Category Archives: Diet for Autoimmune Conditions

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After Almost A Year: New Elimination Diet

I have been on my current “automimmune diet” for over 11 months (essentially, no grains, no legumes, no dairy, no eggs, no tomatoes). I actually don’t feel like it made any difference to my life except taking away the joy of food and eliciting many meltdowns when meal times came around and I had nothing to eat. I know I would have had some fun with this diet if I had the energy/ability to research recipes, shop for ingredients and cook my own dishes ~ it would have been a fun challenge to come up with tasty, healthy meals and given me a bit of a hobby ~ but, when you are incapacitated by exhaustion, dysautonomia symptoms and muscle wasting… it’s too much. It’s also too much to think about changing things up after such a long time, which is why I’m not more excited about the switch to a DIFFERENT type of elimination diet. It was a difficult learning curve for my husband to figure out what I could and couldn’t have while shopping for us. Now, he’ll have to relearn, reread all labels.

The good news is, I get to have gluten-free grains again (which means rice) and legumes except for peanuts (which means hummus and fun soups!). The bad news is, I have to eliminate pork (oh god, no bacon), beef (no steak!), cold cuts (no salami, ham, turkey slices!), soy (no fake milk for my tea, no fake mayo), caffeine (oh, I don’t need fake milk because I can’t have my black tea. I’m starting to panic), salad dressings (are you kidding? This makes me want to cry), maple syrup, honey (what do I make my granola with?), chocolate (kill me now), and any type of sugar. There are other things I have to omit like oranges and shellfish and soft drinks, but I don’t really care. Oh, and I have to continue to avoid corn, dairy, eggs, and tomatoes.

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I have a few things in the house I want to use up before embarking on this change, so, after the Rice Chex, Almond Bites, bacon, chocolate and leftover filet are gone, I will commit to the new diet. 😀

I’m out of granola, so I am going to try a new recipe. For a long time I used olive oil and a mix of maple syrup and agave nectar. Then I changed to coconut oil and local honey. Now, since I can’t have honey, but I can have brown rice syrup and stevia, I’m experimenting with a new mixture… Stay tuned.

1 hour later: I actually might prefer this recipe to my previous versions. Score! Now I just have to win the lotto so I can afford the gluten-free oats and organic stevia and brown rice syrup. 🙂

Here’s what I did:

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E.M.’s New Granola (dairy-free, refined sugar-free)

4 cups gluten-free rolled oats
1/2-1 cup raw pumpkin seeds ((or mix in half sunflower seeds, but pumpkin seeds have a lot more magnesium and tryptophan)
1 cup chopped nuts (any kind: I like ones that are low in omega 6s: pecans, cashews, hazelnuts and walnuts)
1/2 cup unsweetened coconut
1/4 cup flaxmeal
1 tbs cinnamon
5 tbs coconut oil
3 tbs brown rice syrup
2 droppers-full of liquid stevia (which is really only about 1/2-3/4 of the dropper)
2 tsps pure vanilla extract
1/2 tsp salt
dried fruit (raisins)

Preheat oven to 300 degrees. Combine dry ingredients. Heat oil, honey and vanilla over low heat until it is runny but not boiling (or microwave for 30 seconds to 1 minute). Pour over dry ingredients, mix thoroughly and spread over 2 baking trays lined with foil or parchment. Bake for about 25 minutes until golden. Let cool. Be cool. 🙂

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Allergies and all.

I wonder how much of how crappy I feel is from allergies. I wonder this all the time because I have never been able to accurately pinpoint my allergy “symptoms”. I don’t think I have any, but doctors continue to insist that I do. When I was a toddler, doctors did a whole slew of skin-prick tests and told my mother I was allergic to half the things on earth. I’ve seen the list: dogs, dust, insects, newspaper, hog hair (?!)… it goes on and on. Of course we ignored it and I don’t remember being plagued  by any allergy symptoms throughout my life (or maybe I was and it was “normal” to me, who knows?). Then, during a check-up about 5 years ago, a doctor told me I was “boggy” in my nasal cavities and said I should use Flonase to help with the symptoms, but I didn’t know anything different, so I never thought I had symptoms, so I never used the Flonase.

