Should We Test Our gluten-free Son? Please Read...

[Seeking-Answers]

Hi there! Thank you so much for taking the time to read my post =)

My 7-year-old son has been on a gluten-free diet for over 2 years... After years of out-of-character temper tantrums & uncontrollable emotions we tried gluten-free and haven't looked back. It has been amazing, as most of you understand.

I am tired of having to fight for a gluten-free diet b/c he is gluten-intolerant and not officially Celiac. I don't want to fib and say he is when we don't know for certain because that's not the example I want to set for him, and I don't want to put him in a position where he has to lie. He is still so young and he is tired of defending himself as the kids debate his friend's nut allergy to his intolerance. Yes. Kindergarteners debate this =)

A little background: My husband is also on a gluten-free diet (the entire family is) but he is still a medical wreck and working with a naturopath as well as his primary doctor (chronic fatigue, restless leg, sleep apnea, chronic acute gout, anemia and cataracts to name just a few! Mind you, he is 41, slim build, runner/active and has been dealing with these for years...). My mother-in-law has rheumatoid arthritis and my sister-in-law has lupus. Anyone see a common thread?? =)

I spoke with our pediatrician and he explained that my son has to be on a gluten diet (which I knew but forgot!) and that he had to be consuming gluten for 6 weeks. How much gluten does he need in his diet?? I don't want to just give my son the green light to eat whatever he wants... Because he is only in 1st grade and has been absolutely amazing through all of this... I don't want him to be tempted by all the gluten/sugary/addictive foods he has avoided for 2+ years. My hope is that I can explain he needs gluten... and that we will still make good choices and eat healthy but I will make some substitutions "behind the scenes" (soy sauce, pasta, daily vitamins, oatmeal, granola bars, etc...)

I'm eager to do this before school starts because it so greatly affects his ability to focus in the classroom also...

In a nutshell: How much gluten does he need for these 6 weeks? Would you test? Which test? Had planned to go through pediatrician and insurance.... Why would you recommend Enterolab?

Thank you, thank you!!!!

~Nicole

[sa1937]

Welcome to the forum, Nicole! I simply can't imagine putting your son back on gluten when he has been doing so well for the past two years being gluten-free. As a parent (although my children are grown) I couldn't bear seeing my child be sick just to get an official diagnosis...and even then, it's iffy if he would get a positive celiac panel.

For adults the general rule of thumb is to eat 3 to 4 slices of bread daily for 3 months before being tested for celiac not knowing if even that would give you a positive test. There is celiac in your family and there is a genetic link. Check these Open Original Shared Link from the U of Chicago Celiac Disease Center.

I'm sure others will chime in here who have probably faced your dilemma.

[lilu]

That's a tough one for sure. I have to agree with Sylvia, though. Putting a label to something is not nearly as important, in my opinion, as staying well is. You know through your personal experience what gluten does to your child. The longer you're on the forum, the more stories you will see about inaccurate diagnoses. And what happens if the tests come back negative? How then will you justify to your gluten-free child why they should continue to eat gluten-free?

Recent studies have validated Non-celiac gluten intolerance as a real condition (though still no definitive diagnostic tools). It is currently a diagnosis of exclusion (like IBS or fibromyalgia). Basically if no tests are positive but the individual responds well to gluten-free diet, and symptoms return when gluten foods are reintroduced, gluten sensitivity can be assumed.

I'd talk to your son's pediatrician and see if he agrees that your son is gluten intolerant. Then you have a "diagnosis" to stand on and you won't feel you have to gluten your child to get it.

You could also consider just doing the genetic testing to see what his risk level is. If you do this, I'd highly recommend you do it through Prometheus because they test both alleles for each gene instead of just the Beta allele. Beta allele will tell you if you have a straight DQ2 or DQ8, but won't pick up trans genes (half this, half that).

Good luck to you.

[melikamaui]

I'm with the other posters, it wouldn't be worth the risk for me. I can't do a gluten challenge with my youngest son (I believe, as does his pediatrician, that he wouldn't live through it) but I wouldn't do it with my oldest either, who shows much less outward symptoms than his brother. Your son is clearly gluten intolerant. Would that label alone be enough to get what you need done with his school? My doctor diagnosed my youngest with celiac disease without the "gold standard" testing. She didn't want to put him through it and could tell from his blood panel, genetics, and how improved he is on a gluten-free diet that he has it.

My youngest son has terrible behavior issues when he has anything with Red Dye #40 in it. Tantrums, screaming, hitting. Things that are all VERY out of character for this love-bug little guy. When people ask why I won't feed him anything with artificial colors in it I simply say he has an allergy to dyes. It may not be the right terminology but I don't care. I have never had a doctor tell me he has an allergy or intolerance to dyes, I don't need to. I know he does. You know your son has a gluten intolerance. No testing needed if you don't want to do it.

