Gluten trial = epic fail

[marensmama]

Hayden has been GF for about 2.5 months now.  I have to admit, at first I liked it, thought it was workable, thought it seemed to make her sleep better.  Then I hated it.  It's expensive, it's time consuming, it's difficult, it's inconvenient, the food is not as good.  I love to bake, yet I can't find anything that's good to bake with, I hate the idea of spending $50 on five different flours to make one loaf of bread that is flat and dense.  I spend an inordinate amount of time on the internet looking for things to make.  The rest of the family suffers because they (we) can't eat the nice pastas, cookies, etc. that we like and we can't eat out (even just the rare occasion that we would is now really out of the question).

So, since I had noticed her visibly refluxing a few times lately and her sleep seems to have gone to pot again, I figured, how bad can it get?  GF diet seems to not have helped much, so I trialled her with gluten laden foods this weekend.  We were OOT and I had brought some GF stuff, but we were at someone else's house and everything there was full of gluten.  On the first day, Saturday, she had a piece of wheat bread toast.  The next day she had some pancakes and macaroni.  The next day she had pancakes, and wheat bread.  Today she had oatmeal for breakfast and wheat crackers at snack.  She woke up 2x last night, complaining of a sore tummy.  Today she didn't eat much at all due to a sore tummy at daycare.  Then she fell asleep in the middle of circle time, so they let her nap for 30 mins.  When she got home after work, she begged to go to sleep at 5:30.  I kept her awake until 6 but she was very tired and crabby and didn't want dinner.  She's been up since then, for an hour between 8 and 9, crying about a sore tummy.      I guess she's eating GF foods now forever.  This totally sucks for all of us.   

[MasynSpencerElliotte]

(((Hugs))) Nicole!  GF is a tough one for sure, and I can understand wanting to do the GF thing as a family to an extent, but do you think Hayden can understand that it was the gluten that made her feel so crappy and that not everyone is the same way, thus allowing you some flexibility with cooking.

Spencer definitely gets that we all eat different foods than she does, and gluten-full foods are a very distant memory for her. In fact, she figures if one of us won't eat something merely because we don't like it, we must have an intolerance!

[my3girlsjde]

Oh hugs sweetie. I wish it weren't the case cause it's so hard.

Does.she like the K-toos vanilla cookies? They're at walmart and we all like them.

Is there any way she could get clinically diagnosed with celiac ? I just heard that there are tax rebates for family members who are diagnosed but I don't know how strict they are on the formalities of it.

Sigh. It does suck.

[MasynSpencerElliotte]

I think the tax thing is pretty strict for celiac, but I never really researched it too thoroughly.  K-toos makes a chocolate cookie (oreo like) too. I love them! (And that is saying a lot as most gf stuff makes me gag!)

[marensmama]

Thanks.  I'm so bummed about this because my next step is to trial her off dairy and I wanted things to be easier without GF being another restriction, YK?  In some ways it's validating, I guess, because it means that being GF is what she needs.  The trouble is that it's not THE answer, and that means I have to keep up the GF diet and keep looking for that elusive answer.

I'll ask the GI if there's any way with his 'inconclusive celiac findings' on the biopsy, in addition to our experiment and apparent gluten sensitivity that we could qualify for the tax break.  Goodness knows we could use it!!

I'll try the cookies with her as a special treat, and I can bake things just for her, it's just that it's 2x the work.  I'm not being lazy, it's just that I work 35 hrs a week too and feel like I'm barely treading water lately.  She seemed to understand tonight that the foods containing gluten are what makes her tummy hurt ("but maybe Mommy if I only have a couple fishy crackers it just won't hurt as much!" ) so maybe we can get away with more of a separate meal plan for her.  That really may be the only way to make it work.  Rice pasta makes me gag, the breads are disgusting, and with 4 of us eating a partially-GF diet, it's really just getting too costly.  Maybe she'll understand it more after this, especially if hopping right back on the GF bandwagon makes her feel better tomorrow.

[deb]

This is one of the reasons we had to deep-six most of the GF options and just go pretty much grain-free. I think we have GF pasta and other subs once every week or two and the rest is meat and veg and fruit and yogurt and some nuts & seeds. Cooking from scratch is more time-consuming but we're all eating the same meals so less work, and from-scratch is a lot less expensive. Processed foods are still processed foods and are pricey for the nutrition you get - GF foods that much more so. We broke down and got GF pizza yesterday as it's so hot here and cooking sucks right now; it was Tuesday so it was a 2-for-1 deal and it ran $25Us for ONE PIZZA! (The other was free; no way we could afford this on any other day, or more than once a month at best!)

