Five Years Gluten Free

Brown Rice Pasta with Bolognese Sauce

Five years ago I jumped off a cliff and went gluten-free.  I was desperate.  I was headed to Detroit for six weeks with my parents (who both smoked) and I was in a panic that my migraines would be non-stop because of the second-hand smoke.  I was reacting to all sorts of things: perfume, smoke, all kinds of foods.  I had facial pain, neck pain, migraine, bloating, gas, constipation, iron-deficiency anemia and other slight problems with vitamin absorption.  I went to a naturapath, who tested me for food allergies (IgG and IgE combined).  The test results were not even back when I happened upon an issue of Living Without Magazine with an article on the cover on how gluten could affect the brain.  Leafing through the magazine, I found an ad suggesting that iron-deficiancy anemia and tooth enamel problems could be signs of celiac and it hit me that the naturapath might be right.  She thought it likely I was at least gluten intolerant, if not celiac.  I also found out what gluten really was and I understood why my attempts to eliminate wheat and dairy from my diet to stop the gas were not effective.  I went gluten-free the next day.  That was December 22, 2006.

Four months later I was tested for celiac, but the test was negative.  I had been gluten-free for four months.  I had a stool test done and that found enough gluten antibodies to suggest that I had a sensitivity to gluten.  I avoided gluten and about 30 other food items for two years.  Gradually, I brought back all but the gluten.  Now I mostly avoid milk too, but not all dairy.  I took a test for cow's milk allergy and it said I had a moderate allergy to it.  I seem to be ok with yogurt, cheese and butter, but not milk in large quantities and not whey protein powder at all.

Well, not all my problems were related to gluten, but I have remained gluten-free with only a few cheats over the years.  Since I do not know if I have celiac, once a year, I try a little gluten to see what happens.  The first few years, I got reactions within two hours.  Then it was 3-4 hours.  Then I tried some bread in France a year ago and got no reaction.  I am not sure what my level of sensitivity is, but since my iron levels came up slightly after a few years gluten free and my osteopenia was unchanged, I decided to stick with it.  I am no longer as sensitive to perfumes and smoke, although I prefer not to be around them (and what's up with all these people who douse themselves with perfume anyway? Don't they know it isn't PC anymore? That people have real issues with it?)   I have to admit that I never lost my anger and sorrow over the loss of regular bread and pastries and the frustration that I live with on almost a daily basis living in a gluten-laden world.  I am particularly angry with Starbucks (although I still go there all the time) for not providing good quality gluten free pastries and sandwiches.  These days, it is so easy to do that I get miffed with companies that can't be bothered.  Tully's, on the other hand,  I love  for providing WOW cookies right up at the cash registers.  Very classy, Tully's.

Last month I had double jaw surgery and had to endure a liquid diet for 10 days and then only semi-liquid since.  I only started chewing a week ago and it's not much, yet.  My experience as a cook and a gluten-free cook saved me.  I made 4 or 5 pots of soups and froze individual servings of them.  Then I taught my husband to make gluten-free high-protein smoothies for me and I survived it.  Thanksgiving was hell, but Christmas is going to make up for it.  I am making my usual Thanksgiving meal for Christmas, using Udi's Gluten-free bread in my stuffing and making my gravy from scratch with potato starch instead of flour (or using Jules' Gluten Free All Purpose Flour).  I am not sure I will be able to chew the turkey much, but the rest of the meal will be fit for a king...or queen.

Here's hoping you all enjoy your holidays...gluten-free.

Karen, herself

Reactive Hypoglycemia, Dehydration and Headache

It’s 2009 and I've been gluten-free for two years now. When I started this journey, I thought that discovering my gluten intolerance and other food allergies (or intolerances) would solve my headache problem. Unfortunately, they were only a piece of the puzzle, albeit an important piece. I am convinced that the undiscovered gluten intolerance lead to malabsorption of important nutrients, including the magnesium and B2 that my neurologist wanted me to take to prevent migraine. Now that I am gluten-free, my body seems to actually use the magnesium instead of flushing it through my system. Not to mention the fact that avoiding gluten can save me from osteoporosis, cancers and a number of other serious conditions.

