But....but....mac and cheese?!?!?!?
April 28, 2015 12:18 PM   Subscribe

Gluten and dairy sensitivity: Kids edition

My daughter's mom recently took her to a clinic which seems very forward thinking towards food sensitivities. Due to a recent rash the doctor ran a gamut of labs for allergies and sensitivities. Everything was normal except she showed mild gluten sensitivity and mild casein sensitivity. My daughter's mom is convinced that our daughter has always had 'digestion issues', I am fully convinced that she is a normal healthy kid.

The test was a Gluten Allergen IGG test. The result was 'mildly sensitive' at 7.6mcg/ml. The test result had a disclaimer saying that the test was performed using a kit that was not signed off on by the FDA.

The results for the casein test were similar. 13mcg/ml. Result was 'mildly sensitive'. Same disclaimer.

The doctor suggested to her mom that we go on a gluten free and dairy free diet for a month and then evaluate. I am generally opposed to this because I do not agree that there are any symptoms that we are battling in the first place. (other than a rash, which went away on its own)

I know you aren't my doctors and all that, but, any experience with gluten sensitivities and kids? Or dairy sensitivities and kids? My daughter eats everything, is healthy and active, no real symptoms other than normal kid stuff (although this is where my ex and I differ, if I am pretty blase' about the occasional bout of diarhea cha cha cha, she is more vigilant and reactionary than I am)

My limited internet research suggests that there are no real conclusive tests to determine gluten sensitivity. The last thing I want to do is start down some path of 'food experiments' with an otherwise healthy kid. That seems to be a confusing message to send.

Anyone with any experience in this arena?

PS I am not trying to disparage anyone with gluten intolerance. I have a good friend with a nasty bad case of it. Hives, nausea, headaches, the works. So I am not trying to say gluten sensitivity or intolerance isn't real, just trying to suss out the lay of the land.
posted by ian1977 to Health & Fitness (31 answers total) 1 user marked this as a favorite
Low-level allergies can be kind of non-obvious, and can take a while for anyone to realize anything's even going on - especially if they've just been feeling generally kind of "meh" their whole life and don't know that there's a step above "meh".

I'm not entirely sure why you're opposed to the idea of going gluten/dairy free for a month, to be honest - it would cost you next to nothing, and if you get to the end of the month and there is absolutely no change in your daughter's health, then you get the benefit of saying "well, we tried that and nothing happened". And if you notice that it has made a difference, then you'll know. So honestly, I can't figure out what your resistance to at least trying for a month to see what happens is coming from.
posted by EmpressCallipygos at 12:25 PM on April 28, 2015 [10 favorites]

You say occasional diarrhea, how occasional? I have a 15-year-old who suddenly started running to the bathroom after eating dairy, and when she cut dairy out, no more running (so to speak). If there are symptoms, even mild, I don't see the harm in trying a diet adjustment.

What EC said, on preview.
posted by Huck500 at 12:28 PM on April 28, 2015 [2 favorites]

I agree that a month would be enough to set all reasonable minds at ease, and might be surprising.

I wish someone had tried that experiment with me, because as a kid I didn't know what biological situations were normal and what weren't and it didn't occur to me that I might should speak up. You can see the rash, but if she doesn't know to self-report about the runs you don't know about or pains or constipation or weird seemingly-unrelated things like not sleeping as well as she could be or mid-morning energy crashes etc.

It seems like an odd push-back on your end, honestly, that a very common approach to testing food sensitivities is "weird food experiments" that will somehow harm your daughter more than (like in my case) daily bouts of nausea at school.
posted by Lyn Never at 12:32 PM on April 28, 2015 [8 favorites]

I am resistant because I see no symptoms anyway. In my opinion she is a perfectly healthy kid. And because its one month of gf/df, then slowly introduce gluten and dairy and see what happens. Well if nothing is happening now what on earth will we learn?

Plus we already did this once before when the pulmonologist was on board to go gf and df for a month when she had a persistent cough. (which ultimately went away on its own)
posted by ian1977 at 12:33 PM on April 28, 2015

And also, slightly off topic, I worry because her mom has lots of food issues and I am kinda afraid she is hellbent on bringing our daughter into the fold so to speak.

So I would really just like some hard data on the test results. So I can weigh this based on the science and not just heresay and my own biases coming into the situation.
posted by ian1977 at 12:35 PM on April 28, 2015 [5 favorites]

Hard data: there's a lot of evidence that IgG testing for food allergies is bunk. Lots more links in that post.

