Classic Celiac In Kids???

[MissyBB]

Hi there. I am a member here as I am, at the very least, NCGS. I have never been tested to confirm celiac because I went off gluten during a food challenge and alllll my symptoms disappeared. I never went back to gluten. That was three years ago.

Okay, so my daughter.........she is 12 (13 in July). About a month ago she started feeling unwell. Belly pain, nausea (though NEVER has thrown up) and generally unwell. At first I chalked it up to whatever was going around her in the Canadian winter months of sickness that makes its rounds. But after about ten days of her feeling this way I took her to the ER. They examined her, did an abdominal x-ray and found she was full of stool. VERY constipated. We were sent home with directions to use Restoralax and get her cleaned out.

That was March 24th. She is STILL feeling this way and Lord knows she is "cleaned out" now and no longer constipated.

I wanted to ask parents here, on this part of the forum as you have experience with kids with celiac or NCGS. And my symptoms were not the same as hers. I had loose stools, and the arthritic pain.

So, some facts:

-she is 12

-always been healthy and on ZERO medication

-has intermittent nausea and stomach pain

-has this issue most days (she went two days, not in order, here and there that she felt good since mid-March)

-she IS underweight and height for her age but I was also a smaller person when I was young. My son was also smaller and sprouted up around 14 yrs old

-she weighs 83 pounds and is 5 foot 2 inches tall (will be 13 in July)

-has not started menstruating

-never has fever and is otherwise "fine"

 

I ordered a home celiac blood test and it is coming in the mail. I do NOT want to take her off of gluten before the test.  And, yes, I know some of you are going to say go to the doctor and get her tested but in Ontario we have to PAY for the test anyway so I might as well get the test in the mail. It will be quicker than getting an appointment, getting blood work, and then getting it back. And that is taking into account that any physician will take me seriously in the first place.

Does anyone have any thoughts on this?? Advice?

 

 

[cyclinglady]

I think that you are doing everything right given your circumstances.  If the biocard (not sure what test is on it)  is negative, you might consider the full celiac panel.  She could be just in the process of developing celiac disease.  Who knows?  It's a tough call.  She is really underweight for her height per the BMI chart.  I, too, come from a family of little people and small children, but most catch up in elementary school.  

Constipation?  You can still be going daily and still be constipated. 

My daughter was last tested two years ago.  She's been getting some weird symptoms, so I took her in for a well-check last week.  We are waiting for thyroid and CBC results.  I did not ask for celiac testing again as she seems pretty healthy, but that is still under consideration (I would need to beef up her gluten consumption for a few months as she's pretty gluten light).    I presented with anemia, so I am waiting to see her CBC results.  She's also a freshman in high school with a challenging schedule (honors,  band and sports).    She definitely needs the entire panel as I test negative on the TTGs for some unknown reason.  

Good luck and keep us posted.  I sincerely hope she does NOT have celiac disease.  

[MissyBB]

Cycling Lady.....thanks for your input.

 

Yes, it is the Biocard. If it comes back negative, which, of course, I hope it does, then we will have to investigate further. She obviously can NOT be feeling like this indefinitely. I feel so terrible for her.

If the test comes back negative and we take her back to the ER and they see nothing then I will start an elimination diet - wheat first.

I'm worried because I HIGHLY suspect my mother has celiac. She has had 'IBS' for years and years and has always had diarrhea and other problems. Once I figured out wheat was my problem I had an "aha" moment about my mom's suffering. We're not close and, well, she's the sort that would rather live in denial, hugging her loaf of bread, than to let it go and be healthy.

Point is, first my mom, then me and now my daughter with these problems. It concerns me.

 

[Midwitch]

Good luck OP. I hope you find the answers. For me getting positive coeliac screen back was great because we were running out of ideas for what was wrong with my son. We are now waiting on endoscopy.  Like your daughter my son is 12 (13 in December) and same height but weighs 68lb. He has lost 11 pound since November. He had severe reflux as a baby, never well controlled. He continued with intermittent reflux through the next 10 years and developed severe abdominal pain daily about a year ago. He has always vomitted easily, but the last 2 years that averages 10-20 times a week. He has bags under his eyes and looks so unwell.  He faints frequently and is anaemic with extremely low B12. 

 

Quite frankly I cannot wait to get him onto a gluten free diet to see him get well again.  Hugs to you and your daughter, I hope the test brings answers. 

[MissyBB]

UPDATE........

 

I took my DD back to the ER today as she has the terrible stomach thing again. The did full blood panel PLUS a full celiac panel. The good news is that she's not dying of some dreadful thing. Liver, pancreas, kidney stuff all came back fine. 

We have to see the family doctor for the celiac panel and the H Pylori test as it takes a few days.

I was SHOCKED the ER doc came up with the celiac panel all on his own! And, because the ER ordered it we don't have to pat the $400 for it! 

