Could This Be Gluten?

[Heidismom]

We have had my 2.5 year old dd off gluten for almost 2 weeks now and she has been having some great results: sleeping through the night, fewer tantrums, happier, healthy appetite, stools have become normal.

This morning when she woke, she had a little rash, some red spots, not raised at all. This evening the spots are larger, and seem to be more of them. They are on her tummy, bottom, arms, and legs that I've seen so far. This evening she also has had 3 loose stools, each worse than the next. Anyone know if this sounds like she got some gluten? I thought about chicken pox, she's already had them, but that wouldn't rule it out, but they are not raised marks on her, just spots. She's also been pretty mean to her baby brother today too, not usual either. I'm racking my brain trying to think of when she may have gotten something she shouldn't have, but I can't think of anything. Would cross contamination after only two weeks off gluten come on so strong, because her older sisters are still eating gluten. (too expensive to get rid of all our food and start over in a family of six)

Anyway, I don't know what to think, the rashes I've read about online seem to be bumpy and weeping, that's not this (yet, knock on wood). Also wondering if maybe it's from being off gluten that she's having this, like maybe she's detoxing? I don't know, I'm lost in the whole gluten free thing, it's like I'm finding out new things that contain gluten all the time.

If anyone has any insight, familiar situations, I'd love to hear about it. Thanks.

Spoke to soon, some of the splotches are starting to raise, and some look like she got a little scratch on them.

[ang1e0251]

Sounds like cc to me, if it's starting to blister. I had two different rashes, the blistery kind and the other the little bumps looked more like hives but with deep purple spreading out under the skin. Both itched like crazy and were very painful. For me the blisters can pop out with a pretty strong glutening incident. The other rash only reoccurs if I'm glutened over and over, every day. I was using a flavoring in my coffee that caused it last.

Matching a rash to a change in her behavior seems to point to gluten. Don't you think that to, since you wrote about it? It is very hard to figure out sometimes. Maybe you could tell us what she's eaten the last 24 hours or so. There might be something someone here can spot. Or maybe she got into something like dog food or soap or her sibling's sandwich?

[Heidismom]

I hadn't thought about the dog food, she does have access to that, she doesn't eat it, but she will sometimes play with it when no one is looking. I checked her soap, called the company, and they said it is gluten free. I wondered if behavior changes were part of things, sudden onset like that. So, our laundry detergent is ALL in the blue box for HE washers, I didn't see any ingredients jump out at me. We did just switch to it a few weeks ago. She had those little gerber dried fruits, rice, beans, honey, peanut butter, gluten-free pancakes, gluten-free cereal, organic milk, organic yogurt, unsweetened frozen blueberries, flax, gluten-free Animal cookies, spaghetti squash, spaghetti sauce, I can't think of anything else right now.

I am worried now, because the doctor wants me to put her back on gluten for 2 weeks so they can retest her bloodwork. Her first test came back negative, but she had been off gluten for a week and a half prior. She's gained a pound in the last 6 months, and now she finally has a good appetite, sleeping through the night not waking up screaming, no more diaper blowouts, much sweeter girl, and we've got to put her back on, and who's to say that one is going to come back positive either. They tried to tell me that it wasn't the problem because of the test, and I had to tell them that I had heard that if you're not eating gluten prior to it, it can be negative. Anyway, I'm tired, and annoyed, and sad that she's got to go through this and they won't just listen to her parents. Like we're going to make it up so that she can be on a gluten-free diet the rest of her life because that would be so much nicer and easier for us? Anyway, sorry about the rant. Thanks.

Sounds like cc to me, if it's starting to blister. I had two different rashes, the blistery kind and the other the little bumps looked more like hives but with deep purple spreading out under the skin. Both itched like crazy and were very painful. For me the blisters can pop out with a pretty strong glutening incident. The other rash only reoccurs if I'm glutened over and over, every day. I was using a flavoring in my coffee that caused it last.

Matching a rash to a change in her behavior seems to point to gluten. Don't you think that to, since you wrote about it? It is very hard to figure out sometimes. Maybe you could tell us what she's eaten the last 24 hours or so. There might be something someone here can spot. Or maybe she got into something like dog food or soap or her sibling's sandwich?