But my headaches persist. Not as bad as before though. In the meantime I have discovered a couple other things that seem to contribute heavily to my propensity for getting headaches. Dehydration and low blood sugar episodes. I have always known that skipping meals or not drinking enough water were sure to bring on a headache, so I didn't skip meals and I thought I was drinking enough water. Here’s the thing: it seems I need more water than the average person to keep from getting a headache. The standard 8 glasses a day are not enough, especially on days when I practice Naginata. I seem to have to rediscover this every so often. When we were on vacation in Phoenix last Fall I needed 10-12 glasses of water a day because it was so dry there. Upon reflection, I think I need that much water no matter where I am. 

The second important discovery is about low blood sugar. For years I have noticed that I seem to get episodes of lightheadedness, shakiness, sweating, etc. midmorning. I noticed it got better when I stopped drinking regular coffee. Then I started getting them again. I noticed I got them after eating a breakfast that was high in refined flours or sugars. So I stopped eating waffles for breakfast. Then I stopped putting jam on my toast. Then I switched to whole grains and that seemed to take care of it. Going gluten-free kind of threw me for awhile. Most gluten-free grains are high on the glycemic index so the episodes came back when I ate things like gluten-free waffles, or toast for breakfast. So I switched to eating gluten-free oatmeal or buckwheat cereal. Everything was great for awhile. Then I started to have sugar crashes in the evening during Naginata practice. It seemed that the more I tried to avoid carbohydrates, the worse it got. Frustrated, I mentioned it to my doctor and she suggested I talk to a nutritionist. She said I might have reactive hypoglycemia. The nutritionist took one look at my food diary and said I wasn't eating enough, especially carbohydrates! I was very surprised by this, but thought it wouldn't hurt to follow her advice for a week and see what happened. She recommended that I eat 30-45 grams of carbohydrates per meal and 15-20 grams per snack. She gave me a diet plan that had me eating a mid-morning and mid-afternoon snack (which I was already doing). She also told me to forget about the glycemic index for now and concentrate on getting enough carbs each day, especially on days when I exercised a lot. She said I wasn't giving my body enough energy to work out and that was why I was crashing. Also, the Weight Watcher points level I was following was not enough calories for me. She recommended I add 200 calories a day to my diet.

At first I was afraid that I would gain weight. I had been trying to lose weight without success before. The amazing thing is that the new plan is actually helping me to lose weight again and I am not hungry all the time. The sugar crashes are gone as well. I got a blood sugar measuring kit to test my levels and as long as I eat protein with my carbs and fat and as long as I stay away from fruit juices and highly refined things (like GF waffles...at least in the morning) I seem to stay pretty level all day. 

The bonus was that my headaches went away as well. I had an entire week headache free the first week that was on the new eating plan. I think I may be on to something. These two issues are two important pieces in the puzzle. And I no longer have to feel guilty for eating corn or rice, both of which my body seems to like. Who knew?

Karen, herself

Low blood sugar and migraine

So I have once again fiddled with my diet. Now, on top of avoiding gluten, corn sugar, almonds, ginger and all the migraine causing things like: nitrates, msg, caffeine, aspartame, etc., I am also watching my sugar intake. Why, you may ask, would I want to eliminate or drastically curtail yet another food group? My reasons are threefold and all have to do with the high-glycemic value of most non-gluten containing grains.

1: I cannot get control of my weight since going gluten-free.

2: I have noticed a correspondence between low blood sugar episodes and my migraines.

3: I seem to get sugar “crashes” during exercise which makes problems No.1 and 2 worse.

I have known since high school that skipping meals, fasting, or waiting too long between meals is a sure recipe for a headache of any kind. So, for years I have made sure I eat something every 3-4 hours. The trouble is, as I have gotten older, I have noticed that this doesn't ensure I won't have a sugar “crash” which can and has brought on a headache. I even tried making sure I ate protein with my snacks, and it didn't seem to matter. 

