Wednesday, November 18, 2009

Tales from Rural Maine: "Going Gluten-free"

It's not easy to be gluten-free; particularly if you live someplace where pizza and Italians (subs) are the only viable take-out and the nearest health food store is 45 minutes round-trip and closes before you even get out of work. Since I've only recently returned here after two decades in more...shall we say..."developed" areas, such as San Francisco, Washington, D.C., and Northampton, MA, part of the quest is not just knowing what I need and how to prepare it (big challenges on their own), but where to gather all the ingredients--and then making the time to forage while also working 40+ hours, trying to exercise, having a life, looking for health insurance, and first looking for a house and now owning one that needs work.

I spent an hour in the Shaw's in Ellsworth on Saturday, for instance, looking for non-dairy yogurt. They sell it at Hannaford so I assumed it would be at Shaw's. Truth be told, it took me nearly an hour to remember I wasn't in Hannaford. Nevertheless, even with the help of three determined staffers who insisted it was in the store, we were utterly unable to locate the soy- or coconut-based yogurts for which I quested. (I wanted them because breakfast is one of my real problem areas and since I don't eat meat, gluten, or dairy (mostly), I wanted the alterna-yogurts I'd been used to--the ones I bought in bulk at Hannaford in Brewer.)

Once I learn the ropes, I think the time it takes to acquire things will go down, but for now, there are still a great many hours spent looking for vegan cheeses and miso that could be spent doing something more useful, like painting my laundry room or watching four hours of NCIS on DVD (or actually trying to cook something).

One thing I know for sure: there is no shortage of information. Quite the contrary. If you mention to anyone--even a stranger at the grocery store who spies you loading Bob's Red Mill gluten-free-something in your cart and asks--that you are gluten-free, you will be immediately asked, "Have you read the blogs?" No matter what your answer, you will then be showered with information, suggestions, a torrent of details and stories about afflicted loved ones that is so well-meaning and yet just too much to take.

As I told my friend Mav (in the ancient tradition of mixed metaphor) when she offered to provide copious amounts of great cooking and eating tips in response to my last gluten-free blog post, but first checked to see if I could handle any more input: "I mostly feel like I'm a sturdy little thimble positioned at the mouth of the great Mississippi. Open wide and try to filter *all that information* into something you can eat. So, yes, thank you for the loving restraint when it comes to tips. I DO want them, but my little sponge of a brain is nearly soaked. I'm tired and hungry and frustrated. One meal at a time. Must go slowly. Can't cope with onslaught of advice. You have my e-mail, though: you could drop me gluten guidance there, if you want? And I'll pop in when I can and have a nibble?"

And that's just it. I love Mav for understanding that I couldn't just get battered by tips: because that's what they usually feel like. Battering. No matter how lovingly given, I'm like a plant that's been overwatered. (Hurray! Another mixed metaphor!) I do want help, but first I just really need to absorb what I already have.

I do thank Renee from Hannaford in Bucksport, though, who saw me checking out with Mike's Hard Lemonade this summer and let me know that malt means gluten. Rats! And to Mark (my sweet friend and realtor), who was the first to tell me that Hannaford in Bucksport sells Redbridge, a gluten-free beer. Problem identified. Problem solved. (Want more gluten-free beers. Here's a super site.)

Some tips are really helpful. Other tips, like, for instance, "You can Google it," are not. One is a tiny, well-aimed drop; the other is like turning the hose on me.

I do thank everyone who is trying to help. And I ask you to please poke your hand gently in my soil before you dump in any more water, lest I drown (or catch you with a thorn).

The exception is actual food delivery. Presenting me with recipes or lists of blogs means I have to do more reading, more thinking, more foraging, and potentially more failing at preparation. Then I have to clean up. But, if you want to invite me to a gluten-free, semi-vegan meal--or, say, drop a suitable hot dish off at my place--well, then, my friend, you are always welcome to feed me.

