cait

Yeah, my son is picky enough that he'd probably wouldn't be getting what he needs gluten or no.  But I think a good bit of his pickiness is from years of stomach trouble while eating gluten.  We're gradually stretching his diet.  Our pediatrician is pretty unconcerned as long as he's healthy and growing, which he is.  My daughter, whose need for gluten-free is more questionable (she'd probably be OK gluten light, but our home is gluten-free, so that's what she eats), eats a pretty healthy diet for a 6 year old, so I'm pretty confident she's not missing out on anything by being gluten-free.  We do some replacements for bread, and occasional other things, but otherwise we just try to eat real food, and our kids are gradually coming along.  I think people in general (gluten-free or not) would benefit from paying more attention to the contents of their food.  I've been learning a lot in the last few years as our diet has changed.  It has been challenging and frustrating at times, but definitely a good learning experience.

Another fan of King Arthur mixes here.  We make a batch of chocolate cupcakes and freeze them.  Then before a birthday party we pull one out, melt chocolate chips, dip the top in, and toss some sprinkles on.  Somehow adding sprinkles makes it all better.    We ask his teachers to let us know whenever they're doing anything with food so that we can double check it, but he's pretty good about it really.  I've heard him say to people, "I can't have those crackers.  They have gluten in them."  As stubborn as he can get about things, he doesn't fight it much.  I think it helped that I was gluten-free first, so it wasn't just him.  But I think he also makes the connection between eating that stuff and feeling lousy.  My daughter is also gluten-free, but she's just sensitive to it if she has too much of it.  Since we don't know exactly what that limit is and our household is gluten-free, she stays mostly gluten-free, but we know we don't have to freak out if she sneaks something.  My son is more sensitive and was having bigger issues before we figured it out at age 3.5 (about a year ago).

We try to make sure that we have extra snacks with us when we go places.  I also pack extra snacks in their lunches so that they don't have to go hungry to pass something up.  GoPicnic makes a gluten-free sunbutter and crackers box lunch thing that is no different than something we could pack on our own, but we keep a few on hand so that we have an easy grab and go option if we're not sure whether we'll find food for them wherever it is we're headed.  Somehow it's more special to them because it's in a box, so it's been a good substitute at a party or two.  Udi's bread and bagels are accepted here.  We also recently discovered that Rudis makes a gluten-free tortilla which works well for burritos when pulled from the freezer and warmed in a pan.  We keep all bread products frozen and toast/reheat as needed.  Sandwiches for school are made on frozen bread and it's usually fine by the time lunch comes around.  We also like Nature's Path frozen waffles.  For pasta, corn based ones seem to have better texture.  There's a quinoa/corn one that I really liked until I realized I couldn't do corn.  The kids still eat it sometimes.  Ancient Harvest, I think.  We get applegate gluten-free chicken nuggets, and the kids tolerate them sometimes (my daugher would rather just have regular chicken and my son hates all meat). 

My MIL thinks we're terrible people because we limit their diets without a clear diagnosis (but based on observational data and elimination diets, so we're not making this up), but really it's not a battle at all at this point.  It's just the way things are, and they're used to it and generally completely fine (even happy!) with it.  They're not deprived-- we just have to think strategically and make sure that we have something else to offer.  (I also check ahead when invited to bday parties so that I can try to match what's being served)  The transition can be hard, but you'll get to a point where it's not as big a deal as it is initially.  Oh-- initially we did do some things that were a little more treat-like and phased those out as more healthy options were accepted, so that's another strategy.

Good luck!

I've been doing this too, though sugar is always the first thing to creep back in for me.  I'm trying to reduce it again.  I don't 100% avoid grains, but I only have them rarely.  Of course, becuase I'm just that lucky, my cholesterol has gone up, so my doctor lectured me about that.  Working on finding a new doctor since this one thought I was a head case anyway...

