Should I Get My Daughter Tested?

[Quaylern]

I recently tested positive for gluten intolerance. I have a 5 year old daughter and I'm unsure if I should have her tested since I tested positive. I will feed her gluten free at my house but at her dad's he feeds her a standard diet. I would need a positive test to convince him that she would need to eat gluten free so just trying an elimination diet won't work. She doesn't have a lot of issues. She had mild eczema, sometimes complains of a stomach ache but it's hard to say if it is a real concern and has a bit of a hard time paying attention. Again, I'm not sure if that is a real problem or just her personality. She does fantastic in kindergarten so it's not like her attention span is a problem and I don't know if I'm just paranoid as a mom. I would get her tested no problem just to see if I wasn't concerned about the money. Finances are tight and I worry about the out of pocket expenses. Of course, I will get her tested if it appears to be a really problem and just figure out the money.

Any help or advice is greatly appreciated!

[Quaylern]

I also wanted to add that she has no growth problems. She is on the taller side for her age and a healthy weight. No problems with bowel movements.

[africanqueen99]

My almost 8 y/o (DX at 7.5) saw the GI when she was 5 for unexplained stomach aches.  I was told it was likely growing pains and sent on my way.  Fast forward 2 years and my youngest was DX so the oldest was tested again - BAM - Celiac.

 

I don't know how much the blood test will cost, but, IMO, there is no harm into having a simple blood test.  It might really leverage her diet with her dad, too.

 

eta: My oldest was also 100%/100% on the charts...until the year before she was DX.  She dropped to 50% height and *lost* weight over the course of a year.  Not all kids with celiac are small in stature.

[Quaylern]

Thank you for sharing your daughter's story. It's so hard to navigate all of this. I am the only or in my family diagnosed with gluten sensitivity but from my family's health issues I highly doubt I'm the only one with it. I don't want my daughter to suffer needlessly.

My doctor has suggested a saliva test for her. Has anyone had experience with that test?

[GottaSki]

Welcome!

 

What tests were used to diagnose your sensitivity?

 

If it was not a celiac antibody blood panel, you should return to eating gluten to have a complete panel, then decide if your daughter should be tested.

 

This process is frustrating -- hang in there

[Quaylern]

I was diagnosed by the celiac/gluten sensitive blood panel. Not sure if it helps at all but my results were as follows:

Anti-tissue Transglutaminase IgA <1.2 (negative)

Anti-deamidated Gliadin IgA 4 (negative)

Anti-Gliadin IgA 52 (strong positive)

Anti-Gliadin IgG 50 (strong positive)

[GottaSki]

I was diagnosed by the celiac/gluten sensitive blood panel. Not sure if it helps at all but my results were as follows:

Anti-tissue Transglutaminase IgA <1.2 (negative)

Anti-deamidated Gliadin IgA 4 (negative)

Anti-Gliadin IgA 52 (strong positive)

Anti-Gliadin IgG 50 (strong positive)

 

Yes, I would have a full celiac antibody panel run on her.  It is a bit strange that you had a negative DGP-IgA with such strong AGAs - so I would include the AGA's for your daughter as well:

 

Total Serum IgA

tTG - both IgA and IgG

DGP - both IgA and IgG

AGA - both IgA and igG

 

If she is negative, she should be tested every three years or more often if symptoms arise. 

 

The likelyhood that she will be eating far less gluten now that you have been diagnosed is strong, so make sure she is eating at least a slice of glutenous bread until she has testing done.  If you choose to wait and her diet doesn't have much gluten -- she'll need to resume daily gluten ingestion for twelve weeks.

 

Edited to add...did you have a Total Serum IgA?  Either way...with such strong positive AGAs...you too should have both tTG-IgG and DGP-IgG that weren't included in your panel -- depending on how long you have been gluten-free.

[Quaylern]

Thank you! There is so much info out there but it's hard to sift through it all for clear answers to my questions. I'll do the saliva test and if it's negetive, feed her gluten free at home but she will have it at her dad's and at school so she will have it in her system if we need to do further testing.

[Quaylern]

My paperwork says Total IgA: 219 (sufficient). I'm not sure what that means. My doctor didn't explain that part well and I was so overwhelmed that I didn't think I had more questions and now I feel like I have a million!

I'm kind of overwhelmed by all the testing options. I'm not sure if I should get more testing for myself and what to ask for. I am not sure if I should request a HLA DQ2/DQ8 test. Could you tell me more about testing tTG-IgG and DGP-IgG? I'm not sure if further testing is needed but I am very curious. I feel like I can be very successful on the gluten free diet with the information I have now. I have been gluten free for a little over a week and feeling better. I am also avoiding the other foods that I reacted to on my IgG food antibody test. They are harder for me than the gluten!

[GottaSki]

Sorry, didn't mean to add confusion.  

 

If you are certain you will remain completely gluten-free, there really isn't need to have more testing now and simply have follow up antibody tests at six months and than annually thereafter.

 

Not everyone with Celiac Disease tests positive on all the antibody tests, which makes this process all the more frustrating.

 

Because this thread started with your concern that you may have to prove an issue to your daughter's father at some point...I was leaning towards making sure you know the risk of her having &/or developing Celiac Disease.

 

Your Total Serum IgA test was within normal range, which means you have enough IgA for the antibody tests based on IgA to be accurate.

 

The interesting thing to me is you had one tTG and one DGP (both IgA) but the doctor ordered both the IgA and IgG AGA tests.  My suggesting that you get the additional tTG-IgG and DGP-IgG was so that you are sure you had a complete celiac antibody panel as starting data.

 

The gene testing can be an important piece of the puzzle, as is endoscopic biopsy and resolution of symptoms after removal of gluten.  

 

In my opinion -- completing the antibody blood tests would take priority on gene testing because over 30% of population have the genes for celiac, yet only 1% of population develop celiac.

 

I hope this answer did not add more confusion to an already difficult diagnostic process.

[Quaylern]

Thank you so much for all the information. I appreciate your help!