[shayesmom]

I am worried now, because the doctor wants me to put her back on gluten for 2 weeks so they can retest her bloodwork. Her first test came back negative, but she had been off gluten for a week and a half prior. She's gained a pound in the last 6 months, and now she finally has a good appetite, sleeping through the night not waking up screaming, no more diaper blowouts, much sweeter girl, and we've got to put her back on, and who's to say that one is going to come back positive either. They tried to tell me that it wasn't the problem because of the test, and I had to tell them that I had heard that if you're not eating gluten prior to it, it can be negative. Anyway, I'm tired, and annoyed, and sad that she's got to go through this and they won't just listen to her parents. Like we're going to make it up so that she can be on a gluten-free diet the rest of her life because that would be so much nicer and easier for us? Anyway, sorry about the rant. Thanks.

Two weeks of being back on gluten probably will be an exercise in futility considering that she tested negative before. I would think it would be more productive to check for genetic markers in conjunction with positive dietary response at this point.

And yes, I do agree that it is sad that a doctor would put a child through this to basically convince him/herself....when the parents already have committed to trialing the diet with successful results. At times it seems like it's more important to them to be "right" than to observe and acknowledge the positive physical response in their patient. Seems kinda backwards to me. I can appreciate wanting to rule OTHER things out at this point. But I think the question of gluten being a problem has been answered.

FYI, you don't "have" to put your child back on gluten because the doctor isn't convinced. You do have choices in this. You can seek a second opinion. Some doctors will diagnose based on dietary response. Others will diagnose based on dietary response and pre-disposing genetic markers. The question really is....what is best for your child and your family? Will the test results make any difference in how you proceed from here, knowing what you now know?

[lizajane]

Two weeks of being back on gluten probably will be an exercise in futility considering that she tested negative before. I would think it would be more productive to check for genetic markers in conjunction with positive dietary response at this point.

And yes, I do agree that it is sad that a doctor would put a child through this to basically convince him/herself....when the parents already have committed to trialing the diet with successful results. At times it seems like it's more important to them to be "right" than to observe and acknowledge the positive physical response in their patient. Seems kinda backwards to me. I can appreciate wanting to rule OTHER things out at this point. But I think the question of gluten being a problem has been answered.

FYI, you don't "have" to put your child back on gluten because the doctor isn't convinced. You do have choices in this. You can seek a second opinion. Some doctors will diagnose based on dietary response. Others will diagnose based on dietary response and pre-disposing genetic markers. The question really is....what is best for your child and your family? Will the test results make any difference in how you proceed from here, knowing what you now know?

we took my 4 year old so off gluten simply based on symptoms and his family history. i have celiac and my father in law does, too. we had excellent results. we have no intention of pursing a "diagnosis" because we already have one. it came from response to diet, not a doctor, but it was clear that he is better off without gluten. so it counts for us.

[Heidismom]

I am worried about how we will deal with schools if we don't have something from a doctor saying that she can't have gluten. It's been my experience here that the schools absolutely want a note from a doctor that says "so and so can't have this to eat," or they won't respect it. I don't want some teacher giving her graham crackers for a snack because she thinks I don't know what I'm talking about. Does anyone have experience with this? I am sure that for school lunches they have to have the doctor's note (which can be avoided by brown bagging it), but I don't know about snack time in the class room.

We started her back on gluten this morning, and have her sleeping next to our room tonight should she start throwing up like she did last time she had some. So far, she seems in a good mood though, her rash had started to fade, but is now blooming again, but she doesn't seem to be bothered by it. My husband and I have pretty much decided that should she start having a hard time with any of it, we will take her off, and keep her off. I am also going to try and get an appointment with the head doctor at the office, and see if we can get some better results from him than we did with the woman we saw (PA?). I do want to pursue the genetic testing once my husband starts working again and things are a little more stable. It's my understanding that you don't have to be eating gluten for those.

If things don't work out with this blood test, I will be talking to the actual doctor at her office to find out if he will at least put "gluten intolerant" in her file and give us a note when the need arises. I don't know what more I can do really, I'm not willing to put her at continued risk when it seems like such a difficult thing to diagnose in children.