That being said, a one-month trial without dairy and a one-month trial without gluten doesn't seem completely unreasonable to me. Lactose intolerance (which is not the same thing as caesin allergy and isn't covered under IgG testing) is pretty common and can develop as kids get older (something I know from personal experience).
posted by pie ninja at 12:38 PM on April 28, 2015 [8 favorites]

This is more of a relationship question than a medical question. If you refuse to try this, the issue is not going to go away as long as your daughter continues to have "normal kid stuff". But, memory is a fickle thing and you want there to be real evidence to evaluate how well the new diet works. So, before changing the diet at all, keep a detailed food log for a month or longer, along with detailed comments on digestion and other health issues. Then, before you switch diets, mutually agree on a threshold for next steps-- e.g. if X symptom decreases 50%, then we'll see a doctor again or continue the diet, or whatever.
posted by acidic at 12:41 PM on April 28, 2015 [5 favorites]

Agree acidic. And I don't want it to be a relationship question. I should have left all that stuff out. I want to know the validity off gluten sens. testing for kids.
posted by ian1977 at 12:44 PM on April 28, 2015

If her mom has food issues, and they're genuine, many of those things are genetic, daughter should try it out. If mom has food issues, and they're mostly about complicated emotions, then putting your foot down and saying she's 100% healthy and this gluten-free stuff is unnecessary, this will really put you in the "bad guy" role. Not the "rational real-world-guy" role. I think your best bet is to really dig in scientifically, and help your daughter document how she's feeling, both physically and mood-related, so that the two of you will have good data at the end of the month to rationally discuss how valuable the diet is. Treating it seriously but carefully will set a good precedent with your daughter, so that your daughter may be less likely to jump on food bandwagons as she grows up.
posted by aimedwander at 12:44 PM on April 28, 2015 [6 favorites]

I was coming in to say exactly what acidic said -- because of the poor state of nutritional sensitivity testing, if you want to bring some science into the equation, the best way to do it is to spend a month keeping track of the kid's activity levels, pain levels, bathroom needs, sleep, moods, etc. and then do the elimination diet, and compare. When my daughter was being seen at our local pediatric hospital for quite serious and notable digestive issues, that's what they had us do. If you like I can find the daily tally sheets I used to keep track of things and send it to you; if you and mom both use the same record-keeping device your results will be more consistent.
posted by KathrynT at 12:45 PM on April 28, 2015 [2 favorites]

Do you happen to know what specific test it was? I have a wheat allergy, and did 3 panels (tTG-IgG, DGP-IgG, AGA-IgG).
posted by snowysoul at 12:46 PM on April 28, 2015 [1 favorite]

Thanks aimedwanderer. You hit the nail on the head. I am very worried about starting to go down this path because sans symptoms, I am worried that things will get railroaded into 'welp, looks like she is Gluten intolerant!' and I am kinda powerless to stop it because I have no evidence either way. But you are right, I should just do due dilligence and track things and see what happens.
posted by ian1977 at 12:48 PM on April 28, 2015

snowysoul, it just says 'GLUTEN ALLERGEN IGG.' performed by Quest Diagnostics out of California.
posted by ian1977 at 12:51 PM on April 28, 2015

Oh boy here we go. In the middle of one of these "tests" at the moment myself with my oldest son.

Let me get this off my plate immediately and speaking as someone who used to interact with the FDA on a regular basis although long ago: there is zero absolutely zero science to support any kind of gluten or casein "sensitivity." None. With gluten it is entirely binary: you can or can't, and the people who claim a "sensitivity" should probably look at their overall diet. Same goes for dairy, although much anecdotal evidence suggests that, like with many things, some people need to moderate more than others to feel comfortable. There is a recent and very good meta-study debunking the entire gluten sensitivity "problem." If you're comfortable with big statistics memail me and I'll send it to you.

I have ...experience with family members with these "problems" et al.

So all that having been said, I think there are two issues here. One is relationship harmony, which impacts the kiddos and is not to be lightly discounted. A month long test is no big hardship. That said, a month long non-controlled test isn't going to prove much one way or the other, but to preserve harmony it's probably worth it.

However - and I do not know your kid - placebo effect is A Thing, a Big Thing. My main concern is your kid convincing him or herself that milk/bread = bad feelings and that this will continue indefinitely causing much strife.

