Grasping at Straws

Things at home have been…challenging.

I don’t really feel comfortable writing about my daughter anymore. I wish I did, because I have SO MUCH to say. But I don’t, and a great many things will be left unsaid.

My son is becoming more and more a “big boy” every day. He can communicate most of his wants and needs with words now. We’re managing some hitting and a considerable amount of grabbing and frequent aggressive body stuff, but nothing out of the ordinary. He has meltdowns and tantrums, but they are manageable.

Watching him become a toddler lets me see what typical little kid behavior looks like. I am ever more aware of the ways in which things were not typical with our daughter.

We haven’t gotten an official report from the OT yet, but between what she said at the end of the assessment and what our PCIT therapist has mentioned (and the dots I’m connecting at home), I’m assuming my daughter is going to get some kind of sensory processing disorder (SPD) diagnosis.

I’ve been doing a little research on SPD. There is A LOT out there (thank you internet for NEVER running out of material on any subject, ever!). It’s overwhelming. As always seems to be the case, I don’t feel like I’ll ever really belong in the SPD community. These parents have it HARD, while I have it Hard (and parents of typical kids have it hard). Sure my daughter’s behavior is challenging and it absolutely disrupts her daily functioning, but it doesn’t derail her life in the way it seems to for so many of these kids and their families.

{I feel a lot like I did when I was struggling to conceive. My one ectopic and our prolonged, but relatively easy path to pregnancy, left me feeling like I didn’t belong with the fertiles or infertiles. I feel isolated and alone now like I did then.}

As much as I recognize our daughter’s challenges could be so much more debilitating, I’m also aware of how much we are struggling. Both of us. All of us. I’m feeling less able to handle the situation than I ever have before. I feel more hopeless and overwhelmed that I know how to articulate.

I think I always knew my daughter was a different than her peers, but when your kid is two or three or four the range of behaviors that are considered “normal” is wide. While I suspected that there was something more at play, a part of me hoped (desperately) that she’d just grow out of it. That’s what kids do, right? They grow out it.

It’s clear now, with our challenges intensifying every day, that my daughter is not going to “grow out” of any of this. She is who she is and she’s not going to wake up one day and magically be someone different. (I think I actually believed that was going to happen.) Her fifth birthday was the threshold for me–it’s when I realized that we needed to stop waiting and to start doing.

And we did, but professional intervention progresses slowly. We aren’t going to be making significant gains this summer, which is hard to accept, because I know the transition to Kindergarten is going to be brutal. I was hoping we’d make a little headway before we arrived at that massive milestone.

Perhaps it’s the slow progress of the therapy and assessments. Perhaps it’s realizing my daughter will never “grow out” of this. Perhaps it’s the looming overwhelm that is Kindergarten. Perhaps it’s a combination of the three. Whatever it is, I’m contemplating a change I’ve never seriously considered before, because it’s implementation seemed absolutely impossible.

I’m considering putting my daughter on a Gluten-Free/Casein (Dairy) Free Diet.

I considered doing this before, a number of times, and every time I determined that it just couldn’t happen. There isn’t a single meal my daughter will eat that doesn’t include one of these components. Most include both. We’re already concerned about her lack of weight gain and how skinny she is–tampering with her already limited list of approved foods seems like suicide.

But what if it helps? What if it makes all the difference? What if we can make the changes and once we do the results are remarkable? What if?

And what if nothing else does?

I brought it up with my husband. He was not happy. He thinks we’re grasping at straws. Angry words were exchanged. Resentful remarks were passed back and forth. No, it didn’t go particularly well. But in the end we decided to give it a try. Our first step will be to attempt to find a GF bread and GF pasta our daughter will eat, and to see if we can start substituting almond milk for cow’s milk in her favorite smoothie (small portions at a time).

The good news is that she already eats such a restrictive range of things, we don’t need an exhaustive array of GFCF recipes at the ready. If we can find a few staples she’ll eat, and properly wean her off gluten and dairy for an entire month, we can determine if we think it makes a difference. If we’re not sure, we will be when we start adding them back in.

