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.
Grace says
I just love your post about going gluten free. I too had health issues for many years before giving up gluten.
May I say I just love your recipes and appreciation for healthy, low glycemic cooking. To be honest, I read the Glutenfreegirl blog a lot, and when I noticed her recent comment about not liking baked goods made solely with almond flour, I admit I had to snicker. No way could I eat her recipes (mostly made of refined yet gluten free flour), and keep my blood sugar levels stable.
Thank you for your blog and recipes and appreciation of healthy cooking! I love baking with almond meal, although I do use Trader Joe’s brand because of cost factors. No way will I ever be able to afford blanced almond flour until the cost comes way down!
Thanks again, and keep up the wonderful blog.
Sunny B says
Elana,
Thank you for sharing your story. As mentioned on FB, it was just one year ago this week that an emergency surgery triggered adult onset celiacs and DH for me. Prior to that, much like you, I had other symptoms of malabsorbtion, including a life long battle with anemia. I constantly felt hungry, overwhelmingly hungry, no matter how much I ate…I now believe it is because my body just never got enough nutrition…the unfortunate side-effect is that I was severely overweight as well.
In addition to my daughter who is severely allergic to cow’s milk proteins, my son’s best friend from first grade had celiacs. From the moment his mother explained to me what it was he had, I began wracking my brain, trying to figure out ways I could ensure he was always included in our events…birthday cakes, pizza’s, etc…I did my best to make something for him as well. I believe my time with that family, in addition to the adjustments I had already learned to make for my daughter, all prepared me for what was to come.
Like you, my diagnosis was more expedient than most. Because the rash and welts appeared almost immediately after surgery, it was initially thought that I had an allergic reaction to the medication that was given me at that time…the stomach pains started shortly after, but again, we thought it was the medication. Steroids, Benadryl, nothing would clear it up completely.
After several months of continuing to fight the rash, and feeling ill, I approached my Dr with the idea that I needed to go through an elimination diet. Outside of the steroids and allergy medications, I had been off the anti-biotics (who we believed were the original culprits) for nearly two months, and nothing was getting better. Because my diet is nearly dairy free (I do have cows milk protein when I am away from my daughter), wheat seemed to be the natural first selection to eliminate. I did, and I got better.
It was at this point that we began the testing process. It took several months to officially diagnose me, and it took nearly as long for me to figure out exactly what gluten is (barley?? really?? no more malt, ever?? MAN!).
It only took a few weeks for me to become concerned with the lack of fiber and the high carbohydrates/starches that a gluten free lifestyle seemed to include.
My ex-mother-in-law, who is on a gluten free diet as part of her RA treatment, had talked to me about you and your recipes several times…for my birthday, she not only bought me your cookbook, she also sent me our first 5 lb bag of almond flour. :) Heaven! There are few baked items that I will make with anything else now…I feel better using your higher protein recipes. I appreciate the fact that most of your items are dairy free already, and if they aren’t, it is easy for me to find a replacement.
That first 5 lbs only lasted us about two weeks (I had birthday’s, class parties, and bread to make…have I mentioned I have five children and a husband to cook for too??). I have since purchased another 25 lbs, and am about to purchase our second large order.
Because of the extreme sensitivity I have, we, as a family, decided it was best to create a gluten free environment in our home. My children get their chance at gluten; we just don’t make anything in the house so as to avoid me getting sick. Your recipes have made the transition easier than I could have imagined.
After a year of steroids, I am finally on the right track (and off the medicines!). I hope to help my body heal in full, hope to lose the weight that has piled on with the treatments I have been going through, and look forward to not only a healthier life, but a tasty one at that.
Thank you Elana!!
Sincerely,
SunnyB
Jenda says
What a lovely community that exists where we can share our stories—thank you Elana for maintaining such an upbeat atmosphere and for your simple, delicious recipes.
I was diagnosed with PCOS when I was a teenager, but it was only in the last few weeks (I’m trying to get pregnant) that I went to an incredible ND that explained the relationship between PCOS and insulin resistance—which explains why my regime of serious exercise, including a lot of running and a lean diet, has not resulted in a pound of weight loss. She’s recommending a Paleo diet as well, and compliance to no gluten or dairy.
