Just Diagnosed...is It Wise To Go Get 6 Year Old Tested?

[slee11211]

Would love to hear from other parents on this. I have a little 6 yo guy who hates needles with a passion that is hard to describe! I am on the fence about putting him through testing for Celiac...I was just diagnosed and given what I am seeing with him, I suspect he could be going down same road. He gets hives at random. He cannot tolerate milk so i switched him over to lactose free and his chronic constipation eased up. It's nothing horrible, but given that he's a really energetic kid with some focus issues (again, not horrible, but makes me wonder), and he's more often than not fighting a virus, I have to be smart here. Not sure how much of this is just normal kids stuff, but given that I have this, I'm thinking test.

Our pediatrician is a very common sense doc who rarely intervenes (believes in no antibiotics unless absolutely critical, let kids be and they will be fine). So the practice seemed to raise eyebrows when I asked if I should have him tested. They are also fighting me on the "lactose intolerant" bit because he didn't have diarrhea, but was constipated. This is exactly how I reacted to milk too, and switched to soy and was fine.

I'm just wondering if I should get him to a ped that specializes in Celiac so that I can find out (we're in NYC, there should be some here), of if I should just insist and ask for a specific blood test with regular ped. Or just forego altogether and not put him through something he will be horrified with (vaccinations are tough enough) and just put him on my diet. What I found with the lactose intolerance was that his school wouldn't go along with any special dietary adjustments unless they heard from doctor that it was diagnosed. I'm thinking if I just "put him on" a gluten-free diet, I'll just be seen as the "crazy mom" who has made up a crazy illness for her kid. Dont' want him to deal with that.

Any advice for me?

[T.H.]

My advice, based on how it went in my family and a few I've spoken to:

1. I would highly recommend either testing him, or putting him on a gluten free diet as strict as yours for a few months to a year. Some people are sensitive enough to gluten contamination that their symptoms won't go away unless they are on a very strict diet, so if you just go the diet route, I would be just as strict with him as you are with yourself, you know?

2. Benefits of getting tested, if it's positive:

- doctors will be easier to talk with about this. However, any doctors who AREN'T GI docs are often utterly useless when it comes to celiac disease. You may have to remind them that you are gluten free every single time there is medication. Same with pharmacies, and REALLY the same with anything in an ER. You'll have to remind them every time they give you ANYTHING in the ER. It's pretty sad.

- schools have to accommodate him at school, and as you've already had trouble with that, I'd say it will be a problem. Especially with what your son will need. Playdough has gluten, certain art supplies have gluten. Eating at a table, if other children drop gluten crumbs over his food or touch it with their gluten contaminated hands, that can get him sick (if he's celiac) and the school will have to monitor his safety more in these situations. That's hard to do without a diagnosis or at least a doctor's note.

- In the USA, celiacs are not allowed to join the military. If he has a diagnosis, it is an automatic medical discharge or disqualification.

- college dorms with cafeterias can be an issue, especially for those that require you to buy a cafeteria plan with a dorm room, unless you have a medical waiver for this.

- If he goes gluten free now and desires to be diagnosed later, at the moment they require him to eat gluten again for months before the test. This is because the test only recognizes damage done to our body and how we react to it. It doesn't actually have something that identifies 'this is celiac disease.' For many of us, eating gluten after being gluten free is pure hell, and can actually be dangerous. The reactions tend to be worse, but for some people, the reactions have been so bad that people have been hospitalized. Now, the latter is not the most common situation (although worse symptoms are), but it's a risk you need to know about, and sadly, most doctors DON'T know about this so wouldn't mention it.

- some generic drugs are not gluten free, so you may need to have the brand name (or the other way around) and this can be trickier to get payment for from the insurance companies without a diagnosis. Although your doctor sounds like, based on symptoms, they might be willing to say gluten intolerance, which might do well enough.

Benefits of not getting tested:

- no child screaming spasm of doom, and the resulting angst. Both my kids are terrified of needles, and I ended up getting them both tested. It was horrible. Screaming, holding the little one down on my lap as someone else held their arms...god, awful.

- No matter what the results of the test, it's probably a good idea to try the diet, so the testing itself likely won't affect what you actually DO with your child.

- Testing is not required for what you need to do to stay healthy as a celiac: changing the diet. And since you don't need any medication for this disease, you don't need the diagnosis for that, either.

- Insurance won't have issues with putting your child on a policy later on in life if he doesn't have a diagnosis of a genetic disease.

- no cost for the test, if you don't have insurance.

- it looks like new tests, that don't require huge periods of gluten ingestion, may be coming in the next decade or so. (saliva screening is an example). So there may be testing possible later, if desired, although it's not certain.

