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Follow Up Tests


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10 replies to this topic

#1 come dance with me

 
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Posted 29 August 2012 - 08:38 PM

My daughter's paediatrician said to do a blood test after a year, it's been longer than that so at an appointment with the GP this morning for something else, I asked her about it. She said it's rediculous and she will not put her through the trauma of a blood test when there is nothing to be gained by it.

What's everyone's opinion on that?
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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...

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#2 Christine0125

 
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Posted 30 August 2012 - 07:44 AM

My daughter's paediatrician said to do a blood test after a year, it's been longer than that so at an appointment with the GP this morning for something else, I asked her about it. She said it's rediculous and she will not put her through the trauma of a blood test when there is nothing to be gained by it.

What's everyone's opinion on that?

Was she low on any vitamins or minerals (iron, vit d, etc.)? If not, I'd probably skip it unless she's having any remaining issues on the diet.
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#3 bartfull

 
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Posted 30 August 2012 - 11:27 AM

I think the blood test the pediatrician suggested might be to check for antibodies to see if the diet is working. Some folks feel better but still have high antibodies and are still damaging their gut. And really, how traumatic is a simple blood test? Would your GP refuse to give her vaccinations because THEY are traumatic? I'd take her to the pediatricain for the tests, and then fire your GP!
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#4 GottaSki

 
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Posted 30 August 2012 - 12:03 PM

I'd vote for full celiac panel plus Vitamins/Minerals Bs, D, K, Iron, Ferritin, Zinc and Copper because these are the annual tests we all get in my family as suggested by our Celiac Doc.

As Bartfull mentioned it is important to know if the antibodies have been reduced and it is also important to see if she is currently absorbing nutrients.

I'd also vote for a new doctor if they insist it is not necessary to monitor your child.

Good Luck :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 eatmeat4good

 
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Posted 30 August 2012 - 12:16 PM

Just yesterday I got the results of my sons Ttg/Iga test and he was POSITIVE after 2 years of being gluten free! I fully expected the tests to come out negative since we had both been gluten free for two years and we are very strict and only eat out on birthdays at the Outback....that is twice a year. Well, imagine my surprise when the Dr. said he is still producing antibodies and you will have to be more careful! I thought we were careful to the point of paranoia.

Now we have decided to only eat Certified Gluten Free foods because those so called Gluten Free labelled foods must not really be gluten free after all. We do not eat products made on shared lines or in shared facilities, but not all products are labelled for this. I would never have known to make this change if I had not had his blood tested after 2 years. I wish I had done it a year ago. Explain the reason you need it to the Dr. or get a new Dr. who understands that you need to know if your child is producing antibodies or if you are being careful enough.

I am still in shock that after all the precautions and care we have taken with being gluten free that it still is not enough. Wow. Yes, if you can, you should get the follow up tests. Trace gluten is a big issue.
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#6 come dance with me

 
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Posted 30 August 2012 - 05:47 PM

Blood tests are highly traumatic, and if it isn't necessary like vaccinations then I would opt not to have it.

We eat only certified gluten free things, and home grown fruit, veg and herbs, etc.

She was not low on anything else, despite the paed being certain a vegan child would be low on iron and B12, and the couple of times she has eaten gluten (swapped food with kids at school), she has had a very bad reaction to it that lasted days. I don't see how we could be more careful, my house is totally gluten free, as is my mum's house and my brother's house, and she never goes anywhere else.

Anyway, I rang the Coeliac Society in my state and was told by them that it really is optional, she had one after the first year but hasn't had one again since then, and only because she was an adult at the time and had eaten a lifetime of gluten whereas my daughter hasn't, and even before going gluten free, most of our dishes were veges and rice based, she wasn't ever keen on bread, and the vegan cereal she had was also certified gluten and nut free so she hadn't eaten a lot of gluten through her life. It was only when she hit school age she was having savoury muffins in her lunch box, so she didn't think it was necessary, there's nothing we can change anyway.
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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...

#7 bartfull

 
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Posted 31 August 2012 - 07:38 AM

I'm sorry but I don't understand what is so traumatic about blood tests. They just draw a vial of blood, right? Or is it somehow different? The last blood test I had was a CBC and I got a good phlebotomist. I didn't even feel any pressure, let alone a sting. I would think after reading EatMeat4Good's post you would want to have her checked to make sure.

I'm not criticizing you, just don't understand.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#8 GottaSki

 
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Posted 31 August 2012 - 07:53 AM

I'm not criticizing you, just don't understand.

Hi Bartfull-

It depends on the child. One of my children is horribly afraid of needles and has a very difficult time with blood tests while his brother has no problem at all. It can also depend on the age of the child along with other factors I suppose.

If the OP's child has a tough time with blood tests, did not have any deficiencies and is already as gluten free as a family can possibly be, I wouldn't push for annual blood test. If the child has little problem with blood tests, it is better to have the data than not have it.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 come dance with me

 
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Posted 31 August 2012 - 11:49 PM

My child has Autism, and finds it traumatic. I'm sorry you don't understand, but the doctor knows her well enough to have been able to make that call. She's known the family for a lot of years.
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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...

#10 GottaSki

 
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Posted 01 September 2012 - 07:31 AM

My child has Autism, and finds it traumatic. I'm sorry you don't understand, but the doctor knows her well enough to have been able to make that call. She's known the family for a lot of years.

My original recommendation would have been much different had I known tests were tramatic for your child. For me, your original post sounded like it was only the doctor suggesting it ridiculous and traumatic - my apologies for misunderstanding your question - I certainly would not recommend a new doctor in this case and would carefully consider the need for annual testing with a child that finds it traumatic. Perhaps run them if there is a need for other tests at a later date.

Keep up the great work Mom :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 come dance with me

 
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Posted 01 September 2012 - 05:21 PM

I didn't mention it because I wanted to know what people thought about annual testing, but I finally got onto the Coeliac Society and they said it's up to me, personal choice, if we had a mixed house it would be different, but we have a gluten free house, not a mixed house.
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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...




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