Of course I just to Costco and bought a bagillion dollars worth of bread and pasta and dairy products. Blerg.

But after the weekend with my parents we’ll be introducing a few new items and seeing how it goes. My husband is open to trying this as long as it doesn’t cause our daughter stress. We will not be forcing her to eat something she isn’t interested in eating (like we could ever force her anyway). I’m sure incentives will be employed. I’m hoping we can find a few thing she’ll eat and actually be able to keep her gluten and dairy free long enough to determine if it has an affect on her behavior.

The reality is, this will be as hard for me as it is for her. It’s going to require I make a lot more food from scratch, separate shopping trips and not keeping food I love in the house (lest our daughter want to eat it). While my husband and I don’t have to follow a GFCF diet, we will be when we eat with our kids. (And we have followed much stricter diets before, so we know what how hard it can be.)

So that is where I am right now, staring down a path I’ve wanted desperately to avoid, only willing to venture down it because the alternative is even more terrifying.

What are your thoughts on elimination diets? Have you ever been on, or introduced to someone else, an elimination diet? Any tips or words or wisdom are welcome.

44 Comments

  1. My daughter is allergic to wheat/barley/oats/nuts and I am allergic to dairy needless to say our house is basically gluten and dairy free. It used to be much harder but in the last two years it has really been easy. Most grocery stores now sell a variety of gluten free dairy free options and we have found Annie’s brands to be quick and tasty alternatives (for those nights you just want to order pizza). My daughter can eat her mac and cheese and its gluten adn dairy free and doesnt take like cardboard. I often stockpile these when they go on sale as they are pricey and always bring it with us when we go to friends houses for playdates / cookouts. We rarely eat out anymore which probably evens out the cost. Sorry about the rattling but my point was there are lots of options these days and my tiny girl who was 18lbs last week (she’s over three) is finally starting to put on some weight.

    1. Thanks for relating your experience. I really appreciate hearing what it has been like for people to manage elimination diets.

  2. I tried an elimination diet when I was like… 17. Because for my whole life I basically just felt sick after eating. The doctor had me cut out dairy, potatoes, white flour, sugar, other sweeteners, and probably eggs? And corn I bet.
    I figured out that sweeteners other than sugar were mostly the problem, since they were the first thing I added back, but then I didn’t add the other stuff back one at a time, I just started eating everything again.
    But it felt really awesome to know what was making me feel bad.

    Why are you thinking gluten is the thing to avoid? My coworker was just telling me that they figured out their 2 year old couldn’t eat eggs, which is another common thing people eliminate.

    I have been reading about this “delayed allergy testing” to test for foods that you might have an “intolerance” to (i.e. gastrointestinal issues), rather than an allergy (immediate rash, sneezing, etc.) IgG testing instead of IgE testing? This is a clinic near me that offers this test http://integrativephysiciansatlanta.com/allergy/

    Personally, I would rather start with this than an elimination diet, to see if some non-obvious things might be the issue. For example, my sister took it and found out that a big part of her issue was mushrooms–not something the typical elimination diet addresses, I think.

    Not sure if this would show results for the effects food is having on your little one though.

    1. I have been looking into whether or not I can get my daughter tested for food sensitivities and it seems like the answer is no, I cannot. Everything I’ve looked at says the only way to see if you are sensitive to a food is to eliminate it and see if the unsavory symptoms go away. Which makes me realize that my daughter has no physical symptoms that would suggest she is sensitive to gluten or dairy (no rashes or stomach/digestive issues of any kind). Makes me think maybe this is not the way to go, especially since it’s going to be so hard. I’m going to write about it more soon…

  3. Sorry you have to deal with do much. I don’t have much advice. I can tell you that going dairy free is pretty easy. We’re vegan. There are lots of substitutes that taste similar. Not all are gf tho. Try earth balance margarine (there are several types) and eb also makes a yummy Mac and cheese box. Daiya cheese is yummy (my husband is very picky about vegan cheeses and he loves it).

