New house & going gluten free

A few months ago we discovered our oldest daughter has Celiac Disease. We are so glad she was diagnosed but this has thrown our eating habits for a bit of a loop! Celiacs can’t have gluten. Any gluten. It causes their bodies to not absorb nutrients and makes them sick and malnourished. But gluten is in all things. Or, nearly all things that are processed.

Gluten is the protein found in wheat and wheat related grains like barley and rye. It gives dough it’s elasticity (ever had crumbly gluten free bread?). And, as the modern food system does, it finds something good and adds it to everything. Food coloring, sauces, drinks, anything.

The signs have pointed that way for a long time but we never really knew the signs. She was very tall for a toddler (95th percentile) but by the time she was 4 she was down to the 25th percentile. We chalked it up to genes. I’m short. She would just be short. No big deal.


Thankfully my dad happened to do some research about CD and started thinking that her bad stomach aches and sudden slowed growth were probably Celiac. I was pretty skeptical but we’ve been searching for a root cause of her stomach problems for years but never really found one. She was off dairy for a long time but then the stomach aches came back so we added dairy back into her diet. And it seemed so random. I was a little concerned my doctor would skoff and not want to test for CD. I’ve read stories about pediatricians talking people out of testing. I think a lot of people are asking to get tested now so maybe that’s why doctors are less concerned. Or maybe they just aren’t aware of how prevalent it is.

Many people link the rise in Celiac Disease with the unnatural state of our food system. Genetically modified and overly chemically laiden. But we don’t know exactly what causes it. We do know there is a gene indicator that you may be suseptable to it. Though just because you have the gene doesn’t mean you’ll get it. If you ┬áhave a sibling with it your chances of getting it increase dramatically (hello, genetics). We had one of our other kids tested because his growth slowed way down. Good news, he doesn’t have it right now.

I’m planning to start cooking/baking mostly gluten free at home. It doesn’t hurt any of us to avoid it at home. It gets trickier because we found out she is, in fact, intolerant of casein (milk protein) and now that we took her off again we can notice that trace amounds definitely affect her and cause her severe stomach pain. So no gluten or milk here. Oh, and the little guy has a peanut allergy (and minor allergies to other foods). So we read labels here. A lot. And the kids know how to read labels. Mostly. But checking for gluten is tough! It doesn’t have to be labeled and it’s hidden in things like “natural flavor”.

And by “planning to start” I mean that our house still looks like this.

Unfinished kitchenThat enpty space behind the girl is where a stove would go if we had one. So, yeah, I’m planning to cook GF but for now we eat out GF. Hopefully we’ll get the walls and floors finished by next week and we’ll get our stove!

Anyone else out there gluten free? How did you discover you or your child needed to stay off gluten? Any advice?

Comments

  1. Erin Freel says

    I wrote a gluten free bootcamp for friends…we’ve been doing gluten free dairy free for four-plus years now, and I’m happy to send it to you!

  2. says

    Going gluten free is really not that hard. It takes about 2 weeks while the body withdraws, and after that it gets easier. In my opinion, the trick is not to cook the same stuff with gluten free substitutes, but rather, to eat differently.
    It’s best if the whole family does it. You’ll all feel better, not just your daughter ;)
    http://www.thepaleomom.com is a great resource.

  3. says

    Thanks! It's been a few months and it was easier for her because she was never a bread eater. But switching is definitely not easy when you eat out most meals. But I went GF for a while and I'll have to disagree. It was very hard and I didn't feel better :)

  4. Lauren says

    If you haven’t already found Stephanie O’Dea’s cookbooks I highly recommend them. She cooks GF in the slow cooker and we’ve had good luck with lots of her recipes. You can find them through her blog at stephanieodea.com. Good luck!

  5. Kristie says

    I was diagnosed with Celiac Disease when my second was one. If you have the genes, it can be triggered by a “traumatic event” like childbirth. We made our entire house gluten free, but my husband and kids eat gluten outside of the house. Since my diagnosis, two of my sisters, my nephew and my cousin have all been diagnosed. Being gluten free is a hassle sometimes, but it is definitely worth it for the quality of life you gain. I went from serious brain fog, exhaustion, and constant illness to running 25 miles a week, biking the kids to school, sewing tons, etc. I recommend the Whole Life Nutrition Cookbook for good recipes that are gluten and dairy free, but taste great. I’ve found that trying to make the old items dairy and gluten free is less satisfying than making real dishes that happen to be gluten free. I’m sure it’s harder when it’s your child that has to make all the changes, but it’s getting all too common these days. We live in Seattle and my daughter started kindergarten last year. She had a gluten free classmate and of the 26 kids in the class, there are at least 5 that have a gluten free member. It should be getting easier for us gluten free folks. Anyway, if you have any questions about resources or products, I’m happy to answer by email. Good luck!

  6. says

    I can’t even imagine how this can throw a whole family for a loop! Hopefully it’ll become second nature and more and more companies will start making gluten free products.

