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


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20 replies to this topic

#1 Polly

 
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Posted 08 June 2012 - 07:42 PM

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?
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#2 Roda

 
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Posted 08 June 2012 - 10:45 PM

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) :P

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.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#3 VydorScope

 
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Posted 09 June 2012 - 03:34 AM

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.
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#4 MaZoodleTwins

 
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Posted 09 June 2012 - 04:59 AM

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 :angry:

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

 
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Posted 09 June 2012 - 05:31 AM

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.
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#6 Polly

 
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Posted 11 June 2012 - 04:27 PM

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!!
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#7 Sesara

 
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Posted 11 June 2012 - 07:07 PM

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. http://prometheuslab..._Healthcare.asp
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#8 Polly

 
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Posted 22 June 2012 - 05:09 PM

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!
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#9 faithforlife

 
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Posted 22 June 2012 - 08:26 PM

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.
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Faith For Life
Family History of terminal diabetes, acid reflux, etc.
2010-My 4 yr. old son- chronic diarrhea (3-5x a day since he was 12 months old)and chronic anemia,positive for 2 gluten sensitive antibodies, the genes, inflammation
(no villous atrophy found)
2011-entire family positive for genetics for celiac
2011-myself- positive gluten antibodies across the board
Family is successfully gluten free and some lactose free, studying Specific Carbohydrate Diet and Paleo Diet

#10 faithforlife

 
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Posted 22 June 2012 - 08:28 PM

In my letters I Included each persons name and insurance ID# to make it easy on him.
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Faith For Life
Family History of terminal diabetes, acid reflux, etc.
2010-My 4 yr. old son- chronic diarrhea (3-5x a day since he was 12 months old)and chronic anemia,positive for 2 gluten sensitive antibodies, the genes, inflammation
(no villous atrophy found)
2011-entire family positive for genetics for celiac
2011-myself- positive gluten antibodies across the board
Family is successfully gluten free and some lactose free, studying Specific Carbohydrate Diet and Paleo Diet

#11 Polly

 
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Posted 23 June 2012 - 05:10 PM

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

 
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Posted 30 July 2012 - 08:46 PM

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?
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#13 StephanieL

 
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Posted 31 July 2012 - 04:25 AM

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

B) 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?
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#14 Polly

 
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Posted 31 July 2012 - 04:45 PM

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.
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#15 StephanieL

 
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Posted 31 July 2012 - 04:54 PM

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!
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