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

Do Your Kids Have It, Too?


GlutenNoMore

Recommended Posts

GlutenNoMore Newbie

I am still waiting on my results, but my doctor has already put me on a gluten free diet two weeks ago today. She's certain. Since then, I found out my sister does have celiac and now my mom and grandma are being tested. The majority of the immediate family members have 'stomach problems.'

I took my son in today to get tested, and I guess I was the 'paranoid' parent. Whatever. I'd like to know if he's gluten intolerant so he doesn't get as bad as I or my sister did. The doctor names of the 'typical' symptoms (limp, underweight, etc), and I explained to her that both my sister and I didn't have the typical symptoms. I am overweight (so is my son). She only drew blood for the one test, I forgot which one, and refused to draw for the vitamin deficiencies, as my doctor did for me.

After reading how unreliable just doing one blood test is, I am certain it's going to come back negative. Do many of you guys that are celiac/gluten intolerant have kids that are the same? I don't know how far to push it with this doctor, but, it may come down to just taking him to my doctor, a wonderful lady I found a month ago that actually listened to me. It is sad, as he has been seeing this doctor since the day he was born in the hospital, 13 years ago..

It would be easy for me to feed him gluten free and forget about all the tests, except his father won't follow it on the weekends unless there's doctor's orders.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Go to the univ of Chicago Celiac ct web site. They have Fact sheets you can print and show the doctor. They recommend every first degree relative ( bro, sis, parents & children) be tested and list the tests that need to be run.

My teen boys just tested negative. They have no symptoms.

ravenwoodglass Mentor

Both of my children showed a low positive on tests. Both were symptomatic. If your children have symptoms be sure to try them on the diet after all testing is done as children have an even higher rate of false negatives than adults do.

kpryan Apprentice

Did you go to a gastro for yourself? If so, you could prob bring your child to them...that's what my gastro said. It sounds like you like your doc so I would go that route or ask them for a recommendation for your child. The fact that their doc seems reluctant would make me want a 2nd opinion esp with such a family history.

Good luck!! I am getting tested (and went through a gluten challenge) mainly for my kids. I know I do better without gluten but I want to know if I have Celiac so my girls could be screened too....good luck!!!

GlutenNoMore Newbie

Did you go to a gastro for yourself?

I recently found a wonderful family doctor. She sat down and LISTENED to me. I originally went to get my thyroid checked, but I was having so much abdominal discomfort for a couple of weeks preceding the appointment, she concentrated on that, and tested me. I am anxious to get my test results, for that and the thyroid.

I brought a list of blood tests with me, but my son's dr was not interested. He doesn't have any MAJOR symptoms, but he's where I was at his age stomach wise... minor issues. If there is anything, I'd like to know now before it gets worse.. if that's possible.

The dr said they are testing for the one thing, but they did take 3 vials.. so I don't know if she changed her mind later. I'll go up there and get a copy of the results once they're in.

Emilushka Contributor

I recently found a wonderful family doctor. She sat down and LISTENED to me. I originally went to get my thyroid checked, but I was having so much abdominal discomfort for a couple of weeks preceding the appointment, she concentrated on that, and tested me. I am anxious to get my test results, for that and the thyroid.

I brought a list of blood tests with me, but my son's dr was not interested. He doesn't have any MAJOR symptoms, but he's where I was at his age stomach wise... minor issues. If there is anything, I'd like to know now before it gets worse.. if that's possible.

The dr said they are testing for the one thing, but they did take 3 vials.. so I don't know if she changed her mind later. I'll go up there and get a copy of the results once they're in.

YAY! That doc is like gold. Don't lose her. :-)

luvs2eat Collaborator

I was diagnosed at about age 48. Middle daughter was diagnosed about 4-5 years later at about age 26. Youngest daughter was diagnosed about 3 years after that, also at age 26. Oldest daughter (32) was just diagnosed a few months ago after 6 mo. of aggressive chemo for breast cancer.

Youngest is having the hardest time w/ it... she also had issues going on that have been thought to be interstitial cystitis, vestibulitis, and vulvodynia. She has many, many food intolerances... she was down to about 10 foods she could tolerate, but is very slowly finding answers (a hiatal hernia and several ulcers!) and is just starting to bring some foods back.