So I'd advise going along with the plan. My personal belief unbacked by any science (unlike my earlier claim) is that people with various "sensitivities" do better on whatever-free diets exactly because this supposed sensitivity forces them to pay attention to what they are eating and how their body reacts to that. Everyone does better with some foods rather than others without it being a pathology, so paying attention to one's diet is a good thing for most people, I think.

But forcing potentially life long placebo effects on kids is not the answer in my opinion.
posted by digitalprimate at 1:07 PM on April 28, 2015 [9 favorites]

Ask your daughter's mother (or your daughter, I guess) what kind of "doctor" she saw at this "clinic."

I say that because the experience you're describing is pretty much par for the course for a naturopath. Naturopaths are NOT doctors, tending more towards Scientology than science.
posted by Sys Rq at 1:08 PM on April 28, 2015 [3 favorites]

How old is your daughter? Is she pre or post puberty? Sometimes menstrual cycle stuff yields symptoms similar to food allergies and some foods make those symptoms worse, which makes it seem like there's an allergy when really there's hormonal stuff going on that needs to be addressed. Just a thought!
posted by Hermione Granger at 1:09 PM on April 28, 2015

Sys Rq,

It is a bonafide licenced pediatric clinic, but their website says that they specialize in dietary stuff and allergens and integrative medicine and so forth. newkingdompediatrics.com This is a new clinic for our daughter. She started going there in January.

Hermione, she is 8.
posted by ian1977 at 1:13 PM on April 28, 2015

I wish someone had tried that experiment with me, because as a kid I didn't know what biological situations were normal and what weren't and it didn't occur to me that I might should speak up. You can see the rash, but if she doesn't know to self-report about the runs you don't know about or pains or constipation or weird seemingly-unrelated things like not sleeping as well as she could be or mid-morning energy crashes etc.

Seconding this. I didn't know that having as much gas as I had when I was a kid just plain wasn't normal, until I tried cutting broccoli out of my diet when I was in my 30's. I didn't know how to speak up, and what's more, because it was gas I was too embarrassed to speak up. And also, because it was just gas my parents didn't notice anything was going on because well, heck, everyone farts so what's the problem, but they didn't really notice that "wait, she's farting a LOT, though...." and so it just kind of was a thing I thought I just had to deal with and couldn't do anything about until I finally figured out that no, I didn't.

It may not be hives, but small symptoms can still be a thing, and they can be embarrassing for your child to deal with and you have no idea how long those effects can last.

It's just a month. Try it and see what happens.
posted by EmpressCallipygos at 1:16 PM on April 28, 2015 [4 favorites]

We support parent choice for alternative vaccine schedules, holistic care options, and help establish interdisciplinary and multispecialty healthcare teams including chiropractic doctors, naturopathic doctors, nutrition specialists and healthcare coaches, homeopathy, therapists, and rehab specialists.
Find another doctor.
posted by Sys Rq at 1:16 PM on April 28, 2015 [26 favorites]

Non-celiac gluten sensitivity probably is real is the latest science, though it might be part of a larger problem with FODMAPs: http://www.celiaccentral.org/non-celiac-gluten-sensitivity/testing-and-diagnosis/

However, there is no test for it. http://celiac.org/celiac-disease/non-celiac-gluten-sensitivity/ Given that, perhaps a new doctor is called for. (These links are both fairly trustworthy sources of information with regards to gluten science and celiac issues.)

I second the food & symptom journal idea. Do that for at least a month before making dietary changes. And I don't think of diarrhea as a "normal" part of any kid or adult's healthy digestion unless they've caught a bug. You need a good, trustworthy pediatrician to weigh in on that though.

Good luck.
posted by purple_bird at 1:32 PM on April 28, 2015 [1 favorite]

And I don't want it to be a relationship question. I should have left all that stuff out. I want to know the validity off gluten sens. testing for kids.

Well, I'll take you at your word but I think you and the mom need to have a conversation about medical care. You need to be on the same page about practitioners and accepted practices and how you're both going to deal with illness. It seems like you are second-guessing this decision and that's fine; but the two of you need to have a much larger conversation about health/dental care.

As far as an elimination diet, it seems like part of your worry is that the mom has disordered eating and you don't want her to pass that along, right? And you want to ensure that cutting dairy/gluten isn't the beginning of her passing along her own food issues?

