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.
Susan Shaver says
I am so pleased that you have told us about your own story, and I am looking forward to hearing more about how you really eat to feel good. I had almost cancelled getting your emil info since it seemed to be mostly deserts. I discovered that I had a gluten problem when I visited Japan as a delegate from my town to our Japanese sister city and told them I didn’t want ANY American food, only Japanese. Well guess what! My almost constant diarrhea went away. Then when I came back home within a few days it started up again. I had ulcerative colitis and am quite irritated that the docs had never suggested gluten free. I was on gluten free for about 5 months when I heard about the no grain, no sugar food plan that my chiropractor was starting. Wow, after 4 1/2 more months – my arthritis had also gotten much better, I totally went off all the pain medications. I lost 35 lbs – went from a size 16 to a 10, and eat entirely differently. I don’t even do your agave recipes, but do occassionally use stevia or xylitol. Mostly I eat organic vegetables (the low glycemic ones) berries for fruits, and grass fed beef, free range eggs and chicken, organic butter, cream and yogurt. I don’t even feel like the same person. I am looking forward to your healthy paleo diet recipes. Thank you Elana!
Susan Shaver says
Oh – forgot, I also eat lots of nuts, and good for you oils like coconut and other nut oils, and grow sprouts for live food, and soak almonds overnight – yum.
Monique says
hi elana
what a beautiful pic of you and your boys. thanks so much for sharing with us. i too feel best on a low fruit paleo diet. i love dairy but it doesn’t love me.
best
monique
Katie says
Thank you for sharing your story Elana! Although I tested negative for Celiac, I know my body does not tolerate gluten! I am still working through other allergies (or what I think are allergies) with no real help from my doctors. I get itchy, red rashes and intense stomach pains on a daily basis and have had no luck making a strong connection between my symptoms and my habits or diet (other than the gluten problems). I just cannot seem to figure it out. Through all of my frustration, your blog posts give me something to look forward to. I am always excited when I get a free minute to check your site for new recipes. I was overjoyed to see such an open and honest post from you today. Thank you for all of your hard work and delicious, healthy recipes.
Brandon May says
Beautiful. That’s all I can say. I love the fact that you are very honest with us, telling about having your dairy at times when you know you shouldn’t. I do that too, but am weaning myself off with self talk, meditation and self hypnosis, It’s worked amazingly so far (a week into phasing out most pasteurized dairy).
I started eating grain-free since 19 years old, so about 1 1/2 years ago. It’s completely changed how I look at food, how I feel, how I look and so much more. I just do better on a grain-free eating plan. I’m also a semi- low carber, but not intentionally; it’s only because I’m grain free I still get healthy carbohydrates from low-glycemic fruits and vegetables, and occasionally (and I mean rarely) from sprouted buckwheat and quinoa.
Your website is amazing because I’m also love to cook, and I like to find recipes that will suit me so I can use them as is, or tweak them a bit until I receive a good alternative. You give me so many ideas, and I love you for that. You are my favorite blogger.
It is my goal to be like you in some ways–to inspire, help, attend and excite others, while still holding on to my unique personal touch. I am so grateful for you, and thank you again, for your story and your work.
-Brandon May
Alissa says
I too would love to see information about how you actually eat day to day. I think paleo might be the way for me to go, but with how much else I have going on in my life (as a grad student in a crucial time of my studies), I don’t have much free time to research it.
Audrey says
I remember talking to the parents of the birthday kid before the party to make sure there was something for my son to eat. If it was hot dogs, I would put his in a thermos hot, so the mom could just serve him. If it was PBJ I would send his almond butter and jelly sandwiches. His allergies weren’t gluten, but chemical/artificial colors/sugar related. It was nice to have him seem to be having the same food, but really eating what worked for him. I always arrived a cake time, so we could take his home to “eat later” giving him a safe treat instead.