Then, after I fell ill with ME, I had some skin prick tests done again (searching, like so many of us do, for any answer to my problems). I was told I was allergic to dogs, cats, and dust mites. This time I took it marginally seriously and began the endless quest to kill dust mites (mattress, duvet and pillow covers, new allergy comforter, new latex pillow, wash bedding weekly in dust mite-killing detergent, HEPA air filter, UV and bright light, wet dust etc.) and started the lonely nights in bed without my pups to cuddle. Nothing about my symptoms changed. My ME/CFS symptoms, that is. Like I said, who even knows if I actually have symptoms to these supposed allergies at all? I don’t sneeze, I don’t itch ~ could my allergy symptoms simply be tiredness and a “bogginess” I never knew existed? “Yes,” the allergist said. “You will be able to breathe better and have so much more energy to play with your dogs, that you won’t mind not having them on the bed.” Never happened. Then I was tested for allergic reactions to trees, weeds, grasses, and molds.  I was allergic to all of it, especially alders and birch trees (see photos below).

birch tree reaction

birch tree reaction

alder tree reaction

alder tree reaction

Uh oh. There are birches all over our neighbourhood ~ we have one in our garden. There is an alder tree next door, looking over our yard. I looked up the current pollen count for our area: HIGH for trees, especially birch, alder and juniper.

Screenshot_2013-04-13-12-26-25What do I do with this information? I took a child dose of Zyrtec because I thought I should do something, but, as usual, I can’t really pinpoint symptoms. Yeah, my nose runs and my eyes feel … annoying… But, they don’t itch and I’m not sneezing and spluttering like those poor souls in the ads on tv. Should I be taking more antihistamines more often? Could it eventually help some of these allergic reactions I don’t even know I’m having? The doctor last year gave me Nasonex and oral steroids. They went in the drawer, unopened, of course. Maybe my allergic reaction would be more obvious if I went outside and rubbed my back up and down our birch, Baloo-style.

baloo - Edited

bare necessities

And I haven’t even started into the yes-you-have-food-allergies/no-don’t-trust-the-results arguments the doctors have when it comes to my positive blood antibody tests to tomatoes, cod and egg. I’ve always thought, if it’s not anaphylaxis, who cares? Unfortunately, with ME/CFS, it seems I HAVE TO care because reducing my body’s inflammation and stress hormones and toxins and oxidative stress and everything else that life throws at us is the only sure-fire way to feel better. Maybe Dr. Cheney was right when he joked that he’d like to be able to put patients in a coma to facilitate recovery ~ and, while he’s at it, how about we lie in a sterile bubble in a hermetically sealed room with no visitors, happy images fed into our subconscious, and nothing but anti-inflammatory glop in the feeding tube?

I’d rather curl up with my dogs (and the hogs) in the dirt and grass of the garden, under the shade of the alder, with a cold Mac & Jacks, and eat an omelet with some pico de gallo … and a cod and chips… with mayo and ketchup… fried in something other than coconut or olive oil… and live life. Allergies and all.

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New Beginnings

68 weeks sick.
45 weeks gluten-free.
40 weeks unemployed.
26 weeks on autoimmune diet + supplements.
23 weeks housebound.

This is my update.

For those of you just joining us, six months ago, my doctor put me on a anti-inflammatory diet that is supposedly good for autoimmune conditions.

These are the rules:

  • No gluten (that is, no pasta, no muffins, no pizza)
  • No grains (that is, no gluten-free bread or baked products, no rice, no popcorn, no tortillas)
  • No dairy (that is, no yogurt, no ice cream, no cheese)
  • No legumes (that is, no peanut butter, no hummus, no beans)
  • No nightshades (that is, no red pasta sauce, no mashed spuds, no hot sauce)
  • No sugar (yeah, right)
  • Only lean meats and fish

I have been horrifically strict (as in, I won’t eat soup with corn starch in it or the soy yogurts made with rice starch). However, I have allowed myself oats (must have granola for breakfast) and, although I’ll stay away from, say, foie gras, I am eating beef. A lot. Sugar, also, is difficult. I’ve cut down drastically, but I still eat dark chocolate every day and sweeten my granola with honey.

I feel no different from this diet. Besides the fact that I have no joy in food anymore. In my other life, I would have had fun researching recipes and learning to cook with new and interesting ingredients, but I don’t have the energy. I couldn’t stand in the kitchen long enough to cook a meal. So we rely on a lot of salads, stews, roast chicken with veg etc. And I eat more nuts than anyone on the planet and buckets of fruit. Ick.