Since the test is done I am starting her on a gluten elimination right now. We'll see if she starts feeling better.

[MissyBB]

Oopps.... the test is more like $200 . I tried to edit my typo but for some reason it won't change. Anyway.......

[StephanieL]

I wound't pull gluten till you get the results from the Dr. A biopsy while consuming gluten is what is considered the "gold standard" for dx. 

 

Good luck!

[MissyBB]

Good point. Thanks!

[cjmm2002]

Have you received the results yet?

 

[MissyBB]

No, not yet. Our GP is hoping they come in tomorrow (Thursday). It's been a very long wait! I am hoping it's H Pylori and NOT celiac. Fingers crossed.

She's still suffering with a lot of nausea and pain.

[MissyBB]

UPDATE

We got the results back. Both the celiac panel and the H Pylori were negative. Ugh.....now we have absolutely no idea what to do. We have to start from square one again.

[cyclinglady]

Thanks for the update.  While I am glad that she doesn't have celiac disease or H. Pylori, I am sad that she is still in diagnostic limbo land.  I hope you can figure it out!  

[ChiaChick]

19 hours ago, MissyBB said:

We got the results back. Both the celiac panel and the H Pylori were negative. Ugh.....now we have absolutely no idea what to do. We have to start from square one again.

Before eliminating gluten, can you do the array 3? From what I have read, this can diagnose Non-Celiac Gluten Intolerance. Would be good to know for sure what you are dealing with. (As much as it is just plain awful to see our children suffer). I'm in the same boat here. Waiting for blood test results for both my boys.

[MissyBB]

On 22/04/2016 at 8:45 AM, ChiaChick said:

Before eliminating gluten, can you do the array 3? From what I have read, this can diagnose Non-Celiac Gluten Intolerance. Would be good to know for sure what you are dealing with. (As much as it is just plain awful to see our children suffer). I'm in the same boat here. Waiting for blood test results for both my boys.

There's a test for NCGI???? I had no idea they could test for that now. That's interesting because I KNOW that I am, at the very least, NCGI so I immediately suspected gluten sensitivity when she started feeling crappy. I didn't know they had a test for that.

 

Thanks!

[cyclinglady]

3 hours ago, MissyBB said:

There's a test for NCGI???? I had no idea they could test for that now. That's interesting because I KNOW that I am, at the very least, NCGI so I immediately suspected gluten sensitivity when she started feeling crappy. I didn't know they had a test for that.

 

Thanks!

Well, maybe not a legitamite one!  To my knowledge (I am not a doctor, but have done lots of research), there still is no test for NCGI.  Basically, celiac disease is ruled out.  The gluten-free diet is tried and if helpful, the NCGI is given.   I wish there were testing, but science is not there yet.  

 Why spend the money?  At this point, try the diet.  

Leading celiac experts do not support Cyrex testing.  This is an old subject debated on the forum:

 

 

[ChiaChick]

11 hours ago, MissyBB said:

There's a test for NCGI???? I had no idea they could test for that now. That's interesting because I KNOW that I am, at the very least, NCGI so I immediately suspected gluten sensitivity when she started feeling crappy. I didn't know they had a test for that.

 

Thanks!

I see that I have not been very clear in what I wrote... (I will blame that on my brain fog...) My understanding is as follows: The array 3 is a comprehensive test for Celiac. Sometimes not all the tests are ordered by doctors, and Celiac can be missed in some cases. The array 3 is said to be more comprehensive. What I meant to say is that if you know you have intolerance to gluten, then this test can point more definitively to NCGI by more comprehensibly ruling out Celiac, than only having lesser testing for Celiac. I did not mean to say that it can diagnose NCGI. I am not aware of a test that can do this. I am more concerned that perhaps not enough investigation has been done to rule out Celiac for your daughter.

@cyclinglady, thank you for setting me straight. I am learning as much as I can, as quickly as I can. 

I hope your daughter is on her way to better health very soon MissyBB.

[MissyBB]

Ah, thanks, Ladies, regarding the NCGI testing. That makes more sense now!

[Stacy0w]

My son is 7. He's a small kid. He will be eight and is trying to hit the 4' mark and 50lbs. When he was six almost every day he complained to but his stomach. Every now and then he'd throw up but usually due to constipation. X-ray done showed he was super constipated and they wanted us to keep him in Miralax. W had him skin and blood tested for allergies, but all negative. We had him celiac tested (I have celiac) and again negative (I've since learned they didn't do the full panel so who knows). I wasn't keeping a six year old on Miralax so I took him off gluten. Within a week the stomach aches stopped. Within two weeks his mood was cheerier. He no longer has little bumps on the backs of his arms that we were told were excema from the time he was tiny. For me regardless of what condition he has we know he can't have gluten and that is a good enough diagnosis for me. 

[frieze]

Missy, post the labs that were done, if yo don't mind, so we can see if were, in fact, complete.