Push For Testing?

[mscrzy1]

Hello!

Just last week, I took my daughter (6 years old) to an allergist because she's been complaining of an upset stomache for about 2 years now and maybe more. I feel like the worst mom. She doesn't eat a whole lot and I always thought that it was due to her not eating very much or that she just had to go to the bathroom. Man, do I feel like I deserve the "Worst Mom of the Year" award. Anyways, I finally decided that there was more to her complaints and took her to see an allergist thinking that she had a food allergy of some sort. They did her testing and found she wasn't allergic to any foods. After more questioning, her dr. said he was 90% sure she was wheat intolerant. He said that he wasn't willing to do the blood test because it was unreliable and didn't want her to go through that for him to simply say what he would tell me to do anyways which was to avoid wheat.

I'm fine with that, but sometimes wonder if I should push to have the gi test done on her to see if it's an intolerance or actually celiac's. Now that I've been researching it, she has a lot of the symptoms and I can see why her dr. was so sure of her intolerance. She has a bit of an extended stomache and has had it all her life even though she's a tiny little thing. I always thought it was just her "baby" stomache that just wouldn't go away. She's little. She's always been in the 5th percentile in height and weight even though her sister has always been in the 75th percentile. She complains of her legs hurting all the time. She gets diarrhea very easily. She was a really fussy baby and had reflux. She gets a lot of respiratory infections (this could also be due to her allergy to grass). Something interesting in hindsight is that she seemed to naturally avoid some things with wheat or gluten. In fact, I got in trouble with her Kindergarten teacher for packing only veggies and fruits in her lunches (no protein), but it was all I could get her to eat at the time because whenever I packed something with protein it was in a sandwich or rolled in a tortilla.

One of the things that has me thinking that she may be suffering from celiac's rather than an intolerance is that her symptoms happen immediately after eating sometimes actually in the middle of eating. I had also had her on a gluten free diet for 2 weeks, then she ate tacos with her dad and threw up that night with no other symptoms that would lead us to think it was the flu or anything else. In a way, I agree with my dr. in that why should she have to go through the yucky testing just to have the same results. But, then wonder in my head if she should actually be tested. Any thoughts? Thank you!

[Cara in Boston]

I am kind of new at this . . . we are still in the testing phase.

Here's why we are going through with testing for my 5 year old son (even though we will go gluten free either way when we are done.) His blood test already shows he is reacting to gluten.

1. He is eating gluten now, has been his whole life, we are used to his (very few) symptoms. If he goes gluten-free now, at some point he might want to be tested, and then we would have to go through a gluten challenge and intentionally eat something that may make him feel sick. No thanks.

2. If he has it, having documentation may be helpful in getting schools to cooperate with his dietary needs. His current school is WONDERFUL and would be on board simply if I asked. Can't be certain about Middle School, High School, and even College. He may need special considerations for not only diet, but for missed school days, etc.

3. If he has celiac disease and we know for sure, he will be monitored for the rest of his life for other, possibly related conditions. It will be in his medical file.

4. If he has it, family members need to be tested as well. (I have already tested positive). It would even be incentive for 2nd degree relatives (cousins) to get tested.

Anyway, we go for a visit with yet another MD next week . . .we'll see what happens.

Cara

[Kimmik95]

If she's not on a gluten-free diet, I would contact her pediatrician and request the blood test. It's a blood draw - nothing tramatic. If the blood comes back with indicators, they should refer you to a pediatric GI doctor who will meet with you, examine your daughter, then schedule her for a biopsy. During the biopsy, they take a tiny piece of her small intestine to look at the villa. If they are damaged, she's got celiac disease.

celiac disease means that when your daughter eats gluten, it triggers an autoimmune response which causes her body starts attacking itself. This is considered a gluten intolerance.

Not having celiac disease and having a gluten intolerance is more like having a peanut allergy. It's a severe once and done response if she eats gluten, but there are no long term affects to her body.

Your daughter very much sounds like she has celiac disease. My son was diagnosed at 6 through this method and he was very mild on symptoms and damage.

