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.
Kristi says
Thank you so so so much for your blog! I recently found out I am allergic to all grains, as well as dairy, and yeast/brewers yeast (so no vinegars mustards etc) among other things! It was such a relief to find your website! I LOVE to cook, and knowing that there is still so much out there that I can do is wonderful! Thank you and keep the wonderful recipes coming! My #1 concern right now is trying to find salad dressings that don’t have any vinegars or mustards! It is like a treasure hunt!
elana says
Thanks everyone for your amazing responses. It is so wonderful to be part of such a delightful community, and I appreciate all of you everyday. We’re all in this together, which warms my heart.
Aneisa says
Finding your website and book has been the best thing to ever happen to me. I get emotional because removing grains, dairy, and sugar (except for yacon, lucuma, xylitol, stevia and a little coconut palm sugar) is transforming me. I can’t wait to see a year’s worth of dietary changes on my health/body/mind/happiness/etc,. Love, from Canada
Sonshinejudi says
I found out 11 years ago that I was celiac after praying for several months because doctors Dxed me with many things and essentially gave me LOTS of strong pain relievers and tranquilizers which still didn’t help. Life was hell. One day standing in line at the grocery store a mag. caught my attention because the article was about help for all the symptoms I had by changing my diet. I was over joyed because I despise using meds [which didn’t really work]. I learned about the soy protein intolerance almost 20 years earlier so understood that eliminating certain foods could work. That started my gluten free adventure!! I found your almond flower cookbook on a glutenfree website and I was very excited to try some recipes. Then I found your website which has really helped. Thank you for posting your ‘story’. I am gluten, soy protein and sesame protein intolerent–can not even have a drop! I also have multiple auto-immune diseases that react with severe inflammation if I eat chemically processed starches or sugars. A small amount of agave nector, organic honey or maple syrup seem to be ok. I must eat a low glycemic diet also and have not had anything but real whole grains for 3 yrs…but at times I have gone nuts and had gf bagels or bread cause I miss it so much…I recently made the recipe for flax seed meal foccac which I love as I do many of the bread or desert recipes here…they are changing my life for the good as I can now stay on a hi protein, low glycemic food plan and still eat foods that taste real good!! Again, thank you Elana.
Mark says
I went grain free after having digestive issues for 10+ years. You don’t realize how sick you are until the symptoms miraculously go away. I removed all grains, ate more fruits and vegetables and lost 50 lbs.
I have tested negative for celiac. It’s tough to get my doctors interested in this type of malady. They only want to know; celiac or not. After that, there is no name for the need to be grain free. I don’t need a diagnosis to know what’s right for me.
I suspect that many overweight people in this country could be helped by removing the ubiquitous daily carbohydrates. When I talk about grain free with people I meet, they just can’t conceive of the concept. They are hopelessly addicted to manufactured processed grains.
Thank you for your great site. Thanks for spreading the good word.
Karen says
Thank you for sharing your story Elana. Keep getting the word out there!
After an Asperger’s diagnosis and struggling with health issues, I thought of my friends with children on the spectrum who saw improvement after putting them on a GFCF diet. I did the same for myself and not only did my health improve, but I felt a mental clarity I’d never had before. That’s when I first discovered I am gluten intolerant.
I fell off the wagon and began eating “regular food” while pregnant with my son. Big mistake, I was a mess. I went GFCF again when my son was a year old and haven’t looked back – it’s been five years now.
My husband asked me about being GF about a year after I restarted. He’d had health problems for years nobody could explain. When he went GF they cleared up, including a skin problem he’d had since his late teens. Turned out it was dermatitis herpetiformis.
His doctor at the time said with the improvement in symptoms coinciding with the GF diet, as far as he was concerned that was good enough for a diagnosis of celiac. While my intolerance level is relatively mild (I can still do Communion once a week, any more than that and it snowballs into something ugly), DH has it really bad. If he eats something cross-contaminated he breaks out all over and is sick for days.
When we saw our son acting foggy and with a bloated belly at 3 years old, we put him on a GF diet – his doctor said try it two weeks at first. Within a couple of days we saw improvement and he’s now been GF for over three years.
Jose says
I’m not gluten-intolerant but I would say in the last year my wife and I have cut back on our gluten intake dramatically. Researching healthy diets, and migraine triggers, we came to the conclusion that wheat was not really doing us any good. I still eat the occasional pizza, or box of macaroni and cheese, but otherwise we’ve made the switch. I would’ve never done it if I hadn’t found your site and subsequently almond flour. Your blog is great and its value extends well beyond the celiac population!
Jenn Sutherland says
Elana – Thank you for sharing your story and creating this community of sharing all of our stories! Reading all the comments above, I just kept nodding as recognition of my own journey to celiac resonated in so many of the experiences here.
And the amazing thing is – we’re all survivors and we’re truly the lucky ones – having gotten (finally) the diagnoses we needed to live our fullest, healthiest lives. And to have all the gluten-free blogs and communities on the web – it’s a great time to eat great allergy-free food.
I’m coming up to my 8th anniversary of gluten-free life, and I feel like I’m still learning and growing as a cook (and blogger). I recently got glutened while dining out for the first time in a long time, and got very, very ill. It’s not fun when that happens, but it also makes me so thankful for my good health 99% of the time. And thinking that I lived for YEARS with the chronic illnesses of celiac before diagnosis – I’m thankful to know how to heal myself and walk that path back to health any time I do accidentally get glutened.
Alta says
Elana, thank you so much for the insight into your personal decision to go gluten and grain free. I love that you wrote this from the heart – my favorite post of yours to date. Please continue to share these kind of stories along with your delicious recipes! I love your cookbook, and I love that you’ve found a way to feel healthy. I am still struggling, as gluten-free was not enough for my body. I’m now recently dairy-free, and am finding that I have an intolerance to corn as well, and I struggle with refined sugars so I keep them to a minimum. However, they are the enemy – they call my name and if I indulge, I overeat them. It’s a vicious cycle. I have gotten better and better, but as you expressed, none of us are perfect and we sometimes eat things we shouldn’t! Thanks again and keep up the good work. Your contributions are so valuable.
Magda says
I didn’t have any horrible symptoms before I got diagnosed with gluten intolerance but I did have frequent headaches (including the sinus kind) and various aches and pains. I was diagnosed via bioenergetic assesment through my naturopath. Though dairy did not show up on the test, I believe my giving up gluten led the way to my inability to digest dairy well (including raw dairy). I have been GF for 3 or 4 years and dairy free about 1.5 years. I have recently greatly reduced the amount of grains I eat (I try to soak/ferment those that I do eat) and have gone more Paleo like you. I have recently gone through my second pregnancy (both GF and CF) and now have a healthy 5.5 month old baby boy. Though my oldest son eats both gluten and dairy, I’m planning on keeping the baby GFCF for at least a year and hopefully beyond.
Thanks for a fantastic blog – several of your recipes have become a staple in my house and I’m planning to cook more and more with almond flour.