I Just Ordered The Enterolab Test For My Son...

[brigala]

I've had some suspicion about my son and gluten for quite some time now. He tried a gluten-free diet for a couple of months, about a year ago, but didn't see any dramatic improvement. The problem is, he's 14 and although he tried to follow the diet there were a lot of mistakes (What? Nacho cheese doritos aren't gluten free?). Also, although HE didn't notice improvement, my husband and I both felt he seemed... less spacy... for lack of a better way to describe it. Spaciness is a personality trait he has exhibited since he was a toddler.

We eat gluten-free at home anyway, because of me. But we're on vacation and eating out a lot right now. He had a burger for dinner Friday night; Saturday he decided to take his lunch (hot dog) without a bun because he had an upset stomach and thought it might be gluten-related. Today, he felt better so he had a burger for lunch, and then almost couldn't eat his dinner because he felt so rotten. He went to the bathroom 3 times during dinner. We ate at PF Chang's so he shared my gluten-free food and picked out the only gluten-free dessert on the menu even though he really wanted cake. About halfway through dinner he decided he was never eating gluten again.

Fortunately, tomorrow we're going to Disneyland and after talking to Guest Services last week I am confident we'll both be able to find plenty of great gluten-free food. I don't want him to start the gluten-free diet until after he's sent in his stool samples to Enterolab, but I don't want him to be sick for the rest of vacation either so I encouraged him to choose gluten-free options at Disneyland tomorrow.

Does anybody know how long it takes Enterolab to send out the test kit? I don't want him to feel crummy any longer than he has to. I really hope we can get some definitive answers from the Enterolab tests. He had a negative blood test last year, after going off and then back on gluten.

We ordered the complete stool panel and gene test along with the complementary casein test. Depending on what the results are, how should I approach his pediatrician? She seemed to think the blood test was definitive. She's a great doctor, though, and I was pleased that she ordered my kids screened based on family history alone and in the absence of any clear symptoms... even if I disagree with her that a negative blood test is conclusive proof that he doesn't have Celiac or any related gluten problem.

His ongoing "symptoms" before the last few weeks have been vague: spaciness, "brain fog," insomnia, sleep disturbances (including sleep talking and sleep walking). It's hard to know how much if any of this might be related to gluten. Recently, I've noticed that he uses the bathroom more often and complains of not feeling well after eating away from home -- presumably because he's eating gluten.

My hope is that if he has a gluten problem that we've caught it before it becomes full-blown Celiac disease. Maybe he won't have to read every little thing and wonder about traces of barley malt or a touch of soy sauce or worry about whether it "touched" something gluteny. Any opinions on this?

I would appreciate any input, advice, insight, or other comments. :-)

[maile]

Hi brigala,

the kit comes out pretty quickly but the Elab site says you don't have to be consuming gluten for it to be accurate. I tested after about 2 months gluten free (with slips) and still showed antibodies.

[pewpewlasers]

That sounds like I lot of what I went through at his age but had no idea what was causing it.

I was really spacey, like being in a constant brain fog. I had insomnia and I also had periods of sleep walking and talking. I remember a time when I was in a treatment center for severe depression when I was about 13-14 and I had the worst case of sleep walking. Apparently, I was throwing chairs in my room and yelling at my roommate. I remember waking up and I was standing in the doorway screaming at the nurses and was extremely confused at the situation. I don't know if sleep walking is related to gluten but I only had sleep walking episodes when I was a teenager and one when I was about 19-20.

My Mom would tell me stories of my sleepwalking when I was a teenager and I either didn't remember anything and thought she was crazy or I thought I was dreaming.

Luckily, I don't have sleep disturbances now because they can be pretty crazy.

Did his pediatrician recommend seeing a gastroenterologist? I'd ask because all my symptoms were dismissed when I was kid and they never looked any further into what was causing my problems. Doctors seem overlook so much. If you really suspect that he has a gluten related problem, go see the gastro!

[ravenwoodglass]

If you are a diagnosed celiac it is likely, IMHO his symptoms are being caused by that also. Good for him for recognizing it and being willing to give the diet another stricter try. Enterolab can test up to a year after we stop eating gluten so if you are going that route rather than the GI route go ahead and let him stop. If you want him to get the blood tests and or biopsy then do keep him eating gluten until those are done.

[brigala]

Thanks, everyone.

Pewpew - His pediatrician did not make any referrals and didn't think any follow-up was warranted after a negative test. But he wasn't having any GI symptoms at the time. Now his GI symptoms are still mild so I doubt I'd be able to get her to order any additional tests. And we wouldn't be able to get insurance to pay for it unless she ordered them.

If I get a smoking gun from Enterolab, I'll have to take that to his ped and see what she says -- whether she recommends followup with a GI doc from there.

I think I'd have a hard time getting him to continue eating gluten at this point. He was pouting over his brother's leftover chocolate cake tonight but certainly didn't ask for a bite. I had to assure him that it was OK to eat oatmeal this morning at the hotel's breakfast because it wasn't special gluten-free oatmeal; less than 24 hours into his self-imposed gluten-free diet and I don't think the small amount of gluten that may or may not be in his oatmeal is going to make a difference. (I, on the other hand, brought my own packet of Glutenfreeda's instant oatmeal -- it is pretty good if you prepare it right, although it was horrid the first time when I didn't read the instructions).

ANYWAY -- we'll just see what Enterolab says. I am not sure that the vague sleep-related symptoms will clear up on a gluten-free diet, but so far he's already feeling better in the tummy than he was yesterday (had a gluten-free bacon cheese burger and gluten-free pizza at Disneyland today!).

-Elizabeth