Using blogs such as this has helped keep the journey one of exploration, curiosity and abundance—rather than deprivation.
The side effects of this kind of living is better health, despite all the obstacles. And honestly, I feel like my diet is cleaner and richer than it’s ever been.
Keep up the good work, all of us, for taking our health into our own hands, and thanks for your inspiring example Elana.
Jessica says
I didn’t think that I had a gluten sensitivity until I started eating Paleo at the first of the year. I had been tested before for Celiac Disease based on symptoms, but the results came back negative. As I now know, those blood tests almost always incorrect, and although they may indicate true Celiac, (intestinal damage) they will not show a sensitivity. After eating paleo for 30 days, and re-introducing grains back into my diet, it was obvious that grains did not agree with me!
Like Elana, my health problems started after pregnancy. After having my second child, my health was a wreck for no apparent reason. I took my laundry list of symptoms (depression, bloating, water retention, facial numbness, elevated blood sugar, abdominal pain, ovarian cysts, severe PMS, joint aches, and lethargy) to several different doctors, ending up with prescriptions for antidepressants, diuretics, (sp?) and thyroid meds for hypothyroidism. My symptoms became “manageable” but I still wasn’t myself. I started embracing the idea that this must be the new me, and I just needed to deal with it. That is no way to live–let me tell you!
Now that I am gluten, and mostly dairy-free, my symtoms are GONE and I am no longer need ANY medication! I feel great, and am a true believer in an allergy-free (Paleo) diet.
Thank you Elana, for all of your hard work and dedication. Your recipes are delicious, and I have shared your website with ALL of my friends!
Lynn Salmon-Easter says
Elana.
I stumbled upon your website last year during the holidays,when I was looking for a macaroon recipe. Your website has been a lifesaver for me both physically and emotionally. I was smitten from the first glimpse and knew your site was different. It has been a love affair ever since!
I have been gluten and dairy free since 1996. Similar to you, I have discovered that I feel best on a paleo diet and need to remain grain free to feel optimall as well.
I guess I am just SO thankful for your gorgeous simple cooking!! Your site is really helping me to finally come to terms with my optimal diet. It is such a delight to read your posts and hear from others that are grain intolerant and more. Honestly, I just don’t know too many people in my daily life that eat paleo. I have been ruffled emotionally over the years to find that going gluten and dairy free was not healing me. I have dabbled in the SCD diet, but have never committed wholeheartedly. You inspire me. And it is no wonder I was attracted to your site instantly…. Being SCDesque and paleo. It is the first site I have really delved into fully.
Thank you for all your efforts and hundreds of hours inthe kitchen. We are all so grateful for your tireless commitement and honesty.
TESTING
For those of you interested in testingbfor gluten sensitivity/celiac as well as dairy/casein, soy and egg. I highly recommend http://www.enterolab.com for testing.
This site was started by Dr. Kenneth Fine. He is an MD that has made it his mission to educate about gluten sensitivity and celiac. There is a ton of information on his site and many options for testing. The testing is thru stool and you do not need to go through a doctor to get tested.
On this site you can choose to get genetic testing done through stool, which I did when I had my daughter to confirm she was a celiac gene carrier. You can also have other sensitivies tested as well as yearly testing to see if you are getting hidden gluten. I can’ t say enough how this site has changed my life.
Why stool testing vs. Blood.
Just a word about why enterolab is a good choice. Aside from the fact that you do not need doctors orders to get tested through enterolab, the stool testing shows a greater accuracy. It is known that for the blood test to show positive for celiac, there has to be damage in the intestine. If one can catch their sensitivity sooner than later you will be much better off!
Good luck!
Jessica says
As usual Elana, a thoughtful, touching, sensitive and timely reminder of the heady highs and occasional lows of negotiating an alternative eating plan.
As for my tale, I had several symptoms including many of those mentioned above.. chronic inflamation, depression, earaches, fatigue, stomach pains, mood swings, neurosis, horrible skin, paranoia! I think the worst by far was a crippling social anxiety.