For myself, if your little one is still consuming gluten right now, I'd get him tested with a blood test - they have some folks here who are very test knowledgeable, and I'd get some idea from them for the tests themselves. It's a blood panel, and there are some tests that WERE more commonly used, but there are other tests that are actually better for a diagnosis and may have to be requested specifically.

If the test is positive, then considering your own diagnosis, I wouldn't go further with testing. If it's negative, I'd take him off gluten anyway. And for your children (and siblings, AND parents) it's recommended that they get tested for celiac disease every few years, once someone closely related has been diagnosed, because the disease can trigger at any time.

My father was diagnosed, and we didn't know we should test anybody else. I was diagnosed 8 years later by accident, and I've likely had this disease for 20 years or so, so I COULD have been diagnosed 8 years earlier. We had everybody else tested after that. My daughter, with no gut symptoms, came back positive. So did my brother.

My son was negative, but we tried the diet with him anyway, and he had symptoms go away on the diet, so he's on it now, too. And many of the symptoms you mention with your son, my son had too. No constipation, but focus issues, high energy, sick all the time. Dairy problems. My little guy had big anger management issues, too.

And interestingly, my son's dairy issues pretty much went away after he was gluten free for a few months.

Constipation is one of my gluten symptoms, if I get it continually, so that could definitely be an issue, too.

If you know of a ped. who specializes in celiac disease, I would very much go for it. However, you might be surprised at how unlikely this is, even in large cities. There is SO little knowledge about this disease in the USA, it's pathetic. We've been looking 2 years now for good doctors in all the fields we need, and still looking.

Wishing you good luck with your little one!

[slee11211]

If you know of a ped. who specializes in celiac disease, I would very much go for it. However, you might be surprised at how unlikely this is, even in large cities. There is SO little knowledge about this disease in the USA, it's pathetic. We've been looking 2 years now for good doctors in all the fields we need, and still looking.

Wishing you good luck with your little one!

[frieze]

Would love to hear from other parents on this. I have a little 6 yo guy who hates needles with a passion that is hard to describe! I am on the fence about putting him through testing for Celiac...I was just diagnosed and given what I am seeing with him, I suspect he could be going down same road. He gets hives at random. He cannot tolerate milk so i switched him over to lactose free and his chronic constipation eased up. It's nothing horrible, but given that he's a really energetic kid with some focus issues (again, not horrible, but makes me wonder), and he's more often than not fighting a virus, I have to be smart here. Not sure how much of this is just normal kids stuff, but given that I have this, I'm thinking test.

Our pediatrician is a very common sense doc who rarely intervenes (believes in no antibiotics unless absolutely critical, let kids be and they will be fine). So the practice seemed to raise eyebrows when I asked if I should have him tested. They are also fighting me on the "lactose intolerant" bit because he didn't have diarrhea, but was constipated. This is exactly how I reacted to milk too, and switched to soy and was fine.

I'm just wondering if I should get him to a ped that specializes in Celiac so that I can find out (we're in NYC, there should be some here), of if I should just insist and ask for a specific blood test with regular ped. Or just forego altogether and not put him through something he will be horrified with (vaccinations are tough enough) and just put him on my diet. What I found with the lactose intolerance was that his school wouldn't go along with any special dietary adjustments unless they heard from doctor that it was diagnosed. I'm thinking if I just "put him on" a gluten-free diet, I'll just be seen as the "crazy mom" who has made up a crazy illness for her kid. Dont' want him to deal with that.

Any advice for me?

He probably is NOT lactose intolerant, but casein intolerant. And why can't parents send packed lunches for their children and simply explain that their child is to not have any food that was not brought from home.

[Skylark]

He really needs to be tested. If he is celiac, you will have a firm diagnosis for school and college.

As far as needles, when I was a kid, I was able to overcome a lot of things I hated when bribed with candy. It was about the only way Mom could get me to the dentist. I had to go a lot becasue like most folks with undiagnosed celiac, my tooth enamel was (and still is) awful. Mom didn't allow me much sugar but after a dental appointment I would be treated to the unthinkable luxury of a whole candy bar!

[T.H.]

when I was a kid, I was able to overcome a lot of things I hated when bribed with candy.

Man, I envy your mom! I was kind of the same way. I didn't like it, but if there was something good to look forward to, I could get by.

My kids are just like a freaking sitcom; I'm sure I'll laugh about it when they are older. We plan activities to do that they love afterward, snacks they love, some special thing...never helps.

Last time, I literally had to plant myself in front of the door out of the lab as my son was going to run outside and into the parking lot. Then I got to drag him across the room, plus the chair he snagged as I was carrying him, and had to have the lab's help to untangle him from the chair. Took three of us to hold him down, and this was the third try because we really, really tried to do it calmly and sanely, and he could calm down until he would see the room with the needle and then he loses his mind and tries to run for the hills screaming. Literally. It is unreal.

