Do We Really Need The Test?

[raesue]

I am currently in the process of performing a gluten elimination test on myself for possible self-diagnosis because of family history and a plethora of symptoms. I'm doing it this way because I realized testing is not financially feasible for me. My area does have government funded health care for low-income children.

I have an extremely mature five year old. Everytime I turn down a food item, she says, "its wheat, isn't it." So she asked what I was doing earlier which was talking to my sister about possibly having her family tested. This led to a discussion about genetics and the likelihood of checking her out as well.

When she objected, I mentioned the one symptom I knew she had, occasional but severe "C". This started at the same age my mom says it did with me. This led to an overly descriptive discussion of her bms. I found out that she has "D" more often than not which is always followed by a tummyache.

The child is terrified of needles, and has begged me to just put her on a gluten-free diet instead. How important is it to actually have the tests performed? Is it enough just to make her gluten-free or to follow up in a few months with a gluten challenge like I'm planning for myself?

[Jestgar]

Some people with kids will tell you that having a positive test helped them with food issues at their child's school, and others will tell you that even with the test results they had difficulty at school.

If you were vegan would you ask for a doctor's permission to feed your children a vegan diet? If you were asian would you worry about them eating rice?

I say go for the diet.

[Skylark]

As an adult, going without testing isn't a big deal. I was never tested.

If I had a child, I would have the tests done. As Jestgar mentioned it's an issue for school and an even bigger issue if she goes to college. She also may rebel in her teens and the positive blood test lets you know if it's really important to keep her gluten-free.

Fear of needles can be addressed. My parents gave me candy after medical procedures if I was good and let them do what was necessary. Pretty soon I decided that putting up with a needle or an allergy prick was a pretty easy way to get something sweet as I wasn't allowed much candy. My mom also did everything she could to stay by my side and even hold my hand if I had to get a shot, which helped. As an adult with thyroid disease, it's awfully nice to not be particularly bothered by a blood draw. (I'm actually headed to the lab today for a test.)

[mushroom]

I can remember as a 9-year-old being afraid of needles - I would physically throw up at the sight of them. But you do have to outgrow this, considering the number of needles we are going to face in our lives. Nurses/phlebotomists are usually very good with kids these days and can make the process less frightening and the pp gave you some good advice. If I had a child I would get her tested for the reasons stated above. The child or the educational system may need that information some day.

[Jestgar]

I can remember as a 9-year-old being afraid of needles - I would physically throw up at the sight of them. But you do have to outgrow this, considering the number of needles we are going to face in our lives.

Dunno. My brother is almost 50 and still avoids needles.

[mushroom]

Dunno. My brother is almost 50 and still avoids needles.

He just never got enough of them

[raesue]

[quote name='Jestgar' timestamp='1307099249' post='7052

If you were vegan would you ask for a doctor's permission to feed your children a vegan diet? If you were asian would you worry about them eating rice

[Skylark]

Good luck, then! I hope the diet helps her feel better and that you get the support you need from your doctor and school.

As for the needles, I'm funny. I don't mind the stick but I can't watch. If I see the needle in my arm I get a little faint.

[tarnalberry]

Totally a personal decision here, and I honestly don't think there is a right or wrong answer. I would, for any child under the age of 18, try to get at least some form of testing done. For all of the reasons stated above, and for the rebellious years (more so in college than at home in high school). But it is so a personal decision.

[Brenna'sMom]

My dd is starting kindergarten in the fall. I am starting to deal with the school now, and believe me, that official diagnosis is key. I am having so much trouble getting the school nurse to understand that gluten will not cause an anaphylactic reaction like peanuts or other food allergies. She has almost zero knowledge of celiac, and it is so frustrating. Everything is beginning to hinge upon my doctor's written explanations and requirements. They are even requiring proof of the diagnosis via her lab results. For what it's worth, the test is not so bad. Find a lab near a pediatrician's office, and they will be great. My 4 year old didn't even flinch.

[domesticactivist]

Yet another reason homeschooling is awesome. It's a sad truth that schools usually won't do adequate accommodations without a Dr note and even then it can be a huge battle. By going gluten-free you eliminate the possibility of testing later. Just because the school you have now for kindy is good doesn't mean come 5th grade (or even next year) anyone will care to listen.

That said, test results could be a false negative, so bear that in mind as well.

[momtok&m]

I've decided to delay testing, I spoke to someone at the lab who advised the same. She said the tests just aren't good enough (I'm talking blood tests here) to diagnose children. My ped. has her diagnosed with GI based on results of changing her diet, iron tests and iron & zinc supplements. DD2 is only 2, hopefully our rural school gets it by the time she's in Good luck to you!

[kadensmom]

We just found out through a blood test and years of constipation that our 3 year old has celiac disease. We are in Canada so apparently here they like to do a biopsy of the small intestines to make absolute certain he does have celiac disease and also shows how badly he has it (what shape the villi is in). This biopsy test is not mandatory and some parents choose to go with the blood test results but after much discussion we have decided the biopsy is a good idea. This way we won't go his whole life wondering should we have done it or wondering just how much damage has already been done over the last 3 years undiagnosed...

Its every parents personal choice and a hard one at that! I'm not looking forward to my child getting a biopsy done and a camera going down his throat but I will take every measure to make sure we are doing everything we can to make him better and happier.