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.
Dana says
I truly admire your quest to develop tasty gluten free treats for yourself and your family. I also like the fact that you are open-minded and understand the challenges we face with food restrictions (while trying to maintain some quality of life). I can’t have a lot of the gluten free baked goods because I am also allergic to eggs (among other things). I’m a total dark chocolate junkie, and sometimes I have way more than I should. It’s one pleasure in the midst of 15 major foods I have to cut out!
Keep up the wonderful work! Wishing you health and happiness…
Laura says
Thank you, Elana, for sharing such a personal story. Very moving. I have been suffering from IBS for most of my adult life. I was told it was all stress. I have been tested negative for Celiac, but I find that a gluten-free diet helps me tremendously. Unfortunately, it’s hard to stay on when my husband and kids enjoy Persian rice and breads and pasta. I have found that many of your recipes help satisfy my sweet tooth, but I don’t feel so awful after eating them. I have shared your website with many friends and they are always surprised to find how delicious and simple your recipes are. I just have to be more deliberate in keeping the good stuff around me!
Evie Abat, Holistic Health Counselor & Psychotherapist says
I appreciated this entry very much, and I continue to be tempted by all the gluten free treats on this blog!
I’m a Holistic Health Counselor and Psychotherapist, and I am still learning about my own body (it’s still a work in progress!) and which foods make me and my clients feel better. I had some very strange symptoms about 5 years ago when I moved from the States to Argentina where I live now: BAD PMS, headaches, mild depression, joint pain in my right leg, heart palpitations, borderline anemia. I went to an endocrinologist who said I had borderline hypothyroidism and that I just had to “deal with it” and get on some thyroid meds that I would take for the rest of my life.
I didn’t take his advice, of course, but instead began a journey to understand myself better, which meant trying differnt foods, practicing yoga, basically, taking care of myself better. After my friend was diagnosed with celiac disease, I decided to find out if my symptoms were due to that, too, but they came out negative. Then when I started studying to be a Holistic Health Counselor, I experimented with taking out all wheat products. In a few days, my joint pain disappeared, my PMS improved (now I just get a little weepy), no heart palpitations, and I’m not as bloated. Even my periods aren’t as heavy! (sorry, it may be TMI, but this is a BIG deal for me!)
To really prove that I had something funky going on with wheat, I had a wheat fest for about a week–around 1 month into my wheat free fast–and ate pasta and bread. Didn’t overdo it, just ate it like I did before. Results: a 3 day headache, return of my joint pain, and a yeast infection. SOOOOOO much easier going wheat free, so I’ve pretty much stuck to it.
As part of the evolution of my diet, I’ve been including formerly “banned”foods, like reintroducing organic butter and red meat (Argentina has great beef) into my diet, and I feel much stronger. The most surprising thing is that I haven’t gained any weight with my change in eating habits. In fact, I’ve lost weight.
I haven’t cut out all grains, though. I do eat some quinoa sometimes, and organic brown rice is still a staple I eat 2 times a week. I don’t experience any problems with these. I also eat oatmeal a couple of times a month (gluten free), and I haven’t had any reactions with that either. What really helps with grains, I think, is soaking them over night. That may help some people digest them better because it gets rid of the natural insecticides they have that may cause people some problems, and also breaks the grain down a little bit for them.
The body really is a mysterious thing, and it’s been really fun to get to know it! Trying to go wheat free for a few days is the first thing I recommend to clients to try when they come see me for health and wellness consultations!
