Wheat/gluten - what do I look for in DD?

[laohaire]

I discovered this year that wheat or gluten (I haven't really experimented... I'm content just reaching for grain-free and leaving it at that) are a problem for me.

I did not have any digestive issues that I could detect before. No stomachaches. No bathroom issues. I did feel tired and cruddy and I had brain fog and a history of joint pain. I tried grain-free on a whim, just because it sucks so much to feel bad that I'll try anything. No-one was more surprised than me at the almost immediate and obvious results I had. And after a short time of not eating grains, every time I fall off the wagon (yeah, I'm stupid, I know) I PAY for it. Such that it's getting a lot easier to not fall off the wagon.

Now, DD is 5 years old and she is low weight. Probably if we took her to a doctor she would be pronounced FTT. I think about taking her sometimes but I wonder what the odds are that the doctor will have anything helpful to say other than demanding hospitalization. DH was hospitalized as a kid and it was just not a good thing. They threatened him and it was just awful.

Obviously, after my own experience, I'm thinking "hmm, maybe DD also has a wheat or gluten problem." So we did about 8 or 9 days grain free with her.

I didn't notice ANY difference in her. I realize 8 or 9 days is not long (and we stopped not because I gave up but because she went to her grandmother's for a while and since DD barely eats anything as it is, I wasn't about to dump a grain-free restriction on her grandmother - it was the first time grandmother had her alone to boot).

We monitored her weight nightly, since she had stalled out (and actually lost a few pounds earlier this year due to flu, which she has not entirely gained back even yet). She did not gain anything; we just counted ourselves lucky that we kept her from losing.

Her bathroom habits stayed the same, both grain free and also after she went off grain free.

I asked DD to notice if she had any stomachaches while she was at grandma's house (eating grains again after a short period grain-free), but she reported none.

Currently this is a low-grain house but we've allowed grains back in again for DD and DH (namely wheat tortillas - we all hate corn tortillas but I suck it up and stick with those anyway - and sandwich bread).

Is there something I need to look for in DD that would show that grains might be a problem for her? As a child, I did not have the same symptoms as I have now. I did not have brain fog at all - in fact I once enjoyed very clear thinking. Energy was fine. No bathroom problems. I was low weight too, though (between me and DH, I guess DD didn't have a chance).

I would like to solve this problem but I don't want to focus on the wrong thing. While I thought wheat was a potential culprit, now I feel like I'm grasping at straws, and I don't want to do that with DD. But I can't experiment on her like I can myself; I can choose to abstain from food that seems tasty to me, and I can notice more subtle differences in my own health.

Random thought - DD does seem to have more gas after eating wheat. That's the only thing I noticed, she was not as gassy when we took her off. Hmm.

[eatyourveggies]

Digestive issues may not be present with someone who has celiac disease, there are many many symptoms.

I have celiac, and I did have digestive issues but I also had other symptoms like joint pain, headaches, brain fog, fatigue and anxiety.

My daughter is celiac as well, and she had Dermatitis Herpetiformis (DH).

For your daughter - do you notice any type of behavior issues when she eats grains? Does she seem lethargic at all? There is a wide spectrum of symptoms for celiac or gluten intolerance, so keep that in mind. You mentioned gas, that could most definitely be a sign. Low weight or stunted growth can of course be a sign of celiac in little ones.

Otherwise, if you want to find out whether or not either of you are gluten intolerant or celiac,  I would encourage testing through Entero Lab (https://www.enterolab.com/) they do both a stool test and a gene test. It's accurate, unlike the blood test (which is highly unreliable, most especially for children)

You can't really say this is "classic" for celiac or gluten intolerance however, since everyone may experience it differently. My daughter had no signs of stunted growth, however we found out early (at 1 year old) so maybe later on if we hadn't found out? who knows.

Hope this helps, good luck!

[scsigrl]

Because it can take a long time to develop classic issues you may not see issues with the GI tract in kids.  We didn't have ANY idea to even look for Celiac till we saw an endocrinologist for DS having no detectable Vit. D level.  That sent us on the search as to why that was which included a Celiac test.  The route we took was blood test, genetic test (as if that is -, it is NOT Celiac but still could be an intolerance) and after much deliberation did choose to biopsy.  It was inconclusive and we were given the option to biopsy yearly OR go off gluten and monitor ttG levels.  We chose to go GF and DS's levels are dropping.  Not normal yet but it's only been 10 months.

 

While I agree with most of what Eatyourveggies said, I will suggest IF you seriously think it's Celiac that you see a GI for blood work and if that's +, they will want to do a biopsy.  You don't have to but it is MUCH easier to do this than to go back and go back on gluten to have to biopsy later.  If you need things for your child like a 504 plan for school or want to deduct $ for food spent, you will need a proper diagnosis from an MD to get them.

Good luck!