[zimmer]

I am tired of having to fight for a gluten-free diet b/c he is gluten-intolerant and not officially Celiac. I don't want to fib and say he is when we don't know for certain because that's not the example I want to set for him, and I don't want to put him in a position where he has to lie. He is still so young and he is tired of defending himself as the kids debate his friend's nut allergy to his intolerance. Yes. Kindergarteners debate this =)

With whom are you having to fight for a gluten-free diet? His school? Can you just make his lunches? He is old enough to learn what he can and can't eat, and help you pack his lunch. And when there are school parties, etc. maybe send his own food, or he can learn to say, "no, thank you, I don't eat cake, but I love ice cream!"

And, as a parent of a child the same age as yours, I don't think a diagnosis will make much difference in the kindergarten / first-grade argument department! Maybe you can help him with coming up with some answers to his classmates - "it's different than an allergy" "it gives me bad stomache aches" or " yeah but I can read / run faster than you!" or something.

I know it's hard to deal with him and school, but I agree that it would be confusing for him and painful for everyone involved to do a challenge. Good luck with him and your husband, too!

[T.H.]

I'm in the 'wouldn't test' category.

First reason has to do with how little we know about the disease itself. A study was mentioned here on celiac.com - can't remember how many months back, but only a couple at most, I think. It was looking at people who have had a gluten challenge in terms of months. The chances of a celiac developing a completely different auto-immune disorder on top of celiac disease jumped if they started eating gluten again. The more months they ate gluten, the higher their chance of having this happen. Considering your family history, you might want to see if you can hunt down that study. I was trying to find it, but the internet is slow today and I was having terrible luck, so sorry! Best I could do was just find an article by a doctor on celiac.com that questioned the idea of a gluten challenge for a test without proper warnings:

gluten challenges

Second reason is because it will not change in any way what he eats. Damage to the child for a chance at a diagnosis that, to many, won't have any more impact than NOT having the diagnosis would? I don't think it'll really be worth it. People still won't understand, won't care, or will actively disbelieve it's a real issue. Especially kids - kid reality is always different, yeah?

With a diagnosis, schools are still a pain in the butt to deal with usually, I understand. Hospitals and pharmacies don't pay attention at all and have to be constantly reminded over and over...and in the end you are likely to say 'gluten allergy' anyway, because they truly think that gluten-free isn't all that big a deal if it's celiac disease and you'll just 'have an upseet stomach' for a day. Really, not kidding. Have had ER docs tell me essentially that as they tried to get me to take meds that they hadn't even bothered to check on gluten-free status.

Third reason I wouldn't test - I would wait to see what tests are coming down the pike. There have been some interesting things done in studies right now that DID have positive results testing for celiac disease. They do not require damaging our kids to the extent that tests now do. But they are not officially tests at the moment. Hopefully, they will be within the next 10 years. As an example, one study was swabbing a gluten coated swab on the inside of the mouth of celiacs and non-celiacs. Within 5-15 minutes, you could detect the results of an immuno-response in the same area for celiacs, but not celiacs. That sort of test - much easier and less harmful to our kids, yeah? Still only celiac specific and not gluten intolerance, but...much better, I would think.

Something to that effect is mentioned here:

saliva screening in children

I have one child diagnosed and one child not, at this point. The one who was not diagnosed is still gluten free due to symptom resolution. A while after he was tested, I found out that he had not been given the tests that have the best chance of diagnosing when he was tested for the disease. I decided not to test him again, but at 1 year gluten-free, I thought we'd do a gluten challenge for a week, just to make sure he was really 'reacting' - his symptoms are actually relative mild, I thought. No 'gut pain' but bloating and the runs a bit.

He did react, mildly again, but SINCE we did the gluten challenge, just for a week? Now all of a sudden he's started having gut pain to gluten cc as well, at much lower levels than we ever noticed a reaction. I'll never know, but I really do wonder if our stupid challenge made things worse for him. I know it has happened to others, so...yeah, I tend to be pretty negative on the whole concept of it, at this point.

[Skylark]

He needs a couple slices of bread worth of gluten a day for around three months. (Adults require 3-4 slices of bread a day.) He will have to eat sandwiches, pasta, gluten-containing cereal, and so forth. If you are only introducing traces of gluten like regular soy sauce or oatmeal, he won't reliably relapse by three months and you will need to feed him gluten longer.

Don't bother with Enterolab if you need a medical diagnosis for schools. Enterolab tests have never been properly validated as diagnostic tests and no doctor worth his salt would diagnose celiac from them. They can indicate the need for a full workup but that's about it. You need to go through your doctor and insurance and have a proper celiac panel and biopsy done.

I also agree with the other posters about whether he really needs the challenge. You need to ask why you are buying into the establishment view that celiac is "real" and gluten intolerance is not. Is it really worth putting him through what sounds like a real emotional wringer to try for the "celiac" label? Perhaps you could rethink the value of fibbing in the face of a dysfunctional school system who won't respect a parent's wishes about their child's diet.