Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Help


confused

Recommended Posts

confused Community Regular

Ok here is the rundown of the kids

age 7, short and chunky, mood swings, floating poop, stinks, stomach hurts from time to time

age 6, tall but skinny, teeth problems, floating poop

age 4, fine in heigth and weight, but gets rashes and stomach hurts from time to time

age 3, short but chuncky, mouth sores, rash on side of mouth, rashes on butt and front, lots of D, hardly ever formed, and poops alot.

The dr said she would test any or all of them for celiac.

One good thing tho with the my 14 yr old, he has gained 5 pounds and grown 2 inches since we started the gluten free diet with him. He was still upset that he was still small but i think he is doing great since only a few months since finding out he was celiac.

So do you think i should just test all of them, or not test? I am so torn on what to do.

paula


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



Celiac.com Sponsor (A8-M):



Guest j_mommy

I would have them all tested or if you think they have celiac and a DR dx is not important too you, start them all on the gluten-free diet. It sounds like they all have some type of symptom. Personally, I would get them all blood tested...simple and easy to do!

confused Community Regular
I would have them all tested or if you think they have celiac and a DR dx is not important too you, start them all on the gluten-free diet. It sounds like they all have some type of symptom. Personally, I would get them all blood tested...simple and easy to do!

thank you for oyur reply, i think you are right, i think its best just to test them all now, instead of just doing one or 2 now, since they all have some symptoms.

paula

Guest j_mommy

Good Luck!!!

I would definetly take someone withyou if you're going to take them all at once, that way you can comfort them. My little guy is 2 1/2 and that was hard for me and he didn't like it at all, but I am glad I did it!!!!

Juliet Newbie

The only problem with testing them at least with the full serological blood panel is that they have to be on gluten (for an adult, equivalent to 2 pieces of wheat breat a day) for 2-3 months to get a halfway accurate result. And even then, it can miss some people. It sounds like you already started the diet, so I don't know if you want to put them back on it.

You can see if they have the gene for it whether or not they have gluten; however, that won't necessarily mean they have the disease. Enterolab does fecal testing where a person does not have to be on gluten to get accurate results, but the overall American medical community has not yet accepted the validity of these tests.

confused Community Regular

My 14 yr old and I are gluten free. My other 4 are not gluten free. They still eat donuts, pixxa, chips and other gluten food. The only thing they eat gluten free is dinner since I cook it. But they will have a gluten dessert. I have actually been letting them eat lots of gluten the last few weeks, in case i decided to go ahead with the bloood test. They still eat sandwhiches for lunch also. Plus all the snacks they have had in tball and baseball this summer.

I had really thought about enterolab, but spendind 400 an kid right now is not possible. i do know i could maybe do an 99 dollar test, but im not sure on which one i would do. I was also talking to my hubby earlier and he said maybe we could still do the gene testing threw enterolab depending on what the blood test would say. The thing is i do not have the celiac gene but tested postive threw blood and enterolab test and I have DH, so im not sure how accurate doing the gene test would be.

I am just so lost on what is best. I know i could just put them on the diet, but I would like some sort of confirmation for putting them on the diet.

paula

Guest j_mommy

Getting the actual DX through a Dr was important to me.

One other plus to getting a dx on a child instead of just doing the diet is, that later when/if they start to question this, you can say that they've been tested and for sure have Celiac(if that is the case, if you choose to test them).


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



Celiac.com Sponsor (A8-M):



confused Community Regular
Getting the actual DX through a Dr was important to me.

One other plus to getting a dx on a child instead of just doing the diet is, that later when/if they start to question this, you can say that they've been tested and for sure have Celiac(if that is the case, if you choose to test them).

Exactly, and for school reasons. Three of the 4 will be going to private school this yr at the same school, and i wanted to know before i put them im school. One of my 6 yr olds son teacher has celiac so i know they will know what to do with them.

Im waiting for the dr to call me back and let me know she has the script then i will take them down tommorow or monday for the test. I know it is best for them to find out while they are young, then wait til my age or even my 14 yr olds age when it is so hard to deal with it.

Even if the test come back negative i will retest them every 1 or 2 yrs.

thanks for all your help to let me know im doing the right thing

paula

confused Community Regular

Ok i just talked to the dr and she feels that blood work is not that accurate with kids, so she wants me to just do an food diary and see what makes the kids feel better. She said since my 14 yr old only had high IgG but tested positive threw enterolab that it wont be accurate for the kids either. But if i really wanted to do it she would do it. But she felt my best bet was to go threw enterobal for them to. but i know i cant afford the whole test for all of them, and im not sure how accurate the 99 dollar test would be. So now i really dont know what to do.

What do my experts here think lol

paula

April in KC Apprentice

Your six and seven-year-olds may be old enough to test through standard blood work. Our six-year-old came back cleanly positive to AGA-IGA, AGA-IGG, Reticulin and Endomysial Antibodies (EMA) - every test in the Quest/LabOne Celiac panel. His 3-year-old brother and infant brother (both symptomatic) came back negative. So, in our family at least, 6 was old enough.

April

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,164
    • Most Online (within 30 mins)
      7,748

    VGL
    Newest Member
    VGL
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...