I decided to start blogging about being gluten-free with my own particular parameters (the nearly vegan, onion-allergic, mushroom-averse me) because I do think it's worthwhile and helpful for all the celiacs and gluten-challenged among us to speak up and share on this great cyber river of muddy information we like to call the Interweb. If you are looking for help or hope or company, here I am. I'm glad you found me. Just don't expect me to read your blog.

Here's the latest one-day-at-a-time menu update:

November 17, 2009
1.5 cups coffee w/2 cubes raw sugar
coconut milk yogurt (from Hannaford in Brewer!)
gluten-free granola (I can't remember now where I landed that. Rats.)
soy chocolate pudding (which I think is located either in the dairy case or the produce section at Shaw's in Ellsworth)
1 bowl homemade vegetable soup (You can find the recipe on page 251 of The Kind Diet by Alicia Silverstone.)
gluten-free french roll toasted with raw, organic honey and earth balance margerine
one glass Riesling (I hope it was gluten-free? I don't know. Can wine have gluten?)
Grilled salmon with mashed potatoes and cole slaw (restaurant)
Andes mint

November 18, 2009
1.5 cups coffee w/2 cubes raw sugar
3 gluten-free waffles with margerine and real syrup
organic applesauce
homemade veg. soup (note to self: make LESS soup next time!)
gluten-free crackers (they're made from nuts!)
vegan cheese (it's made from nuts!)

3 Junior Mints Deluxe Dark Chocolate Mints (both gluten-free and vegan, I think)

1/2 Fuji apple
soy chocolate pudding
Shahi Korma, 3/4 lunch-sized portion (Taste of India, Bangor)
papadam (it's made from lentils!)
basmati rice
Polar orange dry seltzer

That damn soup is finally gone. And I think I might be out of non-yogurt-yogurt. Damn! I should have had Peter get some today when he was in Bangor. See? This is what's hard about it. Stock up and re-supply. It's like planning for a freaking revolution.

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Monday, November 16, 2009

Gluten-free diet: Breakfast, lunch, and dinner

Eating gluten-free is a total pain in the ass, especially when you're first learning. There's a lot of frustration, mix-ups, and starvation. There's a lot of effort and aggravation--and slip-ups.

In my first month of being gluten-free, for instance, I drank non-alcoholic beer frequently, never imagining I was guzzling gluten. Slowly, I'm learning. I try not to beat myself up or worry. I'm doing the best I can. That's my motto. And, about half-way through my third month, I am actually feeling better.

Now that I have my own home, which means my own kitchen, it's much easier to work on eating gluten-free than it was when I was living in the camper. Living in rural Maine, I don't have easy access to gluten-free products or other necessary supplies, but now that I have my own space, I can bulk buy and store multiple loaves of rice-based bread or tofu steaks in my freezer, if I want to.

Because I'm also a vegan-leaning vegetarian who eats fish and "happy" chicken, but who gets sick from eggs and most dairy and is allergic to onions, I'm extra-special pinched when it comes to feeding myself. Most gluten-free cookbooks rely heavily on meat dishes; most vegetarian cookbooks rely heavily on gluten-infested breads, pastas, and fake meat products--or the dreaded hummus or mushroom-based meal. (I don't like most hummus or mushrooms and I can't stand olives, goat cheese, or sundried tomatoes. Gag me.)

With everything that's been going on in my life since the advent of the gluten-free diet decision, I haven't had the energy or time to dig up recipes that are palatable and realistic. Living where I live, it's not easy to find a daikon radish or some ghee. Or seitan? Forget about it. Plus, have I mentioned? I am a terrible cook. No. Really. I am. I burn toast. I under cook and over cook. I make good flavors go bad. It's a giant comic tragedy almost every time I try to make food.

