Which Dr. Did You Get To Test Your Other Children?

[Polly]

I've posted before about our 7 year old who was diagnosed a few months ago. The GI who did her endoscopy said that there is a 10% chance that one of the other children is positive. She said to have the pediatrician send them to the lab for testing. I talked to our pediatrician and she said she has the specialists test for things like that because it is their specialty. In the meantime, the GI won't test the other children because they are not under her care. I called the insurance company to see which doctor needed to send the referral and got the run around from them, too.

What did you do if you had other children who needed to be tested with the Celiac Panel blood test? Which doctor wrote the orders for you?

[Roda]

Your ped should run the tests for you. That is nonsense. The GI is right in that they won't write orders for someone who is not their patient. Maybe you could have your daughter's GI write a letter to your ped explaining the need to test the other children. For goodness sakes if you tell the ped what tests you need run all he/she needs to do is write them down on a lab order slip and sign it. I promise it won't hurt the ped one bit. (hint of sarcasm)

My children's ped refused to test my boys after I was diagnosed. His reasoning was that they were healthy and he didn't see a need. I was MAD as fire! My boys were seeing an allergist/immunologist at the time so I called the office. I explained the situation to them and without any problems the order sheet was faxed to the lab.

[VydorScope]

I talked to our pediatrician and she said she has the specialists test for things like that because it is their specialty.

The pedi should do it, but if that is the response you got your next step is to say "Then please refer my children to a specialist for these tests." If the Pedi refers them to the GI, then most cases the insurance will cover it and the GI will do the test. It is over kill, IMO, but I know a lot of primary care doctors see themselves more as a central hub and constantly refer patients out to where they feel they will get the best help.

[MaZoodleTwins]

Our Pedi gave both of my girls the Celiac Blood Test and all I had to do was ask him to test. The GI will NOT do anything with any of your other kids unless your Pedi sends a referral for them. But there is absolutely no reason that your Pedi can't order the test. One of my girls bloodtest showed up positive and one of them showed up negative(although I suspect both of them have Celiac)

I've gotten the run around by Dr's before and you have to stand your ground and keep asking until they listen to you. Makes me so mad when you suspect or know something is wrong and you get the run around

Did your 7 year old have bloodtest for Celiac? If so, who did that?

[Sesara]

It seems like a lot of peds are reluctant/unwilling to run the bloodwork, because then they have to refer you to a specialist anyways if it comes back positive. I don't really understand the logic and I find it very frustrating. My son had the classic symptoms of Celiac, but my pediatrician refused to run the Celiac panel, instead testing him for parasites, cystic fibrosis, and fructose intolerance/toddler diarrhea rather than running the test that I actually wanted them to. And then it took them almost three weeks to get my referral through.

[Polly]

A big thank you for all of the timely replies, I really appreciate it!

I agree, I wish the ped. would just write an order. She agrees that we need to test the other children to make sure they don't have it. (They don't have any symptoms at this time). She just doesn't know the diagnostic codes and isn't familiar with the exact test they need, so wants to farm it out to the GI.

The problem is, we have 4 other kids who need testing (they say the baby is too young)and I was trying to avoid a $30 copay per child for an office visit to a GI we really don't need to see at this point just so that she can say we are under her care and then she can refer them for the test that was her idea in the first place because their sister turned out positive.

The person who ran the bloodwork on my positive 7 y.o. was an allergist who only ordered it because I asked him to. At the time, I was desperately trying to find out what this rash was that she had had for over a year and no doctor could identify. A friend of ours told us to look into Celiac. That is the only reason he ran the test, because I asked him to. He won't write the referral for the other children, either, because they aren't under his care.

Thanks for all of the information and encouragement everyone! I'll keep you updated!!

[Sesara]

A big thank you for all of the timely replies, I really appreciate it!

I agree, I wish the ped. would just write an order. She agrees that we need to test the other children to make sure they don't have it. (They don't have any symptoms at this time). She just doesn't know the diagnostic codes and isn't familiar with the exact test they need, so wants to farm it out to the GI.

The problem is, we have 4 other kids who need testing (they say the baby is too young)and I was trying to avoid a $30 copay per child for an office visit to a GI we really don't need to see at this point just so that she can say we are under her care and then she can refer them for the test that was her idea in the first place because their sister turned out positive.

