Wednesday, February 18, 2009

My Migraine Story – A Gluten Free Miracle

My first visual aura occurred when I was 12. My first migraine struck about 6 months later. It was like being hit by a truck. At that time they came every few months, lasted less than a day, but they leveled me. By 16 they were more frequent and we now knew what they were. The pain was excruciating, the auras made me vomit, so when I found food trigger lists I tried to give up everything on the lists.

Unfortunately gluten didn't make it to those trigger lists 30 yrs ago. Damn shame. But chocolate and red wine were there and by my early 20s I had vowed never to touch them again (I stayed true to that vow for over 20 yrs). It wasn't worth 4, 5, 6 days in bed in the dark in agony... Thinking I would never see the other side of that pain.

I have tried everything from radical and experimental drug treatments, heavy-duty painkillers, acupuncture, biofeedback, meditation, tai chi, ice packs, caffeine, hot compresses, sleep, and a severely restricted diet, but still never a mention of gluten.
And still averaged 3-4 migraines a month. Lasting an average of 2 days.

I do remember in my late 20's while speaking with a renowned NYC Migraine Neurologist that he recommended avoiding beer since that seemed to be a huge migraine trigger with most of his patients.

In 2000 I found out I had celiac disease accidentally. Through an elimination diet in order to control my fluctuating thyroid levels, I removed gluten among other things. When I reintroduce gluten I got a migraine - Every. Single. Time. 
I ate mostly gluten free for the next 5 years and felt a little better but not great, but did not have a full understanding.

In April 2009 I made the decision to get super strict and super vigilant.  No matter what it took I was going to get all the gluten out  - I could no longer live with the constant bone pain, profound exhaustion and what had become daily headaches.

It took a lot longer than I thought to really feel a difference but the headaches started to lessen within weeks. After a few months it was clear the migraines were leaving. And they only occurred when I accidently ate gluten.
It took some time, and a huge effort, to identify and remove all the gluten traces in my diet.  ALL the traces!

This coming April I will hit my 5 year mark of super clean. I have lost track of the last time I had a migraine... After 30+ years I never really thought I would ever see this day! I never thought this could be possible!  
And the joy and gratefulness that I feel brings tears to my eyes. I do know that it is well worth the trouble to be gluten free and that I have to maintain zero tolerance.

This is not a diet to ever cheat on. You only cheat yourself.

Important note: Since going gluten free, chocolate and red wine are no longer migraine triggers... and I savor them every chance I get!


maureen said...

This is amazing! I love your blog and your Etsy store!

Heather @CeliacFamily said...

Thanks for sharing your story. I can tell people about all the different symptoms gluten can cause, but I think they're more likely to believe it after reading a personal story.

Heather said...

It is truly inspiring to hear a successful migraine story. Thank you so much for sharing! I've been gluten free for one week now, and I'm hoping to have the same results. Enjoy your new migraine-free life! :)

C said...

Wonderful Story! Although it's not a "story" - it's absolute truth. =D My history is similar in that I had a horrible recurring (but unpredictable) pain in my left abdomen that stumped the Doctors. Eliminating gluten has (almost) eliminated the pain -- less than a year after going gfree, & very pregnant, my baby has found the "spot" and kicks it sometimes, but I know that it is still healing and soon will be gone forever! Hurrah!! =D

Steph said...

Migraines/daily headaches were my main symptom of celiac disease, too. It seemed as though they tried every medicine they could find on me, and nothing worked! It took switching doctors to finally get my answer, but thankfully it didn't take me 20-30 years! I know the wonderful feeling of not remembering how long its been since a migraine! Congrats!

Eco-Now said...

Hi, great to hear your tale. I too wish gluten made the trigger list 20-30 years ago. I'm not completely off gluten (I just can't throw out all the pasta in my cupboard), but I'm sharply reduced (maybe one meal a week, instead of every meal or every second meal), with a marvelous reduction in migraines. A nutritionist-friend suggested going gluten-free; she also suggested eliminating cow's milk, as well as eating many more fruits and vegetables (e.g. I was weak on the brassica family) which I've also done. I've been gluten-reduced for about six weeks and also eat much more fruit and vegetables -- every meal,
and I've had just one migraine in the last month, down from my average of 2-3 per week. I'm very optimistic that I've turned a corner.

I should add that I also read Buchholtz's book, Heal Your Headache, a few weeks ago and he warns that the triptans are to be used only once or twice per month otherwise you'll get rebound headaches. I was taking one each time, and thus probably getting rebounds -- which made the trigger identification nearly impossible.

It would be great to hear others identified gluten as a trigger.


Unknown said...

It’s great to hear all the people who have had relieve with a gluten free diet.

I was about 16 when I start suffering from migraines and for 2 year with at least 2 migraines a week last for about 2 day (so nearly constantly). I had all the test/scans with no results. I decided to start eliminating different foods, gluten was the second thing and to my relief I didn’t get any more migraines. After 10 years of a very strict gluten free diet, the only time I get one is after accidental exposure to gluten.

I don’t know about other sufferers, but I have found the long I have been on GF diet the more severe and quicker the migraines happen. It only takes trace amounts and less the half an hour to start, these days.

So I have become great at spreading the word to friends/family and co-works all about gluten. I have also notice in the last couple of years the dramatic increase of information/labelling and restaurant with gluten free (with in Australia at least). Which makes live so much easier, I don’t get as mean blank looks when I ask if it gluten free.

Unknown said...
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Liz said...

I have had horrible migraines for over six years, on and off. For a while I thought it was birth control but went off that as well. A migraine is by far the worse thing to happen to me. My favorite vitamin guru at Whole Foods recommended Vitamin B2 and Magnesium Complex and a Gluten free diet. I am on day 1 and I was just researching Migraines and Gluten. If giving up gluten means no more migraines, then I will be giving up gluten for life.

Anonymous said...

Im not saying that it is a remedy, but my mother suffers from migraine, and since she started to do power walks every morning, she claims that the migraine is decreasing the pains, maybe it could help some of you.

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LKellsAntiques said...

Hope you are still doing well. After 45 years of migraines....and going through pretty much all you did, I finally decided on my own to live gluten free. So far so good. I am only into it 3 weeks & just ONE migraine. And that was the day after I had a crescent roll! Amazing that body aches, IBS & sinusitis have diminished too.
i don't know if my family & friends are *getting this* yet but I really feel cutting out the gluten/wheat is making a world of difference for me. Thanks!

erin rogers pickering said...

LKells - I am still doing great! as long as no gluten goes into my body I am migraine free! It is truly amazing. and as others said... just a little bit of gluten will bring one on. So many things have improved for me going gf, but leaving my migraines behind is truly the best!!!

Unknown said...

I am on week 3 ...I did get a blood test done celiacs...but i have known for a long time that if I eat too much bread I get eczema..hmmm funny huh...I get bone aches, gasey and abdominal cramping...I have anemia even though I eat tons of things with iron...Like you I had tried everything too..I am hoping this works..after 13yrs (after my daughter was born I got my first one) of extreme pain that last for 2 days that it works. Heres crossing my fingers :)