  7. aprilshowers says

    I was diagnosed with celiac disease almost 3 years ago and yeah, it is definitely not easy if you have to avoid even trace amounts. Just this past weekend I got “glutened” and I don’t have any idea what caused it. The best I can guess is that I had a bowl of ice cream which I didn’t ask about since a friend, being nice since I hadn’t been able to find dessert, brought to me a few hours after dinner while we were all at a retreat. It was either in the ice cream or the spoon got contaminated when I shared a bite with my kids who had eaten gluten several hours earlier. Just giving up bread? Sure, no problem. But it’s this kind of crazy avoidance which makes things hard.
    Since you’ve been doing this for a few months I assume you already have separate butter/jam/etc for gluten and non-gluten (or are just really careful to only use clean knives) and also have separate non-stick pans, cutting boards, colanders, wooden utensils etc if you use those. We cook a lot of rice, quinoa, grilled veggies, etc over here (I’m also a vegetarian) and, like one of the previous commenters posted, try to cook differently rather than trying to substitute.
    But home isn’t really the problem, is it. It’s social situations that are the most difficult. People mean well and it’s really hard to explain why you still can’t eat that thing they tried hard to make GF for you. I imagine it’s even more difficult when it’s a kid who is the one who is GF. But I’ve been amazed at how quickly my own kids picked up on what is and isn’t safe for me and the interest that their friends show when I’m eating around them.
    I wish you and your daughter the best. I hope she is feeling better soon! I’d also be curious to hear what tests you are using to stay on top of your son’s status. I have been pretty confused about what we need to do to keep an eye on my own kids.
    Oh, and if you’re interested I am happy to send you the list of blogs I read. There are so many out there – your daughter is in excellent company!

  8. says

    She can't have butter and doesn't like anything sandwich related so we don't have those type of cross contamination issues. And so far she's not super sensitive. She gets way sicker if she gets any trace amounts of dairy. She started feeling better immediately but was never super sick before. Her distended belly flattened out and her mood swings eased up. Those were the most noticeable changes. 
    As for my other kids we're just watching for symptoms. We did the blood test for him to see if he had it and the test was negative. That and the lack of other symptoms was enough for us to rule it out.

  9. says

    I did a gluten and dairy free cleanse a few months ago. It was hard but i loved the food. Its not completely kid friendly because she would have to try new things but if you want me to send you the recipes let me know

  10. says

    Good luck! I do not have a child with celiac (my husband eats mostly gluten-free due to IBS, but that’s a whole different deal), but a friend’s daughter was diagnosed with celiac a couple of years ago. She and her husband started a blog about their gluten-free lifestyle, including recipes, restaurant and grocery shopping tips, links to gluten-free guides from major retailers, etc. The link is http://midwestglutenfree.com/. It’s a good resource.

  11. Gaynor says

    Hi, two of my three kids were diagnosed with coeliac disease three years ago. A first it was difficult while we learnt, but once we got used to it, it becomes just a part of life. In Australia, the coeliac society produces a book that says which numbers on the ingredients list on products we should avoid. We do adapt some recipes and make them gluten free, it is just a matter of trial and error really. Good luck, I will look forward to reading about your progress.

  12. says

    I became super allergic to gluten as an adult (my throat starts to close up and if I touch it I get a rash). A few years ago, our youngest stopped growing. They tested her a few times for CD, but she tested negative. My husband started to research it, and found that wheat/gluten is an endocrine blocker, so we tested to see if she had a gluten allergy. Turns out she does!
    It can take a few months for it to clear her system, but I think we are on the right track. We also found out that she is allergic to eggs (chicken and duck)! It has been since November, and her eczema has completely gone away, and it looks like she has started to grow. We have to be super vigillant about it because even a small amount can halt her growth!
    I am glad you found out for your daughter too. We all live without it (at home) and really don’t miss it!
    Michelle

  13. Cindy says

    I went GF two years ago…it took about six weeks to start to feel better and about three months before I really felt good. I’m just highly intolerant not Celiac though. Sylvana Nardonne has a really good GF/DF cookbook – Cooking for Isaiah. (www.sylvanaskitchen.com)

  14. says

    Andrea I have meant to tell you this many times but I think I have forgotten(?)…I have a friend who has Celiac Disease. She have had it for years And she is a nurse too (in a different field but still can’t hurt right ;-) So if you have any specific questions I will be happy to ask her for you!! Just let me know.