    My 1st was a horrible sleeper and thus fussy as an infant. In desperation I eliminated soy (not easy as I consume a lot) since I was BF. It did nothing so I stopped. Sleep training did the trick later. Re gf, if you can find it online, consumer reports did a good article in the past year about the gf craze.

    1. That article was really interesting, especially the part about arsenic… Troubling. I appreciated their thoughts on it though, so thanks for sharing.

  4. I stopped dairy for the first several months of nursing. My son stopped screaming uncontrollably so I think it helped! And I’m pretty sure it was dairy because when I gave him milk from the freezer stash from when I ate dairy he started screaming. I also was paleo when I was ttc. It did not make me ovulate any earlier in the cycle. But I felt and looked great! I know paleo is all but impossible with your daughter. And it’s a lot of work to eat that way. Lots of food prep (if you are like me and get bored with the same thing over and over again). I also had read that gluten free was kind of bs. a lot of gluten free products also have a lot of corn and sugar. I think sugar is my real problem actually. Anyway, what made you decide to do it?

    I don’t know much about SPD, but my understanding is that OT can be extremely helpful and families see progress pretty quickly.

    1. I decided to do it because I was reading a lot on SPD/ASD forums about successes associated with the GFCG diet, but honestly, the more I look into the less I think I’m going to do it. I don’t think my daughter is intolerant of gluten and dairy. I think I’ll try eliminating dyes and additives first.

  5. Having finally come off a no-wheat diet with our daughter (who had standard baby/toddler allergies, but has thankfully grown out of them) and before that a pregnancy-caused wheat allergy, I have a lot of sympathy for your husband’s viewpoint.

    TJ’s gluten-free pasta is pretty good. Failing that, the quinoa-gluten free that you find at the grocery store (in the blue-ish boxes) is ok so long as you are really careful not to over-cook it. Wheat is hidden in all sorts of sauces (ex. Worcestershire sauce). If you do soy sauce, look for Tamari and make sure it’s labeled gluten-free.

    Back when I was on mother’s forums, a lot of women whose kids had behavioral disorders found that eliminating a specific red dye seemed to help a lot.

    1. Check out Feingold.org. It’s the diet my whole family lives by and we had major behavioral problems with my first 2 children. This diet, plus a combination of a wonderful behaviorist and we have all but eliminated all behavior issues. Other than the norm of course!!

    2. I think I’m going to looking into eliminating the dyes and additives before going GFCG. I just don’t think my daughter has gluten or dairy intolerances–she shows none of the physical signs of either…

  6. Good luck. I hope she feels better and realizes the difference in how she feels eating a different diet. Very hard to change a child’s diet when they are ‘highly resistant’ to most foods and demand foods you want to try eliminating. Not having those foods available helps but still not easy to deal with the demand and acting out.

    1. Yeah, if she could realize the difference in how she feels is tied to food that would make things so much easier. We shall see.

  7. This is actually the most awesome time to be gluten free!! SO many options!! My friend has a store in Sacramento even!! I’ll see if you can order online. As for dairy free, we’ve spoken before, I couldn’t remember what post it was on though so I don’t know if you had a follow up comment. It is overwhelming, at first, but it gets SO much easier, and we don’t even miss it now. The ice creams and candys are ridiculous expensive, but otherwise I feel like otherwise I do very well with little added cost. Almond milk is super yummy, have her try a glass if she’s game! Give me an example of a normal day of eating, and I’ll see if I can make it dairy free. Neon yellow mac and cheese can not be made dairy free though, much to my dismay.

    1. My kid is never game to try something new and that is the problem… But I still may try this madness…

  8. First time commenting in writing, although I have commented to you in my head before…anyway, I don’t have any advice on the GF/CF diet, which I know is what you actually asked for. All I have is telling you that I totally get that kindergarten fear. My daughter was never actually diagnosed with anything but there seemed to be sensory issues and dyspraxia was thrown about during her OT/PT appointments. We started before kindergarten and I thought I’d see some magical transformation but I didn’t. She improved, though. I hoped she would grow out of it, which seems illogical, but it’s hard not to hope. She didn’t but she has done much better than I thought in school. She did great in kindergarten and the more structured environment really worked for her. The issues she had never went away so now we’re looking at the possibility of ADD (and paying $1900 for the pleasure of getting that diagnosis).

