What Tests Do I Need To Ask For?

[CWKred]

Looking for some information from those that have been there.  My daughter is turning 11.  She has been Gluten Free for 6 years now.  When she went gluten-free, we didn't do any fancy tests, Just took her off Gluten for 2 weeks and then re-introduced and then watched her get super sick.  Our question was answered.  She is also starting to have issues with Dairy.  We always assumed she was NCGS but now I'm really not sure. She has become increasing more sensitive to cross contamination over the past year and now if she gets any Gluten, it causes bloody or mucus in her stool.  We just went to see our first Gastro and they did a blood test.  

 

She tested positive for a lower risk Celiac marker and now we are going to do a bacterial overgrowth test.  

 

I guess my question is what should I look for next?  What should I ask the DR for after this test.  I don't really care to have the lactose test because much like how i initially diagnosed Gluten was an issue, I'm able to do the same with Diary.  

 

 I've been doing some research but I would love to hear what the process or tests were like for other people, who were already Gluten Free, to get diagnosed with Celiacs or to be able to rule it out.  Thanks in advance!!

[kareng]

Currently, there are no tests for Celiac if you are gluten free. She would need to do a gluten challenge and eat wheat to be diagnosed with Celiac disease. You could get the genetic tests. Those won't tell you she has Celiac, but could eliminate that as a possibility.

[nvsmom]

The only medically accepted tests for diagnosing celiac disease (at this time) are:

• tTG IgA and tTG IgG (tissue transglutaminase) - most common tests
• DGP IgA and DGP IgG  (deaminated gliadin peptides) - good for diagnosing children
• EMA IgA  (endomysila antibodies)
• total serum IgA - a control test
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older, less reliable tests largely replaced by the DGP tests
• endoscopic biopsy - 6+ samples taken

Get as many done as possible because those tests can miss celiacs with false negatives.

 

These blood tests will only be accurate if the patient is eating gluten (1-2 slices of bread per day) in the 8-12 weeks prior to the blood draw.  The endoscopic biopsy only requires a gluten challenge of 2-4 weeks.

 

I am guessing that you had an IgG food sensitivities test?  If so, that is not a celiac disease test.  I may tell if one has a sensitivity to gluten but they aren't always reliable - I've seen celiac with negative results.  Those tests also require that the patient has eaten gluten in the past 6 to 12 months, so if it was positive, she is not gluten-free yet.

 

Perhaps you had the genetic test done?  The DQ2 and DQ8 genes are found in 30% of the healthy population but in almost 100% of all celiacs.  If she had positive genetic tests, it just means that she could be at risk of developing celiac disease and not if she has it.

 

Unfortunately, the only way to know if she has celiac disease is to eat gluten for 2-3 months and get tested.  If you choose not to test, you will have to tighten up her diet so she is 100% gluten-free because you won't know if she has it or not.  Getting gluten from restaurants, toasters or sauces will eventually make a celiac very sick.  Trace amounts of gluten is too much for a celiac, KWIM?

 

Best wishes in whatever you decide to do, and welcome to the board.