So many things have come to light this last year of living as gluten-free as humanly possible (asking for "sin gluten" all over Spain in November of 2008 sometimes yielded an ok meal for me; I remember right before our appearance at the Tanned Tin Festival in Castellon asking about the vegetarian paella -- well, within minutes I knew the answer, and unfortunately for me, I ended up in the bathroom 5 minutes before we took the stage. I made it through our performance fine, but I was very irritable for the rest of our stay--poor Jim!)
When I look back on my life, some of my late teen and early adult years seem shrouded in a fog -- bad skin, battles with depression and anxiety, mood swings, horrible PMS, bad menstrual cramps, a bubbly incredibly itchy skin rash known as Dermatitis Herpetiformis or DH, being either bloated/constipated or food would pass seemingly right through me, headaches and having depleted energy levels that I tried to eliminate with running and kickboxing, and balance issues I tried to counteract with Yoga -- these were all part of the fogginess.
My gluten intolerance, I believe, was triggered at college. I had an allergic reaction to Penicillin (age 19) that involved hives and my first experiences with asthma. Then I started having bad skin and weird digestion, mostly stomach pains from constipation or gas/bloating. More allergies cropped up later: cats (age 29, more asthma) when I lived in a leaky moldy apartment -- the mold and cat dander were too much for my already compromised immune system, but I didn't know that then... And dogs and horses. The whole time I was reacting to wheat and dairy, but I had no idea why. People eat pizza, and so would I...if I am sensitive to it, it has to be better to inoculate myself with it (I probably had wheat and/or dairy every day though), otherwise I will become bubble-girl. I will just put this steroid cream on my itchy, bubbly rash after I eat a pizza! And chew on some Tums. This was my way of thinking.
Doctors diagnosed me with "unexplained anxiety". Around this time, I spent hours on the phone with my parents and my brother about quitting music because I was so freaked out by daily life. I was floundering. My friendships and relationships in my mid-twenties went badly. (Thanks to those who stuck by me!) Then in my late twenties I saw a homeopath, who put me on a good diet, but there was still gluten and dairy in it, so my symptoms did not abate much. His explanation: "We don't really know why women have hormonal breakouts, bad PMS, etc." I was just going to have to live with myself the way I was.
Think again!
Since I was 22, when I had a stressful experience with a teacher at school just as I was graduating, I developed a condition that started with a clenched throat and tongue feeling and progressed to pain in my upper chest, shoulders and upper back. It would last sometimes a week in length, and then disappear as mysteriously as it appeared, only to return in a few months, or weeks. It would feel pretty incapacitating at times, but somehow I soldiered through. No doctor ever could tell me what this was -- gluten-free, I don't get this condition anymore. I thought it was brought on by stress, and I would get it about 6 times a year from age 22 to age 36. Wow...since it has gone away, I have to think it was my diet that brought it on. Maybe it was acid reflux? No idea...whatever it was, I will never willingly eat a pain au chocolat, as much as I miss them when in Europe, in order to never feel that way EVER again.
And the years of my body not being nourished by food also gave me muscle spasms (probably a magnesium deficiency), the ones where you wake up and can't turn your head! Not a good way to spend three days of your life, multiple times a year. Especially if you play string instruments for a living and in bands -- sorry, Eyesores, for all of those times I was unable to practice, or worse, showed up in pain and played grumpily through it...these spasms, I am happy to say, are diminishing as I heal and nourish myself.
Fast-forward seven blurry sick years of denial: I moved to Philadelphia with my now husband in March of 2006, after living in Ireland for 6 weeks. I was eating gluten and dairy over there (mmm, Guinness like you've never tasted!), but I stopped using my steroid cream -- I ran out, and I decided I was done with it, that it couldn't possibly be good for me. I had been using it for about 6 years, every day. It healed the horribly itchy and oozing rash [
Dermatitis Herpetiformis - DH]-- DH is the skin manifestation of Celiac Disease -- and then, every day after a shower, it would come back, especially on my shins, and sometimes in new spots. Yay. I needed to figure out what was behind this condition and stop putting a Western medicine band-aid on it. I wanted to get to the root.
Anyway, I was feeling pretty good in Ireland, but Philadelphia was, putting it mildly, a shock to my system. I had a job interview after one month of being there in April of 2006, and I realized in horror that NONE of my "professional" clothes fit me -- only the same pair of stretchy jeans that I wore on my trip to Ireland, and they would not do. My good friend Chris took me to H&M, and, more horror! -- I couldn't fit into any pants til I reached size 11 (I have always been around size 6-8, skinny as a rail, and always eating, yet always hungry. It was so strange to suddenly be filled up like a balloon). What was wrong with me? I was almost in tears in the dressing room.
My parents came to Philly for a visit in July of that summer, and the pictures we took during that time reveal this puffiness and remind me of my horrible menstrual cramps, broken out skin and unbearable anxiety. I hope my folks didn't notice; my now husband Jim probably assuaged any tensions away for them!
I started my job and had debilitating driving anxiety, but somehow I made it to work on those days.
