Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Where Do I Start?
0

5 posts in this topic

When my son was 4mo. old I sought help on-line for his fussiness/gas/liquid stools. My pediatrician tested for lactose intollerance and said he was positive. Going dairy-free did not improve things. After much research we tried gluten-free and dairy-free diet. His condition improved greatly. He is now 17months old and my MD is advising we go through the testing to prove celiac disease. Where do I start? What will I have to subject my son to? Will he have to have gluten before the testing? (My MD says yes but I am so fearful of the results). Any advise??

0

Share this post


Link to post
Share on other sites


Ads by Google:

If all of your son's problems have resolved I personally think you have your answer. However, when he gets to school you might need certified proof to get cooperation from the school officials.

The bad news is your son would need to eat gluten every day for 8 to 12 weeks to make sure you get an accurate test. Even then the bloodwork could come out negative and then your doctor might start trying to tell you he doesn't have it. Tough choice.

richard

0

Share this post


Link to post
Share on other sites

Have you considered genetic testing? I would recommend testing through Enterolab, since it is cheaper for the gene test, and they also test for other genes related to gluten intolerance, and not just Celiac Disease. We have two of each in our family(so far, my husband hasn't been tested yet), two Celiacs and two who are gluten intolerant without Celiac. Check with your doctor if this would be acceptable for a diagnosis, since you don't want to put your son back on gluten. It can sometimes take years to get enough damage to prove Celiac through blood tests/ biopsy, and I doubt you would want your child to have to suffer through his childhood.

Check out Enterolab. http://www.enterolab.com

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

Thanks for the info. I will check out the genetic testing. We are changing insurance so cannot make any new appt. untlil after July 1. My ped. thinks I am nuts anyway. My son remains well above 50th % for growth, so in his eyes, does not fit profile for celiac. Friends and family also think I am nuts which is why I was hoping some kind of positive test results would validate my mother's intuition. Thanks for your time!

0

Share this post


Link to post
Share on other sites

At Enterolab you do not need a doctors order for the tests. You can order them yourself. Also, most insurance won't pay up front for it, you have to pay out of pocket, but some insurance will reimburse you after the fact. You might want to check with your new insurance when it goes through.

My kids were never really "underweight", although I could see how little they were growing and how much smaller they were compared to their friends and classmates. We probably would never have known they had a problem, except I pushed for testing for myself, and for them. I have the problem of being overweight and my GI doctors all thought I was crazy to think I was Celiac. I do admit I was probably at the early stages of damage, but the symptoms were unbearable! Most doctors are still looking for the end result of years of damage to the intestine, when we know now that it can be diagnosed at an earlier stage and you will be able to heal much quicker. I was not willing to wait until I was half dead, knowing that gluten was my problem, just to get an "official" diagnosis from a doctor. It is my choice to feed my family a gluten free diet, and the Enterolab tests helped me to know I was doing the right thing.

My kids are growing rapidly now (my middle child gained 5 lbs and 3/4 of an inch in less than 2 months on the diet! He just turned 8) and I'm sure their GI doctor will be surprised when they go in for a checkup. They do not have an official diagnosis as their blood tests come back inconclusive, yet their Enterolab results show positive antibody levels to gluten, and the genes to back up either Celiac (for two of us) or gluten intolerance (for the other two).

I hope you are able to get your answers quickly.

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,902
    • Total Posts
      919,564
  • Topics

  • Posts

    • Johnny Carinos
      If you cant be sure then don't eat it!  
    • Gluten does WHAT to the brain?
      I'm ok, just a little tired right now.  Lots of stress getting elderly parents and in-laws taken care of. My thyroid took a dip low (no surprise there) so I had to increase dose by a quarter grain. Overall, I am not dragging all day but waking up and getting going in the morning is slowwwwwwwww.  I'm sure you understand that! Yeah........Barty.  I thought of her for DAYS on end and it just saddens me to no end that such good people are the ones being taken.  Sometimes life is just so unfair. We all know that but there are times when it really hits you in the gut. There are times I think they are the lucky ones with the way the world is going these days. This terrorism plague is unnerving and I am really getting mad about it. Dear God, please stop this shyte!  I also miss nvsmom and others who have not been heard from. I hope she is feeling better and is just busy with life.  I got glutened on vacation about 6 years ago on the first day in Liverpool.  Jeez, was I sick!  I know how you feel but take heart........that was the last time I was bagged on vacation.  The longer you are gluten free and heal, the faster you recover from hits. You also get very good at not being glutened. It has been almost 2 years since it happened to me last so after 11 years gluten-free, I think I am doing well with that. I still have a little work to do with the vitamin D levels but I work so seeing much sun isn't happening.  My levels have doubled but they are still under 50. This whole Celiac thing is a part time job!
    • Test Results
      Hang in there SLLRUNNER...it is hard and frustrating.  Good job getting that appointment moved up.  I've done too...I've called daily looking for cancellations.  I can also remember counting down the days until my appointment.  ((((Hugs)))) and please let us know how it goes.
    • So I've been glutened....
      Miso soup has gluten in it, doesn't it? =/ I know that I've been avoiding it, which is a big shame because I adore miso!
    • Kissing and gluten
      Hi guys. I know this is a topic that has come up before, but I'd appreciate a little bit of advice. I've been 'courting' a guy for the past few months; nothing has happened yet but we have a proper date in a few weeks which is likely to lead to kissing. He didn't even know what a ceoliac was until a few days ago; I don't think he'd caught the hints that I'd been dropping beforehand. English isn't his first language - he's east Asian. Anyway, I've heard about being potentially glutened via a kiss. How do I broach this? I don't want to scare him off or make him think that I'm a lot of hard work; I know, I know, he's going to have to accept me as I am, etc. but for someone new to the entire thing, it is likely overwhelming. It would be for me if I'd never heard of it! Do I laughingly bring it up beforehand? We aren't going for food so if he isn't eating, just having a cup of tea, will I still need to be careful? If this seems safe, do I just let him kiss me and then bring up afterwards that any future kisses after food will have different precautions?  It all feels so clinical! He's a lovely guy so I do think he'll be understanding, but if anyone has any advice of first hand experience on how to approach the topic without it being a weird moment, that would be great.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,948
    • Most Online
      1,763

    Newest Member
    VER
    Joined