The person who ran the bloodwork on my positive 7 y.o. was an allergist who only ordered it because I asked him to. At the time, I was desperately trying to find out what this rash was that she had had for over a year and no doctor could identify. A friend of ours told us to look into Celiac. That is the only reason he ran the test, because I asked him to. He won't write the referral for the other children, either, because they aren't under his care.

Thanks for all of the information and encouragement everyone! I'll keep you updated!!

Prometheus labs is one of the best and most comprehensive Celiac antibody testers out there. Tell your doctor all they have to do is go to the Prometheus website and they have specific info for healthcare providers to order their testing panel. Open Original Shared Link

[Polly]

Good news! I talked to the nurse practioner at the ped. office last time I was there with a sick kiddo and she did all the research to find diagnostic codes and I picked up the lab orders today.

Now I can finally get the others tested. Except the baby, I understand we have to wait until he gets older, right? I heard that babies can show false positives. (He's 19 months.)

Thanks, everyone for all of the support and suggestions!!

I'll try to let you know the results of the tests once we get them done and hear the answers!

[faithforlife]

We tested our baby at least to find her genetics-then well always know. I had the run around too. What I did was got it in writing from pediatrician for our insurance, then I took one of our other four kids who showed symptoms to the GI for an appointment and just thanked him up and down for diagnosing my other son and then asked him verbally and in writing to write orders for our whole family to be tested. He didn't immediately but I kept leaving written letters with his front desk and finally he wrote orders. I also had to push things Bigtime with our insurance who was very hesitant to cover testing.

[faithforlife]

In my letters I Included each persons name and insurance ID# to make it easy on him.

[Polly]

Did your insurance cover the genetics testing? I would like to get that done. We have Aetna.

[Polly]

Quick update everyone:

We just got the results back on the 4 children old enough to be tested, and two of them came back with high numbers. (That makes 3 out of our 6 children for us so far)

One of them, our 10 year old, has always been underweight, although tall for our family. He has always had sensory disorder issues and I've thought about putting him on a gluten-free diet in the past to see if it helps with sensory symptoms. This might actually turn out to be a real blessing for him, if it relieves those symptoms.

The other one who tested positive, my 9 year old, was a complete shocker to me. She does not show any textbook signs for any kind of gluten issues. The only sign she has of anything is a tendency toward sinus infections and those dark circles under allery kids' eyes.

They are both scheduled to see a GI in a few weeks, and will probably undergo the endoscopy to see if they have any damage.

What happens if they have high, out of range numbers on the celiac comprehensive panel, but nothing is found on the endoscopy?

[StephanieL]

What happens if they have high, out of range numbers on the celiac comprehensive panel, but nothing is found on the endoscopy?

We were given the option of

A) Staying on gluten and scoping every 6 months till we saw damage

go gluten free and see what his tTG numbers did.

My son was asymptomatic so we were really unsure what to do. After a few months (literally) we decided to go gluten-free and see what his blood levels did. They went from over 120 to 48 in the first 6 months so the Dr. feels we have our answer. That was 2 years ago.

Some Dr's will dx with high levels and having a first degree relative who was dx via biopsy. Maybe your Dr. will do that?

[Polly]

Thanks for the quick reply, Stephanie.

Did they give you any reasons why your son might be asymptomatic but have high numbers?

And reading your numbers, ours are lower than yours, but still out of range. My 8 year old daughter that has already been confirmed was 65 before going gluten-free. My 10 year old son was only 28 and my asymptomatic 9 year old daughter was 58.

Also, do they ever say someone is "gluten sensitive" versus celiac? I've seen that phrase thrown around a bit, but didn't know if it was reliable terminology or not.

[StephanieL]

My son was only 3 when we did the biopsy. I think there just wasn't enough damage for the positive on biopsy.

As for terminology, I think a lot depends on the Dr. Dr. Fassano now has a 5 point criteria he is willing to dx on without a biopsy. I think that if there are issues and + genetics and resolution of symptoms, it's Celiac. If the genetics is - but there is still resolution on the gluten-free diet, it's a sensitivity. I don't think there is a "medically accepted" definition though I could be totally wrong about!