The thing about elimination diets is they can give decent data but this might turn into a rabbit hole of many elimination diets: soy, eggs, nightshade, etc. and that's fine except all you're seeing was a rash once. So I would imagine it's hard to begin eliminating foods based on that one rash.

I think you you need to have the larger talk about medical professionals. It's pretty easy to go gluten and dairy free for a month and possibly worth trying. But I'd make it clear that if her only symptom was a rash ONCE, you'd like to go to the next allergist appointment before any more elimination diets are trialled.
posted by kinetic at 1:35 PM on April 28, 2015 [2 favorites]

I vote for finding a real/more legit doctor to get a more neutral opinion. Aside from that, I would definitely worry about setting your daughter up for a lifetime of weird issues around diet. Maybe I'm more sensitive to this than most but my sister had an eating disorder and I struggled with weird diet issues to a lesser degree when I was younger. I feel like sending kids the message that it's a good idea to go on (and off) these super restrictive diets is problematic when there is not a really solid medical reason to do so. (In the same vein, I think tracking every single thing she eats and trying to monitor her digestive system beyond her self-reporting if or when she feels sick is likely to lead to weird psychological stuff down the road.) I absolutely think that 8 years old is old enough to start picking up unhealthy attitudes around food and diet, especially if mom is also weird around food and diet. Anyway, I guess my broader point is that I would consider this in a larger context and do what you can to protect your daughter having a healthy relationship around food.
posted by rainbowbrite at 1:38 PM on April 28, 2015

kinetic....yes. all of that. you are correct.

And along with this gluten and casein test was the whole gamut of allergy tests...all of which were negative except for a mold allergy which we already knew about.
posted by ian1977 at 1:38 PM on April 28, 2015

The issue of going gluten free without a diagnosis (or strong suspicion) of celiac disease first is that it makes that diagnosis very difficult to get (diagnosis can be important for various insurance, FSA, and tax deduction purposes as well as other things like reasonable accommodations). Generally to get an official diagnosis of celiac disease, you need a biopsy that shows damage to the intestine (note: not technical terms). Then, you go gluten free for a certain period of time (several months is common), and re-biopsy to see if the damage is repairing. As far as I've been told, if you go gluten free before the first biopsy, you cannot get an accurate result, meaning no definitive diagnosis.

As with many things, going cold turkey then spontaneously reintroducing them can cause symptoms. Many people go gluten and dairy free for a while to see if there's improvement, then decide to "test" and have a big helping of mac and cheese or whatever, have intestinal distress or other issues, and use that as proof that they need to continue excluding these items. But in many cases, there's no actual sensitivity. If you're vegetarian for many years, then suddenly start eating meat, you may have GI issues, but that doesn't mean you have a meat allergy.

That's not to say gluten intolerance doesn't exist. But I share your skepticism, especially when there's a kid involved (consenting adults can choose to include or exclude whatever they want in their diets, I don't really care).
posted by melissasaurus at 1:41 PM on April 28, 2015

[Hey ian1977, AskMetafilter isn't really a space for back-and-forth discussion, and you're not expected to reply to every comment; you just read 'em and mark the ones that are useful for you. We ask OPs to limit followups to only clarifications people really need to answer the question. Thanks.]
posted by LobsterMitten (staff) at 1:47 PM on April 28, 2015 [3 favorites]

There is a recent and very good meta-study debunking the entire gluten sensitivity "problem."

If I remember correctly, that study actually concluded that FODMAPs were the likely cause of many "gluten-sensitive" symptoms, so trying a FODMAP-free diet might be a better approach anyway. My quality of life improved a hundredfold once I realized that fructose malabsorption was the reason I felt so terrible and bloated after I ate most of the time - an awful feeling I only bothered reporting to my parents once, by the way, and they summarily dismissed it as "normal kid stuff" just like you're doing.

One thing that seems missing in your question is, what does your daughter think? How does she self-report that she feels? While I understand that you believe her mother is influencing her opinions on this, ultimately you need to trust your daughter when she tells you how she feels. Does she say she doesn't feel good sometimes? Does she seem sluggish after eating? How familiar are you with her bathroom habits? That stuff is way more relevant than the back-and-forth between you and her mother, and if you dismiss her concerns as "normal kid stuff" instead of taking her feelings seriously, she won't even bother telling you next time.
posted by dialetheia at 2:10 PM on April 28, 2015 [1 favorite]

I came here to comment on the same passage on the website that Sys Rq noted. I wouldn't trust my child to that practice.

