New To This With Some Questions

[jenilee]

Well starting around the time we introduced solids my son started having A LOT of night waking. He was breastfed and I don't do CIO with my kids (thankfully.) My 3 1/2yo has a corn intolerance so I was familiar with some of the symptoms.

So my now 19mo would wake up screaming, I would pick him up, he would burp some wet sounding burps and then pass back out. Only to wake an hour later and do the same thing. Each time his voice getting more and more hoarse.

Fast forward a few months. I am finally frustrated at trying to figure out what is causing this since he hadn't had anything crazy as far as baby foods and was still breastfed ( and while exclusively breastfed until 6mo he had NO intestinal reactions to anything I ate). I ask our pediatrician for a blood test. She hesitates, but agrees. Everything comes back negative. We did lactose, milk, dairy, wheat, eggs, barley, gluten, etc. All the most common ones. Including corn since that bothers my 3yo.

So I still keep evaluating mine and his diet (still bf'ing) trying to figure out what is causing this for him.

I FINALLY figured it out when he was about 15mo. Diary I had suspected so he hasn't had any of that (no yogurt or anything) since he was like 9mo. And then I figured it out that its gluten. That was only after my suspicion of BARLEY bothering him and doing some research and seeing that its a common gluten food. (Had the barley suspicion after giving him a chicken and barley baby food).

I have since cut gluten out of both of our diets (yes he is still bf'ing at 19m).

So the big question is, with a negative blood IgG test to wheat/gluten/barley/oat does that rule out an actual "allergy" to gluten? Is his issue just a digestive sensitivity issue? My ped said he is not a child who looks as though he has celiac, as they usually fail to thrive. But it is VERY clear that he can't digest this stuff. She hasn't tortured him with any testing since in the end it doesn't matter, he CAN'T have the gluten.

[shan]

If it was my son, i would keep hime off gluten till about 3 and then do a test on him - either challenge him if you don't care for an official diagnosis, or try him on it for longer and do the testing then. The reason i say about 3, is so that his brain has developed, and he wont have developmental issues - like speech delays coz his brain isn't getting the nutrients that he needs!!

[Ursa Major]

My ped said he is not a child who looks as though he has celiac, as they usually fail to thrive. But it is VERY clear that he can't digest this stuff. She hasn't tortured him with any testing since in the end it doesn't matter, he CAN'T have the gluten.

Apparently your ped is very ignorant of celiac disease (no surprise here, most are).

MOST children with celiac disease are NOT failure to thrive and don't look like they have celiac disease at all. Their tests are often negative because they haven't been around long enough for the gluten to destroy the villi yet to the point of being deathly ill and testing positive.

The babies and toddlers that test positive usually are at the verge of death.

In children under six trying the diet is the only truly reliable test. Your son was having problems when eating gluten, and those problems went away when you stopped feeding him gluten. Therefore he is at the very least gluten intolerant and shouldn't be eating it, which you have obviously figured out already. Good for you. You have prevented him from getting very ill and from probably ending up with failure to thrive down the road.

[Darn210]

My ped said he is not a child who looks as though he has celiac, as they usually fail to thrive. But it is VERY clear that he can't digest this stuff. She hasn't tortured him with any testing since in the end it doesn't matter, he CAN'T have the gluten.

Everyone was shocked when my daughter's blood test came back positive. I can't tell you how many times I heard the phrase "She doesn't look like she has Celiac disease."

My daughter's PedGI said that when he first started (not that long ago), they used to see about three kids a year with distended bellies and skinny limbs. You look at them and say they need to be tested for Celiac and no big surprise, the test would come back positive. Now, the practice he is in routinely screens kids for Celiac when they have "general" GI issues that aren't obvious where it's coming from. He said now they diagnose about one child per week with Celiac. That means the other 49 kids/year didn't look like they had the disease.

If your child does better off gluten, then I think that's the answer. You may find down the road you may be able to reintroduce dairy.

Also, as far as challenging . . . there has been great discussion amongst my daughter's docs and us at home on challenging her. I will say that the doc that we went to for a second opinion said that a gluten challenge should last for two months. If at ANY time GI issues start up again, the challenge is OVER, you don't keep ingesting gluten to get to the blood test you have your answers based on dietary response. So as you talk with the doctors, you might want to question them as if they will be open to diet response as a means of diagnosis. And to add a little bit more of our experience . . . my daughter (unintentionally) ingested wheat and had an immediate reaction. Even though, it wasn't the official challenge that we were planning in a couple of months, I consider the issue closed. I know for sure she ingested wheat and I know for sure she reacted. It's hard to remain gluten free without slip-ups, so when you have an instance where you know your child got ahold of something (and not just wondering if it was cc), then document the results for your own peace of mind and as evidence for your doc.

[jenilee]

Thanks everyone for the responses!!!