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lil voice

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lil voice Newbie
lil voice
Posted

Hello - I'm new here & am overwhelmed. I'm sure what I'm going to post is probably on the board somewhere, but I haven't got the energy to look (not because I don't care - I most definitely do). I just need pointed in the right direction, I guess.

My son is 22 months old & probably has celiac. It's been a long, rough, tiresome journey & beyond frustrating. I'm sure others of you can relate all to well. Anyway, I'll get to the point.

His GI doctor wants to test him for Celiac, wants to wait until he's older because of how very sensitive his system is. He also informed us that our son will have to have gluten in his diet for at least 2 months prior to doing the test.

Small snapshot - we took him off gluten/casein when he was 10 months old & had only had it for about 3 months. We figured out on our own that it was BAD for him. He was having developmental delays and even started regressing. The docs we saw all thought we were being too extreme & unnecessarily making our lives harder than need be. After only 3 weeks he started having huge improvements. If we hadn't seen it with our own eyes, we wouldn't have believed it. But that's a completely different story... I won't go there now.

So, we with every fiber of our beings, do NOT want to put our son through the misery of having gluten back in his diet. No way, no how. I've scratched the surface of our story & my limited reading so far shows that there are other tests available.

Can anyone tell me about the tests available for testing celiac. My husband & I heard that we could get tested to see if we have the genetic markers. What test is that? How reliable is it? And will it help us get a diagnosis for our son without him having to ingest "poison"?

I really appreciate any feedback or help with this.

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happygirl Collaborator
happygirl
Posted

Your doctor can order the genetic tests for Celiac. Having the genes does NOT equal having Celiac. About 1/3 of the American population has one of the genes, but less than 1% of Americans have Celiac.

You can ask your doctor to order:

HLA DQ2 and HLA DQ8

You do not have to put your child back on gluten. Your doctor can want you to, but you don't HAVE to.

You may want to find a local support group to provide referrals for doctors in your area who deal with Celiac.

ShayFL Enthusiast
ShayFL
Posted

I agree that you do not need a doctor's permission to keep your son gluten-free.

If your doctor will not order the genetic test, you can use Enterolab or Kimball (pay out of pocket, but dont need a doctor's order).

Congratulations on getting your son well!!

sbj Rookie
sbj
Posted

Hi Li'l Voice:

Perhaps you could write a bit more about your story so that the smart ones here can provide a bit more help. Your post confused me a little bit - probably because you had to leave out some detail. Please come back and provide the detail - we're interested!

Why are you seeing a gastroenterologist right now (at 22 months)? It sounds like you stopped gluten at 10 months and it helped. So what is happening right now even after being off gluten? I am concerned that he is still having problems even after being off gluten for a year. And I don't understand why your doc wants to test for celiac when he is having other problems. Maybe the doc wants to do an endoscopy to look for other things and would like to check for celiac at the same time?

If I were you I would tell your doctor, "We took him off gluten already. I don't care if he has celiac - I want to find out what's bugging him now! Because it ain't gluten!"

What kind of test does your doc want to do? Is he telling you that a blood test is too much for the little one? Or does he want to do an endoscopy? A blood test coupled with positive reaction to the gluten-free diet is enough for a celiac diagnosis - there should be no need to perform an endoscopy for a diagnosis.

You never have to let your son eat gluten again. Don't let this joker boss you around when it comes to your child's health!

The problem with testing outside of your own doctor is that you probably won't get an 'official' diagnosis. I believe someone else already wrote, a positive test for the genetic markers won't tell you if your son has celiac disease. The other testing available from Entero won't diagnose celiac disease, either. At most I think that either of these tests are going to tell you that your son has the genetic capabiity for celiac or has gluten intolerance.

But you already know that your son has gluten intolerance, right? So why not save the money?

lil voice Newbie
lil voice
Posted
  • Author

Just checking in & actually on my way out the door. I appreciate the comments so far & would be happy to give you my son's unabridged story - I did leave out quite a lot. For right now I'll try to hit more of the highlights.

Loads of allergies suspected - 3 skin prick tests & on 4th allergist, who I finally like. She explained that even though his test didn't show reactions YET, she thinks he's highly allergic to many things & when he's 4-5 years old we'll be able to tell better (with more exposure build-up). She recommended the GI doc route because she suspected celiac or some other gi issue.

GI doc based on my very detailed notes & his examination doesn't think it's any kind of inflammatory issue with the gi. He strongly suspects celiac is the culprit.

My son has only truly been gluten free for about a month - we missed some hidden sources like medications, just lack of knowledge on our part and no professional help until recently. My son also was ingesting large quantities of rice milk as his dairy from 10 months until 15 months - that with a lot of digging we were able to find out had loads of barley in it & not labeled! As soon as we stopped the rice milk his "seizure-type" activity stopped.

GI doc said he had to have gluten in his diet for 2 months prior to test to get more reliable results. He said it was a blood test. And depending on the results of that an endoscopy would need done.

Still leaving out tons of details, but hope this helps more. When we read the symptoms for the disease, it seems to fit like a glove... and it was our gut thought to the initial problems that started.

For doing the HLA tests - that would be my son doing them not us? Is it reliable with him already being gluten free?

Thanks again for the input.

happygirl Collaborator
happygirl
Posted

Gene testing would be your son, correct.

Genes are not affected (in terms of testing) by being gluten free or not. You either have none, one, or both. About 95%+ of those with Celiac have one or both of the genes.

TracyB Apprentice
TracyB
Posted
Just checking in & actually on my way out the door. I appreciate the comments so far & would be happy to give you my son's unabridged story - I did leave out quite a lot. For right now I'll try to hit more of the highlights.

Loads of allergies suspected - 3 skin prick tests & on 4th allergist, who I finally like. She explained that even though his test didn't show reactions YET, she thinks he's highly allergic to many things & when he's 4-5 years old we'll be able to tell better (with more exposure build-up). She recommended the GI doc route because she suspected celiac or some other gi issue.

GI doc based on my very detailed notes & his examination doesn't think it's any kind of inflammatory issue with the gi. He strongly suspects celiac is the culprit.

My son has only truly been gluten free for about a month - we missed some hidden sources like medications, just lack of knowledge on our part and no professional help until recently. My son also was ingesting large quantities of rice milk as his dairy from 10 months until 15 months - that with a lot of digging we were able to find out had loads of barley in it & not labeled! As soon as we stopped the rice milk his "seizure-type" activity stopped.

GI doc said he had to have gluten in his diet for 2 months prior to test to get more reliable results. He said it was a blood test. And depending on the results of that an endoscopy would need done.

Still leaving out tons of details, but hope this helps more. When we read the symptoms for the disease, it seems to fit like a glove... and it was our gut thought to the initial problems that started.

For doing the HLA tests - that would be my son doing them not us? Is it reliable with him already being gluten free?

Thanks again for the input.

If it were me I would have myself and my husband tested first - because if one of you has celiac than it is even more likely your son could have it. You can then decide from there what to do about diagnosis for your son. There is a higher likelihood of somebody with celiac disease having a parent with celiac so get yourself and your husband tested (blood) to see if one of you has it.

The gene test will not be conclusive to celiac - but at least a blood test and subsequent biopsy if needed, will be proof that you're on the right track regarding your son.

Best of luck,

TracyB

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