[laohaire]

I don't know whether to focus on grains or dairy.

I'm a little afraid to take DD off dairy because she gets so little protein as it is, and it's her only reliable daily source (other than maybe peanut butter - yeah, we love our allergens).

I get that if she's intolerant or allergic to dairy that it's just not helping her, but the fear is there, plus I just don't know what to feed her, you know? And whatever fears and concerns I have about this - my husband has about 10x that fear and concern, and I need him on board.

DD likes beans ok but it's not a daily food. I can only get eggs into her once in a great while (plus I personally seem to have trouble digesting eggs myself). Meat is another difficult food; the only thing that she's likely to eat is hamburger. I recall I hated meat as a child, myself.

Now she's got enlarged tonsils. She's been snoring for a while (2 years?). She drinks cow's milk exclusively, her choice (I'm a water person myself, but she always wants milk). And cheese is something I can usually get into her. Yogurt too. We get a combination of low-end grocery store milk and some good raw milk (it would be all the latter except for, you know, cost).

Would it be worth it to start by just eliminating the liquid milk? And let her continue to eat cheese and yogurt? If it's a lactose thing, I believe (and I could be wrong) that cheese and yogurt have less of it?

[laohaire]

Sorry, I wrote this whole post but didn't respond to what would be the obvious reply to my questions. Folks have brought up that we should get a diagnosis. And that totally makes sense. I gotta think about this. I HATE our health care system. I feel very stressed about money and feel like we are looking at possibly going into debt this year to cover things like dental visits and medical costs. So the idea of running out and spending $300 or $500 on some tests just... wow, I honestly don't know if we could absorb that. Not unless we opt to not fill DD's cavities over the next few months, anyway. ARGH it's so stressful. Either way, I simply can't do it now, so I am thinking of ways to simply adjust the diet and do my own observations.

We homeschool her so I think a 504 is not a concern unless for some reason we, well, stop homeschooling her. I don't know anything about deducting for food, I'd never heard of that. I don't think we itemize anyway - taking the standard always seems to be best for us.

[camprunner]

DD (8yo) wets the bed when she has either gluten or dairy and also breaks out into bumps with either gluten or dairy.  I also see an increase in her anxiety with these foods.  We also homeschool so I haven't gotten her a dx. We have private health insurance and should she come back with Celiac our insurance would skyrocket and we already know how to treat it!  I am a little concerned about the fact that the way things are, it might be hard to send her to a freshman year of college to live in the dorms so right now we are just going to take our freshman/sophomore year at a community college until she can get an aapartent and fix her own food.

I did fork over the money to do a gene test on myself and know that I am a carrier of one of the common genes and one that is commonly associated as a half gene.  Most likely DD has gotten at least one of these.  Seriously thinking of having DH do the gene test so that I know what possible combos our kids might have.

[camprunner]

Oh and one other thing to mention.  People many times notice the stomach issues of chronic diarhea.  They tend not to notice chronic constipation.  No one ever said anything about the fact that I went poo twice a week until DH started to notice a pattern (sorry for TMI) and told me he thought it was odd. I had no idea what my habits regarding the bathroom should be.  Going gluten free, I'm now quite regular.

[Koalamom]

The fact that your dd has weight issues and especially cavities, I would for sure pick a food and cut it out completely. We (me and the kiddos) are dairy and gluten free. I am the only one who is 100% grain free. The benefits are not worth the splurging. When my dd was 2 and got cavities, I knew she wasn't absorbing the crazy strict TF diet I had her on. We only had raw dairy, pastured eggs, super soaked sourdough bread and also ate tons of greens. You think we would have been thriving. She loved her dairy, especially cheese. One day we cut it out and she started to finally thrive. Her cavities even healed. I miss cheese and butter, but we are so healthy without it. Maybe in a few years she will outgrow it but I am not holding my breath. Perhaps you could have her go GF just until her gut can heal from dairy (if that is causing it). My dd couldn't have eggs but after the inflammation went away, she can have eggs all the time now. The whole tonsil thing makes me think of dairy over gluten.

When we cut out dairy, my dd (then 2) would cry and plea for a piece of cheese. It broke my heart. But it was what she knew, and it was almost like wening from breastfeeding.

On the other hand, but ds was very underweight and after going grain free he is now putting weight on, getting teeth and sleeping great at night.

[laohaire]

Originally Posted by camprunner 

Oh and one other thing to mention.  People many times notice the stomach issues of chronic diarhea.  They tend not to notice chronic constipation.  No one ever said anything about the fact that I went poo twice a week until DH started to notice a pattern (sorry for TMI) and told me he thought it was odd. I had no idea what my habits regarding the bathroom should be.  Going gluten free, I'm now quite regular.

