For me, diet is a four letter word, I doubt you’ll find it very often on this website. I don’t spend a lot of time discussing gluten free around here either. That’s because I take it as a given that the food I eat will be Gluten Free, that’s just part of my life at this point, though it wasn’t always this way.
Lately, a number of people have asked me to share the story of my celiac diagnosis and personal transition to a gluten free eating plan and lifestyle. So here it is.
I was diagnosed with celiac disease in 1998 during my pregnancy (not uncommon since pregnancy is considered an immune event and celiac is an auto-immune disorder) with my older son. I was 30 years old and sick as a dog –I could barely get out of bed –no exaggeration. Things were very, very bad. My father suggested that I get tested for celiac disease. My mother had been sick for most of her adult life with various odd symptoms and had been recently diagnosed. I was tested and low and behold, yes, I had celiac disease.
Unlike the usual process, where it can take people as many as 9 years and numerous doctors to get a diagnosis and find out what’s going on, my diagnosis came only a few months after the onset of acute symptoms. In that way, I was very lucky. However, when I look back, I had been having classic symptoms of celiac disease and malabsorption for most of my life.
What were these symptoms? I was chronically anemic and whenever I was under stress would get angular chelitis, which is when the corners of your mouth crack and get a little rash. This is also a symptom of nutritional deficiency. So, maybe my diagnosis wasn’t so quick after all. I had to get to the point of being severely ill and bedridden to finally get the diagnosis. Still, I think I was lucky to get it so quickly once that did happen.
As many of you know, celiac disease is a genetic disorder –it runs in families and it has hit my family quite hard. Not only do my mother and I have celiac, my sister and older son have it as well. Incidentally, my mother-in-law also has celiac. So, as you can imagine, the work that I do in creating gluten free recipes is very personal for me.
Anyway, when I received my diagnosis I was tremendously relieved. I finally knew what was going on with my body. I had already had a 3 year training in Ayurveda which included yoga asana, herbs and food, so I was fairly comfortable in the kitchen. That doesn’t mean I could actually make tasty food –my husband disliked my Ayurvedic fare with a passion! He was not a big fan of kichidi, or kichari, as some refer to it.
Of course after the diagnosis I went completely gluten free. As I mentioned, the diagnosis wasn’t a big deal for me. I cooked very simple gluten free foods –vegetables, quite a lot of grains and some proteins. A few months later, I spent a lot of my time making baby food too, once my son finished nursing around a year old.
When that same son turned 3, I started to notice some digestive and behavioral issues in him. I fed him a gluten free diet during the week; however, during the weekends, he went to birthday parties, and the food served at those parties was pizza and cake (gluten galore). Let’s just say that Monday, Tuesday and Wednesday were full of tantrums and mal-digestion.
I asked my son’s fabulous pediatrician (Mark Nesselson, he’s still in practice in NYC), to test my son for celiac and the test came back positive.
This diagnosis had quite an impact on me.
I wanted my son to grow up with all of the delicious treats that I had had in my childhood. So, I made it my mission to turn all of my favorite recipes into gluten free classics. For myself, all I really cared about was getting healthy. For my son, this was a social issue and one that I did not want to color his childhood and experience of food. Of course it did, though hopefully not in a bad way.
This site and my book, The Gluten-Free Almond Flour Cookbook, are the result of my passion for providing my son with delicious gluten free food. It’s been quite a journey and one that has really had a positive impact on my family.
It took a long time though, to heal my gut and my son’s as well. Like some of you out there, the standard gluten free diet didn’t really do much for my son or myself. Probably a lot of you are here for that exact reason. Regular, plain old gluten free doesn’t always work. There can be other food allergies (such as dairy) and issues of chronic malabsorption.
My search for better health lead me to research, lots of research, and my son and I ended up on the introductory phase of the Specific Carbohydrate Diet. We stayed on that (the intro phase) for about a year.
If you don’t know what that is, let’s just say that we didn’t eat sweets for quite some time, and when I say sweets, I’m talking about fruit, dessert, etc. This was a huge challenge, though it really worked for us. My son is now merely gluten free, which for him is fairly easy compared to the Specific Carbohydrate Diet introductory phase.
I personally am fairly Paleo, I find that works really well for my body since I cannot digest any grains whatsoever. I’ve been grain free for more than 9 years now.
Is there a one size fits all solution when it comes to diet and healing? I don’t think so. I believe we are all different, in fact, completely different bio-chemical individuals. Given that, what works for you? Do you have a specific eating plan that you follow? Do you eat things that you know will make you feel yucky? I do.
My biggest challenge these days is dairy. As you can see from my Month O’ Cupcakes, I like dairy, a lot! I know that cow dairy probably isn’t the best for me, as when I have some cheese or whipped cream, the next morning when I wake up, my right elbow hurts a bit. That’s an allergic/addiction that I’m dealing with right now. Nobody’s perfect! I also find it challenging to stay on my ideal eating plan when I’m baking tons of desserts for this website or my books. During those times (which seems like all the time) I knowingly take in more sweets than is best for my body.
So there you have it. My perfect fare is protein and greens with a little bit of fruit –make that low glycemic fruit such as berries. When I eat that way, I feel like a million bucks. Although I have great discipline, I’m also like everyone else. If it’s there, I’ll eat it –to a point, I still draw the line at many, many foods such as gluten, grains, etc.
What do you like to eat? How did you find out you had celiac or were gluten intolerant?