So, what does a celiac disease diagnosis get you? Techincally, it gets you the ability to impliment at 504 at school for your child. My school is fighting me tooth and nail on the implimentation, so I'm not sure it got me much of anything. It also gets you a specific diagnosis yes or no. Some people need that. The fact is, even if your daughter doesn't have celiac disease, she seems to have a gluten intolerance, so go gluten-free anyway. She might outgrow a gluten intolerance. You don't outgrow celiac disease.

Hello!

Just last week, I took my daughter (6 years old) to an allergist because she's been complaining of an upset stomache for about 2 years now and maybe more. I feel like the worst mom. She doesn't eat a whole lot and I always thought that it was due to her not eating very much or that she just had to go to the bathroom. Man, do I feel like I deserve the "Worst Mom of the Year" award. Anyways, I finally decided that there was more to her complaints and took her to see an allergist thinking that she had a food allergy of some sort. They did her testing and found she wasn't allergic to any foods. After more questioning, her dr. said he was 90% sure she was wheat intolerant. He said that he wasn't willing to do the blood test because it was unreliable and didn't want her to go through that for him to simply say what he would tell me to do anyways which was to avoid wheat.

I'm fine with that, but sometimes wonder if I should push to have the gi test done on her to see if it's an intolerance or actually celiac's. Now that I've been researching it, she has a lot of the symptoms and I can see why her dr. was so sure of her intolerance. She has a bit of an extended stomache and has had it all her life even though she's a tiny little thing. I always thought it was just her "baby" stomache that just wouldn't go away. She's little. She's always been in the 5th percentile in height and weight even though her sister has always been in the 75th percentile. She complains of her legs hurting all the time. She gets diarrhea very easily. She was a really fussy baby and had reflux. She gets a lot of respiratory infections (this could also be due to her allergy to grass). Something interesting in hindsight is that she seemed to naturally avoid some things with wheat or gluten. In fact, I got in trouble with her Kindergarten teacher for packing only veggies and fruits in her lunches (no protein), but it was all I could get her to eat at the time because whenever I packed something with protein it was in a sandwich or rolled in a tortilla.

One of the things that has me thinking that she may be suffering from celiac's rather than an intolerance is that her symptoms happen immediately after eating sometimes actually in the middle of eating. I had also had her on a gluten free diet for 2 weeks, then she ate tacos with her dad and threw up that night with no other symptoms that would lead us to think it was the flu or anything else. In a way, I agree with my dr. in that why should she have to go through the yucky testing just to have the same results. But, then wonder in my head if she should actually be tested. Any thoughts? Thank you!

[teresasupermom]

I agree with the others. I would have the blood test done to screen for it. If it comes negative you can always do a gluten challenge to see if she's intolerant to gluten, but if it's positive it will be easier to get accommodations and such at school. For me there were just a ton of reasons to formerly test. I have also had most of my other kids screened since they are higher risk. (So you know your feelings sound just like mine. I felt like such a jerk. I used to tell my dd "Your stomach always hurts" when she'd complain. She would always complain about it during times when she didn't want to do things. I thought she was trying to get out of things. Then one day I told her the next time she complained we were going to the doctors because this was getting to be too much. I'm so glad I took her in.)

[mscrzy1]

Thank you, everyone, for your replies. I have discussed all your replies with my husband and he and I both have agreed that we should get the blood testing done on her. She's been off gluten since the allergist told us his suspicion of her being gluten intolerant. That was 8 days ago. How long should I have gluten reinstated in her diet for the test to be viable? I want to make sure that if I make her go through this, the test will have a lower chance of resulting in a false negative.

[mushroom]

You could have her tested tomorrow (might not be too late) and if she is mildly positive, she would have to consume gluten for two months at the equivalent of 3 to 5 slices of bread a day to bring her antibody levels back up for a positive reading (if she in fact is going to be a positive tester). If you get the testing, make sure that they do a total serum IGA to be sure that she produces normal quantities of general antibodies, because if this reading is low it invalidates the other celiac IGA tests.