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Need To Test 6 Yr Old...do We Go To Regular Ped?

slee11211

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slee11211 Apprentice
slee11211
Posted

Hi Parents,

I was just diagnosed after a lifetime of dealing with Celiac and not knowing it (I was strong, fought it off well until after baby). My 6 yr old seems to be showing signs, and now I want to get him tested. But when I brought it up with our low-intervention Pediatrician, they didn't seem very interested in appeasing me. So they clearly are not on board with checking this out, and I don't know if they would do correct tests anyway. So do I go in to them armed with the EXACT tests I want performed (suggestions welcome), or do I research a Ped in NYC (we're lucky to be in big city) that has a focus on Celiac and might be better about testing? I don't want to mess this up (and he is deathly afraid of needles, so this will be horrible as it is!) because I want to know and get him on a path to better health. If I just pull him off wheat and have him eat with me, it will be a lifetime of not knowing for sure, just being told by his crazy mom. You know.

Thanks for any advice...and if you know the specific tests I need to ask for, that would be super helpful.

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carecare Enthusiast
carecare
Posted

I'm really shocked that after your diagnosis that your ped. wasn't on board with testing him. Time to find another ped! It's commonly known that all first degree relatives should be automatically tested. I recently brought my 11 yr old son in to specifically get the celiac blood test because my husband is an undiagnosed celiac/gluten intolerant person. My son was having some health issues going on and my ped was on board (seemed barely) but she did it and his test came back a "weak" positive and the nurse called to tell me she wants him to see a ped. GI doctor. I called a few days later to ask about getting my girls tested and she did so without an appointment.

If you don't need a referral to a Ped. GI doctor I'd probably just go ahead and make an appointment with one of them. Otherwise, just call various pediatricians inquiring that you are looking at switching peds because they won't test your son for celiac when you yourself have it. You are bound to find someone to do it. Good luck!

Maybe someone else here knows a specific name for the celiac blood test. I know the one my ped did was the INOVA Quanta Lite...it tested deamidated gliadin peptide IgA/IgG, Transglutaminase IGA and total IgA.

Hi Parents,

I was just diagnosed after a lifetime of dealing with Celiac and not knowing it (I was strong, fought it off well until after baby). My 6 yr old seems to be showing signs, and now I want to get him tested. But when I brought it up with our low-intervention Pediatrician, they didn't seem very interested in appeasing me. So they clearly are not on board with checking this out, and I don't know if they would do correct tests anyway. So do I go in to them armed with the EXACT tests I want performed (suggestions welcome), or do I research a Ped in NYC (we're lucky to be in big city) that has a focus on Celiac and might be better about testing? I don't want to mess this up (and he is deathly afraid of needles, so this will be horrible as it is!) because I want to know and get him on a path to better health. If I just pull him off wheat and have him eat with me, it will be a lifetime of not knowing for sure, just being told by his crazy mom. You know.

Thanks for any advice...and if you know the specific tests I need to ask for, that would be super helpful.

slee11211 Apprentice
slee11211
Posted
  • Author

I'm really shocked that after your diagnosis that your ped. wasn't on board with testing him. Time to find another ped! It's commonly known that all first degree relatives should be automatically tested. I recently brought my 11 yr old son in to specifically get the celiac blood test because my husband is an undiagnosed celiac/gluten intolerant person. My son was having some health issues going on and my ped was on board (seemed barely) but she did it and his test came back a "weak" positive and the nurse called to tell me she wants him to see a ped. GI doctor. I called a few days later to ask about getting my girls tested and she did so without an appointment.

If you don't need a referral to a Ped. GI doctor I'd probably just go ahead and make an appointment with one of them. Otherwise, just call various pediatricians inquiring that you are looking at switching peds because they won't test your son for celiac when you yourself have it. You are bound to find someone to do it. Good luck!

Maybe someone else here knows a specific name for the celiac blood test. I know the one my ped did was the INOVA Quanta Lite...it tested deamidated gliadin peptide IgA/IgG, Transglutaminase IGA and total IgA.

and did you just do blood tests on your kids, or did you go for biopsies?

carecare Enthusiast
carecare
Posted

I have chosen not to do biopsies on my kids. It was considered...but in the end I could not foresee putting my 11 yr old through another 2 or more months of suffering (to wait stop eating gluten until a biopsy was done) when it could end now. I am very content with my decision because within days his mouth sores disappeared and his muscle pain is getting less with each day that passes (only day 6 of gluten free for him). His deamidated IgG was high and the IgA low...having that high IgG and the other low was such an indication (what did I hear that 98% of people testing positive on that test are indeed celiac)...so that was good enough for me to believe it was the gluten...and that he does have celiac.

So for us the blood test is going to be sufficient.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Hi Parents,

I was just diagnosed after a lifetime of dealing with Celiac and not knowing it (I was strong, fought it off well until after baby). My 6 yr old seems to be showing signs, and now I want to get him tested. But when I brought it up with our low-intervention Pediatrician, they didn't seem very interested in appeasing me. So they clearly are not on board with checking this out, and I don't know if they would do correct tests anyway. So do I go in to them armed with the EXACT tests I want performed (suggestions welcome), or do I research a Ped in NYC (we're lucky to be in big city) that has a focus on Celiac and might be better about testing? I don't want to mess this up (and he is deathly afraid of needles, so this will be horrible as it is!) because I want to know and get him on a path to better health. If I just pull him off wheat and have him eat with me, it will be a lifetime of not knowing for sure, just being told by his crazy mom. You know.