  15. says

    We are gluten free and also nut free (peanut allergy), mostly dairy free (my kids are starting to tolerate it better now) and we also used to be egg free until my son outgrew that allergy. I recommend Cybele Pascal’s cookbook, Allergy Free and Easy Cooking as a good, basic starting point – it has a bunch of kid friendly recipes that are free of the top 8 allergens. I make my own flour mix based on the recipe in Cooking for Isaiah, another good cookbook (especially for baking!)But making your own mix might push you over the edge at first – I didn’t start doing that for a few years, and just bought a ready made GF flour (watch out for nut and dairy ingredients, though) – I think the brand we used was Gluten Free Pantry. We really like Tinkyada brand rice pasta, and there are some good GF breads out there, usually in the freezer section. I know your dd doesn’t like sandwiches, but French Toast is a breakfast standard for us. Rudi’s makes a good GF/DF tortilla, which we use for wraps and also for things like Tortilla Pie. Corn tortillas are also good for quesadillas and such. When eating out, we like Chipotle a lot. We also have a local BBQ place we go and just get the meat, which is GF. Upscale hamburger places are a good bet too- many have GF buns (check for dairy, though) and you can also order bunless. Good luck! It really does get easier.

  16. Kathy Laird says

    GFCF is a tough diet…or at least it used to be. I know of several food bloggers that are GF, so that may help get the ball rolling on cooking GF. It is much simpler now to cook CF foods now since most grocery stores now carry half gallon containers of almond and coconut milk in the dairy case. Just make sure that you read labels. I ran into this blog awhile back, she does slow cooker meals that are GF and she has so many of them. She also posts the verdict from both she and her husband and her children: http://crockpot365.blogspot.com/.
    My nephew used to be GFCF and we found the following GFCF products to be the best tasting: http://consumer.kinnikinnick.com/index.cfm/fuseaction/products.home/productcategoryid/#.
    Good luck on your journey to gluten free. I am doing a similar thing for myself as I know that wheat is not good for us. It causes a lot of inflammation and is very addictive.

  17. says

    I’m not gluten-free, but I do love to bake cakes and was recently asked to make a gluten-free dessert for a shower. The bride-to-be wanted cake, but didn’t think it would be possible. I found a gluten free flour at Kroger(it’s a mixture of rice flour and a couple others). Baked goods without gluten tend to be dry, so I chose my moistest cake recipe (pumpkin, chocolate chip). The only change to the recipe was using the gluten free flour instead of regular flour and it turned out wonderful. I ended up doing a small cutting cake for the wedding and the DJ who had celiac’s was able to have cake for the first time in a long time. Anyway, if there are certain things you like to bake at home, it is possible to end up with something just as good as the original.
    There is a blog “100 Days of Real Food” that is not specifically gluten free, but does have helpful information about avoiding processed foods.

  18. says

    I have the genes for coeliac and severe sensitivity to gluten, but, despite us all having the same symptoms, no-one in my family has ever tested positive for coeliac disease. It must be something similar, though.
    We’re just starting the blood test process with our two year old daughter but it won’t mean any changes for us because we already run a gluten-free house.
    I have lots of gluten-free baking recipes over on my blog http://www.ruthplustwo.com. A lot of them are dairy-free too, or can easily be modified to be.
    Good luck with finding a new repertoire of family meals – your daughter will feel so much better for it.

  19. michelle says

    my son has celiac… we found out by “accident” when he was diagnosed with type 1 diabetes. apparently, T1D and celiac are so closely related (like, 1 in 10 T1′s also have celiac), that they automatically run the celiac test on all new diabetics. he tested postive, and we were shocked.. apparently he’s a “silent celiac” and has zero symptoms. but he made the transistion 5 years ago, and after a rocky start, he’s doing well. since then, my hubby has been diagnosed celiac,and his aunt as well. it took me a long time to figure out how to bake GF (also dairy free and egg free), but i think i have the hang of it now!

  20. Mugsy says

    Sorry if someone else has mentioned this already…but watch for sugar levels in G-F foods as well. Many companies seem to feel as though sugar is a substitute for the binding properties of Gluten. A real shame.
    I’m a Celiac myself, and I feel your pain regarding G-F bread! *lol* Toasting it can help, and I’ve heard that bread made with Almond flour is almost as good as “normal” bread, but I’ve never tried it myself.
    Wishing you all the best…and I sgree with a comment above, there is about a 2 week withdrawl period (perhaps due to the lack of “easy” sugars?), but things will improve almost like magic. :)

  21. says

    So you know I had dabbled in this a few months ago and didn’t know where I stood – but after doing enough research I too am jumping off the gluten bandwagon. Thankfully it is not because of CD in my family – so scary for you. My boy had gastroparesis for a year and had malnutrition, and nothing stings like hearing your child “isn’t thriving”. So happy that you can easily manage it with diet.
    I bought The Omni Diet, which is pretty much just like paleo, except she gives percentages. I have loved the recipes! I’ve come up with some of my own, and am thinking to share, and I would love any you come up with :)
    And I can’t wait to see your finished kitchen!

  22. says

    My oldest son has been GF and reduced dairy for 8 years now and me for over 4 years. Just in the past few years there have been so many more GF products available to buy at just regular grocery stores, so finding and buying GF food is getting so much better. I like to use the crockpot for GF meals. I think all of her crockpot recipes are GF: http://crockpot365.blogspot.com/
    All the best to you and your family.

  23. says

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  24. says

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