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My Food Shelf

The other day my husband had a long chat with one of his old friends. Afterwards, he said, “I caught him up on how you are doing.” I scoffed: “So, you told him nothing’s changed?” He said, “Well, no… you’re worse.”

It took me back a bit… Yes, of course I am worse. I can’t do half what I could last summer ~ no dog park, no grocery shopping, no lunches with friends. I am only driving myself to places that are very close, I never have more than one phone conversation a day, I can’t walk as well as I could six months ago ~ my body has degenerated from so little movement. I’m in MUCH more pain ~ my spine, hips and muscles. The fibromyalgia-type pain only started in earnest after I left my job. I look worse. The lack of sun and fresh air have taken a toll on me. My sleep problems and emotional turmoil have aged me.

BUT, although I’m worse, I’m better, too. My sickly, shaky, evil nightly sweats are gone (except for the odd night) and that completely changes my life. I will never be able to adequately put into words what those malarial nights were like. Sleeping with the enemy. Also, my “nightly flu” has gotten better ~ the sudden increase in chills, aches, sore throat at around 6pm. There were so many evenings I would say, Okay, this time I’m really coming down with something. I still have those symptoms, but they are muted. The headaches eased up. Did you watch Mind The Abyss? After watching it, my husband said, “When the headaches came on…the man’s head held in his hands… that’s what struck me the most.” The severity of my headaches and the accompanying noise and light sensitivity altered my life more than perhaps any other symptom. The constant chills are gone… The ice in my bones, shallow breathing, tense muscles, uncontrollable shivers… This time last year, I COULD. NOT. GET. WARM. I rarely progress to the point of “bricked” anymore: where I hit a wall and I am grey, ashen, can’t move, can’t speak, weeping in a ball on the couch. My sleep is still a major concern ~ constant waking and endless adjusting from pain ~ but I get 8+ hours a night and that is a huge step forward. And, finally, my outlook is better. Don’t get me wrong, I mourn A LOT and feel alone and desperately sad (mostly when my symptoms increase), but, I laugh now and there is a semblance of acceptance. There was a point in time when I couldn’t smile. I tried, but they just weren’t there. It wasn’t depression, it was from pain. Pain sucks smiles away. And I had the knowledge that below the pain was the flu and below that was exhaustion and fear and a life I wouldn’t recognise.

I’m trying to forget about 70% of what I know about ME/CFS and follow my heart. So, yesterday, I threw the ball for the dogs and scooped the poop in the yard. Afterwards, I had a much harder time moving, but I thought, “Maybe it’s not a CRASH. Maybe it’s just because your muscles aren’t used to it. Maybe you’ll be okay. Tomorrow is a new beginning.” You never know what someone is going to say that will stick in your brain and help you through the days. My friend Z. suggested I think of new beginnings. Obviously this makes sense in the grand scheme of this new alien life. It’ll never be what it was and I have to eventually look at it as a new beginning and stop fighting it… But, I’m not quite there yet. I’m not ready to embrace this mortal coil as a new, permanent realty. However, every day can hold hope as a new beginning. Every hour. It’s kept me going through a bad week. After this bath, maybe I’ll feel better, maybe a new beginning. After this meditation, a new beginning. This moment, a new beginning.

Today I am grateful for all that is better and new hope for the future.

Launching my wish for the future, with husband and friends Z., J. and D. Thanksgiving, 2010.

Launching lanterns with our wishes for the future, with husband and friends Z., J. and D. I wrote, “I wish that we have long, healthy, happy lives.” My husband wrote, “What she said.” Thanksgiving, 2010.

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Drug-free Help For Painful Periods

Skip to the bottom for the research round-up on help for painful periods.

As I’ve mentioned before, I was on the birth control pill continuously for a few years as a way to manage such severe dysmenorrhea that my body would go into shock (so explained the ER doc) and vasovagal collapse. It didn’t happen every month by any any means, but, when it did happen, it was much worse that a mere “faint” and my OBGYN said that she would be comfortable if I remained on the pill without a period for the next 20 years.

