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Pediatrician Won't Test For Celiac


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18 replies to this topic

#1 scarlet_willow

 
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Posted 13 September 2012 - 06:39 PM

I am a newly diagnosed Celiac. My gastro advised that we get my 3 boys tested, regardless of symptoms. Well... their ped will not test them unless they present with symptoms! I find this incredibly frustrating because I love our pediatrician. He has been my boys' only Dr and he's been very, very good. But everything I have read says that all 1st degree (and sometimes even 2nd degree) relatives should be checked for this.

I have a well-child appointment scheduled for October, so I can try to convince him again then. Maybe I can get him to reconsider. My other options would be going to a pediatric gastro (which will be a huge hassle with 3 very young children) OR paying otu of pocket for one of those any labs places to do it... which would probably be even more expensive.

Any thoughts or suggestions of what I can say to help convince out ped to test my boys now? I don't want to lie to him and say they have symptoms when they don't.
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28 year old wife and mother of 3 boys ages 4, 2, and 1!
Hashimoto's and Celiac Disease

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#2 squirmingitch

 
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Posted 13 September 2012 - 06:49 PM

What about calling your gastro & telling him the ped refuses to test your boys as he (the gastro) advised. Ask the gastro if he will test the boys. it's only a blood test --- no biggie for a blood draw --- it's not like only peds can draw blood from kids.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#3 Darn210

 
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Posted 13 September 2012 - 06:54 PM

The GI is right in that your boys should be screened.

I'd call your GI's office and let him know that the ped won't test. Your GI can request the test for your boys or his office can call your pediatrician and let him know that the request has come through your GI.

When my daughter was diagnosed, her pedGI requested the testing for my son and recommended that my husband and I have our PCP request our screening test . . . he told us to let him know if we ran into any trouble but we didn't.
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Experience is what you get when you didn't get what you wanted.


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#4 Darn210

 
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Posted 13 September 2012 - 06:56 PM

I apparently type at the pace of a snail as squirmingitch's post wasn't there when I started posting . . . and my post is FIVE minutes later. My old typing teacher would not be happy ;)
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Janet

Experience is what you get when you didn't get what you wanted.


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#5 come dance with me

 
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Posted 13 September 2012 - 07:56 PM

You can just see a GP for a blood test can't you?
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Lord please give me patience, because if you give me strength, I may just beat the living crap out of someone...

#6 eatmeat4good

 
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Posted 13 September 2012 - 08:58 PM

I agree with telling your gastro that the ped won't test.
Then ask for a referral to a ped that will. Let your ped know that you will be going to another ped until you find one that will test your children since this is an inherited disease. You can tell him you are happy with his work except for this situation which is serious to you and your children.
Or see if your gastro will do it.
Or your GP.
Took me two years to find one that would agree to test my son. The excuse was that he didn't have classic symptoms and wasn't emaciated. Wrong.
He tested positive.
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#7 Roda

 
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Posted 14 September 2012 - 03:14 AM

My boys ped wouldn't test my boys either. They both were seeing a pediatric allergist/immunologist at the time and I got him to send me the order for the blood test. There was no problem at all. Both tested negative on blood work after I was diagnosed. I had oldest retested yearly and he was always negative. He has been gluten free for now a year and is doing wonderful. Two years after my diagnosis I had the youngest son retested and he was positive.
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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.


#8 Mizzo

 
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Posted 14 September 2012 - 03:26 AM

AS A LAST RESORT (and we had to do this ) I lied to my Dr about tummy pains to get myself and husband tested because he wouldn't budge. We waited a few weeks after my DD was confirmed and the household had been gluten-free to mention it again to the DR. saying we noticed changes when gluten-free in house to nonGf outside of house.

We preferred to keep this doc and have had NO other problems with him but this.
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#9 StephanieL

 
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Posted 14 September 2012 - 06:30 AM

Your GI wont be able to order the tests for your kids. Only a Dr. seeing the patient can order testing. You can have your Dr. send a letter to your Ped about the fact that it's genetic and they the kids need to be tested. If your Ped still won't I would seek out a new Ped or get a referral from your Ped for a pediatric GI who would most likely do the testing.

Good luck! The medical community has so much to learn about Celiac :(
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#10 squirmingitch

 
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Posted 14 September 2012 - 07:19 AM

Your GI wont be able to order the tests for your kids. Only a Dr. seeing the patient can order testing. You can have your Dr. send a letter to your Ped about the fact that it's genetic and they the kids need to be tested. If your Ped still won't I would seek out a new Ped or get a referral from your Ped for a pediatric GI who would most likely do the testing.

Good luck! The medical community has so much to learn about Celiac :(


But I would make sure your GI tells the ped exactly which tests to order. Since the ped has refused to test them then it stands to reason that he won't know what the full celiac panel consists of.



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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#11 MitziG

 
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Posted 14 September 2012 - 07:41 AM

What an arrogant jerk. So tired of doctors who forget why they have a job. Definitely get a letter from the GI with the specific tests and demand he run them. If not, take your business elsewhere.
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#12 1974girl

 
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Posted 14 September 2012 - 10:40 AM

I agree with getting the GI to send over the order. They do it all the time. And request like someone else said that he asks for the WHOLE panel. (EMA included) Some labs won't do EMA unless Ttg is positive so not sure how that really works.
I asked my ped. to test her since she has Hashimotos and dad is type 1 diabetic. She did it with no problem. She told me that it would be negative since she didn't have any symptoms but if she wanted me to, she'd do it. (I mean, WE are paying for it) She called me and said "I can't believe this but she is positive....waaaayyyyyy positive." I would get it done to prevent any other auto-immune diseases. The GI is hoping that by going gluten free, we can prevent my dd from getting type 1 diabetes like her dad did at 19. There are studies in lab rats that show it does help but then there is another one with humans that says it doesn't. Who knows but we are hoping for the best! (And taking vitamin D to help that along!)
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#13 mamaupupup

 
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Posted 16 September 2012 - 08:37 PM

Gosh do I understand!!! It took me 18 months to get my kids tested...went through three doctors...

Our girls' GI will (and did) write orders for any of their first and second degree relatives.

You are not alone! Thinking of you! Keep up all your hard work!
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#14 come dance with me

 
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Posted 17 September 2012 - 02:25 AM

I'm not familiar with the medical system over there, but here, a GP can order a test without any hassles.
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Lord please give me patience, because if you give me strength, I may just beat the living crap out of someone...

#15 frieze

 
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Posted 17 September 2012 - 09:11 AM

I am a newly diagnosed Celiac. My gastro advised that we get my 3 boys tested, regardless of symptoms. Well... their ped will not test them unless they present with symptoms! I find this incredibly frustrating because I love our pediatrician. He has been my boys' only Dr and he's been very, very good. But everything I have read says that all 1st degree (and sometimes even 2nd degree) relatives should be checked for this.

I have a well-child appointment scheduled for October, so I can try to convince him again then. Maybe I can get him to reconsider. My other options would be going to a pediatric gastro (which will be a huge hassle with 3 very young children) OR paying otu of pocket for one of those any labs places to do it... which would probably be even more expensive.

Any thoughts or suggestions of what I can say to help convince out ped to test my boys now? I don't want to lie to him and say they have symptoms when they don't.

maybe he needs to understand that by not testing he is commiting malpractice?
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