Ten years ago, I gave up regular coffee at breakfast (which was a HUGE sacrifice for me) and noticed that the sugar crashes stopped. Great, I thought. Then a few years ago I noticed that if I had jam on my morning toast, I would have a sugar crash a couple hours later. After I gave up gluten, I started indulging in buckwheat frozen waffles for breakfast...with fruit and maple syrup (avoiding the corn syrup, of course). One day in May of 2007 I ate that for breakfast and had one of the worst sugar crashes of my life and as luck would have it, just as the weakness, lightheadedness and shaking started, I saw a bright light from the glare of sunlight reflecting off a window and — bam! Classic migraine (with aura). My day was shot. I took a triptan drug (Amerge) but it took 2 hours to work and I felt lousy the rest of the day.

Two weeks ago I had a ham sandwich on Tapioca Bread with lettuce, tomato and a few baby carrots and I grabbed a couple of potato chips off my husband's plate (!) and an hour and a half later in the middle of teaching our Naginata class, I had the mother of all sugar crashes. I had to stop practicing and since I hadn't thought to bring food with me, my only choice was to get orange juice out of the vending machine and chug it down while I sat on the bleachers waiting for the shaking to stop. Not good.

I had to find a way to eliminate refined carbs from my diet. Not easy when you have an egg allergy that you are not sure is a real allergy or just an intolerance and a moderate cow's milk allergy. I am a lifetime member of Weight Watchers and I had been struggling trying not to eat too many carbs. I looked on the WW forum under restricted diets and noticed that all the gluten intolerant and allergy sufferers were doing the “Core Program” which is based on real food, whole grains, etc. Sounds good, but I had avoided it because of the egg and milk problems I had. Same with South Beach Diet. Most breakfasts that are low carb seem to revolve around eggs.

I decided to try doing the Core program like the first phase of South Beach for 2 weeks and see if I could handle the eggs a little. At first it worked like a dream. I lost the sugar crashes and the sugar cravings and seemed to be ok with a little egg. Then on the third or fourth day I crashed big time. Could barely get out of bed I was so fatigued. I happened to be reading a book by Dr. Diana Schwarzbein about the importance of balancing carbs, protein and fat, especially if your adrenals are burned out...which I suspect mine are. Dr. Schwarzbein says that if you eliminate carbs altogether in that situation, you burn out your adrenals even more and will end up even more fatigued. So, I added some whole grains back in and things are going better now. I am not really missing the refined carbs now and they will taste even better when they are a rare treat instead of an everyday craving. Headaches have been fewer and really only resurfaced after I weakened and ate some chocolate the other day (!). Breakfasts are the most challenging, but I am rediscovering tofu as an egg substitute. Check out my lamb sausage tofu scramble. It's delicious and not too time consuming if you cut up the tofu ahead of time and refrigerate.

Lamb Sausage and Tofu Scramble

2 oz. loose lamb sausage (nitrite-free)

2 oz. firm tofu cut into small cubes

olive oil

1 green onion

1 T fresh mint, minced

1/4 cup or so cucumber, chopped

1/4 cup or so yellow squash, chopped

1 mushroom, chopped

1/4 cup tomato, chopped

salt and pepper to taste

pour a little olive oil in a non-stick skillet on medium heat

add lamb sausage and cook, breaking up with a wooden spoon

add tofu and cook until heated through

add squash, cucumber, mushroom and tomato and cook a minute or two

season with salt and pepper

add green onion and mint and cook another minute

makes one serving (5-6 WW points if you’re counting, depending on how much oil you use)

(note: lamb is pretty greasy, you won't need much oil, just enough for flavor)

Enjoy! You won't be hungry until lunch!

Karen, herself

Aneurysm — A real headache

I started this blog to talk about my quest to eat well and stave off migraine, but about a month ago I had a life experience that made all my headaches seem trivial. The night of March 4th my husband, who has lived most of his life headache-free, suffered a brain aneurysm and nearly died. Most people who experience this do not survive, and if they do, suffer some level of disability. The survival statistics are truly frightening. About half do not make it to the hospital and another 25% do not survive the next month.