Thanks, Elanna, for all your wonderful work!
neinah avelin says
I found out I was gluten intolerant 5 years ago… I was suffering from lots of health issues, the most pressing and painful was endometriosis. Doctors wanted to give me a full hysterectomy (though couldn’t promise me I would be necessarily symptom free.) Or they suggested taking contraceptive pills continually thereby stopping menstruation entirely till I went into menopause. Instead I asked to be tested for Gluten intolerance and the test came back positive, since then I have cleared up 90 percent of the symptoms of endometriosis by going on a GF diet. Now I realize just going on a GF diet is not the be all and end all I used to think it was. Its seems that now the dust has settled, I have other digestion issues to deal with that the GF diet alone does not take care of… So I spent a few weeks on a specific carbo. diet, and avoiding sugars etc.. and IT WORKED, I did feel better, much less nausea and bloating, and more energy… It is a tough diet though and I really miss my sweet treats… I’m always fine tuning though, and trying to find the right balance. Your book, has helped tremendously in weaning off of the processed treats.. thank you so much:) Neinah
meredith says
I too am on the gluten-free, yeast-free, dairy-free adventure. I just got my ALCAT results about a month ago and have been getting REALLY creative in the kitchen trying to sneak all my desserts and snacks in any way I can. Also, pregnant, so it puts a damper on my runs to Susiecakes for a cupcake, but hopefully it will all be worth it. I want to support others in my situation and let them know there are options and delicious ones! I have been documenting recipes and products and invite anyone to join me. Any tips on how to get more followers? I’d love to get the word out ther any way I can !
Susan says
Elana, thank you for posting your story! I happened on this site a few months ago, tempted by the “sweets” recipes. Though I do not have celiac disease, wheat is a big issue. I have been eating a restricted diet for 2 years, but am not satisfied with the food or how I am feeling. Processed foods, vinegar, sugar, wheat, soy and some dairy (I eat Greek yogurt) are all off the menu.
Finding transitional recipes – easily found ingredients, still somewhat tasting the same as my previous foods – has been difficult, but doable. What I find is that I’m so tired that cooking for myself becomes exhausting. So, yes, cheating happens. It gets to be a vicious cycle, too tired to fix something, eating what I shouldn’t, and then feeling sicker.
Despite all this, I do feel better than before, but migraines still plague me. Your website and blogs give me hope though, and can help me as I continue to trip through the maze of my health!
Janet says
I’ve spent 20-30 years battling migraines. I’ve been to family doctors, neurologists, ENTs, allergists, dentists, even psychiatrists. They’ve tried sinus surgery, TMJ treatment, beta blockers, calcium channel blockers, blood pressure medicine, allergy shots, antihistamines, decongestants, anti-depressants, you name it, they tried it. I would develop inflammation in my sinuses that would escalate into a migraine. Nothing seemed to help. On top of which, there were times when I was so exhausted I couldn’t do anything. During my annual exam a few years ago, the traditional blood tests showed I had a low iron count (I was also getting turned away from giving blood donations on a regular basis due to insufficient iron levels).
A few months ago I was reading an article about dietary supplements to prevent migraines. Wanting to make sure none of them would have a bad interaction with any current medication I was on, I did a Google search. At the top of the results was a link to a chiropractor who specialized in migraines and fibromyalgia. I checked out his website and decided to give his program a try since all the more traditional methods I’d been pursuing hadn’t been helping. One of the first things he did was a complete metabolic panel on me. They tested urine, feces, blood and saliva. It was from those tests that the results came back on my reactivity to gluten (and soy). It also showed a non-specific elevated level of inflammation.
I’ve been off gluten for three months now and for the last two have been nearly headache free. I’ve not had a full blown migraine and the mild headaches I’ve had were easily remedied without the need for medication. After the diagnosis, I found out a niece of mine is also gluten intolerant. I suspect my mother has celiac because of the digestive issues she’s had for years. I’ve been encouraging her to get herself tested for it.
Because I’d had few digestive issues over the years, I never suspected a food intolerance, though the problems with the iron levels is likely related. I had begun some time ago taking iron supplements because around the time I started having the low iron levels I was also having problems with restless leg syndrome. My doctor had tried prescribing Requip for me. I had a bad reaction to it, including auditory hallucinations. Then I did some research and discovered that low iron levels can result in restless leg syndrome so I decided on my own to take the iron supplements. That seemed to do the trick.
