/2013 at 5:32 AM, mommy2krj said:

I do plan on having the entire house go gluten free after the 19th. I've sat here and watched my little guy get sick and be in pain from something that is preventable....I'm not willing to even take the chance that there would be cc because someone wasn't careful enough with their food in my house. Bad enough we'll have to deal with it outside our house. Not to mention I'm not a big fan of cooking to begin with....so cooking two separate meals? Not gonna happen! Which is why I wanted everyone tested now. Regardless of whether they have Celiac's or not...if you live here you will be gluten free!

 

I will come back and post what the GI says and if my husband or I or both of us are Celiac or not. I also plan on trying to keep track of the things I notice in both my Celiac child and the older two that "aren't".

 

 

My kids all tested negative in the tTG IgA test in spite of the fact that 2/3 of them had some obvious symptoms of celiac or NCGI. Since that was the only test my GP would do, I made our household gluten-free and lo and behold the kids got better. What a "coincidence" eh?  LOL My doctor advised not making them gluten-free but it doesn't hurt them in any, and it appears to help.

 

During the teenage years, many celiacs lose some of their symptoms. I know mine became much less noticeable at that time. It's good that you are checking them. If all tests are negative, you should retest every few years because celiac can appear at any time in those with a family history... and those without.

 

Best wishes.

[mommy2krj]

  On 6/15/2013 at 7:48 PM, nvsmom said:

My kids all tested negative in the tTG IgA test in spite of the fact that 2/3 of them had some obvious symptoms of celiac or NCGI. Since that was the only test my GP would do, I made our household gluten-free and lo and behold the kids got better. What a "coincidence" eh?  LOL My doctor advised not making them gluten-free but it doesn't hurt them in any, and it appears to help.

 

During the teenage years, many celiacs lose some of their symptoms. I know mine became much less noticeable at that time. It's good that you are checking them. If all tests are negative, you should retest every few years because celiac can appear at any time in those with a family history... and those without.

 

Best wishes.

Thanks for the well wishes!

I still don't understand why a doctor would advise against people going gluten free (unless there is an ongoing problem and they're trying to test for it). So long as the people going gluten free are doing a whole foods way of doing it and not just swapping out junk for junk. I don't think many doctors really have a clue when it comes to nutrition and such.

Anyway...I'm bringing those results with me to the GI so she can tell me they are negative. I don't trust that the pediatrician truly knows anything about it.