[Polly]

Thanks, Stephanie! I'll report back once the biopsies are done!

I'm still trying to find out if there is a way to get insurance to pay for genetic testing. From what I've heard so far, it doesn't sound like it. And it sounds very expensive. Did you do any genetic testing, and do you think you know which side of the family it came from?

If 3 of our 6 kids turn out to be positive, I think we need to figure out which side this came from so the relatives on that side can be more aware. I'm suspecting my husband's side because his mom seems to have a lot of digestive issues, but she thinks she has been tested and that it came up negative. (Don't we always blame the other side, though -- hee hee)

[StephanieL]

My son did have the genetic testing. I have not. I also suspect its on my husbands side because of issues on his side. I am all for blaming it on his side, ey deserve it! Lol (the blame, not the disease!) They did pay for my sons genetic testing after the biopsy (it was inconclusive and sent to Dr. Fassano who read it as negative).

I have one Dr saying genetic testing for my other kids is useless since they share the genetics and one saying test me all. Who knows!

[Polly]

Thanks, Stephanie for all of the help and encouragement!

[Polly]

Update:

We heard back about the biopsies and my 9 year old girl (the one with no symptoms but a number in the 50's on the celiac screen) came back as a positive for celiac.

My 10 year old son, though, (with a 28 on his celiac screen) came back as having inflammation in the gut, but not caused by lymphocytes, which is apparently the thing you need to declare celiac officially. The GI said that could mean she didn't biopsy the exact place we could find it, or that he hasn't moved into full blown celiac yet. Either way, she recommended we go gluten-free with him, if we would like, and test his bloodwork again in 6 months to see if any numbers have changed. She said we would also do a full blood count to make sure we aren't missing something else. I'm okay with this because I think it will help with a lot of his sensory issues and overall anxiety.

The other thing that surprised me was that she said that the two other children we had tested (3 y.o. and 5 y.o.) could still show up with celiac someday even though they were negative on the screen. She said that we would only need to retest them if they start to develop celiac symptoms later on. (I thought they were safe when those results came back, bummer)

Thank you, everyone, for all of the help and encouragement. I love this forum -- it makes me feel not so isolated in all of this.

[StephanieL]

Hi Polly,

Well I am glad you have some answers! It is so tough waiting this stuff all out but here you are!

I would absolutely have your son go gluten-free. That is where we were with our DS but with higher numbers.

And yes, you don't know about the other two. Celiac needs a "trigger" which is different in different people. My DD tested - but she is gluten-free for ease and safety. DS#2 hasn't been tested as a) he's never had direct gluten and he's so young. We were advised to maybe get DD genetically tested but I think her genetic chances are pretty high so why bother. We are thinking of doing a direct challenge here once school starts (she can have gluten at school and keep it out of the house!)

If you have questions there are so many people here who know what is going on!!

[Mom-of-Two]

Glad you got some answers! I would absolutely make your son gluten free as well, that inflammation is a red flag- BUT also make sure there are no other food allergies, my pediatric GI says that can cause inflammation in the guts of children too. My daughter had a tTG of 78 and also positive on endomysial antibodies, but a totally normal scope, not even inflammation or any increase in the white cells, absolutely no signs whatsoever that she had damage, in fact they said on her report, the villi were long and delicate, the GI said they were "beutiful villi" - they took 8 total samples. It was sort of boggling to us, but we had to do what we felt was the right thing, she has been totally gluten free about 2 weeks now. We are also all gluten free at home (I have celiac), we find it easier to cook and not worry about family or babysitters here and how they cook and prepare food in my kitchen.

My youngest tested normally on his celiac testing, has no signs, so in a few more years we will blood test him again. My concern is that he eats gluten free most of the time, since I don't have gluten food at home! So, I suppose I will have to let him eat lots of gluten leading up to his next labs. Not sure yet what we will do with that situation. I feel I should know if he has celiac, so worth it I guess to be tested. Even his lunches will be gluten free since I pack them, unless he does order at school on occasion- we are in private school so pay for each lunch ordered. The only gluten he would consume would be on occasion at school, for a party or birthday, etc.

Good luck to you and your children!