I saw a doctor at Temple in Philly in 2006 after we got some health insurance. She told me, "I have eczema too. If you figure out a way to get rid of it, let me know; I'd be interested." In the meantime, did I want some steroid cream? NO! That's why I am here, seeing a doctor -- to figure out what is wrong with me! Never mind, I will figure it out myself...(this is when they scribble on your chart "lifestyle changes"...ergh). She did also tell me that over-prescription of antibiotics in childhood shows up as adult-onset allergies, eczema/psoriasis and asthma...ok, this was describing me. I had ear infections and tonsillitis as a child, lots of Penicillin (that I am now allergic to) and since I became allergic to Penicillin, I have allergies, oozing skin lesions and asthma. Oh, and she also told me that I should probably have a tonsillectomy (!). I was getting pretty freaked out at this point. I needed to get to the bottom of this.
The fourth of July, 2006, we spent the day with some friends, at a gathering where I ate my own food that I brought: a berry cobbler made with butter and spelt flour. I spent the next 36 hours in horrible stomach pain on our couch. Hmmm...
Thanksgiving '06 with my side of the family at my brother's started off with me feeling cranky and head-achy and left me not feeling well at all (more Tums) digestively. I had barely eaten anything.
At Christmas '06 with Jim's folks there were apple pies to sample, and five trays of cookies later, I realized that I was unwell, and that I had been unwell since my college days existing on pizza, Danz Dozen M&M cookies and Ben & Jerry's ice cream. Sure, there were salads and other foods in there, but I was starting to get the picture. On January 1, 2007, I embarked on a new diet journey that I thought was going to last 30 days -- it has instead lasted til now as I type this and will continue for the rest of my life. I started off on the anti-candida diet (I had read it would eliminate candida and eczema (I didn't know what my rash was, having been told it was eczema by one doc and dermatitis by another), and I was willing to try it for a month, whether I had candida overgrowth or not -- I just wanted to get rid of the rash, whatever it was, through diet). It was a shock to my system because I didn't start it slowly -- I stopped eating so many things all at once (white carbs, dairy, sugar, fruit, alcohol, fermented foods). But I was still eating oatmeal (which has gluten in it) for breakfast every day. I needed some guidance, and after my trunk erupted in burning itchy detox hives for a month (apparently my liver couldn't handle getting rid of the toxins), I bit the bullet and went on recommendation to
Remede Naturopathics in Manhattan to see Dr. Nicole Egenberger. She set me on the path that I needed to be on, tweaked my diet (got rid of all gluten and dairy) and sent me home with digestive enzymes and herbs to support my liver through the detox. My hives cleared just in time for my wedding in September of 2007, nine months after starting my quest. And much to my delight, 99% of my DH on my skin was gone for the first time since 1999! The fog had lifted.
Thanks, friends and family, for sticking by me all those years I was sick, irritable and extremely unwell. I didn't want to admit that there was anything wrong with me and even if I did, I had no idea what it was, so instead, I might have taken some mood swings out on you all.
And in the last two and a half years, thanks to my husband Jim, thanks to my family, my husband's family and my good friends for understanding my dietary needs and concerns and not treating me like I have food neurosis!
If I eat one speck of gluten, I become sick, and life is un-fun. I love eating and I love life, and fun, so I don't really miss the food that I left behind. My new diet is so much more exciting, and I feel so good from it. I hope anyone reading this blog can realize that they can change their diet, especially as the grocery stores catch up with all of us gluten-free dieters out there, more and more of us every day.
Approximately one in 133 people have celiac disease. Only 3% of those people are diagnosed...the rest suffer along like I did and so many others have.
If you have these symptoms regularly, you can save yourself by going gluten-free; however, you should go to a doctor for help in diagnosing your condition BEFORE you change your diet (my mistake was to change and then seek help, but it's not like I had NEVER sought the advice of doctors -- they just couldn't help me until I figured it out for myself; unfortunately, it took being on the g-f diet for me to figure it out!
Such a conundrum).
The aim of my blog is to help you get the help and guidance you need from professionals, and to help you guide them, as sometimes doctors don't put two and two together:
(this is from Columbia's
Celiac Disease Center's site)
"Celiac disease is an inflammatory condition of the small intestine, induced by gluten. It has diverse clinical manifestations that resemble a multi-systemic disorder rather than a primary intestinal disease. Originally considered a rare disease of childhood, celiac disease is, however, now recognized as a common condition that may be diagnosed at any age.
What is dermatitis herpetiformis?
Dermatitis herpetiformis (DH) is the skin manifestation of celiac disease. All patients with DH have celiac disease. It is an intensely itchy rash that usually occurs in the same place for each patient. This may be on the hands or fingers, forearms, buttocks or scalp or anywhere on the body. The rash typically consists of very itchy, small red dots that may develop into blisters or pimples. They are intensely itchy."
From 1997-2007, I had the skin manifestation of Celiac Disease, DH, among all the other symptoms that I talked about earlier. They were all connected! Glad I started listening to my body, even if it took 15 years of seemingly random symptoms to figure it out. Listen to yours too, even if it is kinda frightening. Going gluten-free has been such a gift -- I feel like someone gave me my life back. That person was me, with a little help along the way from my very special homeopath in NYC, Dr. E. They may have charged me an arm and a leg (worth EVERY penny), but at least I have my whole body working again!
Time to make something out of these peaches on my kitchen counter...a pie, mayhaps? Back to living, eating and generally having fun...thanks for stopping by Goat City.