I will say, if you can tolerate the pill, it is pure bliss in terms of skin, mood, bloating etc. Often, you don’t know how well something is working until it goes away and, for me, this was the case with the pill in certain aspects. God, why is my belly so distended when I haven’t eaten anything? Ugh, why does my skin look like I’m a 14-year old? Why can’t I stop eating today? Don’t talk to me. Don’t even LOOK at me! AHH! I’M SO HOT AND BOTHERED! I’ve had three periods since coming off the pill and I am still taken aback by these symptoms, none of which I noticed when I was on the pill.

Having said that, I am still thrilled to be pill-free. My headaches eased up after Christmas and, although I can’t 100% attribute that to coming off the pill, it is encouraging. But, the most exciting thing is that I’ve had very little cramping. This last week, the pain in my lower back was excruciating and the the increase in ME/CFS symptoms was obvious, but the cramps themselves did not even warrant a painkiller. For someone who has spent years living in fear of that time of the month ~ who has planned work and social events around the first day and made sure I was prepared for an ER visit ~ this is MIRACULOUS. I’ll take all the PMS symptoms any day over the pain.

This post so far is probably only interesting to my Mother who has heard my complaints for years and was visiting once when the pain took over, the syncope hit and the ambulance took me away, but for all the ladies out there with painful periods, here’s what I want you to know: I absolutely believe that the pain is better because of the supplements I’m taking. Last year I had researched things that could help painful periods and my doctor had also sent me some research articles, but, of course, I never really believed they could make a difference, so I never did anything with that info. Now, I know they work, although I don’t know which supplements are contributing the most. SO, here is a round-up of the research I did (from different websites and my doctor). Try some of these ideas if you suffer every month ~ it could actually eliminate pain killers!

These are the things that I take/eat/drink every day that I believe reduced my cramps:

  • Fiber supplement
  • Borage Oil
  • Fish oil
  • Vitamin D
  • Vitamin B-complex
  • Magnesium
  • Vitamin E
  • Zinc

Diet:

  • Using healthy cooking oils, such as olive oil or coconut oil.
  • Eat antioxidants, including fruits (such as blueberries, cherries and bananas) and brightly-coloured vegetables.
  • Eat almonds and dark green leafy vegetables (such as spinach and kale).
  • Eliminate trans-fatty acids found in commercially baked goods, such as cookies, crackers, cakes, fried foods, processed foods and margarine.
  • Avoid refined foods, such as white breads, pastas and sugar.
  • Avoid caffeine(ish), alcohol and tobacco.
  • Use turmeric.
  • Drink tart cherry juice, ginger tea, 6 – 8 glasses of filtered water daily.

And here are all the other tips I gathered:

  • Take daily multi-vitamin
  • Calcium citrate, anywhere from 500mg-2,000mg daily, depending on the source.
  • Magnesium, 250mg-800mg daily, depending on the source (I take 400mg)
  • Vitamin B6, 50mg-200 mg depending on the source (the week before my period, I add 100mg on top of my B-complex)
  • Vitamin B1 (thiamine)
  • vitamin B3 (also called niacin; 500 mg twice daily)
  • fish oil supplement containing omega 3, 6, and 9 fatty acids and DHA, EPA, and GLA to inhibit the production of certain prostaglandins 1,000mg-6,000mg daily, depending on the source (I take 2,000mg + 1,000mg Borage oil)
  • Black current oil, borage oil, or evening primrose oil.
  • Vitamin E 400-500 IU daily
  • Zinc
  • Vitamin D
  • Avoid Xenoestrogens and Phytoestrogens. Xenoestrogens lotions, shampoos, and laundry detergent. Phytoestrogens are plant estrogen’s that can be found in some herbs.
  • Acupuncture
  • Engage in stress reduction activities such as yoga, massage and meditation.
  • Exercise at least 30 minutes daily, 5 days a week.
  • Chaste tree or chaste berry (Vitex agnus castus) standardized extract, 20 – 40 mg daily before breakfast.
  • Cramp bark (Viburnum opulus), taken as a tea. Boil 2 tsp. dried bark in 1 cup water then simmer for 15 minutes; drink 3 times per day.
  • Black cohosh (Actaea racemosa) standardized extract, 20 – 40 mg two times a day.
  • Evening primrose oil (Oenothera biennis) standardized extract, 500 – 1000 mg daily, as a source of gamma linolenic acid (GLA). Evening primrose pills have to be taken everyday maybe 1-2 pills daily after food. During the period, double up the intake to 3-4 pills a day after food.
  • Turmeric (Curcuma longa) standardized extract, 300 mg three times a day, for inflammation.
  • Ginger root powder in capsules

