Skip to main content

The wheat & rice dilemma

Sometime around August, Raya started eating Wheat Thins and Nutrigrain bars regularly. She ate a little bit of one or the other every day and sometimes both. She was consistently eating them for several weeks. Sometime along in there, she developed a little dotty rash around her mouth. Living in this ridiculously hot climate, we thought maybe it was heat rash. Then 4-6 weeks had passed and it was still there. I asked opinions of some of my wonderful special needs momma friends and they unanimously voted that it looked like an allergy rash. When we went to the allergist on 9-26, the NP suggested taking her off of wheat for 2 weeks to see if it made a difference, so starting last Friday (9-28) Raya went wheat-free. The rash isn't completely gone but we've already seen a huge difference just in a week. Here's a before and after picture:

So yeah, apparently a week makes a difference. We're officially assuming wheat allergy now. I took this picture yesterday afternoon and today the rash is a little more visible. It just so happens that yesterday morning, she got into a box of graham cracker sticks. I've also noticed the last couple days that the keratosis pilaris (aka chicken skin) on the backs of her upper arms and the front of her thighs has gotten MUCH better. It had gotten MUCH worse in the past couple of months and even though the NP at the allergist's office said it's not related to food allergies, I don't think it's a coincidence that it got worse when she was consistently eating something her body was reacting to and then got better when she stopped eating it.

Anyway, to make matters even more interesting, remember how she has a history of mild reactions to rice? (increased vomiting with rice cereal in her milk as a newborn, increased vomiting when I went on an elimination diet that was heavy in rice to try and help aforementioned vomiting & reflux, reaction to rice being on her skin, mild reaction to rice on scratch testing) As it turns out, the gluten free versions of the foods she likes (i.e. crackers, crunchy things, animal crackers, etc.) are made of primarily rice ingredients. I had no intentions of avoiding rice because we've never really had a solid confirmation of an allergy by any of the allergy tests. (Not that any of the allergies have been confirmed by tests...) so I got her some gluten free animal crackers. I was relieved that she liked them because I wanted her to still be eating something. And because they were expensive. :/

So a day or two into eating the animal crackers, she had HORRIBLE gas and...um...changes to her stools. In other words, the rice-based animal crackers did not go well. We bought some other wheat-free multigrain crackers at Costco and it's a good thing that a couple of us like them because Raya does not. She's tried them 2 or 3 times now. She'll kind of lick it, take a little nibble, make a yuck face, and say, "I don't like this." I'm not sure if it's the taste or the texture that's a problem for her but either way, she's tried them and she honestly doesn't like them. (In other words, I don't believe her refusal to eat them is a behavioral or control issue, she just doesn't like them.)

Who the heck is allergic to rice?!? Have you ever tried to find snack-type foods like Wheat Thin-ish crackers and Nutrigrain bars that do not contain wheat OR rice? My attempts thus far have been unsuccessful. It would be easy enough if I was trying to find gluten free/rice free food for one of my kids that actually eats a wide variety of foods and consistently likes the same things from one day to the next. I stopped by a store this evening that sells only gluten free foods and baking ingredients and talked to the guy behind the counter. I explained the situation and as soon as I said the part about needing things that also didn't have rice, his face got long and he said, "Oh. Uh, I'm not sure that there's going to be anything." He looked at 2-3 different things but they weren't things that Raya would have been the least bit interested in. One of them was cracker-ish things made out of parmesan cheese and we're not giving her dairy anymore either so those were out. (plus they were $5.79 for like 10 crackers. ouch.)

Tonight we had pancakes for dinner. While I was cooking dinner, I told the kids to get the living room picked up and get the table ready for dinner. Raya yelled, "I NOT HUMBWEE!!" (I'm not hungry) and I really didn't expect her to be since she had gotten a bolus feed about an hour before that. When she found out we were eating pancakes though, she got in her chair and took one off of the pile.  (yes, we had breakfast for dinner) I was in the kitchen so I didn't see her take it and she had a mouthful of pancake before anybody noticed. I had forgotten that she likes them. Donny took the pancake away as nicely as possible but she just burst into tears. I offered her everything we have that she could/would eat but when you want a pancake, being offered an ice cube just isn't appealing.