We haven't opted for a gluten challenge and testing because trying to keep me from cross contamination while doing a challenge seemed overwhelming (that's the reason we moved to a gluten-free home in the first place).  Also, I just can't imagine making him miserable for that long, knowing that many people get inaccurate results after gluten challenges anyway.  I'm wondering if there's any point in having the genetic testing done on him.  I know it doesn't give a definite answer, but it might tell us a little more about the odds of him developing celiac.  Or maybe that's just my wishful thinking.

While he didn't have as intense a reaction as I thought he might, given how miserable he was before going gluten-free, he did definitely react-- just delayed.  TIred and moody, constipation.  I don't know that my MIL will ever understand, but at least we were able to tell her that it did affect him.

I'm totally happy to keep them on any diet that keeps them happy and healthy.  I really don't get why people get all bent out of shape about it and how horrible it is for kids.  Yes, there are times when I miss things.  Yes, there are times when it's inconvenient.  Yes, occasionally it's hard for the kids.  But for the most part, it's really not a life of horrible deprivation.  We eat pretty well and the kids are pretty happy with what we eat.  (well, my daughter is.  my son doesn't like food in general, but it has nothing to do with the lack of gluten or dairy).

Thanks for your thoughts!

Last spring we figured out that my son is gluten intolerant-- or at least we think we did.

As an infant he had reflux that lasted longer than the typical infant reflux. As a baby/toddler, we wondered if he had a sensitivity to wheat because of face rash after eating bagels a few times and some nasty diaper issues. We never clearly figured out what was going on, but I wonder now if the fact that he was still nursing complicated our diagnostic process (we never totally got him free of it because some was coming in through milk). He became a very picky eater, living primarily on carbs (and, yes, wheat). We figured out my gluten issues when he was about 2.5 and eventually eliminated gluten from our house entirely so that I could avoid crumbs from the kids. In the months that followed gluten elimination in the household, the kids ate gluten outside of the house at school, playdates, dinners out, etc. My son also began to experience increasing stomach problems. Alternating C&D. Calls from his school that he was crying in the bathroom. Going through all of his changes of clothes in one day even though he had been pretty reliably potty trained previously. Winter into spring were the worst (which actually corresponds to decreased gluten intake, so makes sense in an increased sensitivity sort of way). He was also having erratic behavior issues at school. We finally removed all outside of the house sources of gluten and the stomach problems resolved and his behavior regulated. We've kept him very strictly off gluten since then.

The issue is, since he was pretty low gluten by the time we figured out that there was an issue, we couldn't test him for celiac. My partner is the bio parent, so he does not have my family history of celiac (though we don't know about the other half of his genetics). My mother-in-law thinks that we're crazy and horribly restrictive for keeping him off of it, and we have no test results to back up our observations. So when she was watching the kids on Friday, she let each of them have a gluten cookie at her friend's house. Apparently her fear of being socially inappropriate won out over our request that she keep him gluten-free. To further complicate the issue, he hasn't had a reaction. So now I'm totally baffled, as well as furious and concerned about future implications with her. In some ways, great! We know he's not super sensitive. Maybe we don't have to supply gluten-free playdough or worry as much about his classroom. On the other hand, if he does have celiac (possibly unlikely, but we just don't know and can't know), even if he's not reacting those exposures are bad. And then the MIL factor...but that's up to us to sort out. Supporting our parenting decisions is an ongoing issue and clearly we have farther to go than we realized. I'm more baffled about how to proceed with him. Any wisdom?

Complicating all of this is that we took both kids off of dairy before figuring out his gluten issues. We were having winters full of congestion and multiple rounds of antibiotics for each of them for ear/sinus (both children) infections and pneumonia (him, not her). The last two winters have been much better. In fact he hasn't had a round of antibiotics since last spring (despite a few nasty colds), and my daughter has had only one. This could just be related to getting older and luck, so we're starting to test dairy, even though part of me doesn't want to mess with them both being generally healthier. But I don't want to be unnecessarily restrictive either.

Leaving MIL issues out of it, how do we sort all of this out?

I thought of something else ... can he have soy? My son is very open to tofu.

