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Neg Blood Test Now Ordered Gentic Celiac Test?

cadesmom

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cadesmom Rookie
cadesmom
Posted

test results just came in on my one year old son,they are neg but i did remove gluten a day before his bloodwork,when i told my gi doc that he is a different child and i mean he now sleeps like an angel and i am no longer walking him around 6 times a night with his stomach pains she said lets do a gentic blood test and test the gene itself,which means putting him back on gluten for one month how can i do this to him? they said all i need is small amouts once or twice a day but for a whole month,i am crying just thinking about it,then she said that wheat is like a poison to us all and maybe he just cannot have wheat i am so confused what is the difference between no wheat and gluten? does anyone have answers to help me?thanks cadesmommy

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

Being on a gluten-free diet for a day is not enough to cause a false negative ;)

That being said... false negatives are pretty common in young children. For that reason, some doctors will do an endoscopy even if the blood test is negative. If you want to pursue that, keep giving your son gluten! I know it will be hard :( Hopefully you can get an appointment right away.

As long as you can afford it (Enterolab was $174 when I did it last year) I see no reason not to do the genetic test. It's painless... just a cheek swab... and the results might give you reassurance. You can do it at any time, any age. For me personally the genetic test was worth every penny.

Good luck with your son! It sounds like you have a great reason to keep him on a gluten-free diet regardless of what the tests show.

swalker Newbie
swalker
Posted

Celiac is only one manifestation of a gluten (the protein in wheat the cause all of the problems). There are over 200 other symptoms. After several negative test results we've removed gluten anyway and all feel great. When testing catches up and if there's some kind of benefit to having a diagnosis we may revisit but not if it mean eating gluten again.

boysmom Explorer
boysmom
Posted

Ok, somebody 'splain please?

I'm new to the board and researching celiac/gluten intolerance while I want for my Gi appt, so please help me. Why would you need to keep eating gluten before genetic testing? I understand that the bowel could begin to heal before a biopsy which could mask a diagnosis, but a gene is either there or not, isn't it? Changing your diet shouldn't change your genes?

jmjsmomma Apprentice
jmjsmomma
Posted
Ok, somebody 'splain please?

I'm new to the board and researching celiac/gluten intolerance while I want for my Gi appt, so please help me. Why would you need to keep eating gluten before genetic testing? I understand that the bowel could begin to heal before a biopsy which could mask a diagnosis, but a gene is either there or not, isn't it? Changing your diet shouldn't change your genes?

boysmom I wondered the exact same thing.....the gene is either present or not, regardless of gluten consumption, right?

Mother of Jibril Enthusiast
Mother of Jibril
Posted

True... you can do a genetic test at any time. It doesn't matter if you're eating gluten or not.

cadesmom Rookie
cadesmom
Posted
  • Author
True... you can do a genetic test at any time. It doesn't matter if you're eating gluten or not.

then why is my gi doc making me give my son gluten? if the gene is their regardless,i put him back on gluten but only cherrios and gerber puffs and the two days that he has eaten them we are back to bad nights again ,gas stomach pains him crying,i feel like i am tortureing him,because my gi doc said he needs to have small amouts everyday to have an accurate gene test,i am sad and confused i want to know for certain if he has it or not maybe it is wheat only,i feel overwhelmed by this i just want my baby to not hurt if i could take it away and give it to me i would.

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Amyleigh0007 Enthusiast
Amyleigh0007
Posted
then why is my gi doc making me give my son gluten? if the gene is their regardless,i put him back on gluten but only cherrios and gerber puffs and the two days that he has eaten them we are back to bad nights again ,gas stomach pains him crying,i feel like i am tortureing him,because my gi doc said he needs to have small amouts everyday to have an accurate gene test,i am sad and confused i want to know for certain if he has it or not maybe it is wheat only,i feel overwhelmed by this i just want my baby to not hurt if i could take it away and give it to me i would.

I would call the doctors office and make certain the test is for genes only. There is no reason to give your son gluten if the test is for genes only.

jerseyangel Proficient
jerseyangel
Posted
then why is my gi doc making me give my son gluten? if the gene is their regardless,i put him back on gluten but only cherrios and gerber puffs and the two days that he has eaten them we are back to bad nights again ,gas stomach pains him crying,i feel like i am tortureing him,because my gi doc said he needs to have small amouts everyday to have an accurate gene test,i am sad and confused i want to know for certain if he has it or not maybe it is wheat only,i feel overwhelmed by this i just want my baby to not hurt if i could take it away and give it to me i would.

cadesmom,

Your doctor is mistaken. The gene test can be done at any time--it does not matter what the person is eating. Your genes are your genes.

Some doctors will diagnose based on positive diet response and having DQ2 and/or DQ8. Maybe this is what she has in mind, but at any rate, your son does not have to be consuming any gluten for the gene testing to be accurate.

I think at this point, you know best what he can tolerate. I'd remove the gluten completely--you really don't need a doctor's ok to do that.

txmama Newbie
txmama
Posted

My 3 yo dd is in the process of getting diagnosed. Her appt. was last week. She was vomiting daily for a year and a 1/2, and stopping the gluten stopped the vomiting. When the doctor discussed our testing options, he made it clear that it was our choice whether to do the testing that required her to continue with gluten or to keep her off gluten and be satisfied with the testing that we can do.

Since her reaction to gluten is so extreme, the choice to keep her off the gluten was easy. The dr. ordered the Celiac panel, the genetic test, and a wheat allergy rast. The panel could be negative since she had been off gluten for a week. However, he said there was one marker that could be detected for up to 2 weeks after going gluten-free. The genetic test can rule out Celiac if you don't have the genes, but he said you can carry the genes and not have the disease. If dd has the genes and/or marker, the diagnosis would be Celiac. If she doesn't have the genes, he's going to order allergy skin testing.

We are supposed to get the results anytime. In the meantime, she feels great, and she's learning to enjoy food again If your child is just miserable on gluten, this is the way I would go. I'm disappointed that your dr didn't give you the option of removing gluten immediately and getting on with the healing.

Maiko Newbie
Maiko
Posted
cadesmom,

Your doctor is mistaken. The gene test can be done at any time--it does not matter what the person is eating. Your genes are your genes.

Exactly - no need for gluten to be in the body for this test.

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