But, I *have* to eat. And I have to eat healthy. So, in a gesture of solidarity with anyone else out there with the same dietary restrictions as me, I offer a sample menu. Here's what I ate today:

1 bowl gluten-free organic cereal with rice milk, sort of a knock-off yet pricier version of Cocoa Crispies.
Lots of water
1 glass water doused with packet of Emergen-C
1.5 cups coffee with two raw sugar cubes
1 bowl homemade vegetable soup, leftover from a surprisingly successful attempt at cooking (by me) this weekend. You can find the recipe on page 251 of The Kind Diet by Alicia Silverstone.
1 gluten-free "french roll" (really more like a biscuit) toasted (so as not to be frozen any more) with organic raw honey and smart balance margerine. (So yummy!)
one large serving organic jasmine rice, frozen (microwaved)
one gluten-free, vegetarian chili meal, frozen (microwaved) ("Helen's Kitchen Simple Health Hearty Bean Chili with Vegetables & TofuSteaks")
dollop all natural sour cream
3 Junior Mints Deluxe Dark Chocolate Mints (both gluten-free and vegan, I think)
1 sandwich made with gluten-free bread (frozen) toasted, with melted almond-based vegan cheese and vegenaise, and a leftover tofu steak (originally frozen, also Helen's Kitchen brand and totally delicious)
Two organic celery stalks
Handful of Lay's potato chips

I'm still hungry, but it was a successful day--the kind of day that makes me think I can actually do this.

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Thursday, October 02, 2008

How I am (part deux)

I had some posting difficulties (cursed Word meta tags!) with this post. Here's the second half of the post that should have gone up last week. Cheers.

...I stopped taking the pills and never went back to her.

The hormone pills have been out of my system for five months, but the weight gain continues unfettered.

I returned to my PCP a couple of weeks ago to complain (for what feels like the umpteenth time) about my fatigue and especially my weight gain. She was kind, but said it is not from water retention (as I had suspected) and that my bloodwork is normal, apart from something being off with my red corpuscles. She suggested that perhaps I was eating more than I thought now that I have a live-in boyfriend and that I should exercise more. I told her this wasn’t the problem.

She ordered more blood work, but I left so furious and discouraged that I barely slept for two days.

The day after that office visit, I was determined to do as she said—to get 30 minutes of aerobic exercise into every day. After work, I walked for 30 minutes on a level surface at a moderate pace. It was very painful. I got through it by digging deep into my athlete-self and my stoic Yankee self, to plod along, no matter how tired, no matter how painful. I longed for relief and when I finally arrived home, I went straight up to my yoga room to stretch, in the hope of relieving some of the pain. I made it through a couple of standing stretches, but then, collapsed to the floor and blacked out.

The next day I resolved that on my next visit, I would use this as a specific example, so that when I say, “I can’t exercise more,” or “I am deeply fatigued,” or “I can’t recover from exercise,” or “I have no energy,” she will understand what I mean.


I am an athlete. A debilitated, overweight athlete who can't exercise, but an athlete nonetheless.

Believe it or not, I have a relatively high threshold for pain. While training for the San Francisco marathon eight years ago, I tore something in my right knee on the tenth mile of a 12-mile training run, but I finished that run. I couldn’t walk the next day, but I finished—and had surgery instead of running the marathon.

When my ACL was torn completely off my femur last summer and my bone was bruised so severely that I was in pain 24x7 for 15 months while it healed, I refused the morphine and the prescription pain killers they offered me. I remained a good sport the day of the injury—howling in the first moments and crying—but also cracking jokes, making decisions, and staying calm.

That ability to function while under pressure and in pain is part of my athlete self and it comes in handy in a crisis, but I now believe that it has prevented friends, family, and most importantly doctors, from grasping exactly how serious the problem is--because I don't let it show.

I realize now that I must find a way to set aside my determination to slog through it, get past my belief that somehow I am just being weak, being a victim, and find the words to communicate to my PCP that something is really wrong. Even though I do my job faithfully for 40 hours every week and I am as active as I can possibly be given my limitations, we can't ignore that I’m not okay. The fact that I have the stamina to get through a 30-minute walk of pain through terrible fatigue comes not from a healthy body, but from the sick grit that makes athletes play through injuries and exhaustion.

