Contamination!

[troushka]

Hi there.

I am at a loss! My son (14), daughter (16) and I all have celiac disease (Danika diagnosed at age 9 and me at age 11 months). My son, Ferghus, was dignosed 8 years ago and has been gluten-free ever since with very little trouble with compliance. Lately, though, in the last 6 or 8 months, Ferghus has started to develop suspiciously celiac-related symptoms. At his annual physical last week, our physician had him go for bloodwork to check for thyroid, ferritin etc, as well as a celiac screen to check for contamination. Man... it came back positive.

I have wracked my brain as well as torn the kitchen apart, and i cannot find any source of gluten. We have a gluten-free kitchen, other than my husband's bread and his own peanut butter and his own toaster. (The husband is anal about no cross-contamination.) Ferghus swears he is compliant, and i have full confidence he is. He was so very sick as a little one, i know he hasn't forgotten it yet!

At first i thought maybe his toothpaste (Crest Sensitive), but the company lists it as gluten-free. I checked all the labels in the kitchen, thinking maybe i had missed a change in recipes (that's happened once before with President's Choice Frosted Flakes), but no, i couldn't find anything different.

What am i missing? Any ideas or experience you might have had that i could learn from? Is Listerine Mouthwash gluten-free??? See how desperate we are? I am even questioning the mouthwash...

patricia

[Fiddle-Faddle]

How about if you post what is typical of a day's menus for your little guy? Maybe one of us can find a glitch somewhere....

As for recipe changes, I know in the last several months, Sam's Club Rotisserie Chicken has changed from gluten-free to containing gluten.

And, idiot that I am, I had been eating chicken salad from our local grocery store, thinking it was gluten-free, as it listed "Roast Chicken" in the ingredients (no gluten listed)--and I finally realized that they use their own soy-sauce-marinated Rotisserie chicken in that chicken salad. (Yes, I told them they needed to change the label, but they are all stuck in the "That's not my department" mind-set... )

You know your son better than anyone, and if you are confident in his compliance, I'm sure you have good reason to. But, just so you know, there ARE kids (I know one personally) who have SEVERE reactions to gluten, and yet still can't --literally CAN'T--stay away from it. The one I know traded lunches at school to get it, and when the kids were told not to trade with him, he STOLE. It's akin to being a heroin addict surrounded by heroin, for some. The compulsion/craving is absolutely overwhelming.

Hopefully, it'll just be some stupid labeling error, and you'll be back on track soon!.

[dilettantesteph]

My son and I are both very symptomatic, so we know. There are small or not so small amounts of gluten in a lot of gluten free foods. High tolerance celiacs, or low symptomatic celiacs have no trouble eating them, but we can't. For instance Amy's pizza. They test it to be below 5 ppm. My son got sick from one. I tested it with a home test kit and found it to be positive. They use shared facilities, but they test and are very careful, yet there is still a small amount of gluten in their product. I have to avoid restaurants, and not eat anything that is made in a facility that also processes wheat. Your son may need to be more careful with his diet. Some of us become less tolerant to gluten as time goes on.

[happygirl]

List some of the products/practices that your family and son use. Does he come in contact with wheat products at all (even if he doesn't ingest it)? Personal care products, prescription and OTC drugs, art supplies. What about lunch at school, or at friends' houses? Does he eat out at restaurants, fast food places? Does he have immediate reactions (i.e., does he know if he has ingested gluten?) or is he a silent Celiac (asymptomatic)?

What was your doctor's explanation? The testing is not necessarily sensitive to just an occassional slip up. Has he had any other follow up testing in between his diagnosis and his testing now, and what were the results? How was he originally diagnosed? Which blood tests were run this time and which were positive? There is a minority of patients that even on a strict, strict gluten free diet, do not respond (i.e., the villi in the intestines do not heal) and their bloodwork/biopsy continue to be 'positive' - called refractory Celiac.

[ang1e0251]

I agree with you that this sounds like some product he's coming into contact with almost daily. What about pets? Do you have pets that eat gluten food or have gluten in kitty litter? I had a "long burn" reaction last year to the caramel coloring in my coffee syrups.

Has he been exposed to any remodeling? I understand some dry wall has wheat. What does he drink? Could it be in an energy drink or soft drink he likes?

It's so hard to figure out the sneaky gluten. I hope he's feeling better soon.

[kbtoyssni]

What about school? What's the lunch situation like? Maybe he's getting CC from the tables or other kids. Does he move to a classroom where kids have eaten on the desks? Art class?

[troushka]

OH MY GOODNESS GRACIOUS!!

There is so much food for thought here, i have no idea where to even start!

Ferghus brings his own lunch to school every day. Having said this, he is certainly exposed to other kids eating gluten around him. He doesn't trade food with others (EVERYONE knows he has celiac and so food issues are not an issue with the kids. 5 others have celiac too, as well as a teacher.) But, there is a good chance, now that i think of it, that the tables are contaminated, of course. He also does go out with his friends to eat about twice a month, to local shops and grocery stores. I know for a fact that he isn't an assertive questioner with the staff, not that the staff will even know anything... (On the other hand, my 16 yr old daughter will demand to see the ingredient lists or speak with the chef!) So, again, chances are he is getting gluten in that way, i suppose.

He is in the Foods class at school, so is occaisionally exposed to the flying wheat flour in the kitchens. We knew this when he signed up and chose to risk illness because Ferghus LOVES to cook and wants to be a pastry chef. The Culinary School in our city has a gluten-free pastry certification, which he plans on attending after graduation. So this cross-contamination at school right now was anticipated. Perhaps he is reacting much more strongly than we had planned for.

Someone posted here that as we get older, our reactions to accidental gluten ingestion get worse. I agree with this; it has definately been my experience over the last 40 years. Maybe Ferghus is just getting worse now that he has been on the gluten-free diet for 8 years.

And as for the rotisserie chicken from the grocery store, i hadn't even thought of that! Is it just me, or do we once in a while just zone out and don't put 2 and 2 together? Of course the seasonings they use on the chicken would be suspect... It never even crossed my mind...

I guess all this goes to show that i need to be much more suspicious of everything than i have been. I am not suspicious by nature, and so i have always had this "benefit of the doubt" attittude toward the unknown. "Chances are i'll be fine!" Well, for the sake of my son's health, no more!

Thanks so much for all your support and suggestions. I'll keep you posted.

patricia

[DanaDee]

I recently overlooked hair spray. It had wheat starch. Look at his personal care products carefully. He is 16? Does he get "duded" up with cologne and after shave for the ladies? Check his products.