I’m certainly going to go into more detail in future posts and provide specific information about how I like to eat and other tools that I have used to help heal myself. And some of that information might work for you, and some, you might just want to toss out the window! Take what works and leave the rest behind. For me, all of life is simply the process of self-discovery and continual refining and adjustment.
Emily says
Elana this was a beautiful post! I, and I know many other readers, appreciate your openness and honesty. I am so glad you have found what works for you! That must be the best feeling. It’s really nice to hear too, that you admit it is hard and sometimes you eat things that don’t make you feel great. I struggle with this and am really making an effort to let those “slip ups” go instead of beating myself up about them. When your diet is highly restricted (like mine) it sometimes makes MORE self control seem impossible. I’m glad I am not the only one! I am looking forward to more of your insight on healing and things that worked for you. Thank you. Talk to you soon! :-) Xo
carrie @ gingerlemongirl.com says
Very inspiring story Elana! I am working on cutting grains and simple carbs out of my diet. I am already gluten free, dairy free, and soy free… but I still have issues that I’m working out. I think other grains is a big part of that. Your recipes & cookbook have been absolutely lifesaving for me! I hope to post more of my own gluten free almond flour recipes on my blog soon. I never would have learned how to bake that way without your help though! Thank you so much for sharing your story!
Diane-The WHOLE Gang says
I love your story. It’s amazing how complex our bodies are. I’ve been gf since 2007 after being sick for 2+ years and gaining tons of weight fast. A nutritionist figured it out. Dairy left my life a year later and then rice. That’s when I gave up on processed foods and started really cooking and sharing that. I have loved to cook since I was 2 yrs old but like you, I had to feed me and my family when each person had their own list of can and cannot eat foods. It’s settled down now and besides what I’ve listed we don’t eat soy and try to limit sugar. I need to be better at that. Still finding my Vit D is low even after working to get healthier in that department. It’s always something to work on and learn. Life never gets boring.
My almond flour just arrived so I’m going to get cooking. I promised I’d make your chocolate chip scones. They are by far my families favorite thing I’ve ever made from both your cookbook and mine. My boys would like to move in next door to you actually, me too!
Laura says
Thank you for sharing your story! I love your wholesome and healthy recipes. Your blog is one of my favorites!
Meagan says
Well said Elana. What a great post!
colormepink says
I second Meagan’s comment :)
Janet says
Great Post Elana.
I haven’t been diagnosed with gluten free but I have cut out grains from my diet in Feb of this year and I feel a 100 times better. Digestive issues are gone and no more drastic mood swings. I always thought I was lactose intolerant but cutting out grains have alleviated the digestive issues.
I too have a bit of dairy but not too much. Everything in moderation.
It takes a while getting used to eating a paleo/primal diet but I find it a lot easier than any other diet that I tried.
Betty says
Thanks so much for this Elana. Knowing some of your story just makes your website even more personal for all of us. I look forward to your next installments!
KMG says
Elena, I have similar issues and eat mostly Paleo and grain/gluten-free. It was a long trial-and-error process of noticing how certain foods aggravated my numerous symptoms, then cutting them out, seeing how I did, then adding them back in. It took several years to get to where I am now, but these days I can function properly and energetically. I smiled when I read your post because I understand what you mean about gluten-free not seeming like a big deal when you have been eating low-grain for a long time. At one point, I was eating only meat because it was all I could digest (ugh! It was an awful time).
I would love to see you post about non-grain, non-dessert “treats” for people like us. For instance, when I want a treat, it is better for me to make fresh guacamole rather than bake a sweet gluten-free concoction. When I want something sweet, a flax muffin with a homemade berry spread is better for me than something with agave or high-sugar fruits. It’s hard to come up with something special when you don’t eat grains or many sweets. And I live in Boulder, too, so I appreciate when you post any local tips you have.
I am glad that someone else understands the “grain-free” thing, not just gluten-free. I don’t know why my body won’t digest grains, but it won’t and ignoring that fact made me miserable for so many years. Glad that we are both so much better!
babs says
I also follow the Paleo plan. I don’t look at it as a diet, but rather a lifestyle. I came upon your site early in my paleo journey. Your recipes have been more than helpful. I regularly send friends to your site for desserts. Thank you for your wonderful recipes.
Deb says
After six years of multiple doctors and multiple wrong-diagnosis (including depression, IBS, amongst others) I finally found out I had Celiac. And what a relief it was.
I was in college still, and did not understand the impact of the disease, so I was lenient in my gluten free diet at first. My digestive disease consultant put that to an end, quickly.
After some reading (okay, a lot of reading) I felt a primal/paleo lifestyle was the best thing for me, and embarked on a journey into health and fitness that I knew was going to have a pretty steep learning curve but would help me in the long run. Ultimately, obviously, it did.
It has been just over a year since I was diagnosed and I’ve just begun to dip into gluten free baking. Although I love the gfree variations that so many other food bloggers come up with for gluten free treats, your blog, Elana, is the only comprehensive, primarily paleo site that suits my tastes. Without your site I would have never tried baking anything, but now I’m experimenting like crazy.
Thank you, thank you, thank you!
Amy says
I have this level of gratitude, too, Elana, for your beautiful site. I am truly appreciative of your work. Your recipes are our mainstays here at home, and frankly you have the ONLY bread and muffins my GF son will eat. I also enjoy your healthy drinks, salads, desserts, crackers, the kale tart from your book. The green soup, I have in my fridge always. I could go on and on. Many thanks from a grateful, and healthy, reader!
Mary Lou says
Could someone please mention HOW you were tested for celiac? Was it a blood test, or a more elaborate procedure. Thank you,