Looks gorgeous doesn’t it? I can smell the bread just by looking at the picture. After over 2 years of not having a simple sandwich, Jon baked me a gluten free loaf the other day. I have to tell you, the joy was so overwhelming I almost cried. He used the recipe found at the Gluten Free Goddess’s Blog, and it was great. I have yet to find a loaf of bread that is exactly like what I use to eat – there is always a dryness factor that hasn’t quite been worked out, but it was bread… glorious bread! And I was and still am grateful to be living with someone that can bake something for me.
I didn’t know about my intolerance for gluten until about 4 years ago. And the journey since then has been a challenging one for me, but certainly not as challenging as the road leading up to my finding out. Being that I’m writing about food here on this blog, I felt it was time to share this journey with you all, since my gluten intolerance or Celiacs is an integral part to my food choices and my food practice.
Celiac Disease or gluten intolerance is a genetic autoimmune disease that affects one in 133 people in the United States. It interferes with the absorption of nutrients from food and can cause gastrointestinal and neurological issues, infertility, skin rashes and cancer. The only treatment for Celiac Disease is lifelong, strict adherence to a gluten-free diet. Not all who are gluten intolerant have Celiacs which is the genetic cause of the disease, but for all intents and purposed the results and the life style change required is the same.
Looking back throughout my life, there were signs. They were subtle, but there none the less. I have always been anemic or borderline anemic. Despite my fairly good diet growing up at home, the anemia persisted. It wasn’t until later when I was in High School and then in college that my diet got worse and so did my anemia. Along with this symptom, was the constant feeling of bloatedness and that heaviness that came after eating anything. Really, I just never thought about it, and considered it normal.
After college, the weight gain started. My diet had been awful, consisting of the typical fast food diet every college student seems to be prone to. Along with this came a depression that lasted a few years, and a general heaviness that was all over, not just in my belly. I can’t really describe it fully, because there was a general haze to my life for quite a number of years that also coincided with some very challenging relationships and the death of my father.
By the time the year 2000 hit, I was deep into therapy, self improvement, and beginning on a vegetarian diet. This helped tremendously in terms of feeling better. The anemia persisted, the weight and bloatedness persisted, but my head was clearer and my path to conscious eating began, which lead me to really start paying attention to my body and what it communicated to me.
Over the course of the first 5 years of this journey, I juiced, fasted, cleansed, went raw for several months at a time and really took stock of my body and what worked for it. I knew certain things like cheese really didn’t serve me well and when I stopped eating it the congestion would stop and I would feel better. And when I went raw or juiced for extended periods of time I felt better then I had in years, although I always found it hard to sustain this diet for any constant length of time.
By 2005, I was doing yoga 3-4 times a week and running 3 days a week. I was in the best shape of my life, and eating very little. Its interesting now to look at this, because the eating little had to do with an avoidance of feeling bad, and of gaining weight. I was drinking loads of Superfoods to keep myself nourished, and sometimes the superfoods would bring back that same bloated, and now painful feeling. During this time, Jon and I had broken up and during that 4 or 5 months apart, I ate out much less, because I wasn’t dating, and this also contributed to feeling better. I know this now, but didn’t then.
I’m not sure why what happened over the course of the next couple of years was such a health crisis for me, but it was and it was horrible for me. Jon and I got back together, and eating out once again became part of my world. Along with that, Jon and I loved hosting dinner parties and we did that, often. I was eating more. And by more, I don’t mean I was binging, but I was eating 2 and 3 meals a day, along with eating at restaurants and hosting dinners. And although not eating is absolutely NOT a good thing, it had kept gluten out of my system, hence I felt good, and strong. But with all this food, albeit still vegetarian, in my diet, I began to feel worse and worse.
This time the symptoms were more severe and different. The bloated feeling gave way to random abdominal pains, intense fatigue, headaches, depression, hormonal imbalances, and exercise became impossible as even walking a block would cause me severe muscle cramping. I would find out later that this was due to the severe anemia I had and lack of oxygen to my extremities. I started gaining weight and becoming more inflamed. My bones hurt, my joints hurt, my skin was looking aged, and my hair continued to get more and more grey even though I was still dying it at the time. I also had a series of anxiety attacks, which I had never had before in my life. My system was so out of whack, I was chemically imbalanced and malnourished and in pain.
This went on for months. At first I thought I was fighting something off, but that quickly became this growing fear that something was seriously wrong with me, and this caused huge fear. I thought it might be cancer or some other terminal disease. My mind during this time was hazy and just growing in terror that my body was completely out of any control and I couldn’t for the life of me get a sense for what was going on.