At least they all like to cook and were very familiar w/ celiac cooking, so it's been easier for them than others, I'm sure! We were never huge convenience food people, so they've not as upset about not being able to eat fast food.


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



Celiac.com Sponsor (A8-M):



GlutenNoMore Newbie

YAY! That doc is like gold. Don't lose her. :-)

Unfortunately, soon as husband's deployment is over, I'm moving out of state to where he is stationed.. Already having anxiety about losing a great doctor..

GlutenNoMore Newbie

At least they all like to cook and were very familiar w/ celiac cooking, so it's been easier for them than others, I'm sure! We were never huge convenience food people, so they've not as upset about not being able to eat fast food.

You know, this transition has been fairly easy for me, too. Although I miss beer and have not tried the gluten free kind yet.

I rarely went out to eat in the first place, no fast food, and read the labels on everything I ate (no dairy, nothing artificial, no corn syrup or corn, soy, etc), so this is just another thing I have to watch for. Most of my meals get cooked at home from scratch, as always.

T.H. Community Regular

My daughter tested positive after I was diagnosed, and her symptoms were exhaustion and difficulty with depression, low frustration tolerance, anxiety. I'd probably add in congestion and getting sick a lot on top of that. She was overweight as well.

My son tested negative, but he had a bloated belly, very small stature, and anger issues.

We took them both off gluten, and both of them showed improvement, so I'd say even if it tests negative, might be worth taking your little one off gluten to see if there's a change. Also, he should be tested periodically, if you don't take him off gluten, because it can trigger at any time, and a growing part of the celiac population is the asymptomatic celiacs.

And sorry that your doctor has never looked at celiac disease since he went to med school. The text books in the States were only changed a few years back to reflect the current knowledge. You may want to let him know that the previous knowledge on celiac disease - both the symptoms and the prevalence in the population - are different than there were about 5 years ago.

Not that he'll likely listen, sadly. :( Honestly, if your son tests positive? I'd still find another doctor. This one likely won't know what to keep an eye on, either.

Archived

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

  • 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. - Jmartes71 replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

    2. - Wheatwacked replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Have Tru Joy Sweets Choco Chews been discontinued??

    3. - Theresa2407 replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

    4. - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Have Tru Joy Sweets Choco Chews been discontinued??

    5. - Scott Adams replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,263
    • Most Online (within 30 mins)
      7,748

    Fruitypebbles
    Newest Member
    Fruitypebbles
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets for disability because I show no signs of celiac BECAUSE IM GLUTENFREE! Actively dealing with sibo and skin issues.Depression is the key because thats all they know, im depressed because medical has caused it because of my celiac and related issues. I should have never ever been employed as a bus driver.After 3 years still healing and ZERO income desperately trying to get better but no careteam for celiac other than stay away frim wheat! Now im having care because my head is affected either ms or meningioma in go in tomorrow again for more scans.I know im slowly dying and im looking like a disability chaser
    • Wheatwacked
      M&M Peanuts. About the same calories and sugar while M&M Peanuts have fiber, potassium, iron and protein that Tootsie Rolls ("We are currently producing more than 50 million Tootsie Rolls each day.") don't. Click the links to compare nutritional values.  Both are made with sugar, not high fructose corn syrup.  I use them as a gluten free substitute for a peanut butter sandwich.  Try her on grass fed, pasture fed milk. While I get heartburn at night from commercial dairy milk, I do not from 'grassmilk'.     
    • Theresa2407
      I see it everyday on my feeds.  They go out and buy gluten-free processed products and wonder why they can't heal their guts.  I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field.  Some days I would just like to scream.  So much better when we had support groups and being able to teach them properly. I just had an EMA blood test because I haven't had one since my Doctor moved away.  Got test results today, doctor ordered a D3 vitamin test.  Now you know what  type of doctors we have.  Now I will have to pay for this test because she just tested my D3 end of December, and still have no idea about my EMA.    
    • Scott Adams
      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
×
×
  • 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.