Now I’m trying to balance the gluten-free with some needed weight loss. I’ve put the gluten free requirement as the priority of the two so I’ve been finding it harder to get the right calorie/fat content to lose weight. I just ordered a couple of books from Amazon that are suppose to deal with both issues. The hard thing for me is my full time schedule of work and volunteering for an animal shelter. Like now, I have a momma kitty and four babies to foster and one of the babies is sick and may not survive. Thinking about preparing nutritious, low calorie meals ends up at the bottom of my list of things to do. Of course, being someone who doesn’t particularly like to cook doesn’t help.
I had been on Jenny Craig for several months and was successfully losing weight. It had the advantage of being pre-configured and prepared so all I had to do is grab a frozen meal, pop it in the microwave and bingo! Meal planning made simple. However, Jenny doesn’t do gluten free. In fact, I had to have my doctor send the company a letter with the diagnosis of my gluten intolerance in order to get a refund on the remainder of my last order (I was doing the Jenny @Home program).
I had originally planned to continue doing some of the Jenny foods once I reached my goal weight, then this happened. So, not only did I have to immediately stop all Jenny food, but I had no gradual transition to developing my own menu plan. I called my insurance company to see if dietary counseling was covered by my insurance plan. Apparently it only covers it if I have diabetes. That kind of stupidity in insurance coverage makes you want to fake an illness if it means you can see the specialist you need. [sigh]
Angela says
I went to a nutritionist after being diagnosed with celiac and was beyond disappointed. She knew less than I did after I spent only a few hours on the internet and actually gave me bad information. Don’t feel at too much of a loss about not having nutritional coverage. You can learn most of what you need from books and careful searching online. Good luck!
Fiona says
I suffered from chronic eczema,numerous allergies, sinusitis, digestive problems and asthma for 38 years. In the UK my doctor just wrote all of these down to hereditary problems (my father’s family having suffered similarly over the years) and simply treated the symptoms (lots of steroids in one form or another). Then in 2005 we relocated to Germany for work and my new doctor dramatically announced that she would get to the bottom of my health problems.
I sceptically agreed to various tests and was completely heartbroken when I was diagnosed with celiac disease…. until the GF diet began to have marvellous effects. After that we continued allergy testing and eliminating more foods (eggs being another huge problem for me) until I was almost completely free of eczema, sinus and digestive issues. I have never had so much energy!! If only my UK doctors had been so well-informed and pro-active.
I’ve not heard of paleo before – very interesting. Not sure I could stick to it though!!
Steph says
I’ve been gluten free for 18 months and rarely eat grains of any kind, because I feel best that way. I wasn’t diagnosed as celiac, but as having a gluten sensitivity that was found in blood work. Just curious…was your and your son’s diagnosis based on blood work or a biopsy? I have 2 sons as well and, although I don’t see specific symptoms, I wonder if they should be tested.
A different Steph says
Steph, what blood test did you have that showed gluten sensitivity? I tested negative for Celiac but believe I am gluten sensitive. I also believe I have dairy issues. I was told that 50% of people with gluten issues also have dairy issues.
Steph says
Hi Steph, the blood test that I had was a “Gliadin Peptide Ab, IgG” with a Reference Range of 10 Positive. My results were 14.
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.
Alicia says
Thank you so much for posting that. I am gluten intolerant but also can’t digest grains or dairy and I am allergic to soy. Coconut milk and almond flour have become my best friends along with stevia since I can’t have sugar either. It is a relief more than a burden to eat this way since I know I just won’t feel good if I don’t. Thank you for all your recipes! I would love to see more dairy and sugar/agave free.
pam says
Hi,
Great to hear so much about peoples stories and who they feel. Im gluten free and it took me some time to get gluten free. Always sick. I’m doing great being gluten free, but think i might be intolerant to sugar as if i eat sweet cakes and bis, pudding, i get joint pain and upset stomach. Headache. dose anyone else find sugar bad.