Chronic Migraine, Coping, Triggers

A Gluten Connection?

Still brain dead in a migraine spell, but I couldn’t wait to tell you that I’m almost positive there’s a food connection with my migraines. . . and I’m pretty sure gluten is the culprit. Only after cheating on my migraine diet with baked goods over Thanksgiving weekend did I come to this conclusion. The food was delicious, but not worth the price of the current migraine spell.

As you can tell by the equivocal opening sentence, I’m not completely convinced gluten is the problem. But I’m close enough to believing it that I’m impatiently waiting for my body to recover from my cheating and thinking about the glorious possibilities that await if I’ve truly found a problem. I’m trying to keep from getting too excited — having a migraine helps with that.

So I’m spending the day reading, drafting a few of the many posts that have been floating around in my mind since the AHS symposium, and resting. Mostly resting. I hope you had a wonderful Thanksgiving and that you are doing as well as possible!

Community, Treatment

Migraine and Gluten Sensitivity

In a desperate attempt to treat her migraines, herself (gluten-free) blogger Karen Yesowich Schmucker discovered she was sensitive to gluten. Adopting a gluten-free diet has reduced the frequency and severity of her migraines. Karen explains the connection in this guest post.

While there is data to suggest that a certain percentage of migraineurs also suffer from celiac disease or some form of gluten sensitivity, few neurologists routinely test their patients for it. One study done in Italy in 2003 suggested that 4% of migraineurs also had celiac. You may think this is a small number and that may explain neurologists’ reluctance to test for it. But consider this: few people in the general population are ever tested for gluten sensitivity or celiac disease. Until recently, doctors considered it to be extremely rare, but now there is reason to believe that the number of people in this country who have some form of intolerance to gluten is 1 in 133, or about 3 million. Over 90% of these people do not know of their gluten sensitivity. So how safe can we as patients feel about the small number of migraineurs who also have Celiac? We don’t really know how many of us are out there. Should we care? Would a gluten-free diet really help us? And what the heck is gluten anyway?

Gluten is a protein found in wheat, rye and barley. It is what makes dough from these grains sticky and hold together when baked. Gluten is also used in many other food products from soups and salad dressings to soy sauce and beer. Gluten intolerance is an autoimmune disease which, left untreated, will eventually destroy the villi in the small intestine, leading to malabsorption of minerals and nutrients. There are serious implications from malabsorption including osteoporosis, certain cancers and a host of other disorders. Go to the National Foundation for Celiac Awareness to find out more.

Today the only treatment for gluten sensitivity is the complete and lifelong avoidance of gluten. Does maintaining a gluten-free diet help migraine? There is some evidence to suggest that some migraineurs are helped by it. Some report the total disappearance of migraine while others have fewer and less severe attacks. I fall into the latter category. I found out (by accident) a little over a year ago that I am gluten intolerant and I have followed a gluten-free diet since December 2006. Do I still get migraines? Yes, but not as many and not as severe. I have not had a classic migraine (with aura) in about a year. Does my neurologist think that gluten caused my migraines? No, but it could have created a situation where migraine was more likely to occur, especially since I had evidence of malabsorption and was deficient in several important minerals like magnesium, even though I was supplementing at 400 mg per day!

As a direct result of my experience, my neurologist now tests his patients who show gastrointestinal symptoms for gluten sensitivity. But he doesn¹t test all his patients. He (incorrectly, according to experts on celiac) believes that one must have these types of symptoms before testing makes sense. However, with celiac, symptoms often do not appear until the disease has progressed and a patient is not absorbing nutrients. Here are some of the symptoms noted in celiac literature: fatigue, anemia, migraine, eczema, psoriasis, mineral deficiencies, as well as gastrointestinal complaints such as bloating, gas, constipation and/or diarrhea. So the bottom line is: finding out you have gluten intolerance may or may not help your migraine, but the health benefits of discovery and treatment by themselves are compelling. I went gluten-free hoping to rid myself of debilitating headaches, but knowing what I know now makes me glad I did it regardless of the effect on my headaches.

If you do decide to get tested, make sure you do NOT start a gluten-free diet until AFTER the test results come in and your doctor tells you to start it. The test will come back negative if you are not actively eating gluten. If you go on a gluten-free diet please give it a good chance to succeed. I found some of my symptoms disappeared within three days, but the migraine-easing part of it took longer. Months longer. So be patient and don’t cheat. It can take up to 18 months for your system to heal. If you want to see how to navigate life gluten-free, visit my blog. You can find recipes there as well as tips for managing eating out, traveling and otherwise living a normal life gluten and headache-free.