He's 9 years old, too. Sigh...I think he's really 9 going on 12 months when it comes to shots. Although to be fair, he's had a few bad needle experiences before, like when they couldn't find his vein when drawing blood, so I'm hoping that when he's had a few experiences that aren't so bad, this utter terror will fade.

I pray daily that this terror will fade, more like.

[sreese68]

Absolutely have him tested while he's still eating gluten. I wish I had had my kids tested when I first went gluten-free. (I had negative bloodwork, so wasn't sure gluten-free was my answer until after having myself and the house gluten-free for 2 months.) Anyway, at this point, it would be VERY hard for me to have my kids eat gluten for 2-3 months prior to a test. I'm very sensitive to cross contamination, so having it eaten in the house by 4 messy kids would just be a disaster for me! We're trying to figure things out with an elimination diet, but it's hard.

Anyway, I also get constipated when I eat dairy. Takes a few days for it to set in, but it does!

[domesticactivist]

If your son is gluten-free, just packing a lunch for him will not be good enough at school. He'll need more accommodations than that, like actual handwashing in the classroom, careful screening of craft supplies, wiped down tables, special treats on party days, etc.

My son does not have an official diagnosis. We went gluten-free before learning all about celiac testing and I kick myself for it on a regular basis. We didn't want to subject him to more blood draws and doctor trauma (boy, it would have been nice if we'd figured out what testing was necessary when he still had his IV in!). By the time we had the full story, we'd have had to put him back on gluten to test. Even minute exposures had him back in terrible bone pain, digestive probs, and brain fog. There is no way we can redo all that damage just for a test result now.

We are committed to the diet 100%, but we are also homeschoolers with a lot of control over our food and way of life. The kids do attend classes and camps, but I've never had one ask me for a doctor's note the way the schools do. They tend to take me at my word, and attempt to make accommodations (though this week our son got glutened from a lunch table). Our son is also 100% committed to the diet - he remembers feeling awful. Some people find that without a test result, though, they can't take it seriously. Some people find that their family becomes a huge source of conflict without test results... for example grandma sneaking the kid "treats."

The one problem I'd be worried about with testing is the potential of a false negative. Of course there could be a true negative. But if you get a negative result and then later decide to take him off gluten, you will have a much harder time getting other people's cooperation.

[mommyto2kids]

I can relate so much to your post. Yes last year with my son's teacher, I was the crazy mom. And you hit it on the nail that the school wont listen unless a Dr. diagnoses it and in his file. My school didn't even comply with that. I've been doing a lot of reading and schools can be in a lot of hot water legally if they don't comply with a Dr.'s written notice in their file. I read up on the I forgot if it is the 504 plan or 405 plan described in a recent magazine, Living Without. Look up the plan. It is a federal gov. plan and under the FDA. If you can't find it, I'll look for the web site. I learned a lot reading it. I had behavior notices in my kid's file re dyes in food. The teacher thought I was crazy and ignored it.

[domesticactivist]

I want to add that even if the school he is at now seems very accommodating without a doctor's note, there will be so many more teachers and administrators to deal with down the line who may not be! If you have the ability to get a good dr note in the file now, it will serve your son for the next 12 years at least. If he chooses to go to college, many of them have rules about living on-campus and eating in the dining hall the first year. He would need official paperwork to get accommodations made in that situation, too. So if you can get that note now, it will be well-worth the hassle and momentary discomfort.

[slee11211]

I want to add that even if the school he is at now seems very accommodating without a doctor's note, there will be so many more teachers and administrators to deal with down the line who may not be! If you have the ability to get a good dr note in the file now, it will serve your son for the next 12 years at least. If he chooses to go to college, many of them have rules about living on-campus and eating in the dining hall the first year. He would need official paperwork to get accommodations made in that situation, too. So if you can get that note now, it will be well-worth the hassle and momentary discomfort.

Thanks so much! This makes perfect sense. I think I'll just bite the bullet and get him to one of the docs at the Columbia Disease Center, so that a proper test is done. Again, thanks for all the info.

[HaileyRay812]

Thanks so much! This makes perfect sense. I think I'll just bite the bullet and get him to one of the docs at the Columbia Disease Center, so that a proper test is done. Again, thanks for all the info.

My daughter is almost 3 and she had the blood test done for Celiac recently. She really is a drama queen, so I dreaded taking her but it went perfectly! The nurse could not believe how well she did. The test did come out negative, but I recently went to an MD who practices integrative medicine who told me it takes about 10 years of celiac to get a positive blood test. I am getting tested for celiac next week and am being tested for the genetic markers since my dr. will not see children.

[Roda]

I recently went to an MD who practices integrative medicine who told me it takes about 10 years of celiac to get a positive blood test.