But this is not a game—it is not 40 minutes on a court or on a soccer field. This is my life. It’s not a race or a training run. And it’s not just about today—it’s about all these days, hundreds and hundreds and hundreds of them when I have been too weak to move, when I have functioned only because I can dig down and find another gear that makes it possible to buy the groceries, do the laundry, weed the garden, sweep the floor, and file my stories.

I tell this here and now as much to myself as to anyone else. I need to get my story straight so that I can communicate with the physicians or practitioners who might have an answer for me. And I tell it to you now, so that if you are my friend, you will understand what has been going on.

This is why I couldn’t go to Anna’s wedding. It’s why I can’t go to Tom’s wedding in October. It’s why I couldn’t go to the trade show in San Francisco earlier this month. It’s why it takes me a long time to get things done sometimes and why I’ve had to cut back on my duties as a class officer, and limit the other volunteer work I care about. It’s why my office is a mess. It’s why we haven’t moved. It’s why I haven't done a good job these last five years of keeping in touch. It’s why I’ve gotten so very large.


While I was home in Maine last month, I saw my grandfather. In front of everyone, the first thing he said to me was, “You’ve put on a lot of pounds.” Then he squeezed the fat on my arms between his fingers and pinched it. Hard. “You need to exercise,” he said.

I doubt he’ll ever see this blog post. But for everyone who’s ever thought I should be in better shape or making different choices in my life, here it is: I’m tired. I’ve been very, very sick and very, very tired for a long, long time. It drove me into bankruptcy. It nearly cost me my life. And trust me when I say, I’ve worked very, very hard to get well--and I'm still not there.


These are just some of the things I've done to try to get well:

  • acupuncture
  • acupressure
  • psychiatric care
  • psychotherapy
  • several forms of yoga
  • physical therapy
  • homeopathy
  • chiropractic
  • orthotics
  • massage and other body work
  • reiki
  • ayurveda
  • the Perricone diet
  • the Eat Right for your Type diet
  • a vegan diet
  • a vegetarian diet
  • a diet incorporating meat
  • a semi-vegetarian (lacto-ovo-pesce) diet
  • meditation
  • exercise
  • craniosacral
  • the reduction and removal of caffeine
  • three different hormone treatments
  • herbal colon cleansing
  • prayer
  • psychosynthesis
  • energy work
  • Bach Flower remedies
  • tissue salts
  • vitamin and mineral supplements
  • visits to the doctor
  • lab tests
  • sonograms
  • a new bed
  • new apartments
  • new relationships
  • aromatherapy
  • new bedtime routines
  • attention to fluid intake
  • epsom salt baths

Currently, I don’t take any prescription medication, apart from things that come up as needed.

I take Tylenol, ibuprofen, or naproxen, as needed for pain and inflammation.

I take Methionine-200 (amino acid) twice daily and evening Primrose oil 1000 mg as prescribed by Dr. Lasneski, an alternative practitioner who is very expensive, but has a unique method that gets results.

I also take:

Copper (2 mg/day)

Iron (68 mg/day)

Vitamin C—1,500 mg

Niacin 35 mg

Folic Acid 825 mcg

B12 85 mcg

Calcium 1050 mg

Magnesium 460 mg

Zinc 17mg

Manganese 2.5mg

Chromium 130 mcg

Sodium 70 mg

Potassium 205 mg

Glucosamine 500 mg

Chondroitin 400 mg

Alpha Lipoic Acid 1mg

Quercetin 1mg

Vitamin A 10,000 IU

Vitamin D3 400 IU

Vitamin E 400 IU

Thiamine 25 mg

Riboflavin 25mg

B6 100mg

Biotin 60 mcg

Pantothenic acid 25 mg

Iodine 150 mcg

Selenium 70 mcg

Proprietary blend 480 mg (Bromelain, pancreatin (4x), choline biatrate, borage oil extract powder, chastree berry extract poswer, amylase, citrus biflavonoids, chamomile poder, inositol, papain, rose hips powder, rutin.

Bach Flower remedies: Rescue remedy as needed (usually daily), Clematis, Water Violet, Honeysuckle.