References and Resources:

  • Association between migraine and celiac disease: results from a preliminary case-control and therapeutic study. Gabrielli, M.; Cremonini, F.; Fiore, G.; Addolorato, G.; Padalino, C.; Candelli, M.; de Leo, M.E.; Santarelli, L.; Giacovazzo, M.; Gasbarrini, A.; Pola, P. The American Journal of Gastroenterology, Volume 98, Number 3, March 2003 , pp. 625-629(5)
  • Migraine and Coeliac Disease. Headache: The Journal of Head and Face Pain 38 (8). J. Serratrice MD, P. Disdier MD, C. de Roux MD, C. Christides MD, P.J. Weiller MD.  (1998), 627­628 doi:10.1046/j.1526-4610.1998.3808627.x
  • Celiac Disease: A Hidden Epidemic. Peter H. Green, Rory Jones. HarperCollins Publishers. 2006. ISBN-13: 9780060766931 (Peter H. Green, M.D., director of the Celiac Disease Center at Columbia University. He confirmed that migraines can be a symptom of celiac disease.)
  • Living Gluten Free for Dummies. Dana Korn. Wiley Publishing, Inc. Hoboken N.J., 2006
  • All in Your Head. Untreated gluten sensitivity can affect your gut, your skin and your brain. By Alicia B. Woodward. Living Without magazine. Winter 2007. Pp. 11-16; 27.
  • Celiac Disease Foundation
  • Gluten Intolerance Group

Karen Yesowich Schmucker is a freelance graphic designer and translator who lives with her husband in Bellevue, WA. Karen also teaches Naginata (a Japanese martial art) near Seattle. A migraineur since age 12, she has been gluten-free since December 2006. Contact her at karen[at]kysdesigns[dot]com.

Community, Coping, Diet, Treatment, Triggers

Wheat/Gluten- and Dairy-Free Diet for Migraine & Headache

Food is an overrated headache trigger, but since I’ve identified that nuts and legumes are problematic for me, I’ve approached food triggers with a more open mind.

Completely fed up with nearly nine months of nightly migraines, I decided to subsist on boiled chicken, romaine lettuce and rice for three days, then add other foods back in slowly. In usual fashion, Hart helped me see how absurd that plan was. Cutting out wheat and dairy seemed like a sufficient start. My diet is heavy in both, so this was reasonable.

I’m now on my third wheat-free round. Whether it has been useful for my migraine and chronic daily headache is up for debate. (I am, however, pretty convinced that there is a correlation between giving up gluten and eliminating my omnipresent canker sores.) The story so far:

Wheat/Gluten- and Dairy-Free Attempt #1
This lasted a week. The first five days, I felt awful. Then I figured out that almond butter was triggering some of that agony. Interestingly, I remember a low migraine phase with lots of energy. Looking at my post on almond butter, things weren’t as rosy as I thought.

I reintroduced wheat and dairy with a slice o’ triggers from Pizza Hut. Duh, of course I got a migraine. I had the pizza on a Friday and the headaches didn’t kick back in until the following Tuesday. This could mean that I can have small amounts of wheat over two or three days without triggering a migraine.

Saturday we went for cupcakes with friends (no migraine after that), but I just couldn’t stop eating wheat after that.

Wheat/Gluten and Dairy-Free Attempt #2
I re-eliminated wheat and dairy on May 25. I felt awesome — low pain, lots of energy and a clear mind — until June 11. I have no record of how I felt those days, so I can’t be sure how accurate my memory is. I did accomplish a lot and Hart noticed a substantial improvement.

Then my brain returned to its usual self. Even though I still wasn’t eating wheat or dairy, I had three weeks of as much pain, fatigue, nausea and foggy-headedness as before. I did really push myself during the good two weeks.

On June 29, I discovered that 10 pounds melted off me in four weeks (not a desired effect). I looked haggard and was exhausted. Having just read the virtues of milk, I bought pasteurized, unhomogenized whole milk from pastured cows that afternoon.

By July 1, I felt great. Wheat slipped back in on July 3. Still, I felt good until the until the 8th, when the migraines came back with a vengeance.