Sadly, he's been very opposed to tofu. Haven't tried it since I figured out that I can't do soy, but he was not a big fan when we had it more regularly. Makes his desire to stay vegetarian kinda tricky...

Hmmm...will be filing those ideas away to try. He has been thrilled this week to eat muffins made with almond flour, which at least has something more to it than rice flour. I've been able to use them to bribe him as you describe (eat your broccoli, then you can have the muffin). Adding stuff in is a brilliant idea, and something we haven't tried.

It's possible that he's developed other food reactions, but I'm hoping not. Really wish kids came with plug in diagnostic devices..

does he play with playdough? Its wheat based. Are there any other sources of gluten that he could ahve come in contact with.

No, we make gluten-free dough for his class when they need it, and I work in the classroom across the hall, so his teacher has easy access to me for checking on materials and project ideas. Any other sources would be crumbs from other kids in his classroom, which is certainly possible, especially since he's a thumb sucker. But if that's the case I don't know what to do, because there's no way to avoid that other than removing him from school.

It did occur to me as I typed this that we started a new multivitamin with the kids this summer, so it's possible that could be contributing. It's gluten-free/CF and claims to be all kinds of natural and hypoallergenic, but I know different bodies react differently to vitamins, so I could try dropping that for a week or so to see what happens.

We figured out last spring that my son is gluten intolerant. No idea if he has celiac or NCGI, because we figured it out after making our home gluten-free to keep me from constant cross-contamination. He's always had stomach problems-- reflux as a baby/toddler that went on longer than our peds expected, frequent complaints, C&D, and then last winter/spring, things went up in intensity and I would get calls from his school that he was crying in the bathroom or had gone through all of his changes of clothes (even though he'd previously been pretty solidly toilet trained). We didn't jump right to gluten because he's not genetically related to me, though we did wonder about wheat when he was a toddler because his face broke out sometimes after bread products.

Anyway, once we were able to see the connection between episodes of bathroom drama and consuming gluten out of the house, we took it completely out of his diet and many things improved. Normal poop, more stable mood, generally more pleasant child. Over the summer when we were traveling he started to have constipation trouble. Made some sense since we were traveling and out of our routine. We were also doing some dairy trials since he'd been off dairy for a while to see if it helped his frequent congestion issues. However, it never really got better once we were home. At this point we're doing daily miralax doses, and he's still having hard poops, big belly, and complaining of pain a lot of the time. Complicating this issue is that he's incredibly picky about food. He seems to have some sensory issues, so has trouble with some textures (though I haven't been able to fully figure out what in specific). We also were vegetarian, and then as my intolerances grew, had to add in more meat, and he is still pretty vehemently veg. We encourage him to try things, but he hates it and is distressed at the idea of meat. And since we removed gluten and dairy right at the point when a lot of kids become pickier about food, we've had trouble finding other things to put back in without a major battle. Left to his own devices he'd live on PB and gluten-free bagels. He will eat fruits and vegetables, though it sometimes takes a bit of coaxing/struggle. He hates most forms of protein other than nut-based ones.

At this point it's hard to know what's causing what. Is he tired and cranky and constipated because he's not eating a balanced diet? Or is something else irritating him? Is his pickiness causing the constipation or is he picky because his stomach is cranky because he's contipated? Is there something bigger going on that forcing him to eat new things won't fix? He's very strong-willed, so trying to force anything is kind of a losing battle. I try to find ways as his parent to sidestep the head to head confrontations and get him to follow drections, etc in different ways. But he will not be tricked or otherwise convinced with food.

Any suggestions about where to start with this? We will probably chat with the pediatrician about it, but so far they haven't been terribly helpful about it (though at least they are supportive of our decision to remove gluten without a clear diagnosis). I know we need to add more variety to his diet no matter what, but would welcome suggestions about ways to do this without a battle. So tired of mealtimes being a massive struggle. So tired of seeing him tired and cranky and hurting after such a promising start to his gluten-free journey.