My husband Kurt was one of the lucky ones. I was with him when it happened and I was able to get help for him quickly. Everything worked the way it is supposed to work. I called 911, the operator talked me through CPR until the paramedics arrived and they arrived quickly and did all the right things. We are also fortunate to live less than 20 miles from the best trauma center on the West Coast — Harborview Medical Center in Seattle, where they have doctors that specialize in treating aneurysms. 

Kurt was transported there less than an hour after arriving at the emergency room and spent the next 10 days in intensive care. They were able to drain off the damaged cerebral spinal fluid and repair the aneurysm and Kurt is now home recovering. Through the miracle of modern medicine and his lifetime of healthy living and just plain luck he is pretty much the same as he was before the incident—just sporting a new haircut as they had to shave a good portion of his head while in the hospital. He sometimes has trouble remembering the right word for something, but at our age, we all have word-finding troubles and his are no more noticeable than that.

We are so grateful to all the people who took part in saving Kurt and to all our friends and family who were there for us. In the first few seconds after it happened, I thought I had lost my husband and I spent hours wondering if he would wake up, hoping  he would recognize me and then days wondering if our lives would ever be the same. Now it is starting to seem like a bad dream and our lives are slowing going back to what they had been.

So forgive me for not posting on this site or any other for the last month, but I have been just a little bit busy and preoccupied. I did learn that it is possible to find gluten-free food in the hospital cafeteria, which really saved me as I spent a good portion of the first two weeks there. My own headaches flared up at first due to the lack of sleep that first night, I expect. Other than that, things have not been too bad for me. It does help to see someone else in far more trouble than you to put things in perspective. For many reasons, I feel very lucky.

herself, against the grain

Anyone who has ever had migraine knows the feeling of being on their own in the world. The things we do to avoid getting them pit us against mainstream life. We give up or limit caffeine, chocolate, red wine, msg, nitrites and aspartame. We try to avoid stress, get a good night's sleep, moderate exercise and regular meals to control blood sugar. We also know the latest in migraine pain relief. We might try acupuncture, massage and other non-traditional treatment. And if you visit a site dedicated to dealing with and preventing migraine, you will undoubtably see many if not all of these things there. But what you probably won't see on those sites is much about the correspondance between migraine and the gluten intolerant. And while suspected links between migraine and food allergies may be raised, they are frequently dismissed. You would have to search alternative medicine sites to find those types of discussions.

This is an attempt to bridge the gap between migraine blogs and those dealing with gluten intolerance and food allergy. I am not a medical professional. I am a migraineur who until four years ago tried to deal with my migraine with over the counter drugs or with nothing at all. I suspected that alcohol made my symptoms worse, as did the weather, but I would have sworn I had no food triggers. Last year, in desperation, I went to an alternative clinic to have all my hormone levels checked to see if that was the cause. What I learned instead was that I was gluten intolerant and allergic (delayed IgG allergies) to over 20 different foods, many of them my favorites that I consumed on a regular basis. The gluten intolerance had probably been going on for some time as I had vitamin and mineral deficiencies due to malabsorbtion. The revelations rocked my world (not in a good way) and I have found it difficult to find sites that really speak to me.

I hope to chronicle my experiences over the last year learning to live without gluten, egg, dairy, brown rice, corn sugar and many other foods, additives and preservatives. I have learned the hard way to deal with eating out successfully, travel, cooking and baking in a whole new world...and oh,yes, maintaining my weight when all the good whole grains were no longer available to me. I am hoping that in doing this, I will find some company and maybe help some other lost souls with tips for making a food allergy restaurant card, adapting favorite recipes and trying new things.

The good news is that one year later, while not headache free by any means, I am much better. I owe most of this to my new gluten free life and I think, a bit, from the encouragment and positive outlook that most of you in the gluten free world have to offer. I'd like to start 2008 giving some of that back.

Happy New Year!