Gluten-Free Attempt #3
Still eating dairy, I cut wheat again on July 9. I’ve felt pretty awful for the last week. Whether this is related to heat, diet or something else is up for debate. After a doozy of a migraine on Sunday, my pain has been low yesterday and today, but the exhaustion and sluggish mind are full force.

Who knows what this all means. Some people will read this post and think that wheat is a clear culprit. Others will think just the opposite. It is fuzzy enough for me to keep trying. I do wonder about what Laurie brings up:

What if part of the reason people who do not have celiac disease but feel better when they go GF has less to do with their physiological sensitivity to gluten and more to do with the fact that the GF diet is, on the whole, a lot healthier?

My diet is still pretty healthy when I have eaten wheat and dairy again. I haven’t gone overboard when I have eaten wheat. A cookie here, a slice of french bread there. Besides, having found some awesome cornflakes and corn chips, I can eat plenty of junk even without gluten.

What’s next for me? I’m back to being gluten-free but still enjoying dairy. I’m toying with an anti-inflammation diet (that’s another post. . .), which doesn’t include wheat, so I’ll keep going without it. I’m officially in the wait-and-see stage.

Gluten and dairy are oft vilified. What are your thoughts? Have you tried going without one or both?

I used wheat and gluten interchangeably even though they aren’t the same thing. I avoid non-wheat gluten sources without a problem. I haven’t been able to resist the seductive call of wheat. I do come from a family of wheat farmers.

Diet, Doctors, Meds & Supplements, Treatment, Triggers

Update on the Migraine & Chronic Daily Headache Treatments I’ve Tried Since February

I’ve tried a variety of treatments since February, but haven’t kept you updated. It’s like I don’t want to talk about them at the outset because I might jinx it. After a treatment has failed, I push it aside so I don’t have to think about it. Here’s the surprisingly long update.

Shedding tears in the naturopath’s office the first time was enough to keep me from seeing her again. Against my hard fast rule that I not take anything I can’t identify (which I also broke with the acupuncturist), I took the homeopathic remedy, vitamin D and magnesium supplements she suggested. They did nothing.

I gave the chiropractor two months, which is the maximum time she told me it would take to see results. I went five times one week, four the next, three for a couple weeks and so on. Turns out I hold my adjustments very well. Unfortunately my migraines didn’t changed and having my neck adjusted freaked me out. Once she stopped asking about my headaches and focused on pain in my lower back, I knew she had given up.

By treating me as a challenge for which she was sure she had the solution, the chiropractor made the classic mistake of nearly every “alternative” care provider and many physicians I have seen. That always makes me laugh, but leaves me wary that the overconfident provider is setting him or herself up for a fall. Which is what always happens.

Sleep Specialist
Many people with treatment-resistant headache disorders become much more treatable once they have sleep problems resolved. Although my sleep seemed fine, I saw a sleep specialist with a background in neurology. Sadly, my sleep is practically perfect. I sleep eight hours, wake up rested, nap when I need to without having it interfere with that night’s sleep.

New Headache Specialist
A Seattle-based headache specialist that I’d never seen before was recommended highly, so I saw her in May. We hit it off immediately. Too bad we focused on my blog, headache patients in general and clinical trials. I left enrolled in a clinical trial for Lyrica and with a potential advertiser for The Daily Headache, but without having discussed any of my questions or other treatment options.

I already had Monday’s appointment with my first Seattle headache specialist, so I didn’t make another appointment with specialist #2. Seeing specialist #1 again reminded me that she’s the right doctor for me.

Lyrica Trial
In the spirit of giving back — and possibly finding an effective drug — I enrolled in a clinical trial of Lyrica. Currently I’m keeping a headache diary and am to start the meds (Lyrica or a placebo) at the end of the month. I’m pretty sure I’ll drop out before then.

Six months, the length of the study, is a long time to wait before I can get a prescription and test Lyrica out on my own. I have other treatments in the works and don’t want to confound the equation. Besides my impatience makes waiting more than a year to find out if I took Lyrica or the placebo agonizing. I can’t decide.

Wheat-Free, Dairy-Free Diet
This one needs it’s own post, which I’m working on. In sum, it looked like there could be a connection, then it looked clear there wasn’t. Now I have no clue.

That’s the update. Disappointing, huh? I have another round of ideas percolating. They seem like good ones this time, not acts of desperation. We’ll see.