Finally, I went to the doctor…
Continued… stay tuned.
I am very interested in reading the rest of your story. I believe I may have Celiacs…I have thought so for quite some time. I have all the symptoms described above. The abdominal pains extend to my chest which sends me running to the ER at times because they are so bad (like last Tuesday when I spent the entire day in ER being poked and tested for everything from Kidney Stones to a PE with the finall diagnosis being.."we think it's just your stomach.") I literally couldn't MOVE from pain though. I've played around with going GF but I never manage to stick to it because…well…because food is my business as well as my hobby. I did a raw food stint a few weeks ago and felt great but like you…I just can't stick to it and truthfully I'm not certain that an all raw diet is the best way to go for most people. Some foods are just darned hard to digest raw no matter how much you puree, pulverize, press and dry them.
I began having panic attacks about 3 years ago…never had them before. They are WAY beyond anxiety. They are lunacy…can't breath, chest pains, blood pressure shoots up sky high, crying hysterically, shaking, can't sit still and worst of all…this over all feeling of impending doom. Thank God, I am not depressed but of course Alopathic doctors want to give you either an SSRI or some type of psychotropic drug for a flippin hangnail these days. I am SO sick of being told that all these pains and aches and real physical manifestations are in my head and that I should live with a drugged up mind and body for the rest of my life.
My doctor tried to convince me to go on Buspar after this last event and I said, "I have to respectfully decline." She was so mad she could barely be civil to me for the remainder of the appointment and she hasn't even called to see how I am because I dared to have an opinion about MY OWN body and what I will or won't put into it. I do EXACTLY what you described above…I go for as long as I possibly can stand the hunger pains before I eat because I'm so afraid it's going to set off another bout of heartburn or stomach pains or diarrea or chest discomfort. I'm allergic to dairy and eggs…the dairy I can cheat on a little…the eggs just about kill me with stomach pain and skin flushing so bad my face looks like I've had my head in an oven. I am not currently anemic because I take B12 and folic acid out the yin yang but I have suffered from pernicious anemia in the past. I can not lose ONE FREAKIN POUND despite the fact that I count every damned calorie that goes into my mouth religiously and I exercise like a manic WHEN and IF I am not in so much stomach, flank or back pain that exercising is completely impossible.
This last trip to the ER they were positive that it was my gallbladder because I had so much pain up under my right ribcage that I cried when they touched it. After 2 chest xrays and an ultrasound they said…nope…gallbladder is fine…are you constipated? I said, uhm…not hardly…I have the oppostie problem usually. The last 4 years have been a friggin nightmare and I've been in and out of the hospital and to dozens of doctors with no solution. I have basically resigned myself at this point to believing that whatever it is, I will just drop dead someday and they'll all be standing around scratching their heads wondering why. I know that may sound like an exaggeration but it's been so bad that I literally believe in the back of my mind that whatever this is…its probably fatal at some point. There truely is NO help in the medical community…at least not that I have been able to find.
Oh Jillyann. I can so feel you. And all of your words brought back to me how utterly desperate I was during that time in my life. I will definitely write about my experience with the medical system in the upcoming post. But for now I will just send you love. Honestly, its such a hard and painful journey. The discomfort of the body is always compounded by the psychological toll it takes on people when they have no idea what is going on and no alleviation in sight. Its awful.
In the end what I learned, and continue to learn, is that my body is in my hands. I didn't get the help I needed from the medical professionals at all. And it wasn't until I took my own path that the answers came. But even then… this isn't a condition that ever gets 'cured'. Its forever. And that comes with a whole other layer of issues and concerns and frustrations. Part of why I created this blog is about coming to terms with MY food practice. A practice that is unique to me, given my body's needs. And you know, sometimes I want to rail in frustration about it. Still.
Thank you so much for sharing your story here with me and with the rest of Food Practice readers. If anything we can be a support to one another.
Amazing how much is linked to our diets. Glad you found out. Zomppa Citadel Moon just wrote about how to raise children with food allergies – not easy!
My aunt has this. It took her awhile to really figure it out, but I know she feels a lot better now. I've tried reducing gluten in her honor. Probably good for all of us to have more veggies!
Hello Elena…
I have a dear friend who has been diagnosed with ciliacs and I constantly am looking for ingredients and recipes that will help me make him bread product that satisfies. It is such a challenge, but I've happened on some good recipes. He has been able to manage his condition and is even brewing gF beers that taste wonderful! I'm so glad to read of your success in taking control of the condition … it can be a long and arduous process getting folks in the medical world and the food world to understand the condition! It's hard, too, to change our own eating habits!