For a child, and for something with such far-flung effects as what he is recommending (as well as bypassing your wife's concerns), I would recommend going to a physician who practices evidence based medicine.

The best options for that in your area may be through the University of Minnesota Medical School and teaching hospital or a practice recommended by them.
posted by builderofscience at 3:01 PM on April 28, 2015

I'm a doctor, and count me among those who are sketched out by "Dr. Bob"'s website. Sounds like he's not particularly tied to evidence based medicine.

The links purple_bird posted above elaborate, but:
"Currently, there are no recommended methods to test for non-celiac gluten sensitivity. Some doctors offer saliva, blood or stool testing. However, these tests have not been validated and are therefore not accepted.
In NFCA’s webcast, Dr. Guandalini states:
“As a matter of fact, right now, they are to say that there is absolutely no biological readout, that is, no way can this diagnosis can be supported by any laboratory investigation. No antibodies in the blood are specific enough, or sensitive enough, for this condition. No antibodies in the stools can be utilized to diagnose or screen for this condition.”

This incident and the one you describe happening previously are really getting my hackles up about your child's mom. She insisted upon going gluten free because of a cough? I actually do think these are material facts, because they suggest that she is going to keep pushing the gluten free issue every single time the child has any symptom whatsoever. That isn't logical and I wouldn't support it either. Pushing for a diagnosis of gluten sensitivity wouldn't be as bad a situation as many I've seen and heard about, but it almost brings to mind Munchausen syndrome by proxy. I would agree with the sentiment expressed above, that you should try to be present for all the child's future doctor appointments if you can, to ensure the physician is getting accurate information, and to ensure that what you're hearing about the doctor's recommendations aren't getting twisted by her mother's seeming agenda.
posted by treehorn+bunny at 6:18 PM on April 28, 2015 [6 favorites]

And to be clear, normally I'm of the same opinion as EC above - that if gluten free eating makes someone feel better, it doesn't cost anything and I'm totally in favor of it. I just feel like when it's being foisted upon a child in this manner that the idea is more problematic.
posted by treehorn+bunny at 6:21 PM on April 28, 2015 [3 favorites]

You should only agree to the one-month elimination test if you also agree to a list of objective criteria for determining whether the new diet led to any improvements. List out the symptoms that you want to see reduced. Track the current frequency and severity of those symptoms. Then go on the diet and track the frequency and severity of those symptoms.

If you don't have objective metrics for judging the success or failure of the elimination diet, you're just asking for more grief. "Oh, she seems much healthier to me, so we should do this forever, plus we should try fasting one day out of seven and increase our bacon consumption." But, but, but...
posted by alms at 7:10 PM on April 28, 2015 [4 favorites]

I will say that my parents considered that I was a normal kid with normal health, despite periodically having gut problems. I turned up lactose intolerant in college (after I noticed that halfway through slice 2 every time I ate pizza I was running to the bathroom and visited a doctor for diagnosis), and looking back I think the gut issues were the intolerance coming on in fits and starts, beginning in 5th grade--my mom gave me Instant Breakfast for breakfast, which is basically milk stirred into milk and flavored with chocolate, and I have many memories of sitting in my morning math class with pain in my gut that I now recognize as gas pains, possibly caused by the lactose load I had for breakfast. Also, many times I had gut problems shortly after meals where I'd had a lot of cheese, but never made the connection.

So, in one person's experience, there could be lactose intolerance problems starting at a young age and an elimination diet would be the best way to rule that out. Although a month is overkill. I'd suggest something like avoiding all dairy (read labels--whey sneaks into everything!) for 4-5 days to see if there are any gut-related problems during that time, then having a huge lactose load like a meal of pizza followed by ice cream, and seeing what happens. Symptoms (gas and/or diarrhea and associated cramping) will show up within minutes to a couple of hours of eating. Then wait a few days and do it again, only chewing some lactase pills with the meal. If nothing happens then, you've got a good idea of what it it.

Or you could take her to the doctor for one of a couple different tests.
posted by telophase at 12:05 PM on April 29, 2015

« Older Definitive test to see if someone is eating...   |   Cooling an urban apartment with a fan? Newer »
This thread is closed to new comments.