I'm totally confused now. As I expected, everything came back normal. Before I got the results though, I started experimenting with b12, and it made a huge difference. I felt human again, and had energy despite the fact that we were traveling and I should have been exhausted. I figured I must have been on the low end of normal and continued taking it until I got back home. Yesterday I picked up a copy of my results, and it turns out my b12 was actually too high before starting the supplement. 1370 where top of the range is 946. If my levels were too high to begin with, why would taking it have made such a difference for me? Is it possible that my body can't process what's there and was getting something from the sublingual that it can't create from what's already there? (the sublingual was the methyl form where I'm sure the b complex I took until a year or so ago was the cyano-whatever) Or am I just crazy?

My thyroid, btw, seems to be fine. TSH 1.35 (.45-4.5 range), Free T4 1.25 (.82-1.77 range), Free T3 1.88 (1.81-4.06 range). T3 is on the low end of the range, but I don't know what, if anything, that means.

I'm not going to ask your age but another thought about hair falling out...you might want to get all your hormone levels checked, female hormones can cause hair loss when they are out of balance. If you are into your 40s, you might be considered perimenomausal and your hormones ARE beginning to shift. Whether at that age or not, Estrogen, estrone, progesterone, FSH/LH, testosterone, DHT all can figure into hair issues.

Are you taking any medications for which hair loss might be a side effect?

I'll be 35 in a week. Hopefully not perimenopausal yet, but hormones probably worth checking. I'm only taking vitamins/supplements now, including biotin, which is supposed to HELP with this. The only trace of prescription left is the antidepressant I'm weaning from to finish eliminating corn.

I use Beautiful Curls on my daughter's hair. We like it, as do our friends who use it on their curly haired daughter.

Yes, I have had to be careful about that, Skylark. I have totally bottomed out on energy a few times, so I'm trying to be very conscious about carbs. Planning to try adding some rice or other grains back in carefully to see what my reaction is, because I need to have a few other options. I lost weight before figuring out the gluten thing, and I have yet to gain anything back despite noble efforts, so I'm trying to be on the least restrictive diet possible, while still avoiding things that make me sick. My normal range had been 125-135, but I seem to be stuck around 116. The hair loss totally makes me think thyroid (though I think my tests have generally been fine), but wouldn't difficulty gaining weight be a counter-indication? Obviously, I'm going to have them check it, because I don't think anyone ever ran all of the tests for it. I did test mildly hypo as a teen, but it seemed to normalize after a bit.

-Zinc and Magnesium may also be low

Are you taking any vitamins? I got more energy even while eating gluten after taking B12 and iron for a couple of months. I don't know what the '30' diet is. Do you much eat meat?

-If you get short of breath also get them to examine your lungs and heart.

-You may have sleep apnea. Do you snore? Wake up with a sore throat? Does anyone else in your family have it? Has anyone else you've slept around ever noticed weird breathing at night? Hypothyroidism can affect sleep apnea too.

-Should probably get liver enzymes and kidneys checked

-Diabetes can make you tired

-Anything unsual about how often you pee?

-Are your periods usual?

Whole 30 is similar to paleo, so yes on the meat. I don't eat red meat because until last fall I had been vegetarian for about 15 years, and hadn't eaten red meat for years before that. Worried about how my body would react to it, and really don't like meat so far, so can only take on so much. I do think eating more protein has been helpful, but again has made no lasting difference. Pretty sure I don't have sleep apnea, but I do have two small children, so I do get woken up sometimes. Pretty sure that alone doesn't account for all of my fatigue, though. When I've had bloodwork done, my blood sugar has always tested fine, and I have no other reasons to suspect Diabetes. My periods are regular and annoyingly painful.

Thanks for the suggestions. I really appreciate all thoughts. Generally everything comes back completely normal when I get any testing done, so I'm trying to make sure there isn't some less commonly tested thing that I'm missing.