We don't bake much - ah, heck, I've pretty much forgotten how to entirely! - but I do have a fantastic recipe for GF brownies that we make for birthdays and other special occasions; it's made from coconut flour which I order online when I get out gallon of coconut oil every 6-9 months. And Mark's Daily apple and Paleo Parents have some fantastic recipes on their sites; Paleo Parents in particular has great recipes for GF subbing that use almond flour and coconut flour (I'm allergic to almonds so that's not an option for me anyway) and they even published a kids' cookbook called Eat Like a Dinosaur to help kids buy into Paleo/GF eating and cooking. http://www.amazon.com/Eat-Like-Dinosaur-Guidebook-Gluten-free/dp/1936608871

[Mashi]

Aw, sorry Nicole    One thing that comes to mind though is that for anyone who has been 'off' of anything, the introduction of it all in one go like that can be hard for the system to take....do you think there is any chance it was just that all of a sudden she had so much of it, that anyone (ie even someone without gluten intolerance etc) would have had a stomach ache?   I mean, I have no dairy intolerance but often if I have eaten a yogurt in the day, had milk on my cereal and then I eat a really heavy cream-sauce pasta, I get a stomach ache...it's just too much for me all at once.  I just wonder if all of that new protein in her body all at once just caused a bit of a back-log in her digestive system. Anyway, it's just a thought, something you might want to watch for?

With the tax break for celiacs, I am quite certain that you need to be medically diagnosed by a biopsy to provide definitive proof that you are celiac.  My mom was one of the 'pioneers' in the mid-1990s who spent many many many years writing, challenging, lobbying the government to get this tax break through (I am so proud of her for this ) and it was quite a devastation for her (and some of the others she worked with who were in the same situation) that the gov't would not accept her original diagnosis from the late 1950s (she was one of the first people in Canada diagnosed officially), nor would they accept her biopsy from the mid-1980s although I can't remember the reason why not. At that time they would not accept the blood test either and I don't think they have changed that, as it is not definitive. You need to be eating gluten for a significant time period in order to have the biopsy results show up, and it was a huge upset for these people who worked so hard for many years to get this tax break to then have to face either not benefitting from it or putting themselves through the pain of having to eat gluten for months in order to have a biospy.      

[my3girlsjde]

Just a thought Nicole

I often shred carrots with the peeler and when Tue family is having spaghetti or a fried rice dish I use that. If she helped do that do you think she would be more inclined to eat it? E gets the gf pasta and everyone else through normal stuff due to cost but I avoid it altogether. Spaghetti squash? Zucchini instead of pasta just for her?

I had no idea about the chocolate K-toos! E would be in heaven. Chex is now gf as well as rice crispies. Has she had monkey munch? (cereal, melted chocolate with peanut butter, butter or substitute, and doused in powdered sugar- if she can have corn starch) it's pretty yummy and I'll get you the recipe if you want.

I think now would be a great time to start giving her separate foods even if you only have to separate one or two ingredients such as pasta. She's going to be around it soon enough at school and probably notices a bit at daycare.

More hugs

[ENMS]

So sorry to read that Nicole.  Many, many (((HUGS))) to you.

I don't have any advice as I've never been that route before, but it must be so tough on you. I understand how hard it must be, with working full time on top of that. You're doing a fantastic job and you are being so strong for Hayden.

[jennandsophie]

Sorry Nicole. I know it's really hard.  I've had to go GF for the past 4 months because of BFing DS.  Do you have a gluten free bakery near you?  That would save you from having to bake your own stuff when short on time.

[Buntybear]

Hugs from me too. Sorry that the don't get good alternatives where you are. Yes it is tough but it will get easier for you. We made gluten, dairy and egg free blueberry shortbread biscuits yesterday and we shared them with Olly's friends yesterday so they could all eat the same thing. They were good!

[*Kara*]

Hey  nicole - not much to add but have you tried Spelt flour?  My SIL has two kids and a hubby with celiac and this is what she uses the most as it can be subbed in equal amounts in most bread recipes....

[deb]

spelt is low in gluten, but not gluten-free.

[MasynSpencerElliotte]

Umm...spelt is a species of wheat (and ancient species) and is not gluten free, though from what I understand it does have less gluten than our modern wheat does, and some people with gluten issues can tolerate it.

posting at the same time as Deb 

[*Kara*]

So bizarre that she is able to use it really but her kids are fine with it... and neither of them can tolerate those ever-famous gluten-free oats!