Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

slee11211

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,696
    • Most Online (within 30 mins)
      7,748
    Knotalota
    Newest Member
    Knotalota
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.