Thanks for any advice...and if you know the specific tests I need to ask for, that would be super helpful.

I got the same response from my GP....her words were "If he doesn't show any signs, I wouldn't worry about testing him". Ummmm, I don't think so, lady!! Every first degree relative should be screened for Celiac. Period. And every Celiac presents with different symptoms, so just because he doesn't have the "typical" symptoms does NOT mean that he isn't Celiac! Uggh...the ignorance amongst the medical community is so frustrating. :angry:

I would save youself some frustration and try to find a ped GI doc who is experienced with treating Celiac kids. At the very least he should test for the DGP ABS, tTG ABS and total IgA. Also if your insurance covers it, get him tested for the genes HLA DQ2/DQ8, to see if it is even possible for him to have Celiac (if he tests negative for the genes, he cannot have Celiac).

My plan is to get my son blood tested (he is deathly afraid of needles, too, so that should be fun). I will probably have him scoped if the test is positive, because I want him to have concrete proof that he has a disease, and it's not just his neurotic mom keeping him from eating the cookies. :unsure:

Roda Rising Star
Roda
Posted

Our pediatrician refused to order the blood tests after I was diagnosed. We were already seeing a pediatric allergist/immunologist for both of the boys so all it took was a phone call and an explanation and the order was faxed no questions asked. You could go in with all the information and present it to the pedi and if they still refuse, definately find another doctor!!

Oh, just FYI for all of you that have kids afraid of needles. My oldest son went for his scope yesterday morning and they put on this numbing patch on his arm before starting his IV. He isn't really afraid of needles, but it was their procedure. It worked great as he said he didn't feel it.

carecare Enthusiast
carecare
Posted

pain*in*my*gut...I've seen over and over people saying that even if you don't have the genes that say you might be predisposed to celiac you could still have it. I am sure there was someone on another thread that didn't have the genes but tested positive for celiac. The genes might just help you come to a better conclusion and understanding if you actually have them. If you don't...I don't think it excludes you from having or eventually getting the disease.

Roda...I sure wish the numbing stuff was used more often. Even the dentist uses a numbing gel before giving a shot. I also remember an oral surgeon's nurse I think it was (for my daughter getting her teeth pulled)...squirting cold water on the skin. I guess that helps sort of numb the area too before drawing blood.

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Roda Rising Star
Roda
Posted

pain*in*my*gut...I've seen over and over people saying that even if you don't have the genes that say you might be predisposed to celiac you could still have it. I am sure there was someone on another thread that didn't have the genes but tested positive for celiac. The genes might just help you come to a better conclusion and understanding if you actually have them. If you don't...I don't think it excludes you from having or eventually getting the disease.

Roda...I sure wish the numbing stuff was used more often. Even the dentist uses a numbing gel before giving a shot. I also remember an oral surgeon's nurse I think it was (for my daughter getting her teeth pulled)...squirting cold water on the skin. I guess that helps sort of numb the area too before drawing blood.

Ravenwoodglass has celiac and does not have the "typical" genes associated with it. Maybe she can chime in. Yes it is possible to have celiac without those two genes.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

pain*in*my*gut...I've seen over and over people saying that even if you don't have the genes that say you might be predisposed to celiac you could still have it. I am sure there was someone on another thread that didn't have the genes but tested positive for celiac. The genes might just help you come to a better conclusion and understanding if you actually have them. If you don't...I don't think it excludes you from having or eventually getting the disease.

Roda...I sure wish the numbing stuff was used more often. Even the dentist uses a numbing gel before giving a shot. I also remember an oral surgeon's nurse I think it was (for my daughter getting her teeth pulled)...squirting cold water on the skin. I guess that helps sort of numb the area too before drawing blood.

carecare....it is highly unlikely that you will develop Celiac disease if you do not have the DQ2 or DQ8 gene (OR the sub-units of the DQ gene, and many labs do not test for the sub-units, hence the "negative genetic test"). You can have gluten intolerance without the genes, but not Celiac (in 99.9% of cases). Here is a good link about the genetic testing:

https://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html

And about the blood draw for kids....my little man is not so much afraid of the pain, it's the whole idea of getting blood drawn or shots. Do any docs recommend a sedative/anti-anxiety med before a blood draw? I hate the thought of drugging my kid, but he is just so terrified!! He is going to be a nut case, and I don't want to lie to him about getting tested, but at the same time, I don't want him to have a panic attack, either (he did last time we tried to get a finger stick). :o

carecare Enthusiast
carecare
Posted

Really good article explaining the gene testing. Thanks. According to the article men are more likely to still get celiac even without the genetic markers. Interesting.

heathen Apprentice
heathen
Posted

There is a brand new review of Celiac Disease in the Annals of Internal Medicine that recommends testing in 1st degree relatives of people with a new diagnosis of Celiac Disease. Your doctor should have access to this medical journal, or at least know someone who does. You might want to pass this info along. Biopsy is still the gold standard for diagnosis, but the antibody test (if they draw the right ones) is gaining more ground.

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