Conflicting results?

[Christina.V]

We are trying to figure out if my 5 yr old has celiacs, any advice would be super helpful!

The indicators that he may be positive:

• I have celiacs (and did not have any GI symptoms prior to Dx)
• 250 Ttg/iga
• elevated liver enzymes
• diarrhea and stomach pains when eating gluten at my house, Ex-H claims that he is symptom free at his
• in the biopsy, the surgeon indicated that when he introduced water into the small intestine he saw some damage
• He is only in the 5th percentile for growth

Indicators that he may be negative:

• the biopsy results don't show any damage

Any advice on additional bloodwork that I can have the Dr. run? I don't want to simply say "oh the biopsy came back negative, so he's in the clear". My ex-husband is saying that I'm on a witch hunt (grrr).

My goal isn't to continue poking and prodding my poor little man, but the ex refuses to just go gluten free voluntarily. It's very frustrating!

[cyclinglady]

You are in a tough position!  A positve TTg of over 200 sounds like (labs ranges can vary) your  son could have celiac disease.  The TTg is just one celiac disease a screening test.  I would ask for the complete panel. If that was not ordered.   Some of the other celiac tests are very specific to celiac disease.  A genetic test can help rule out celiac disease as 30 % of the poulation carries the gene but only a few lucky ones ? actually develop celiac disease.  That might be worth getting too!  

Here are the tests:

 

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA 

-total serum IgA and IgG (control test)

 

-endoscopic biopsy - make sure at least 6 samples are taken.  The small intestine is vast!  Over 20 feet in length and when stretched out is is the size of a tennis court!  How many biopsies were actually taken?  And where were they taken?  It is so easy to miss damage areas!  

 

VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  About 8 to 12 weeks for the blood test.  How much gluten is he getting?  I had to give my daughter gluten daily (we have a gluten-free home) for three months before I had her tested.  

 

(Source: NVSMOM -- ?)

 

Welcome to the forum and let us know how it goes!   Get all copies of lab results too!  

 

[nvsmom]

I would guess that he does in fact have celiac disease. That is WAY too many coincidences.  Plus the tTG IgA is quite a specific test.  It has a false positive rate of only about 5%, and those are generally weak positives - 200 is far from weak.  And those weak false negatives are caused by something else, usually hashimoto's, T1D, crohn's, colitis, liver disease or a serious infection.  Something causes a positive.

Remember, a positive result then means that there is a 95% chance that he has celiac disease.

This report has more info on the tests. Open Original Shared Link

I agree that getting more tests done could be helpful if you want to confirm the diagnosis. The more tests the better since celiac disease tests are not that sensitive and can miss up to 25% of all celiacs.

Do remember that a negative biopsy does not rule out celiac disease. It just doesn't support the diagnosis!  Biopsies can miss up to 1 in 5 celiacs; that's 20%!  It isn't uncommon at all.  False negatives become more likely if the doctor did not sample widely, took fewer than 6 samples, or if the patient was gluten-free.

I would push for the diagnosis. Fasano (a celiac expert) likes to recommend that a patient meet 4 out of 5 criteria for a diagnosis:

1.  Symptoms of celiac disease

2.  positive blood tests

3.  Positive biopsy

4.  positive genetic tests (DQ2 and/or DQ8)

5.  Positive response to the gluten-free diet

Open Original Shared Link

It sounds like he had symptoms and a positive blood test, and I would bet money on a positive genetic test.  How about a gluten free trial of 1 year and then retest to see how much the autoantibodies have come down?  That would be proof right there... although it could be hard with the ex.

Try to get those other tests done first, and doctor shop to get the diagnosis if you have to.

Good luck!

[Christina.V]

Thank you SO MUCH for those statistics, and the reports to back them up. I feel like my mothers intuition is saying that he has it, so I'm not willing to walk away from this and say he's all clear. Even though my intuition tells me this I realize it needs to be a data driven decision.

I would be happy to go gluten-free for a year and see how he does. It's definitely a matter of convincing the ex to do the same. 

Right now I'm going to get a second opinion. ?

[bartfull]

Maybe if you show all of this info to the ex?

[squirmingitch]

Here are some more reports that may be helpful in convincing the ex that this is serious stuff and not to be taken lightly.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link