September commitments: This month I am removing cola from my diet to see if I receive any beneficial effect. Starting 9/13, I am beginning my day with an ayurvedic tonic that promotes weight loss: 1-2 cups hot water, 1tsp honey, squeeze of lemon juice. I drink this first thing upon waking. I also take another ayurvedic tea that includes ginger and promotes weight loss by flushing ama. I also take a weekly anusara yoga class with my teacher (one hour). I do daily meditation in the evening. And I am being gentle with myself: not pushing through fatigue, but rather going with the flow. Attempting to listen to my body and my energy force so that I can exert only that which I have to give on any given day. And I persist in getting results. And drink plenty of spring water, often with lemon. Weekly psychosynthesis. Monthly body work with my chronic pain specialist. And prayer.


At my last visit with my PCP, the metabolic panel she ran again showed mostly normal results. And when she had finished explaining them, I burst into tears. “I’m just so tired…” I said. I don’t want to be sick. I’m glad the tests say I’m okay—but I want to know what’s causing this, so I can get better!

She suggested that I should get some therapy and that for many women, childhood abuse is linked to their adult pain symptoms. “I know it’s kind of bullshitty…” she said.

It’s crazymaking to sit in that room and try to be taken seriously, to be understood. I’ve told her I wasn’t abused as I child…I’m not sure it gets through. (Every year when I come in for my annual exam, she says, "Now, you were sexually abused, right?"Sigh...No. I tell her. Again. I never had to endure that.)

And then I start to wonder, does what I went through as a kid count as abuse? Is my physical pain now the result of emotional and physical trauma? How unfair is that?

I assured my PCP that I was doing consistent and good work in the therapy department, through yoga, psychosynthesis, and body work that incorporates a psycho-spiritual release and healing element. She cares about me, but I’m still not sure she gets it. I’ve got that part covered. I need her to rule out—or locate—a cause from a medical standpoint.

She ordered more bloodwork in two months. Referred me to a rheumatologist and an endocrinologist and ordered an ultrasound. And she wants me to keep her in the loop. She also thinks a sleep study might be a good idea.

It’ll be two months before I can see the rheumatologist and four before the endocrinologist can fit me in. (Our health care system is so broken...and I have health insurance!)

In the meantime, what can I do? Continue my healing paths with yoga, psychosynthesis, and body work. Keep trying to sleep right, eat right, and exercise when I can. And I will continue my meditation practice, I think. And continue, perhaps, the ayurvedic path.

There are millions and millions of people suffering with these symptoms…we are exhausted. We are overweight. Many of us are depressed and anxious. And yet we are tasked with all this work of getting answers…because there's no clear path to wellness.

What on earth is going on?

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Sunday, September 21, 2008

How I am

Last weekend, I drove down to CT to celebrate the wedding of my friends Anna and Heidi. Anna and I have been friends for a long time and she has helped me through some difficult days. I love her to pieces--and Heidi is wonderful, too. We always have fun. They were married last month in California, but I could not go. I was too sick.

After the reception on Sunday, which was low-key, creative, family-oriented, all-girl, and lovely, Anna and I (that's us with Phoenix, above) got to spend some time alone together in the car on our way to her sister's house--her sister who recently survived an amazing bout with a rare cancer.

Anna is one of my closest friends, perhaps my closest female friend, in a lot of ways, and yet we haven't been able to see each other much or talk much this last year or so. She lives in New Jersey now, so it takes some effort to get together. And I have been too tired, and for many months after the accident, too debilitated.

In the car, she said, "How are you?" and she asked in such a gentle way, I knew she wanted a real answer.I struggle with this question. I struggle to answer anyone honestly, partly because I can’t always tell how much people want to know, partly because I feel so confused by the tangled thread of the truth that I can’t get at an answer that can be explained quickly in any linear narrative way—let alone in one word--and partly because I often feel so much better when I’m around people who care about me that I feel cheerful and then I can’t remember how bad things are. It’s like living in a dimly lit room, but then having someone light a candle and then turn to me and say, “How is the light in this room?”