I've been gluten free for over a year now. While I've definitely noticed improvement, I can't seem to sustain it. I'll feel better for a while, and then slip back to feeling super fatigued. I've gone through elimination diets and cut out things that bothered me. Helped for a while, then started to backslide again. Am now pretty much following the whole 30 diet, though I seem to have trouble eating enough to maintain energy that way, so am having to alter it slightly. Even with that, I just can't get to feeling better. I don't have the stomach problems and headaches I did prior to dropping gluten, and am mentally/emotionally in a much better place. But my energy level is awful. I want to get my thyroid checked, especially since my hair continues to fall out, but am wondering if there are other things I should check on as well. My doctor will prescribe whatever tests I ask for-- I just need to know what to ask for.

Any suggestions?

The closest I come to candy these days is one particular honey which is expensive but delicious.

Wait-- is honey a problem, or do you just have a preferred type? I'm trying to figure out why I still feel like crap, and I do have honey in my tea...

Does anyone cook/bake with flour in your house? That can be a big cross contamination issue too.

Yes. I was ravenous for a while after going gluten free. Was downright annoying. It did taper off after a little while. I think it's just the body adjusting to the fact that food no longer causes pain. Sounds like you're on the right track with removing gluten.

After a year gluten free, I had lost the massive improvement I'd experienced when first gluten-free, and was going downhill. We're doing a slightly less strict version of the Whole 30 diet, so no sugar, grains, legumes, or alcohol (I didn't drink anyway, so that part is easy at least). I was miserable for the first week or so, but then my energy picked up, and I'm definitely experiencing improvement. I hate it because I just don't like meat that much, it's pretty limiting (but I'm also doing a rotation diet along with it, so that adds to the limiting), and I miss chocolate. But I feel better, so I'm sticking to it and hoping that at some point I'll be able to add other things back in.

Right. That was my understanding as well. I think people come up with a lot of different explanations when they don't want something to be true.

When we realized that the kids were glutening me, we made our house a gluten free zone (last summer). This winter, my son (3) started alternating between C and sudden D, and mentioned his stomach hurting a lot. I thought we should to a gluten-free trial with him, but my partner was unconvinced (he's not mine biologically, so he wouldn't have a genetic predisposition from me). We took him off major sources of dairy, which seemed to help some, but he was still having digestive problems and starting to have accidents at school. I continued to suggest that his behavior and his digestive issues might be helped by gluten-free, but she remained unconvinced and sure I was projecting my issues until recently. He's been off gluten for 2 weeks and has had normal BMs for the first time in a long time. His belly is no longer huge. He's generally happier. I think we're on the right path, though my partner is still somewhat skeptical.

Normal people can go on and off of gluten with no issue, right? She wonders if this is happening because he's been low gluten and has lost the ability to digest it. I maintain that if you remove it and then have a problem returning to it, you were never really digesting it well in the first place. (he also was a reflux baby, and had rashes that we thought were maybe related to wheat as a toddler, so I've long suspected that he had some kind of allergy/intolerance)

Right there with you. Coming up on 11 years with Lyme. Recently determined it is still active infection, but no good way of treating it since I didn't really respond to years of antibiotics and other fun treatment. Continually adjusting my diet to see if I can get anywhere near how I felt right after going gluten-free. No luck. Exhausted, so exhausted. Pain. Can't keep up with my life. Don't want this to be my life. Don't know what to do.

I feel your pain. Big hugs.

You can absolutely get glutened baking things for them, even if you don't eat it. Also, how old are your children? We had to make our entire house gluten free because our kids were too little to really be careful with their crumbs yet and I kept getting hit by that. They eat gluten out of the house, but in the house we're pretty strictly gluten free.

No suggestions, but sympathy. I'm a teacher and I think gluten at school is part of my ongoing issue. I teach 4 and 5 year olds and they eat in the classroom. There are crumbs everywhere, and I get to clean them up. I wish people understood how much of a problem it is. It shouldn't have to be that kids with celiac just can't go to school, or that teachers just have to find a different profession.

I have found a list of gluten-free meds through google searches, and that has been at least vaguely helpful. It's incredibly frustrating, though. I had multiple medical professionals tell me that the amount of gluten in my antidepressant wouldn't be a problem because it was so small-- just a wheat derivative in the coating. And yet, I felt so much better once I finally got off of it...