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. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

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

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748

    Jadelucia
    Newest Member
    Jadelucia
    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

    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.