    All of that to say, I hope kindergarten turns out better than you think and that you survive this whole process. It’s stressful!

    1. Thank you so much for your kind words. They mean more than I can say.

      The thing is, my daughter is really smart. I don’t worry about what she’ll learn in Kindergarten, but I do worry that she will sense that she isn’t doing for them what they want her to do. That she isn’t sitting still at the right time or being quiet at the right time or participating in the right way at the right time. I’m worried she will start to see herself as the person who is always messing up and getting “a talking to.” I just hope she keeps loving learning, even if it’s hard for her to be in school.

      1. I had a similar fear, except mine was that she would daydream away and slip through the cracks because she is a “good kid”. We have an advanced placement school in the Seattle public school system and thankfully my daughter tested into it. The “twice exceptional” child is a common thing there so they’ve been making informal accommodations for her. This year she started to get down on herself because even though she’s a smart cookie, she needs extra time to process so it feels like she’s falling behind. Hence, the $1900 for an official diagnosis. I totally agree with wanting to love learning even if you don’t like school.

        It’s a lot to have two kids, a marriage and a life in an expensive city. When you throw anything else into that mix, it can feel overwhelming. Hopefully you can figure something out that works for your daughter, or comes as close as possible. When you do, tell me what it is.

  9. I don’t think you are grasping at straws at all-there is so much research that so many behavioral problems in children are linked to the gut. There’s a great book called What’s Eating Your Child related to this. And trying an elimination diet certainly won’t hurt and if it helps, will be worth it!

  10. I’m glad things are starting to come together with a diagnosis. SPD is so interesting in all its variations. And aside from food where we have it HARD (but hey at least not feeding-tube HAAAAARD), I think we mostly fall into the category of just plain ol’ hard too. E’s sensitive to some things and transitions between activities poorly but she’s really good at other things kids with SPD sometimes struggle with, and thank goodness the kid loves to travel as much as DH does! (Speaking of movies in your other post, AMC does occasional sensory-friendly shows with the lights on & lower sound & you’re welcome to walk around as needed – we haven’t been but it’s on the list of things to try!) I’m finally almost done reading Sensational Kids which has been a great SPD resource if you want to borrow it!

    1. E and my daughter seem so, so similar in so many ways. My daughter also seems more “typical” to me than she does “atypical” so I struggle with knowing where we fall on any of this. I am SO SO curious to get the actual report from the OT to see what she says. I just might ask to borrow Sensational Kids. I’ve heard it’s good.

  11. I ABSOLUTELY believe that the food we eat contributes to many health and behavioral issues, and that elimination diets are worth a valiant try. When we eliminated dairy several years ago, our “allergies” almost disappeared. When my sister moved her son to a gluten free diet worth her fighter who has SEVERE celiac disease, all of this needs for ADHD were reduced and then eliminated. His dogs said to watch for his behavior to improve quickly, and it did.

    I am a firm believer!

    Check out Eat Like a Dinosaur… It’s a paleo cookbook for kids. Also get “Everyday Paleo Cookbook” by Sarah Fragoso. Our kids eat her recipes and we love them! I cannot say enough wonderful things about that cookbook, and the recipes are EASY!

    1. Thank you for sharing your experiences with this (and your sister’s). I am cataloguing all this stuff and hoping to make sense of it in a way that works for me.

      And thanks for the book recommendation as well. I’ll check it out.

  12. Anecdotally, I’ve heard the GF/DF diet helps kids with sensory issues. Is it more like the gluten and dairy are intolerated and contribute to the behaviors? I’ve also heard avoiding artificial red dye (no. 40?) is helpful too. Good luck!

    And about not fitting, we have a similar but different situation in adoption. It’s a weird feeling to be on the outside of a group you are “supposed” to belong to.