The strangest part of it all was that it was just “normal” for me. It was like I was behind some glass wall where everyone else seemed to know how to be happy but it was completely foreign to me. My whole adult life seemed to be physical or mental pain. I was 32 when I was on the verge of a nervous breakdown when a colleauge suggested I see a specialist that had helped her auitistic son through diet habits. I knew I had digestion problems my whole life but I always broke the rules. It was as you say like an addiction, so tied up in emotions and ideas of rewarding the self with food.
Anyway it seems like a lifetime ago- merely 2 years and I have a completely new life after listening to my body with love. I feel like I have just been born!!! Ha ha hee hee life is so beautiful and delightful and full of potential. I have broken through, risen above so many obstacles and with a regime of yoga- kundalini is particularly excellent for the nervous system if you are interested- I have come to a place that I had no idea about- balance! I am almost completely painfree, positive, happy, creative, confident and looking forward to so much in my future.
Thank you Elana for your pragmatic intelligent approach and your generous sense of community. I still have so many recipes to try in your book ! Love and light
Amy Griffin says
Elana, thanks so much for sharing your story.
If you don’t mind me asking – how did you and your son get tested? I’m so confused about this issue. I’ve had a suspicion for about 2 yrs that my oldest son and myself have celiac. I started noticing right after the birth of my 2nd son, 2 yrs ago, that my belly would hurt, I would have bowel issues, etc, whenever I baked challah on Friday. We eat very healthy, compared to the standard of our country, and are really into traditional foods (fermentation, raw, good, local fatty grass-fed protein, etc), so I was surprised when my health and my son’s health seemed to suffer so much. He gets rashes on his face and has severe bowel issues, also complains about his belly almost every day. It makes me so sad. Now that my youngest son is two and in the process of weaning (eating more solid food), I am noticing the same rashes and bowel issues that I suffer from and my oldest suffer from. It’s almost uncanny, really, how we can all wake up in the morning and have the same exact symptoms after eating out at a restaurant, without talking about them to influence each other. Do you know what I mean?
Anyhow, I have gone gluten free in our house for weeks at a time and when we do it my son feels wonderful (and so do I). Basically, we do protein (meat, fish, fermented raw dairy) veggies, fruit, brown rice or rice noodles, and sprouted lentils. We all feel great! However, we live near family, and though they are all very loving, they can be very opinionated about alternative food and pressure us to eat at their house, feel hurt if we bring special foods or tell them we’re not eating such and such, and then we give in and the bad health cycle continues. Perhaps you’re a bit familiar with that.
Basically, I really, really want to get my son and myself tested so that I can be truer to myself and have something “tangible” and consistent when it comes to the way that our family eats, especially when confronted with hurt feelings and excessive pressure from others. I’ve tried going the gastro-doc route, to no avail. (He just kept telling me that all toddlers and preschoolers have stomach issues, constipation, loose stools, belly aches, eczema, etc…) Just wouldn’t do the test and I didn’t have the energy to try to convince him.
What type of practitioner did you see, and how did they test, for you and your son?
Thanks again for your story and all of your hard work.
-Amy
elana says
I was diagnosed via this blood work panel, which normalized once I went gluten free. I also had the genetic test for Celiac done as well. No biopsy.
Lexie says
Thank you Elana.
Carolyn says
I was looking at your book on Amazon and I noticed that your recipes didn’t include Xanthan Gum. I was always under the impression that xanthan gum was a necessary ingredient in gluten-free baking to help bind the ingredients together that the wheat glutens normally do. Please advise. I’m skeptical to try GF recipes without xanthan as it’s costly to waste the precious GF flours.
Betsy says
Elana’s recipes largely use eggs as the binder. I have tried nearly everything in her cook book and many many things on the website as well, and I have never had anything fall apart on me. Don’t be afraid!
elana says
I haven’t ever baked with xanthan gum or any other gums. They aren’t really necessary when cooking with almond flour
Beulah says
Thank you for sharing your story in this beautifully written essay!!! I would also like to hearing your journey of healing with MS.
Beulah