Talk to me about pros/cons of celiac testing

[2boyzmama]

My oldest son has been off gluten since mid-Jan, and it has made a WORLD of difference for him!! He has a well-kid appt in April, and I'm going to tell the dr the response we've seen. What I can't decide is if I want to go through with the tests for Celiac.

I know that the blood test is highly inaccurate.

I know that he has to be back on gluten in order for a biopsy to be accurate (does anyone know how long? Days? Weeks?)

I know that a biopsy is no small thing (my middle son has had four surgeries, so unfortunately I've been down that road many times)

So what's to be gained by "officially" diagnosing it (if that's even what he has, maybe it's just an intolerance/sensitivity and not celiac at all)?

[tanyalynn]

If you get a celiac diagnosis, you'd be able to deduct some of the extra cost of food on your taxes, though I think that still may be in the medical expenses category, so you'd need a good chunk of expenses first before anything would be deductible.

Some people find the diagnosis helpful either in dealing with the outside world (schools, future doctors, anyone your child's in a food situation with), or with maintaining compliance with a GF diet. It could make the food issue easier with family, if there are issues there but a medical diagnosis would help.

It's not officially recognized as the way to test for celiac, but there's a stool test from Enterolab that looks for antibodies, and IIRC you don't need to be eating gluten currently for that--I think it's within 1, maybe 2? years of eating gluten. So that's lab results, but probably not an official diagnosis unless your doc is alternative-minded.

[organicmidwestmama]

if you know your child does better without gluten and you feel committed to this, i don't see why you'd need to have celiac testing, unless as tonya explained, it makes you feel legitimized by docs, family, or school, etc. and that could be important depending on your lifestyle. but really, no one needs gluten-containing food, it's not a nutrient, and it is something many people are sensitive to even if they arent allergic, celiac or even technically intolerant to. i know our western world is wheat obsessed but theres a lot of food that people have thrived on for milenia that is totally wheat/gluten free.

[meg-momto2]

i'm in the same boat but for both myself and DS. my blood work came back negative in Feb. but i'm seeing a huge improvement in the 3 weeks i've been gluten free. my sis and mom have gluten intolerance but neither have been tested for Celiac although my sis showed a reaction to gluten on her IgG testing. DS is having tummy problems and i may push for him to be tested beyond a blood test(done yesterday) only because he is so young and having the official diagnoses would be helpful with family, friends and school.

[2boyzmama]

Thanks all.

If I were to decide to do the biopsy, do you know how long he'd have to be back on gluten for it to be accurate?

I think the reasons I'd lean towards the biopsy is so we know how strict we have to be. Right now, for example, I'm letting him have regular oats, not certified gluten-free oats. I also am not worrying about cross contamination in our kitchen, at restaurants, etc.

We've had slip-ups twice, and both times there was an obvious behavioral reaction within hours (intense tantrum, including self-injury behavior) but then it passed within a few hours and was over.

Oh, one more question...being off gluten has helped firm up his stools, but he's always had enlarged lymphnodes in his neck, and those have not changed at all. So either it's not gluten causing those, or he hasn't been off it long enough yet. Any thoughts on that?

[tanyalynn]

DD's tonsils getting smaller were the last thing to change, but that took only about a month. But we also cut out dairy at the same time, and as best I can tell, DD is only intolerant of those two foods.

Hopefully someone else chimes in, IIRC it's 6 weeks of a considerable amount of gluten (equivalent to several slices of bread) per day for the biopsy. I don't know what the false-negative rate is for biopsies--can they just miss a damaged section? I just don't know.

[baby-makes-3]

Before submitting to the biopsy, I would seriously contact the celiac organization http://www.csaceliacs.org/ or 877-CSA-4-CSA and talk to them.

My dad has been clinically diagnosed with celiac sprue and I was reading somewhere in his Living Without magazine that there are some other tests (man, can't recall them now, one was pro-something) that many mainstream docs don't know about. There is a lot of research going on, but that organization should have the latest and greatest if something is available.