    1. I think it is more like gluten and diary intolerances are contributing to the behaviors and the more I think about it, the less likely I think it is that she has those intolerances. I think I might look more at additives and red dye and the like. Thanks for your thoughts on that.

      It is so weird not to feel like you fit into a community that should be a good fit for you. I wonder if anyone ever feels like they really fit it in anywhere.

  13. I cut out dairy when I was breastfeeding the girls, as I suspected L had a milk allergy, and I found coconut milk as a good replacement. That might also be an option for your daughter’s smoothies. Also, with nut/egg allergies in our house, we have to be careful with cross-contamination issues. I’ve found organic products to be the best at disclosing their manufacturing practices (I.e. shared equipment), since food companies in the U.S. are only required to disclose if the product itself is made with one of the top eight allergens.

    1. I second the coconut milk suggestion. We use it all the time, full fat, and it’s great. It could also help your daughter put on some weight.

    2. Thank you so much for your tips, especially about cross contamination. I’ll definitely keep that in mind.

  14. Hey Noemi – the hope I’m holding for you right now is that in six months or eight months you’ll look back to this point in time and go WOW. The changes may be gradual and slow and almost imperceptible but that you’ll be able to look back and say that now things are so much better. Whether it’s diet or other changes. Change is super hard, I struggle all the time with figuring out what and how and when to make adjustments. I think my daughter also has some measure of SPD or SID…. maybe ASD, I don’t know… since she was tiny there have been those little subtle differences, and like you I struggle to know where the line is between “normal” and something to be concerned about. And not being exactly on the same page with your partner, I’m so in that same boat too. I think it was around age 5 that I hit a point with my girl, too, of realizing she wasn’t going to magically grow out of it, and that there wasn’t anything I could do to “fix” her. That these aspects of her processing are just how she is. But that I can help her live life to the fullest by working with her on the things I know are challenging for her.

    Strangely, I’ve seen a bigger impact in terms of diet with my son, who seems totally neuro-typical as far as I can tell, than with my daughter. Red dye, sugar, and chocolate are THE WORST for him. I’ve only really done an elimination diet with myself, not with the kids – when I was BFing though – cut out eggs and gluten. The only real benefit was that I lost all the baby weight 🙂

    Hoping this all works.

    1. I soooo appreciate your words here. Thank you for sharing your experience and for reminding me that even the gradual changes eventually become significant and meaningful.

      I also appreciate hearing about your son’s reaction to dietary changes. I have been thinking more about this and I do think sugar has a very negative affect on my daughter. And she CRAVES it, like it’s a drug. Nothing sets her off as quickly or as upsettingly as being told she can’t have some treat (and no other incentive is as powerful as a sugary treat, not even a toy). I think we may need to look at sugar and additives before doing GFCF. I think that might make the bigger difference for her. Thanks for helping me to see that about her.

  15. We’re dairy free, gluten free, corn free and tomato free because of my son’s allergies/intolerances. Also oat free and limited to natural sugars (maple syrup and honey mostly). It’s not too terrible an adjustment, but I’m celiac so we’ve been gf for years at home out of necessity. Oh, and we’re also soy free :). Once all of those foods were removed from my son’s diet, it was like night and day with his behavior, moods, sleep and his potty accidents completely resolved. He also stopped having regular stomach aches and his skin rashes cleared up. Although only 4 years old, he noticed the change himself and doesn’t want to eat those things anymore because he loves feeling good now. We also do probiotics and take methylated vitamins (he’s got mthfr and neurotransmitter mutations). So much starts in the gut, so I think it’s pretty common for allergies and sensitivities to contribute to certain conditions. You can do it!! And it totally gets easier :).

    1. “He also stopped having regular stomach aches and his skin rashes cleared up.” You know, my daughter has absolutely no digestive issues at all so I wonder if she really does have any kind of sensitivities. It seems like you have to be so completely GFCF for such a long time to see if it helps… I just don’t know if we’re every going to get to a place where we’ll be able to say if it’s doing any good or not. But thank you for the words of support. I do appreciate hearing your experience (and have been thinking about it as I determine whether we should try this or not).

