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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Need To Test 6 Yr Old...do We Go To Regular Ped?
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11 posts in this topic

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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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.

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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?

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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.

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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:

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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.

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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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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.

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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:

http://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

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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.

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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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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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