For the first few minutes of dinner, she sat in her chair and pouted. Then while I wasn't looking, she dug out a finger-full of margarine and ate that. She cried and begged and pleaded with us to give her a pancake and dang it, I couldn't not give her some. I felt terrible! It feels awful as a parent to spend 2+ years TRYING to get your child to eat and then having to keep taking foods away from them. Talk about sending mixed signals! I let her eat a few bites and then told her she couldn't have anymore or it would make her tummy sick. The waterworks started up again. I hurried and wolfed down the rest of my dinner so I could leave the table and do something with her to distract her from the pancakes but she just screamed at me and kept crying that she wanted pancakes. Somehow I convinced her that she would like an ice cube. It's kind of a comfort food for her (if ice cubes can be classified as food). She sat in her high chair that she's definitely too big for these days and nibbled on an ice cube with her face still splotchy and red from crying so much.
wow, her hair looks gray in this picture. weird.

When I talked to the guy at the gluten free store, he said that my best bet for finding wheat free AND rice free food is to learn to cook it myself. Eek. In light of the pancake fiasco this evening, I think pancakes will be a good place to start. In order for it to be effective, I'll probably need to avoid cross-contamination by having a mixing bowl, spoon, and pan that are just for Raya's food. 'Twill be interesting, for sure. He also told me that if I ever find out about any foods that interest us, we can let him know and he'll look into ordering things for us. I thought that was nice. (suggestions from anyone that has experience with wheat free AND rice free diets are welcome!) This should definitely make things interesting.

It's sad that so far, every time Raya has found a food that she really likes and starts eating it consistently, we end up having to take it away. First the sour cream, then the peanut butter, and now wheat & rice. (actually, she's never liked rice but I digress...) This week I have really developed a whole new sympathy for people with eosinophilic disorders (and their parents!). Kids with EOS do food trials where they eat something for about 6 weeks and then have an endoscopy with biopsies to see if their body is reacting to the food. If it is, then they have to stop eating that food. I feel like the meanest mom ever right now, both because I have to take another food away (and wheat has a HUGE impact on her food variety) and because I let her have some when she's halfway through her 2 weeks of no wheat. So much for that, huh?

I'm trying to not let my thought train run away with me but every time we hit a road block like this (because let's face it, a wheat allergy AND a rice allergy AND a dairy allergy/intolerance AND a peanut allergy is a pretty big road block) it's that much harder for me to imagine her ever getting off of the feeding tube. Right now, I'm feeling more grateful that we're taking a break from feeding therapy. Adding in food allergies when we don't yet have "safe foods" that she actually likes would just complicate therapy so much more. We will definitely get to a point when we can start doing it again but for now, we just need to figure things out first. Like what she CAN and WILL eat. For now, we're sticking to corn-based products. But not actual corn. She doesn't like it. Corn chips, corn Chex, Kix, and whatever other crunchy corn products we can find that she'll eat is what we're feeding her right now. (and don't bother lecturing me about the evils of corn/GMOs/Monsanto. right now, corn is all we've got so it's not a good time for that sort of propaganda.) It's a good thing I've made peace with that darn little feeding tube because it's days like today when I feel like it will be with us for a long time to come.


Comments

  1. Wow, that would be so frustrating! We took Hannah off gluten for a few weeks and I did find a few things that didn't have rice or wheat (we weren't trying to avoid rice, it just happened). One was the bread I made--it used garbanzo bean flour. I just ground some up in my wheat grinder (you would have to have a separate grinder or maybe a coffee grinder just for R). Also, does Raya like pasta? We love the quinoa pasta. It is made using quinoa and corn flour. There's also sorghum flour, fava bean flour and others. I found GF to be much harder to do than dairy/meat free, but it can be done. And fyi, that homemade bread was pretty good. I will find the recipe if you want it.

    ReplyDelete
  2. we did 3 years of the GFCF (gluten and dairy free) diet. it was tough, but doable. i can't imagine adding rice in the mix. making your own stuff will definitely be the way to go. our favorite flour was a bean flour blend, if that helps. and when you make stuff, make a lot and freeze extra. it gets easier. we didn't worry about cross-contamination that much (dishwasher gets it all) but trying to find dinners your whole family likes would be good - we would all have wheat pasta while he had rice or quinoa pasta, we could all do stir-fry, etc.

    ReplyDelete
  3. I realize this is an old entry, and I haven't read the rest of your blog. I stumbled upon this when searching for pictures/info about allergy rashes around the mouth. My daughter has a rice allergy, and I am now suspecting a wheat allergy/intolerance. She already has a garlic allergy, so I have to make most things from scratch. I am not looking forward to things if we have to remove wheat too! Thanks for sharing on your blog. I am going to go browse around it now. :)

    ReplyDelete

Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …