Thinking about getting my son tested...good idea ?

NorthernElf

I'm asking because I'm not sure if I'm just grasping at straws or not. Confused

My 7 year old is a very active boy and in grade 2. His teacher thinks he should see a doctor - sent me a note. I was right in there asking her what she meant (I don't think he is ADD or anything, just boy energy - don't believe in drugs for kids anyway - unless they actually sick). Anyway, she says he has a very hard time sitting still and paying attention and quite often goes off to do stuff without getting the full set of instructions. He also is "low in reading" (ack, and he is in french immersion). He does very well in math however.

Anyway, this is an active kid right where he should be in terms of height & weight. He plays hockey 3-4 days a week and is outside a lot - we try to get him to burn that energy ! He is not aggressive at all, just energetic. When he was little he had terrible diapers - the kind you could see what he ate (didn't digest stuff well - I know, gross). He does get stomachaches & headaches periodically, which my other two don't.

Me - well, I went gluten free before testing so I don't have a positive test result on a piece of paper to back me up, but I could hire myself out as a gluten detector because I react rather well to it, and in small amounts !!!

Ok, I guess now that I reread this I see I better at least get the blood test. My reluctance comes from my own doctor not believing me, but then I have a very "go through the motions" type of doc who did not advise me to keep eating gluten before getting tested, hence my lack of official diagnosis. Evil or Very Mad

jsb · Joined: 02 Jan 2008 Posts: 62 Location: Florida

I think I'm at the same point with my 7yo daughter. She has been having stomachaches for a couple of weeks. She has had these intermittently - as soon as I get ready to take her to the doctor, they stop and she is good for a while. I have had to get her from school twice in the last week, though. Today, however, no problem. She had an omelet for breakfast and yogurt for a snack. No gluten until lunchtime - could that be the reason for a good day, stomach-wise?

My reluctance to do this comes from 2 sources. One, I'm also not diagnosed (went GF on my own before I realized I'd have to be on it for testing) and I'm not very good at arguing with people like a doctor who might not believe me. Two, I wonder about the intermittent nature of her problems. If she had a stomachache the last several days, why would she not have one today? She ate gluten yesterday (mac&cheese at a restaurant last night, plus plenty of restaurant bread) and had a sandwich for lunch today, but she's been fine. And why do they come on for a few weeks, then disappear for months?

Elf, good luck with your son. I'll be curious to know what you decide, and how it turns out.

Jen
_________________
Jen
GF since 10/07

cardine45 · Joined: 15 Apr 2008 Posts: 567 Location: Kalamazoo, MI

Intermittent symptoms was one of the reasons I took so long to get myself tested. It seemed every time I was bad enough to make myself go in, I'd get a little bit better and I'd think it was going away. I developed all kinds of extra issues due to not changing my diet earlier, so I'm a strong advocate for getting tested just in case. I completely understand how horrible doctors can be about believing you, but I guess you have to do everything you can to be strong. This is your child, and you know what kind of pain they're in.
I would think there is a strong possibility of Celiac, but going to the doctor could reveal it's something else too.

cruelshoes · Joined: 23 Sep 2005 Posts: 3380 Location: Washington State

If it were me, I would have the celiac panel done. I just don't think you have anything to lose, and you have the possibility of getting some answers. Just so long as you go into it with the knowledge that negative bloodwork doesn't rule celiac out. Given your own experience with the testing, I know you'll do just that. Smile

I hope you get some answers.
_________________
-Colleen

Where are we going, and what am I doing in this handcart?

nancw · Joined: 04 Oct 2006 Posts: 1182 Location: Denver, CO

I would do it, Elf. I'm going to have my almost-8-year-old son tested at his next ped appt.
_________________
Nance

gluten, dairy, soy, rice, yeast and 99% grain-free

sweetea · Joined: 18 Nov 2008 Posts: 180 Location: Midwest

Not only would I do it but if the tests came back negative I'd even try a trial GF diet for a few months...

aklap · Joined: 02 Oct 2004 Posts: 10612 Location: WI, USA

Add me to the "get tested" - then a GF/CF trial group.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

jsb · Joined: 02 Jan 2008 Posts: 62 Location: Florida

I think I would need an official diagnosis for my daughter to get relatives (possibly including my husband) to be compliant in not giving her any gluten. They haven't been all that great with me, although it is getting better. If I just say she's going GF because of stomachaches, they'll brush it off because they view her as a sort of weak and whiny child. Evil or Very Mad

_________________
Jen
GF since 10/07

cardine45 · Joined: 15 Apr 2008 Posts: 567 Location: Kalamazoo, MI

NorthernElf · Posted: Thu Feb 12, 2009 7:50 am Post subject:

Well, we got the blood test - haven't got the results yet. Had a bit of a go around with the doc - he says the transglutimase test is 90-95% accurate. He says they don't do the panel. ??? I'm in Canada. Anyway, he also tested for iron and...something else. Three tubes were drawn. He was SO distracted - checking on his blackberry during the visit, actually looking up celiac disease. I still sort of had to talk him into it - he said celiacs usually have a distended stomach and lots of diarhea...yep, there's that "classic celiac" again. I know celiacs who aren't so typical...dang it, just do the darn test.

I hope my son doesn't have it though !

jsb · Joined: 02 Jan 2008 Posts: 62 Location: Florida

How were your son's results? I'm taking my daughter to the doctor's tomorrow to ask for the bloodwork. Her stomachaches tapered off, but then returned with a vengeance about a week ago. Today she actually asked me to please call the doctor because she was sick of feeling sick.
_________________
Jen
GF since 10/07

Frische Haus · Joined: 30 Oct 2008 Posts: 20 Location: Austin, Texas

1. I would make inquiries as to the best pediatric gastro doc in your area who is very good with celiac patients/treatment.
2. And I would get any blood tests done through his/her office.
3. My pediatric office ran the wrong test, ran an incomplete panel, etc.
4. I have a gastro doc now that has given me that slip of paper that says to maintin a GF/CF diet and once you have that you don't have to worry about the world second-guessing what is the best "medicine" for your kid.
5. These last 4 months of having a 3 yr old without constant GI issues have been a godsend.

Do go in with some documention about what she eats & what her symptoms have been (date/times)...

jsb · Joined: 02 Jan 2008 Posts: 62 Location: Florida

I love our ped. After discussing probably IBS and going dairy-free for a while to rule out lactose intolerance, I asked about doing bloodwork for celiac. He said, "Absolutely!" Then, before I could ask which tests he was going to run, he said he was going to run a celiac panel, including tTg, total IgA, and antigliadin IgA and IgG. No doubting, arguing, or refusal to run a complete panel rather than just tTg, which seems to be other people's experience sometimes.

We'll get blood drawn tomorrow - I had to call the insurance company to find out which lab to use, then pick up meds for dd2, who was also sick and saw the doctor, too.
_________________
Jen
GF since 10/07

Frische Haus · Joined: 30 Oct 2008 Posts: 20 Location: Austin, Texas

Hi JSB,

You know I love my ped too though for other reasons. This is the ONLY ped I have ever had where I can get into his office 7 days a week and on weekdays as late as 8 PM. I am astonished by this. (I think I might have the only children in the universe whose ailments tend to worsen at 4PM on Fridays.)

That said if one is dealing with issues of a persistent nature that pertain to a physician's area of specialty, I am just more comfortable having my child in that person's care.

What happens if the labwork comes back with no markers for celiac? You are back at square 1. If you are contending with lots of nonsupport from external "experts" in childcare, they are a lot less interested in taking on the recommended course of treatment from a pediatric gastroenterologist...I think it just sounds more imposing.

If the labs come back and show celiac, this won't be a concern for you. Good luck!

Kirsty27 · Joined: 16 Oct 2008 Posts: 27 Location: UK

My son was tested for celiacs because of intermitant stomachaches (our doctor picked up on it amazingly quickly, thankfully) and was positive, starting a gluten free diet last summer. It took about four/five months, but his attention levels at school improved vastly after coming off gluten (he always had a problem concentrating up to then), so I would say it's always worth checking for.

My husband had gone gluten free without a celiac test two years previously without any medical involvement. His bloodwork was negative and the docs wrote it off as a posibility. Interestingly, since our son was diagnosed positively they have decided that he 'probably is' celiac despite the negative bloodwork because there is such a strong hereditary link. He has no intention of going back on gluten for six weeks and making himself ill enough for a biopsy to prove what we already know, but it was an interesting turn around by the medics!
_________________
Kirsty

http://www.MyGlutenFreeChild.com