Daughter's Test Results - Biopsy?

[LindseyK23]

I am new to posting here. I just got blood test results back for my 5 year old daughter that indicate she may have Celiacs. Her doctor said they wont know for sure until we get a small bowel biopsy and we are scheduled to see a pediatric GI specialist, but I am kind of impatient waiting.

I don't completely understand why she needs the biopsy, as from what I have read, the blood tests dont seem to give too many false positives. Am I wrong? I don't want to worry needlessly. Her blood tests were all positive: deamidated (gliadin) IgA=31 and IgG=63, tTg IgA=54 and IgG=15 , EMA=+.

Thanks for any input - worried about my daughter, whether to get the rest of the family tested, and how we will manage this.

[mommida]

You are right she most likely has Celiac disease from the blood panel. The "gold standard" of diagnoses includes the biopsy.

The biopsy at this point can be done to rule out any further disorders and give a baseline as to how much damage has occured.

For example my daughter was too ill to have the biopsy at 17 months old and was diagnosed probable celiac. When she turned 6 it was like glutened symptoms times ten. She then had the biopsy and was diagnosed with Eosinophilic Esophagitus. We are positive she has Celiac from the blood and genetic testing and EE was another diagnoses along with Celiac. It may be proven there is a connection between the 2 diseases.

It is very difficult to make these choices for your child.

[LindseyK23]

Thank you for your response. I hope your daughter is doing better now that you have figured out what was wrong.

The endoscopy isn't painful for her, is it?

Does anyone know of other things that would cause the positive blood tests? Like if it is some kind of temporary infection, would she develop those antibodies?

[shadowicewolf]

Endos aren't painfull at all. They'll put an iv in and then knock her out (they may use stronger stuff since she is a kid). She may wake up with a sore throat but thats it.

That blood test is really spacific. The only other thing (as i found out from the mayo clinic website), is arthritus may cause the antibodies...

[mommida]

They can actually knock her out with gas or a swallowed medication that will make her not care before the I.V. goes in. They have you together at this point so your child doesnt have any extra stress.

She is doing well with EE. It is really managed by eliminating "trigger" foods. It took about a year and a half of elimination diet and rotating back in "allergens". We still are trying to monitor BHT, a food preservative. It can also be an airborn allergen. We will have to see what late August/September brings.

I'm not sure what else could cause the Celiac panel to be positive. (my daughter's panel was positive and we are sure from her vomitting and "D" after eating gluten along with DQ2 and DQ8 genes ~ she has Celiac.)

The biopsy at that point is going to.... confirm Celiac, rule out other disorders, and give you a baseline of what damage has occured. If you have another follow up scope for "healing progress" or (hopefully not) further problems.

You can get a lot of help starting the gluten-free diet here at this site.

[ravenwoodglass]

Endos aren't painfull at all. They'll put an iv in and then knock her out (they may use stronger stuff since she is a kid). She may wake up with a sore throat but thats it.

That blood test is really spacific. The only other thing (as i found out from the mayo clinic website), is arthritus may cause the antibodies...

Or the arthritis is a symptom of celiac as it was in my case and will go into remission on the diet. With all due respect to Mayo they are not exactly knowledgeable about all aspects of celiac as can easily be seen on their 'matrix' for diagnosis and their exclusion of other celiac associated genes.