Lynnette says
Elana, Thank you for contributing to my joy in life with delicious food I can eat. I am significantly healthier, vividly happier, cognitively clearer with gluten/grains, cow dairy, corn, sugars and high glycemic fruits out of my pantry. Paleo describes my food lifestyle. My new boyfriend greets me with little bowls of olives, nuts and elk sausage from his successful elk hunting trip. Grass fed meat is all the meat I eat. I was diagnosed gluten sensitive in 2006 almost on my deathbed. When a friend told me her aunt died at my age from gluten sensitivity I found the Gastroenterologist in Longmont knew all about it. My 19 year old son suffers bronchitis and ear infections just like I’d had and finds removing dairy is providing relief. I quit dairy at age 40 and have not suffered hardly a cold since then after a youth of ear ache and later strep throat that antibiotics failed to manage while damaging my immune system. My daughter 21, finds her mood and attitude are much improved without gluten. Its great to know what real food is and isn’t. Progress (commercialism, patenting seeds) has not created better food. Mother Nature had it right. Lets subsidize organic vegetables, fruit and grass fed meat producers. And get back to heirloom seeds kept safe by farmers. Buy local. Remember Mom said to chew our food. And real food is slow, best shared with friends and family, and the best possible health expense. Thanks to you Elana!
Karen says
Hi Elana,
I read about your relationship with milk with mixed feelings. Sad for you that you have the problem, and hope for me that you will step away from it and offer up some creative solutions as dairy subs. I am gluten, dairy, and soy free. Most of the dairy subs are soy. Ughhh….
I love your site and I love your cookbook but the month of cupcakes nearly lost me. No interest whatsoever and they just kept coming and coming and coming and all with a dairy based frosting it seemed. I am glad it’s over and so pleased to have more recipes without the fluff. Sour grapes I suppose since I can’t have the fluff.
I love that your recipes are paleo in nature most of the time. I think that’s what originally drew me in.
So, hopefully you’ll come up with more great recipes to share. I can’t help you with giving up milk. I hated it from childhood on. I do miss whipped cream though. :^) Thanks for all you do!
anna says
It was really nice to read your journey and how you got to creating this beautiful (and I’m sure time consuming) blog. I too started my blog after I got the results back from an allergy blood test, and decided to change everything I knew about cooking. I have ulcerative colitis and wanted to see if I could help my symptoms in anyway with my diet. When I learned that I was allergic to eggs, dairy, soy, wheat, corn, and some other random foods (tuna, mustard, crab, pinto beans, and peas) I was scared to eat out at restaurants for about 6 months, and always cooked for myself. During this time I collected cookbook after cookbook, and made links to all my favorite and helpful blogs. Now, less than a year after my allergy test, I feel way more confident in the kitchen, as well as ordering at restaurants. I just want to say that I appreciate what you’re doing, and I hope my blog will one day help and entertain as many people as yours has already done.
Anna says
Super interesting Elana! While not celiac, we suffer from gluten intolerance. Symptoms are far reaching from bipolar disorder, skin problems, tummy issues, aches and pains, distorted sleep patterns, behaviorial problems, yellowing teeth, gum disease, body temp control, sensory issues, anxiety, OCD, developmental delays and the list goes on… All are miraculously resolved in a GF diet. I agree it is just a four letter word that has become the only way for our family to function. It is our norm.
I am also unfortunately intolerant to dairy. I used to cheat on that one but I have learned my lesson. Severe stomach pains and bloating 5 hours after ingestion followed by skin breakouts and then my immune system tanking leading to a cold after each episode makes it just not worth it. I still miss it though and can identify with the *addiction* you speak of. I rely heavily on coconut milk for desserts and in times where I crave the creamy taste and texture of milk. I have also discovered I can tolerate a bit of goats milk in my English tea and some goats cheese on occasion. This is my compromise.
Dates, onions and smoked food also cause me problems. Not fun have food intolerances, but grateful to people like you who help make our culinary lives a little more interesting. As a Mom to a 5 and 8 year old who both require gluten free living for quality of life, I thank you from the bottom of my heart for all you do.
Looking forward to what else you have to say on this matter. Thanks for sharing. Anna