There are plenty of children who test positive on blood tests..There is a higher rate of false negatives though.

[lovegrov]

Every first-degree relative should be tested -- parents, siblings, children. Might sound silly but my 70-year-old father came back highly positive with no obvious symptoms. He feels better gluten-free overall.

richard

[sariesue]

Without an official diagnosis schools don't have to do anything, and in some cases can't. Even with a diagnosis you will probably need a 504 plan to have the school comply fully. Then you and the planning and placement team can decide what accommodations are needed for your child. Without any official diagnosis schools have the right to say no to your requests. For example, with school lunch if you have a diagnosis and proper documentation of lactose intolerance(example) the school has to give the student an alternative to milk as a component of lunch. They do not need to and can't in CT provide the alternative option if you just don't want your son to have milk with school lunch and want them to have juice instead. The school cannot make the substitution of juice for milk without a dr's note because milk is a component of a complete lunch just like protien and veggies.

[pain*in*my*gut]

Last time, I literally had to plant myself in front of the door out of the lab as my son was going to run outside and into the parking lot. Then I got to drag him across the room, plus the chair he snagged as I was carrying him, and had to have the lab's help to untangle him from the chair. Took three of us to hold him down, and this was the third try because we really, really tried to do it calmly and sanely, and he could calm down until he would see the room with the needle and then he loses his mind and tries to run for the hills screaming. Literally. It is unreal.

OMG, this is MY SON!! I took him to get his finger pricked last winter because he was complaining of headaches, feeling "barfy", and he was so pale! The minute the nurse got out the lancet to prick his finger for a H&H, he jetted off the exam table, ran out of the exam room, screamed thru the waiting room and was headed for the car in the parking lot before I could grab him!!! I drug him back in there, and he was so worked up and uncooperative that we skipped it. Now, I wish we had just held him down, because I suspect he is anemic and possible Celiac.

Also wanted to add, I agree with pursuing the testing for a concrete dx before going gluten-free. We are talking about putting our kids on a challenging diet for the rest of their life! While I may be able to control what he eats now, in a few years peer pressure and convenience factors will come into play, and if he thinks that his mom just had him on a strict diet because she was neurotic or just liked to eat healty, he is more likely to eat gluten again and have to go thru all the testing and misery all over again. Plus, schools and family are more likely to follow his dietary restrictions if there is a confirmed diagnosis. I realize that there is a possibility of false negatives with testing, but I think we should do everything we can to get to the bottom of things.

[pain*in*my*gut]

Would love to hear from other parents on this. I have a little 6 yo guy who hates needles with a passion that is hard to describe! I am on the fence about putting him through testing for Celiac...I was just diagnosed and given what I am seeing with him, I suspect he could be going down same road. He gets hives at random. He cannot tolerate milk so i switched him over to lactose free and his chronic constipation eased up. It's nothing horrible, but given that he's a really energetic kid with some focus issues (again, not horrible, but makes me wonder), and he's more often than not fighting a virus, I have to be smart here. Not sure how much of this is just normal kids stuff, but given that I have this, I'm thinking test.

Our pediatrician is a very common sense doc who rarely intervenes (believes in no antibiotics unless absolutely critical, let kids be and they will be fine). So the practice seemed to raise eyebrows when I asked if I should have him tested. They are also fighting me on the "lactose intolerant" bit because he didn't have diarrhea, but was constipated. This is exactly how I reacted to milk too, and switched to soy and was fine.

I'm just wondering if I should get him to a ped that specializes in Celiac so that I can find out (we're in NYC, there should be some here), of if I should just insist and ask for a specific blood test with regular ped. Or just forego altogether and not put him through something he will be horrified with (vaccinations are tough enough) and just put him on my diet. What I found with the lactose intolerance was that his school wouldn't go along with any special dietary adjustments unless they heard from doctor that it was diagnosed. I'm thinking if I just "put him on" a gluten-free diet, I'll just be seen as the "crazy mom" who has made up a crazy illness for her kid. Dont' want him to deal with that.

Any advice for me?

If you were just diagnosed, then you must get him tested. All first degree relatives (your parents, siblings and children) need to be tested, and if negative, they need to be retested every 1-2 years, even if they are asymptomatic.

You need to know what his status is, so that you can do what is necessary to protect his health not just now, but for the rest of his life.

I am in the same boat...my 6 year old has been showing signs for a few years. I don't have my "official" dx yet (biopsy is in 3 weeks), but all signs point to Celiac for me. I will be getting him tested as soon as I get my biopsy results (even if they are negative, as my blood work shows gluten intolerance at the very least, plus I have the gene). Gosh, I wish this disease wasn't genetic!!

[Schatz]

What is the percentage of false negative?