Grown Daughter Tests Negative For Celiac Antibodies, But

[1desperateladysaved]

My grown up daughter got tested for celiac. They tested IgA antibodies, IgG antibodies and nutrient levels.  She had no symptoms, so I opted to pay for less testing for her. Her antibody levels were negative.  My levels are suspected to be deficient.  Her ferritin level was 5 when 10-20 is normal.  My ferritin level has been struggling.  She was border line low in vitamin D.  Her vitamin B levels were adequate.

 

I have 2 DQ2 and 2Dq8 genes.  Therefore, my children are likely to have at least one gene for celiac.I am concerned her test was falsely negative.  This daughter is living away from home, so possibly she can be tested again over time.

 

One other daughter was tested and had negative antibodies. She had what I felt may be symptoms, so I opted for a full celiac panel for her.   Her nutrient levels were said to be okay.  She is taking a multi- vitamin.  She is living at home.  I have a very healthy diet plan thanks to 30+ years of undiagnosed celiac.  I got her crackers to eat daily, she had gluten bread, and she ate out several times to prepare for the test.

 

I just hope their tests were adequate and they truly aren't having celiac issues.  I think I will get the daughter living away some supplements.

 

D

[nvsmom]

Which tests were done? Was it tTG, AGA, or DGP tests, or was it just the immunoglobulin A and G tests (which as you know, aren't celiac tests). If you have low IgA levels, she could have something similar and that would affect her tests.

[1desperateladysaved]

I listed all tests posted on the forum for the MD, and had someone else look over the results and me besides  I checked to be sure all the tests were there .  They were negative..  Yeah, I figure she could be lacking IgA.  I also wonder if we are lacking in IgG.  I think I will have to wait until her health declines or they get better tests.  Either that or have more nutrient tests done.  Of coarse maybe take supplements and see if they are absorbed?  If things are absorbing well, not to worry, I guess, but the low ferritin is scarey.  I just heard yesterday from the Functional Medicine Nurse that the blood steals nutrients from the cells, so the serum is the last thing to show a deficiency.

[nvsmom]

Would she be willing to go gluten-free as a NCGI patient? It would be a shame for her health to decline... I remember when mine took a nose dive in my early twenties, and it never recovered completely.  

[GottaSki]

Would she be willing to go gluten-free as a NCGI patient? It would be a shame for her health to decline... I remember when mine took a nose dive in my early twenties, and it never recovered completely.  

 

Ditto for me...and since my antibodies were all barely positive at dx it is likely I had negative antibodies for years -- my kids all had negative blood work except one with  positive DGP-IgG -- although all have had every health issue improve or disappear gluten-free.  Two have now been diagnosed based on improved blood nutrient levels along with symptom resolution.  Grands were diagnosed based on symptom resolution. 

 

I also have two copies of DQ2 -- if you have two copies of both DQ2 and DQ8 each of your children have at least one copy of each of these genes.

[cyclinglady]

The low ferritin could be a problem.  The lowest ferritin level  I had was a 2 and even at 22, I was still feeling exhausted.  Problem was that with undiagnosed celiac disease, I wasn't able to build up levels fast enough.  I'd have a period or increase my exercise level and my hemoglobin would drop.  It was a vicious cycle.  Docs didn't pay much attention since I already have Thalaseemia (mild and another type of anemia).   It became an issue when I stopped my periods and I wasn't able to catch my breath just talking.  Then they found celiac disease!

 

So, I would be concerned about the  low ferritin levels that your daughter is experiencing.  She needs adequate iron stores to prevent anemia (if she doesn't already have it.

 

All good now!  

[1desperateladysaved]

No, she is not willing so far.  However, she is usually one that listens to Mom.  Overall my family still seems a bit unconvinced that celiac disease is a serious problem.  It is getting better, though.

 

D

[AlwaysLearning]

I suppose I'm wondering if the daughter with the negative test results had increased her intake of gluten in the weeks prior to the test. I know I probably went for weeks at a time without eating gluten (without trying) back before going gluten free, just avoiding it by instinct.

But maybe she is lucky and, if she does have the genes, they haven't been triggered yet. If she doesn't go gluten free now, you could always check back in with her regularly, make sure she knows some of the stranger symptoms to look out for, and perhaps she could make some sort of testing part of her regular yearly checkup, such as deficiency testing, or something else that might be a red flag but isn't part of the regular annual checkup.

[1desperateladysaved]

I suppose I'm wondering if the daughter with the negative test results had increased her intake of gluten in the weeks prior to the test. I know I probably went for weeks at a time without eating gluten (without trying) back before going gluten free, just avoiding it by instinct.

But maybe she is lucky and, if she does have the genes, they haven't been triggered yet. If she doesn't go gluten free now, you could always check back in with her regularly, make sure she knows some of the stranger symptoms to look out for, and perhaps she could make some sort of testing part of her regular yearly checkup, such as deficiency testing, or something else that might be a red flag but isn't part of the regular annual checkup.

One daughter had been away from home in Korea.  The other had been home and consuming daily gluten for the test.