Yeah. After quitting grains myself, if I fall off the wagon, I get constipated. Like, for a week. It's awful. (Isn't it wonderful what we can talk about here?) DD goes every day and doesn't strain, seems perfectly fine - and going for a little while off grains and then back on didn't change that. Of course that might change if we were grain-free for more than 8-9 days. I am still thinking about dairy though, too.

 

Originally Posted by bluebirdmama1 

The fact that your dd has weight issues and especially cavities, I would for sure pick a food and cut it out completely. We (me and the kiddos) are dairy and gluten free. I am the only one who is 100% grain free. The benefits are not worth the splurging. When my dd was 2 and got cavities, I knew she wasn't absorbing the crazy strict TF diet I had her on. We only had raw dairy, pastured eggs, super soaked sourdough bread and also ate tons of greens. You think we would have been thriving. She loved her dairy, especially cheese. One day we cut it out and she started to finally thrive. Her cavities even healed. I miss cheese and butter, but we are so healthy without it. Maybe in a few years she will outgrow it but I am not holding my breath. Perhaps you could have her go GF just until her gut can heal from dairy (if that is causing it). My dd couldn't have eggs but after the inflammation went away, she can have eggs all the time now. The whole tonsil thing makes me think of dairy over gluten.

When we cut out dairy, my dd (then 2) would cry and plea for a piece of cheese. It broke my heart. But it was what she knew, and it was almost like wening from breastfeeding.

On the other hand, but ds was very underweight and after going grain free he is now putting weight on, getting teeth and sleeping great at night.

Thanks for sharing your experience. I think I need to mull over the dairy thing more. Dairy free, I think, would be even harder for DD than grain free. Sigh. What a mess. But I don't want to not do anything about it just because it's hard. I just want to feel like there's a really good chance it will be worth it - and I suspect this but also have to get DH on board too.

[capewell5]

I don't have celiacs but I do have a wheat, mold, dust, dander, pollen & food dye allergy, and an intolerance to dairy, coffee, chocolate & soy.  I knew, since my teenage years about the dairy & food dye (Red 40) since i was 3-5 years old.  Anywho, I was diagnosed this year with the wheat allergy but I've been atopic symptomatic (severe eczema on feet & hands) for over 8 years, the real kicker is I had a lot of the other symptoms (digestive, seasonal allergies, asthma, and depression) but could never really tie it into being a food allergy. On a whim I started doing Dr Sears's Elimination Diet.  I started with dairy which was the easiest because the only dairy I consume is butter, cheese & yogurt.  Everything else i had since replaced with substitutes, but nothing changed for me.  It took me 6 more months before i got the courage to try removing wheat, mainly because it is a staple in our house.  But low & behold I removed it and within a month my eczema cleared up, my asthma went away & smack in the middle of allergy season I know longer needed the meds.  After this I went, only because i still couldn't believe it, to an allergist for official testing.  I miss a lot of things that just can't be made GF but I've learned I have to live without them or else.  If i touch wheat my hands break out, if i eat it my face itches, hands itch, feet itch and my lips swell.  I'm almost guaranteed to occupy the bathroom too & it ain't pretty lol.  But 2 years ago I had no digestive issues, or swelling, or direct "i eat this, this happens" with the wheat.  All I had was the eczema, and underlying symptoms that i passed off as a fact of life because I had had them since i was an infant (asthma & seasonal aka all the time allergies)

My advice is to try an elimination diet and don't forget about alternatives to dairy if allergies allow.  They do make rice/almond/hemp milk & cheese.  If you find its not the dairy or there are still symptoms, then removing wheat could be the next step.  I've personally found its easier to follow gluten free diets & i keep my home 90% wheat free in the way of bread & cereal only allowed in the house. If after removing both of them you still have problems I would continue on to the rest of the major allergens & intolerance.  If you suspect it's Celiac's Disease, then following a GF & Dairy Free diet could be ideal, from what I've read, some that have Celiac's also have problems with casein and must cut out dairy too.  Getting tested, also from what I've read, isn't always accurate as a lot of people test negative for Celiac's but still have an intolerance and do wonderful on a GF diet.  Of course I'm not a Dr, just passing on what I've learned with all my research.  I wish you the best of luck!  Finding the culprit is half the battle, but it really is a big one!

[mytwomonkies]

If you are concerned about taking dairy out of her diet I would suggest trying some dairy substitutes with her while she's still drinking regular milk to see if she would take to them. Then if she does you can just take out the dairy and already have the peace of mind in knowing that she likes the replacement. I would suggest vanilla hemp milk to start since it's very rich in nutrients. Almond milk is another good one, my 3 year old LOVES her vanilla almond milk :)

Dairy intolerance often goes hand in hand with gluten intolerance.

[mytwomonkies]

Also, you mentioned your DD not getting enough protein...have you considered trying lentils or quinoa with her? Also, we buy rice protein powder and add it to smoothies.