Gluten Challenge Results: Opinions Needed

[mark77nj]

Our 2 year old son has dairy and soy allergies that have presented as pretty bad diaper rashes. Any exposure would leave him with some nasty open sores. We have that well under control and some resent challenge testing has shown not as severe of reaction, and we were going to start to add dairy and soy back in on trial basises. However, despite completely removing dairy and soy from his diet we were still seeing random sores. Also, he has only had very few solid poops (I'd say never, but I'm sure there have had to be a couple). Also, apologies for TMI, but his poops often smelled vial - more than should be "normal." I'm a stay at home dad and change 99% of his diapers so I know when that there is a difference in the smell of his poop sometimes and sometimes it's bordering on toxic. He is skinny but not falling off any growth charts and our pediatrician has not been concerned in that respect (he's a VERY active 2 year old boy). He also has regular eczema on the top of his arms and can get it on his face near his ears or on the tops of his thighs when it flares.

 

We mentioned these things to our pediatrician in the fall at his 2 year old check-up and she mentioned celiac as a possibility. We have not done any solid food journaling on gluten so we're not sure if the eczema flareups or stinky poops correlate to more gluten intake.

 

We went to our allergist 2 weeks ago for an annual checkup and he suggested we do a gluten challenge because he felt like there was something else going on given what we told him. His first blood tests at 12 months showed egg & corn as possible culprits, but he has eaten those without issue. Our allergist recommended 5-7 days of no gluten and then 2 days of as much gluten in him as we could do. We started it last week and we were sure to exclude dairy and soy as well just so that we had a completely "clean" test going on.

 

Within a few days of gluten free, we noticed that his eczema was much better than it has ever been. When I would make him a sandwich with bread he would eat the entire thing. In the past he'd eat bites of the bread here and there, but usually deconstruct the sandwich and eat what was inside or lick it off the bread and leave most of the bread behind. He was also eating a lot more than he usually does in general.

On the morning of Day 7 our son complained that his stomach hurt. He was straining to poop in his diaper; something he hadn't done since he first started eating solid foods. His poop smelled horrible. We then realized that we went out to dinner the night before. And it occurred to us that the french fries he ate had a coating on them. We called and confirmed there was gluten on them (frustrating because that restaurant advertises it's gluten free menu items and has a lot of them, and yet a staple side is not gluten friendly). Our son also felt hot and when we put him down for a nap he had a 102 fever, which continued all day into bed time. The eczema on his arms was bright red and hot to the touch. We called the allergist's office. One of the other allergists (not our MD) had a nurse call us back and said that a fever is atypical and that he was probably sick from something else - probably viral. However, the fever lasted for less than 12 hours. He woke up the next morning and was at 99.1 (not a fever) and then dropped to even more normal by the afternoon (We did not treat the fever either since we generally don't unless it's a dangerous fever).

 

We decided to continue to feed him gluten for the next 2 days since he'd gone 6 days gluten-free and he was already exposed. Today is the day after the 2 days of getting "glutened." We're trying to figure out if what he experienced was a gluten reaction or something else entirely. Here are some of the things we've noticed between the 6 days gluten-free and since he's been "glutened":

1. He ate gluten-free bread completely whereas in the past he would - most of the time - pick bread apart and only eat what was in a sandwich.
2. When he was gluten-free his eczema was much improved. After one big exposure of gluten the eczema in the most common places flared.
3. The consistency of his poop as well as the smell improved to being closer to normal when he was gluten free.
4. He got a fever within 12 hours of having his first dose of gluten after 6 days of being gluten free.
5. He had to strain to poop and it smelled very bad within 12 hours of having his first does of gluten.
6. He generally did not want to eat gluten foods that were not sweet. He wouldn't eat waffles or pancakes (things he loves) or anything coated in gluten. 
7. When he was off gluten he slept much more soundly at night. We didn't notice it until the 2 days he was eating gluten again and we'd hear him in his room at night half-waking up, which is something he'd been doing before we did the challenge. When he was gluten free we realized we never heard him at night.
8. We also noticed that when he was back eating gluten that his disposition had changed. The week he was off gluten he was a much more well behaved kid. Actively listening when he asked him things or told him not to do something. But back on gluten he often repeats himself constantly. He does not always acknowledge us if I'm talking to him even if I'm standing right next to him and there is really nothing capturing his attention (He is overall a really well behaved kid so the "bad" behavior can be quite a striking difference). My wife, who works, also realized that last week was like the best week ever in terms of my mood when she came home and hearing about what transpired over the day.
9. In the first 2 days of being glutened he napped for much longer than he normally did (3 hours vs. his typical and was always a little groggy when he woke up.

In our own research we know that a lot of these observations can be classic gluten issues. However, we're not really sure because the introduction of gluten was accidental so we didn't get to really observe things in a controlled way. Also, since the initial opinion of our allergist's office was that the fever was viral we're wondering if some of these things could just be related to him getting a 24 hour bug (highly coincidental, but...). We still need to call and speak to our actual MD allergist and see what he says. I also am considering calling our pediatrician who is very attune to allergies to get her opinion and to see if she thinks a quick fever like that could be viral or something that is going around in our area.

 

Outside of talking to the allergist we think we should repeat the challenge and see if we observe the same things.

But we wanted to get the opinions of people here to get initial thoughts. Also, to see if you have any suggestions on next best steps that we should take. We know blood tests and seeing a GI are possibly next, but opinions, guidance or anything would be helpful. 

 

Thanks in advance!

 

 

[pricklypear1971]

I'll post more later but I can say that fevers are not unusual for me with bad allergy attacks (cedar/juniper) AND they became normal with my last few big breakouts of dermatitis herpetiformis. DH is a celiac skin rash - a dx of DH is a celiac dx.

That said, visit the DH section on this board. That may not be eczema. Or it may be eczema caused by gluten. Either way, it appears to be aggrivated by gluten.

[frieze]

few, if any, viral "things" clear in less than 48 hours.....the gut things called 24' bug are usually food poisoning.   I don't see a reason why an autoimmune process couldn't cause a fever....

[Ollie's Mom]

My son was getting tons of "mystery" fevers. Sometimes as high as 103+. They all disappeared after we removed gluten from his diet.

A fever just means your immune system is ramping up a response to something. It doesn't necessarily means that something has to be viral.

Sounds to me like the gluten challenge confirms a gluten issue. I think the fact that his exposure was accidental, but that you noticed his symptoms without knowing he had been exposed, makes the results that much more striking. It is not like you were anticipating a reaction of some kind because you knew he had consumed gluten.