Confusing Lab Results

[roshimaximom]

Hi All,

I've been reading here a long time but not posting. Very quick background on us: my 3 year old son has had a myriad of health issues since he was tiny and had his first celiac tests a year and a half ago. At that time he had a positive genetic screen (I am not sure which) and he had low IgA (14) so the other test wasn't valid, but didn't show active celiac. He has been having increasing diarrhea and tiredness lately so I convinced (hard to do for some reason) our pedi to re-do his celiac panel last week. He got:

his tTG Ab, IgA is 31, with a positive being over 8

his total IgA is 40 with the normal reference range being 24 to 121

his Gliadin Ab IgA is 3 with the positive being over 17.

We're going to be referred to a pediatric GI doc (he has seen them once before actually).

Thoughts? I guess if he's going to have a biopsy, I should *not* take him off wheat yet, right? I guess my confusion is how can his tTG be in the "moderate to high" celiac range when his Gliadin is low? I appreciate the opinions of those who know more than me

Thank you!

Larissa and Macky

P.S. Will be reading about experiences doing biopsies on 3 year olds. I admit to not looking forward to it, assuming that is where we're headed.

[roshimaximom]

talking to myself a little, but in case someone else reads this later with a similar question, the Ped GI Nurse Practitioner called and said yeah, its a very strong positive for celiac and we need to biopsy, and I decided to go for it, they're calling to schedule within 24 hours.

Hi All,

I've been reading here a long time but not posting. Very quick background on us: my 3 year old son has had a myriad of health issues since he was tiny and had his first celiac tests a year and a half ago. At that time he had a positive genetic screen (I am not sure which) and he had low IgA (14) so the other test wasn't valid, but didn't show active celiac. He has been having increasing diarrhea and tiredness lately so I convinced (hard to do for some reason) our pedi to re-do his celiac panel last week. He got:

his tTG Ab, IgA is 31, with a positive being over 8

his total IgA is 40 with the normal reference range being 24 to 121

his Gliadin Ab IgA is 3 with the positive being over 17.

We're going to be referred to a pediatric GI doc (he has seen them once before actually).

Thoughts? I guess if he's going to have a biopsy, I should *not* take him off wheat yet, right? I guess my confusion is how can his tTG be in the "moderate to high" celiac range when his Gliadin is low? I appreciate the opinions of those who know more than me

Thank you!

Larissa and Macky

P.S. Will be reading about experiences doing biopsies on 3 year olds. I admit to not looking forward to it, assuming that is where we're headed.

[Tallforagirl]

...his tTG Ab, IgA is 31, with a positive being over 8

his total IgA is 40 with the normal reference range being 24 to 121

his Gliadin Ab IgA is 3 with the positive being over 17.

We're going to be referred to a pediatric GI doc (he has seen them once before actually).

Thoughts? I guess if he's going to have a biopsy, I should *not* take him off wheat yet, right? I guess my confusion is how can his tTG be in the "moderate to high" celiac range when his Gliadin is low? I appreciate the opinions of those who know more than me

Thank you!

Larissa and Macky

P.S. Will be reading about experiences doing biopsies on 3 year olds. I admit to not looking forward to it, assuming that is where we're headed.

The tTG is the one that counts as far as diagnostic accuracy, and being positive it seems there's a good chance it's celiac disease.

The endoscopy and biopsy is a very straightforward and quick procedure, as it's performed under sedation. He won't feel a thing.

[happygirl]

The reason that one may be positive and one negative (or variations thereof) is that none of the tests are perfect, and they do not correlate 1:1. If that were the case, then they would only need to run one test - but none of the tests are perfect.

Do not go gluten free until all testing is completed.

[Fiddle-Faddle]

The biopsy has been the "gold standard" of diagnosis since the 1960's--but nowadays, the blood tests available are far, far more accurate ind informative than what was available 50 years ago!

Most doctors would consider your child's blood work to be a definitive diagnosis of celiac. Now, it's possible that there might be something else that your doctor wants to look for--but he can look for it later if a gluten-free diet doesn't eliminate symptoms.

An endoscopy/biopsy IS one of the less intrusive surgeries--not like open-heart surgery, for example. Yet, it DOES carry major risks--infection, reaction to sedation, puncture, etc. These risks are obviously greater in a small child.

If it were my child, I would try the NON-invasive option (the gluten-free diet) first, and only opt for an endoscopy/biopsy if after, say a couple of months, I saw little or no improvement in symptoms. And I DO have a child who has been through open-heart surgery.

I think it's great that your doctor ordered--and correctly interpreted --the blood tests for celiac. But my experience, and the experience of many here, has led me to believe that the only reason that the biopsy is still being touted by many doctors as the "gold standard" of diagnosis is that they get a lot of money from it. Obviously, they don't make a penny from a diet change.

Whatever you decide, best of luck, and please keep us posted.

Oh--and until those intestinal issues are resolved, I would delay any further vaccinations, and do some research on www.nvic.org. With those intestinal issues, your little one is at risk for serious vaccine reactions.

[roshimaximom]

Thanks for the feedback, everyone. I've struggled with the risk of the biopsy. My son has not been under general anaesthesia before but my daughter has - she has hypomineralized molars and had to have dental surgery (yes, she is getting a celiac panel done this week). the GI wants us to do a biopsy on Feb 17, and to stay on gluten until then. I am mixed on it. I feel like well, he has it, I know he has it. But, I've worked with this GI nurse practitioner a lot (again for his sister), and I think she has his best interest at heart, and based this and on other stuff in our family (history of structural anomaly in digestive tract that is genetic, and a lab he had that shows low pancreatic enzymes) I am leaning toward doing the scope.

We are already limited vaccinators - but I will keep this in mind. I a not planning any new vaccines for him in 2009.