I wanted to get DD tested but the ped said that unless she is showing symptoms, they wouldn't test, and that even if she had the antibodies for it they wouldn't recommend a GF diet becaiuse many who have the antibodies don't develop the disease. I asked, "If she has the antibodies, wouldn't it make sense to avoid gluten to PREVENT the disease??" Then I remembered that conventional medicine is not about prevention.

Anyway, if your child is indeed celiac, I'd want to know for sure, if for no other reason to be able to reason with him at a certain age that this is a chronic, lifelong commitment he will have to make to have a GF diet. Granted, most of us would do better without such a wheat-intensive diet, but if his intestines are being damaged, you want to know.

[babybun]

We chose to have the biopsy after DD's bloodwork came back positive (she was 2 at the time). We wanted to know if we were dealing with intolerance/sensitivity (which could improve and change with age) or with Celiac (permanent auto-immune disease). It was Celiac, and I'm glad we have a confirmed diagnoses. They told us she had to be eating gluten for about three weeks prior to the biopsy, but a few crackers a day would suffice.

My DH was also later diagnosed with Celiac, and he also chose to do the biopsy.

[kjbrown92]

And if you're seeing improvemet, I'd take him off the regular oats as well. Many newly diagnosed celiacs are told to stay off any oats for the first year, then to try the gluten-free ones (all of the celiacs I know have been told that, but I'm not sure if all GI doctors say that). So the lymph nodes could still be because of the gluten. We're "only" gluten intolerant, and we avoid cross contamination.

[baby-makes-3]

I have read that oats do not inherently have gluten in them, but they are normally harvested so closely to wheat that there is cross-contamination. But if they are grown separately, they are okay (or so the article said).

[kjbrown92]

But a lot of people who can't do gluten, also cannot do gluten-free oats, so it's not always just a cross-contamination issue. I have heard that the proteins are similar. We are gluten free (DD2, DS, and I) and we just trialed the gluten-free oats recently, and we failed. Our friend down the road who is celiac can't do oats (and her two gluten-intolerant children can't either).

[dannic]

We decided against the biopsy, tho we did go the enterolabs route. We also avoid xcon, as dd is extremely sensitive to gluten (cannot be in a house with a gluten item baking in the oven). Our whole family went gf so as to avoid xcon and we are all healthier because of it.

DD cannot tolerate oats. many are processed on the same equipment as wheat so that can be another source of cross contamination.

[balancedmama]

what about trying some of the non-invasive tests and just see what you get from them? and then once you have those results, you can decide about the biopsy. I had my gliadin antibody level tested through saliva.

I have heard that you need to be consuming gluten for some of the tests to be effective, but I'm not sure which ones.

[gilamama]

if your son is still eating reg oats he is still eating gluten, just significantly less. while probably not the best thing for his health... this might give you more options in terms of testing but you'd have to ask someone who really knows. maybe call entero labs.

[baby-makes-3]

Originally Posted by kjbrown92

But a lot of people who can't do gluten, also cannot do gluten-free oats, so it's not always just a cross-contamination issue. I have heard that the proteins are similar. We are gluten free (DD2, DS, and I) and we just trialed the gluten-free oats recently, and we failed. Our friend down the road who is celiac can't do oats (and her two gluten-intolerant children can't either).

That's pretty interesting. The article where I got that was in a Living Without Magazine. Wish I could remember which issue, but it's at my dad's house. He's been wanting to try oats for a long time and I was excited to read that -- but maybe the proteins are similar like you said. I think it's the same for being sensitive to dairy -- goat's milk has a similar protein to cow's milk....

[balancedmama]

The oats thing is confusing...I have read some articles recently which state that gluten-free oats are okay for a lot of celiacs, that some of the confusion in the past was just due to the contamination. That's obviously not the case for everyone though.