It’s terrific now, thanks!

But then they leave…and it gets dark again, and they don't understand that this is happening to me because I haven’t told them. So they leave, thinking I’m fine, when really, I’m not.

There’s also a large component of stubborn adherence to my rural Maine upbringing and my mother’s fierce determination that one should never be a victim, which translated to my child self meant one should never have needs or—God forbid! Express them. One doesn’t complain, one sucks it up, no matter how extreme the condition. Add to this a high threshold for suffering and pain and an even higher expectation of what I should be able to tolerate without complaining, and I get very confused by this question, “How are you?”

But, I had made up my mind before I left for the drive down to the reception that I would be honest with Anna about my health if she asked. I didn’t know what the words would be, but I knew I would try—and so I made a few mental notes, a crib sheet for describing unwellness, so that when the light came on I wouldn’t forget about the shadows.


“How are you?” she asked.

And I told her that the fatigue was still very bad, but that other things had improved. The migraines, the vertigo, the allergies, a handful of other things have gotten much better or gone away entirely. But the fatigue, while somewhat improved, remains a big problem. And now there is this mysterious and dramatic weight gain that seems to be an unstoppable force of nature, there are the feelings of helplessness and discomfort that go along with that—the irritating inability to find clothes that fit or feel attractive, the yucky swelling in my face and hands—along with the pain.

“It’s very difficult for me to walk or stand,” I told her. And it’s not just my knee—that injury has healed mostly—it’s like when I stand up, there are lead weights on all my joints, especially my hips and sacrum. It feels like there is extra gravity pressing on me and it makes it painful and difficult to function—or to exercise, which I’m sure doesn’t help with the bizarre piling on of weight.

To my great relief, Anna said she’d been having a hard time physically, too. I want Anna to be happy and healthy always! And she looks fit and attractive as ever. I was relieved because she got it. Because she wasn’t living on the outside of the glass box I feel I am always in, with the healthy people on the outside not comprehending what it can be like to be plagued with illness, particularly the kind of illness that has no name, no successful treatment, only Byzantine corridors filled with doctor’s visits and blood work and attempts at therapies and questions that only lead to answers that create even more questions or that result in dead ends.

Anna’s health issues are her own so I won't describe them, but we were able to say, “me, too!” to one another here and there, and in this feeling there was great calm for me. There was dismay that someone I love has struggles, of course, and there was also comfort in that we could talk with one another about it—and that perhaps we could help one another find answers.

Her sister took steroids as part of her cancer treatment and experienced a weight gain that should have gone away by now, but won’t. This is very much like what happened to me. Last fall, I saw a psychiatrist about my severe PMS depression. He prescribed a tiny dose of Prozac—one quarter of the smallest does usually prescribed—and in the six weeks I was on the medication, I gained two cup sizes in my breasts, my hands swelled to the point that I could no longer wear my rings, I gained 15 pounds—and I got no relief from the PMS.

The psychiatrist said he’d never seen anything like it. “That’s impressive,” were his exact words.

I went off the Prozac, but a year later, I do not have my body back.

I saw my primary care physician (PCP) (who is actually a Physician’s Assistant) who tested my thyroid, my sugars, my iron levels, and found nothing wrong, so she never followed up. I pursued another primary care physician who suggested I take B vitamins. (I did. It didn’t help.) I tried a gynecologist thinking she’d know something about hormones. She put me on a birth control pill, which did help with the depression, but which put my libido into a coma and left me feeling generally sort of odd. I also put another almost a pound a week on my body during the 12 weeks that I took it.

After eight weeks, I went back to the gynecologist to express my concern about the weight. It was February. She said it was just “weight from the holidays” and not to worry. (What holidays? It didn't even occur to her that I don't celebrate whatever the hell eating festival she thought I did.)

[9.26.08 There's more to this post, but I'm having technical difficulties and haven't been able to get it live yet. Stay tuned.]

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