  16. Yeah, it sure would be nice to just once feel like you fit in somewhere and weren’t isolated. I feel the same way :-/ After a few really good years of feeling confident about taking D out in public, he’s back to being unpredictable. I empathize with everything you wrote. About GFCF, it seems like it really works well or it doesn’t work at all. It’s worth a try for sure. I can tell that D is really sensitive to sugar, and I try to avoid that when possible. I should probably try harder, but this diet stuff reminds me of the IFers trying to cure their IF with endo diets or supplements. Again…not saying it didn’t work for some, but it was never going to help me. My 2 cents.

    1. I totally hear you on the GFCF seeming like it either really works or doesn’t help at all. The fact that even one misstep could throw the whole thing is also frustrating. You would think that doing a decent job of cutting them would help, but it seems like you have to do it perfectly, for a loooong ass time, or you’ll never really know if it could help. I just don’t know if we’ll ever get to that perfect GFCF place for long enough to know. And the more I read, the more I realize she doesn’t have any of the digestive issues so many of these kids have. I think I might be barking up the wrong tree on this one and I’m not sure I’m even going to do it anymore. I’ll write about it more soon.

      To make this even more interesting, I do believe that diet helped me get pregnant, both times. So I do think diet can be so, so powerful. And yet I know that for most people struggling with IF it wouldn’t make a difference. So yeah. It’s so complicated.

  17. SPD parent here. It’s rough. Not going to lie about that. For us, because we started therapy at such a young age, I think we avoided much of the really rocky stuff other families go through. Cadet started OT at 18 months, and in the last two years…we’ve become experts on Cadet’s SPD. SPD is so different for every kid (and every family!). But, there are still some days where his coping mechanisms fail, our “tools” fail…and we get a good glimpse into what it could have been like: endless tantrums, self-harm, poor impulse control, no filters…

    The key for us has been finding out what Cadet’s triggers are. Some triggers are internal: bad night of sleep, something just feeling off in his body, or just waking up “wrong”. However, most of Cadet’s triggers are external: loud, prolonged noises, large/noisy groups, not enough exercise, and unexplained/poorly-managed transitions can all be very triggering for Cadet. Successfully managing the outcomes of those triggers makes such a huge difference. We rarely go to birthday parties or large gatherings, we bring Cadet’s ear phones with us at all times, and we are obsessive about keeping him (and our family) on a rhythm. We also explain (all the time) about what he can expect from his day and any transitions that might be happening. For instance, if our babysitter will be here…I tell him about it a few hours in advance to prepare him (and remind him). Or, if McRuger will be working late and won’t be home for dinner/bed, I explain to Cadet what’s going on and we talk about how that will change our night.

    We’re mostly gluten-free in the house, as McRuger is very sensitive to it. But, even when Cadet eats gluten or milk…we don’t see much change in his behavior. However, having three balanced meals through the day seems to really be a positive force for him.

    I highly suggest the writings of Angie Voss (she is a wonderful wealth of knowledge in the SPD world). She has a webpage with lots of articles and printables (great for teachers/coaches) and a Facebook page (which is also a great resource).

    Feel free to contact me any time just to vent. I’ve been where you are and it can be overwhelming without support!

    1. I really appreciate your words and understanding. I think for us, we’ve identified many of our daughter’s external triggers and make informed decisions based on those (though I think food might be one in ways we’re not understand yet). I think what we haven’t figure out yet is what tools we can give her to help her manage things better. She has created some of her own coping mechanisms (some work better than others), but we need to start giving her more tools. The swing we got her has been an amazing. She loves it and it definitely helps. But we need more. That’s what we’re working on now.

  18. Thanks you (and all the commenters above) for sharing all this. Its making me think strongly about what might be going in with my own 5 year old. I never considered SPD, and he doesn’t really fit everything you are describing (we are thinking along the lines of mild ASD), but there is probably a spectrum with SPD, too, and worth asking our doctor about. (I’ve got a call out already to discuss behavior/psych assessment).

Leave a Comment

Your email address will not be published. Required fields are marked *