Symptoms Returned

[brigitam]

Hi, I need some help. My son aged 5 has been through lots of testing and I have been told he is NOT celiac- despite having dozens of symptoms. I suspect he had his endoscopy test too soon after being back on gluten- hence a false negative- but who knows?! He has been gluten free for about 8 months and up until now going great- growing, fattening up, increased appetite, better behaviour etc etc. Any exposure to gluten has reconfirmed our suspicions that he needs to be gluten free. Now suddenly we seem to be going backwards. He is pooping his pants again with diarrhoea and bed wetting and having stomach problems. I'm not sure what to do. I have explored all medical and alternative options in the past and been given no answers. Is there a chance that I need to be more careful- using a separate toaster for example? We sometimes buy scoop ice-cream from a place that sells ice-cream containing gluten as well as gluten free. Has anyone else found that they or their children have become more sensitive over time or should I be looking elsewhere for answers? I would really appreciate any insight. Thanks, Brigit.

[Mizzo]

Yes I have found my DD to be more sensitive the longer she is gluten free.

The toaster is absolutely a problem, get your 5 yr old his own. The crumbs collect in the bottom and sides and attach to new slices put in.

The few times we indulge in scoop ice cream I make them get a new scooper and/or rinse thoroughly under a faucet before scooping and I ask them to get it from under the top layer because that is cc'd as well. People get annoyed with all this special request instructions (especially at busy times) and I just don't feel it's safe so we rarely get scooped ice cream.

some cc issues at home if you haven't rechecked the following:

got new colander for gluten-free only

got new pans if your old teflon coated are deeply scratched

use muffin liners always in a really well cleaned muffin pan

changed your butcher block knife holder (I looked closely in my old one and found it to have crumbs in it )

checked all your sauces, dressings and marinades

keep gluten-free foods separate from non gluten-free foods in cabinet and frig

My 8 yr old , 14 months gluten-free has the exact same side effects when she is cc'd.

good luck

[eah4me]

We are going through a similar issue with our daughter in that she did great off of dairy and then suddenly went right back to where she had been with the stomach aches and behavior problems despite still being off dairy. We also strongly suspect gluten problems despite negative testing. I have heard it is possible for them to have multiple food allergies/intolerances. Maybe that could be contributing? Just an idea. You could consider asking your doctor about eliminating other potential allergens from the diet.

[T.H.]

Has anyone else found that they or their children have become more sensitive over time or should I be looking elsewhere for answers? I would really appreciate any insight. Thanks, Brigit.

My daughter (11 at the time and a diagnosed celiac) started feeling sicker around 6 months gluten free, and a big part of hers definitely seemed to be that she was becoming more sensitive to gluten than before.

Not only did we have to be more careful with gluten cc, but she also started having trouble with some of the gluten free products we used. gluten-free processed foods just have to have below a certain level of gluten, they don't have to be zero gluten. We don't even have tests that can test to see if there is zero gluten. So some gluten-free products have more gluten than others. My daughter has trouble with the gluten-free foods that tend to be closer to the upper limit, and does better with those that have much less gluten.

At the same time, my daughter DID have other food issues we've found. It might be worth while doing a food journal for your little one, to track the reactions and see what she's eating.

Also...what is the household situation like? A friend has a 2 year old celiac (undiagnosed, like yours) who also started reacting a lot after a few months gluten free. He seems to have become more sensitive too, and he was also in a gluten shared household. This has turned out to be a HUGE problem for the little one.

He's always putting his hands in his mouth, and if someone has, say, eaten gluten on the couch and the couch gets contaminated, the little one will put his hands on the couch, and into his mouth, and wham, he's sick. They've had to start really, really cleaning up the house, keeping all gluten in the kitchen and cleaning right afterward, because he's so small he always puts his hands in his mouth.

He's been sick now from shared pans, from shared toasters, from some gluten-free foods that had been fine before, even from a cat litter that turned out to have wheat and the cats were tracking it around the house where his little hands touched all the time.

I guess if I was in your situation, I would look to eliminate gluten contamination first, and if that doesn't work, I'd look to other foods next.

Oh, also? Are your shampoos, soaps, lotions gluten free? For many adults, it's not as much of an issue, but for the kids, they tend to put lotion covered hands in mouths more, or get soap or shampoo in their mouths more (like in a bath or when it washes over their face in the shower), so they can get glutened this way - even if the little one kissed your cheek and you have gluten containing makeup on, this can make her sick, potentially.

Wishing you luck getting your teeny to feel better soon!

[brigitam]

Thanks so much, some great advice. A lot of things that I hadn't thought of like soap and crumbs around the house. I am going to have to give my house a serious overhaul and hope that solves the problem. I have thought of other food intolerances but it really feels like gluten free is enough of a burden for a 5 year old. I hope that is something that I don't have to explore! Thanks again. I alway appreciate how generous with their time people are on this forum. Brigit.