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.
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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.
Jeevan says
I’m still unsure as to whether I’m allergic to wheat or not, but I’ve been avoiding it for three months now. It was a bit depressing because I wondered how I’d be able to deal with all the compromises on taste, but your website has given me faith. Thanks!
MAIRBUNNY says
ELANA,
I JUST FOUND THIS AREA and wanted to tell my story to . todays date is 8/22/12. about 30 years ago i started getting alot of pain in my right side so they took out my appendix after healing i started having pain in the right side again that would come and go. i was diagnosed with cysts on the ovaries. in 1997 i had a surgery on my fallopian tubes because of right side pain.the pain returned so in 2004 i had gall bladder removed a few months later i had a complete hysterectomy. still the pain returned. i went to many docters the last one a gasto guy. had all the major test ect. he thought ibs. still no relief. i was really sick at this point had been in bed for 2 months lost 40 lbs. i thought i was going to die. then one day i was watching dr. oz and elizabeth hasselback was on his show talking about her new book the g free diet this was in 2010. she was talking about alot of the symtoms that i was having. i called my gastro guy and they had me come in for a blood test. i tested off the charts for celiacs!! the reason i was missed by my gastro guy was because i had celiacs with constapation. which i guess is not as common. after talking to my mom she said when i was a baby i was really sick and had to have blood transfusions. now its 2 years later and i am feeling better but the celiacs had left me with osteo arthritis in most of my joints,fybomyalgia,8 shoulder surgeries for calcified tendonitis,and disabled at age 58. i dont usually talk about this but i thought i was important to be toid here. your web site and cookbooks have been a saving grace for me because i was really lost before i found you. and i did go out and buy elizabeths book and it was helpfull too. i am grateful to have a wonderful husband and life is looking up for me. we are both gluten free and happy. i have a garden every year and enjoy all the bounty from it. what we cant use we make sure to share with others. i cant wait for a new cookbook from you. it would be great it if had all your recepies in it!! i have the fybo in my hands and it is hard to type so a cookbook would be wonderful!!! and as the kids in this age say “I THINK YOU ARE A ROCK STAR”!!!
SINCERELY,
MARIAN
Dana says
I am so happy to find your site! This week I was diagnosed as being allergic to gluten, wheat, eggs and yeast. Being a vegetarian, I felt doomed until I found your recipes…Yeah!!!!!
Grace Marie Crummer says
Thank you so much Elana for all your wonderful information and your story of your diagnosis. I was diagnosed with a gluten intolerance 3 years ago, im from the UK and had the symptoms all my life too.They became unbarable when i moved to the states (maybe because gluten in present in a lot more foods here) and that was when i went to get diagnosed.I’ve been a transition for me (like your son,it was more of a social issue for me,like being at parties and your the only one that cant have the cake) But your story has really given me hope. Im very interested in not just finding more gluten free foods,but finding the foods that make me thrive just like you said.Im excited to learn more,thank you again!
Grace
Amy says
Wow, Elana! Thank you so much for sharing your story! I was tested for celiac’s about 4 years ago, and was negative. I have since learned that it’s possible the test was negative simply because I had already stopped eating gluten, and my doc didn’t know enough to not test me since that was the case. I have struggled with intestinal issues related to gluten and simply thought it was intolerance. However, your post taught me something new. I also have suffered from angular chelitis for years and no one, not primary care docs or dermatologists, ever told me it could be related to celiac’s! Amazing! I have been mostly gluten free for several years, but am going full paleo now for training purposes (I’m a runner). So grateful for your recipes!
Thank you, Amy
Jessica says
I have never been diagnosed with any food allergies or intolerance. I have, however, had unexplained pain in my right side for 2 years now. It started in my face and temple and has spread into my shoulder, arm, hand, and leg. I am on medication that helps but does not completely make my pain disappear. It has been diagnosed as neurological but beyond that nothing is known. It is very frustrating and affects my mood to a great degree at times.
I started looking into a paleo/wheat free diet recently. I started the Whole30 diet but did not complete the 30 days (and am a little ashamed of myself LOL). I stumbled upon your site while looking for paleo recipes and it gives me hope. I have always been a great pasta/bread/sweets lover. I am happy to see that there are ways to enjoy food and still keep within the paleo lifestyle.
I have read alot in the past few weeks about the benefits of going wheat/gluten free. I know that I need to give this a try for my health and sanity. I know that there have been quite a few people that have had great success in reducing pain, fibromyalgia, and neurological issues. I want to say thank you for making me have hope that I can really stick to it this time and not feel deprived of food.
I am only on day two but I am determined to make this change. And even if you don’t know it…you will be along for the ride thanks to all of your wonderful recipes.
Jessica
Dana says
Dear Elana,
I stumbled upon your website by chance when searching for a gluten free matzo ball soup recipe and what a great find. I have Celiac and have eaten gluten free for years, but since my two teenagers were recently diagnosed as gluten intolerant, I have been trying many new recipes, especially breads and muffins, in an attempt to make their transition to a gf diet seem as normal as possible. At the same time, I have been moving toward a more paleo lifestyle for myself as I have found I have much more energy when I eliminate grains and fruit. Trying to move away from grains when my teens live on bread, cereal, etc. has added a huge challenge and instead I found myself going back to eating grains when I couldn’t deal with making multiple meal variations. Now my problem is solved thanks to you! The first recipe I tried is your paleo breakfast bread. It was loved by all including my non-gf husband. I knew I had struck gold when my picky, 16 year-old, no time for breakfast, daughter, grabbed a second (and last) slice of the bread on her way out the door in the morning. It is a huge relief to find your simple, delicious sounding recipes to feed my family that rely on non-grain flours. A new door has opened up for me and I can’t decide what to try next. Thank you! Thank you! Thank you! Dana
Maria Burgess says
Hi Elana,
Just wondering if you have found that food might contribute to arthritis. I have recently started to get aching hands and knuckles and I wonder if some food might be the cause. Have you heard anything? Regards Maria
ps This sight is so wonderful. Just loving the almond meal recipes. Should receive your book in the mail soon. Cant wait
Sharon Prahl says
Elana,
Just got to this part of your site. Thanks for sharing your journey. I have recommended many to your site over the years and will continue to do so.
We are currently strictly paleo. We have noticed truly amazing results for our family with this lifestyle. I do not miss what we used to eat at all.
I have practices as a wholistic doctor for over 20 years now and have never been comfortable recommending a diet to so many for so very many different reasons.
I encourage folks to have sensitivity testing done for foods. It can really help shorten the trial and error curve for so many.
Blessings to you and your family for all you offer. And please continue to take ever better care of yourself. You deserve it and we all benefit from having you be the healthier and happier than ever!
Sharon
Carol Ann says
Elana,
Thank you so much for your helpful website!! As someone who is gluten intolerant, I have appreciated many of your recipes. I am also an HSP and highly sensitive to dairy, choclate and soy of which I no longer eat. Just recently started toward a Paleo diet, and it has really helped me to eliminate rice. Still eating quinoa, and not sure if it is allowed on the Paleo diet. Do you know? I am a speech-language therapist who is very interested in nutrition so I wanted to let you know about an article I just read on Dr. Mercola’s website. The title of the article is Dr. Reverses M.S. in 9 Months by Eating Thees Foods. I’m passing this on because you shared in a blog that you had M.S. Hoping the article might be helpful to you! I am looking forward to any additional recipes you may come up with that are Paleo friendly. Namaste, Carol Ann