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

Children Tested?

CarolinaKip

By CarolinaKip
in Doctors

Recommended Posts

CarolinaKip Community Regular
CarolinaKip
Posted

I've been trying to communicate with my children's doctor's about having them checked for celiac.. I finally got word this morning that he said "Celiac is asymptomatic and as long the children have no weight loss, pain etc there is no need to test them" They don't have alot of symptoms like those, but my son is ADHD, my daughter gets a lot of headaches and had ecsema early childhood. I feel at the end of the day I am trying to prevent them from getting as sick as I am now. I want them tested. What do you all think here? I am new to this and wondering.

Wanted to share what my dentist said to me during my last visit. I wanted to know if the toothpaste was gluten free. They couldn't tell me. The dentist said "you're not going to ingest it and it's just trace amounts if it is" It was clear he had no clue about celiac. I told them "surely I am not the only celiac you have here??!

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Go to the University of Chicago Celiac Center website. There are fact sheets. One talks about testing children of a Celiac and what tests to get. I printed it and took it to my pediatrician.

Roda Rising Star
Roda
Posted

My kid's pediatrician REFUSED to test my children. I was so mad that I scheduled an appointment just to talk to him. I was going to go in armed with information and articles. My husband ultimately convinced me not to go and to ask my kid's allergist/immunologist (he also knew that I would be very confrontational). All I had to do was get on the phone and explain why I was requesting testing. Without any hesitation an order was faxed to the lab and my kids got their screening. Now was that so hard? Evidently it was for the pediatrician. I would love to find a different ped but unfortunately there isn't any other locally that I want to take them to. My oldest had chronic tonsillitis and strep so much that by the age of 4 he had his tonsills/adnoids out. He was good for about 6 months and then constant sinus infections. I finaly got frustrated with the ped and self reffered to the allergist (when he was 6 ) my youngest one was seeing. A month later I bring his allergy serum to the local peds office so he can get his weekly allergy shots (allergist was 70 miles away) and the doctor was floored. Also my youngest one had alot of problems when he was a baby so I insisted he refer us to an allergist at his 1 year check up. After our first appointment the specialist said to us "why wasn't this kid sent here much sooner." That really bothered me. All that time wasted farting along at the peds. Water under the bridge, but the celiac has taught me that I need to advocate for myself and my kids because if we don't who will? Both my kids are doing great and my youngest is the healthiest one now. I now make it a point to see the nurse practitioner in the office. I recently found a new PCP and I'm considering asking if she will take children.

Emily35 Newbie
Emily35
Posted

I know exactly how you feel. I am newly diagnosed and sometimes I feel like there is nothing I can do to make other people aware of how serious this condition is... As far as toothpaste goes, all Crest toothpastes are gluten free, I am not sure about others...

As far as getting kids tested-I hear you. I am going through the same thing... Even my family (I have MDs in my own family!!!!) think I am crazy that I am so adamant to get kids tested for celiac because it is an "autoimmune disorder and NOT genetic"... But on the otehr hand, everyone thought I was crazy when I was having very vague symptoms and until I got so sick that I stopped eating altogether and lost 15 lbs nobody toom ME seriously. I am sorry, I cannot provide any sound advice, but I'd say go for what you believe!!!! Only YOU know what is BEST for your chldren and you cannot be overprotective when it concerns their health.

LDJofDenver Apprentice
LDJofDenver
Posted

Sheez, then why are children diagnosed by the age of 2 in Italy? Uninformed doctors can be very frustrating.

I'd do what is recommended above and print out information from various Celiac sources and centers and take that to your doc.

Some celiacs are asymptomatic but that does not mean damage is not being done.

ftmomma Rookie
ftmomma
Posted

My children's dr told me the same thing this week since I "only have 1 of the genes -DQ2- its unlikely that they would be predisposed too"? HUH????? that is totally incorrect information. I was caught off guard when I talked with her. She says if they aren't having symptoms, no need to get tested. I have a 4 yr old and a 1 yr old. Everytime they want waffles or a pbj sandwhich (on whole wheat) I can't help but feel like I might be poisioning them. Ugh. I'd really like to get them tested anyway. I think if I insist, their dr will order the labs. If not, I'll be shopping around for another dr.

kareng Grand Master
kareng
Posted

My pediatrician thought it might be a good idea to blood test every year or 2 even if negative and no symptoms. I just took the Chicago fact sheet to make sure we get the right ones taken.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Posts like these make me so sad and so mad. My DS was diagnosed with failure to thrive at a year. He had dropped from the 65th percentile at birth to the -10. He weighed at a year 2 lbs more than his sister did at birth. They tested him for everything but celiac. Both of my kids were sick their entire childhoods and the ped said that they both didn't like school and the stomach problems were just because they didn't want to go. My kids weren't tested until their teens when I was finally diagnosed and both had positive bloodwork. Unfortunately they weren't diagnosed soon enough for my son to ever reach anywhere near his full height. Oh and these kids who 'just didn't like school' are both been overachievers in college and one even got 2 bachelors degrees before age 24. Doctors are so ignorant in this country when it comes to celiac.

If you suspect there is an issue demand testing. If your child has any symptoms, even stuff like ADD, ADHD or moodiness give the diet a shot. If you can get them tested first do so, if not just try them on the diet. It could make a big difference even if they come out negative with the blood tests and 'gene' panels or your doctor refuses to test.

CarolinaKip Community Regular
CarolinaKip
Posted
  • Author

Thank you for your replies. I am going to have them tested. I'll print off what tests they need. Their doctor told he would do if I wanted it, but I think he still thinks I don't know what I'm doing. My daughter is moody at times and my son started telling me he just didn't feel right after eating. That started about a week ago. He said he didn't feel pain,. but like he had eaten too much and was going to be sick. He is 17. Thanks for the info, it's a big help!

  • 2 weeks later...
macocha Contributor
macocha
Posted

Hmmm...I told the kids' ped that the GI doctor wanted them tested and he would have to order the tests and which ones. No flack from him. Also told him every couple years they need to be retested. I think I am fortunate in that regard.

I cannot believe :o that some of your doctor's will not test. They don't have to have symptoms to have celiac.

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.