Are There False Positives

[Rachelmoore]

My daughter who just turned 2 was tested for celiac disease. The blood tests came back positive. She also had some kind of immunity test done and her dr said her immune system is weakened and she won't be able to fight off infections very well. He told me to take her off gluten completely. I'm just wondering if there are ever false positives with the blood tests. I know some people have endoscopies as well. Her dr didn't mention having that. I was a little overwhelmed by the diagnosis that I didn't ask very many questions. Thanks

[mommy2krj]

Hugs! And welcome to the boards. First....take a deep breath. I'm rather new here myself. My 6 year old (really, the whole family) is currently on a gluten free trial for the next 3.5 months because he tested positive with the blood work but negative on the endoscopy/biopsies. I don't know what the protocol is for the endoscopies on ones so young.....sorry I can't help out there.

I would read around on this site....there are so many helpful people here. Ones that have been in your shoes and have made it through to the other side. I know there is a newbie thread, but don't know where to get it and post it for you. There's so much information to sort through and I know it can feel overwhelming. As far as false positives/negatives......from what I understand...the false negatives are more common in children that age. 

I hope you can get it all figured out and quickly so you can get on the road to recovery for your little one. Good luck and feel free to ask any questions you can think of. Oh! I wrote down every single question I had and took it with me to the doctor. It helped a lot to have it all written down so I didn't have to work on remembering the questions I really wanted answers to.

[emaegf]

Actually false negatives seem more common than false positives.

 

I also have no idea about doing a endoscope on a child at two but you can call the gastroenterologist office at your local clinic and ask them. Or you can go online to either Twitter or Facebook and locater The University of Chicago Celiac Center and ask there. The person who takes care of those accounts may know and if they don't they will find out and get back to you. They're really good about that. I've contacted them many times with questions I couldn't get answers for from my local medical people.

 

Celiac can reduce ones immune response do to the damage but once your daughter is on a gluten free diet and her system heals then she would have normal immune function again as long as she stays gluten free. 

[greenbeanie]

If it was the primary care doctor who ran and interpreted the celiac tests, I'd strongly recommend insisting on a referral to a pediatric gastroenterologist and speaking to them as soon as possible. The GI might want to do an endoscopy, and going gluten-free before all the testing is complete could cause false negatives. If you fax them a copy of the positive blood test results, they may be able to get her in for an urgent-care appointment. Or at least you could speak to the GI's nurse about what to feed her between now and the appointment. The receptionist may try to put you off and tell you there's a really long wait, but if you can somehow get a copy of the blood tests into their hands they'll hopefully recognize that they need to fit your daughter in soon. Even if your PCP supposedly already sent over the results, things can get lost in the shuffle and faxing it on the day you call might help ensure that someone actually reads it.

My daughter's PCP said to go gluten-free immediately upon getting positive blood tests results, and he meant well but it was bad advice. We did not doubt that she really has celiac, but fortunately I knew that we might need an official diagnosis from a GI for school accommodation purposes, etc., and my daughter's GI did want an endoscopy to confirm the diagnosis (which it did). It was good that we hadn't stopped gluten when our PCP said, or I would have had to put her back on gluten for the endoscopy (and it's often much harder to go back after being gluten-free). I've heard that some GI's will give an official diagnosis in young children based on blood tests alone, especially if they are very high positives, but ours would not without the endoscopy. If it was a GI who already diagnosed your daughter and said to go gluten-free immediately, then definitely do! But if it was a PCP who diagnosed her and you haven't spoken with a GI yet, then it would really be a good idea to insist on doing so, even if your PCP doesn't think it's necessary. You'll want a GI doing specialized follow-up for celiac anyway.

Hang in there! I know it can be overwhelming at first, especially if you weren't expecting the diagnosis. In our case we were expecting it, but it's still a lot to deal with all at once. However, the bright side is that your child should soon be much happier and healthier!

[nvsmom]

If she had more than one positive test, then I would say that chances are extremely slim that the results were caused by something else. The tTG IgA has a small chance of being caused by thyroiditis, chronic liver disease, diabetes or colitis and crohns, but the results are usually barely above normal when that is the case.

 

This report discusses the tests on pages 11-12. there is a chart showing sensitivity (how often the test appears positive in a celiac who is currently eating gluten) as well as specificity (out of 100 positive tests, how many are caused by celiac disease). as you can see, most of the tests are pretty specific to celiac - meaning there are few false positives.

 

I agree with the others to have her go gluten-free only after you are sure all the testing you need is complete. If you choose to have an endoscopy done, please be aware that doctors can miss the damaged areas when they do the endoscopy - the small intestine's surface area is that of a tennis court. Endoscopies seem to often come out negative in fairly newly developed cases of celiac disease or in young children (based on what I have personally observed around here). This can make it harder to get a diagnosis, and can confuse some patients into believing they don't have celiac disease so they resume eating gluten or just eat gluten light.

 

if you can get a diagnosis based just on blood work, I would advise you to get it, then if you choose to do a biopsy, it won't affect her diagnosis. I personally had a couple of positive blood tests, and the doctor was willing to diagnose me, so I skipped the biopsy. My positive tTG IgA and EMA IgA indicate that my body is working to damage my intestines, and that the damage was advanced.  I decided that if my symptoms didn't resolve with the gluten-free diet (which would be further proof it was celiac disease) then I would request an endoscopy in a few months, once my celiac damage had healed, and they could then look for other problems.... But that's just my own experience and thoughts. 

 

You also might want to have yourself, and the rest of the family tested as celiac disease has a genetic link.

 

Good luck in whatever you decide to do.  And welcome to the board! 

[Rachelmoore]

Thank you everyone! She was tested by a pediatric allergist. I will call & ask about further testing or being referred to a pediatric GI specialist

[nvsmom]

Darn it... I forgot to add the link! D'oh! Sorry about that: Open Original Shared Link

[Rebekka's mom]

When my girl was diagnosed she had just turned 18 months and they did biopsies on her for confirmation even though the blood test was pretty clear. She was a trooper, I was the one balling in the waiting room. I was very quick and the severeness of this really hit when the dr. said that her intestines were already showing obvious signs of celiac.

It is hard to put your little one in that position, but worth it in the end, she is much better off knowing for sure. 

Good luck!

[foam]

I'd ask for the gene test for the rest of the family. There's no guarantee you will get Celiac disease if you have the gene's but if you have DQ2 I think that's more than enough reason to not eat gluten even if you are not sick (yet) because the odds are not good. 

[Rachelmoore]

I should have also stated that I have celiacs and her 3 older siblings were genetically tested. She was not born yet. We all carry the DQ8 gene. I asked for a copy of her lab reports. Her ttg iga was 21.4 which seems to be pretty high. I've been to a couple GI specialists myself and I think they know very little about celiacs. It's frustrating not having them explain it very well to me. I felt like my daughters allergist knew more about it than the GI specialists

[mommy2krj]

Given that extra bit of information and knowing that not all GI docs are knowledgeable in Celiac (for whatever insane reason!!!) I would go ahead and go gluten free as a household. I think the only consideration here is if you need the endoscopy or just a diagnosis for when school starts.

Have your older kids been tested for Celiac? Besides the genetic testing? Or are they gluten free too? Your kids should all be tested every couple years if they're negative...especially if they have the genes for it. Maybe talk to the allergist since you're comfortable with him/her?