Studies:

  • Diet and vitamins — A variety of dietary changes and vitamin therapies has been reported to reduce the severity of menstrual pain, but data are limited to a few small studies. Although the limited available data appear promising, we would like to see confirmatory data from additional trials before suggesting these interventions for our patients.
  • In one clinical trial, 33 women with primary dysmenorrhea and premenstrual symptoms were randomly assigned, in a crossover design, to receive a low fat-vegetarian diet for two months or a placebo dietary supplement pill [9]. While on the vegetarian diet, the women noted a statistically significant decrease in menstrual pain intensity and duration, and they had a mean weight loss of 1.8 kg.
  • A self-report study of dietary dairy intake in 127 female university students indicated that women who consumed three or four servings of dairy products per day had lower rates of dysmenorrhea than women who consumed no dairy products.
  • Two randomized trials reported that vitamin E alone (500 units per day or 200 units twice per day, beginning two days before menses and continuing through the first three days of bleeding) was more effective than placebo for relieving dysmenorrhea in adolescents randomly assigned to either therapy, although both active drug and placebo reduced pain.
  • In a systematic review including mostly single small trials, vitamin B1 (100 mg daily), vitamin B6 (200 mg daily), and fish oil supplement (1080 mg eicosapentaenoic acid, 720 mg docosahexaenoic acid, and 1.5 mg vitamin E) were each more effective for reducing pain than placebo.

I don’t have links to these studies because they were sent to me by my doctor and I’m too tired to google them. Good luck, all!

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Simple Pleasures (+ amazing gluten-free, dairy-free, seedy cracker recipe)

A few great things happened this week.

First, today, the sun came out.

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Second, birds finally found my feeder:

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Third, after all these months, my husband has given me back the joy of texture:

I was dying for some sort of crunch, some bite ~ but not like raw celery… Something heavier, something that could stand in for bread or a substantial cracker~ that could hold a piece of salami or almond butter. I have had it up to here with soft foods, fruit, raw vegetables and nuts. My husband, bless his helpful soul, has perfected a recipe.

First he tried this one (beware: if you make it, use half the salt or less), but I didn’t want to rely so heavily on oats since my doctor doesn’t even want me eating any and is only making an exception for my breakfast granola/porridge since I whined so much.

Then he tried this one, minus the garlic powder so it could go savoury or sweet. However, they were quite… pungent. That was the only way I could think to describe them. … Too earthy. I was afraid they would overpower a simple topping like jam.

Third time’s a charm! He melded the two to make his own recipe. He promises they are quick and easy if you own a food processor (I have to go to a different floor, close the door to whatever room I’m in and hold my hands over my ears ~ that’s how ridiculously loud ours is). I have them with almond butter and banana and a bit of honey in the morning or avocado and chicken and some olive tapenade for lunch… They’d even be delicious with Nutella, but I’m staying away.

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1 cup gluten-free oats
1 cup pumpkin seeds, raw and unsalted
1 cup sunflower seeds, raw and unsalted
1/4 cup sesame seeds
1/2 cup raw almonds
2 tbs coconut flour
2 tbs flax seed meal
1 1/2 tsp salt (you might want a bit more, say 2 tsp)
1/2 tsp baking soda
8 oz water
5 tbs olive oil

Preheat oven to 350 degrees. Blend all dry ingredients in food processor until mixture resembles flour. Add water and oil to “flour” and make dough. Roll out to 1/8″ thick on parchment paper on two baking trays. Score the dough into squares or rectangles or whatever and bake for 30-35 minutes.

The final simple pleasure is: I found heaven in a fatty jar. I bought this coconut oil based on the Amazon reviews. I didn’t think my husband had even seen it yet. One night, he made some chard and fish. I said, “Why is this chard so good?” I was worried that he had sauteed it in butter because it was far more flavourful than the food I’ve been eating lately. “I used that coconut oil,” he says. “Why is the fish so good? Did you use a different seasoning?” “Coconut oil, again.” The next night we (he) cooked chicken breast in it… freakin’ delicious! Now I’m going to go slather it all over my skin, too, like the reviewers on Amazon recommend. Not really. Well, maybe.

Gratitude for the little things. 🙂