There’s a battle raging, and gluten and migraine are a part of it. The question at the heart of the battle: Is gluten harming people – people that don’t have celiac disease (coeliac disease)?
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Some just aren’t convinced by the evidence. But a growing number are convinced, and some of those people are migraineurs.
Many of us as migraine patients have been asked if we’ve tried giving up gluten – found in wheat, rye and barley. Some of us have tried it. And the surprising thing is – for some people, it worked.
But why? These weren’t people with wheat allergies, or with celiac disease. Celiac disease is an autoimmune disorder, and the most common treatment is the gluten-free diet.
But a growing number are arguing that there is a wider problem – gluten syndrome – or gluten insensitivity or intolerance – that the common tests aren’t recognizing. Some of the common questions and arguments can be found at GlutenSensitivity.net if you’re interested in going into more detail.
One of the advocates of this point of view is Dr Rodney Ford, a paediatrician who has focused his career on food allergies and intolerance.
Last month Dr. Ford wrote this helpful summary:
… The crucial point, however, is that gluten-sensitivity can also be associated with neurological symptoms in patients who do not have any mucosal gut damage (that is, without celiac disease). Gluten can cause neurological harm through a combination of cross reacting antibodies, immune complex disease and direct toxicity. These nervous system affects include: dysregulation of the autonomic nervous system, cerebella ataxia, hypotonia, developmental delay, learning disorders, depression, migraine, and headache …
In other words, you might have a problem with gluten which is not technically celiac disease.
Have you tried a gluten free diet? For how long? Did it help with your headache or migraine symptoms?
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Excellent timing…I spoke with @GFillustrator on Twitter recently and she said her migraines stopped when she cut gluten. So last Friday I went to the doc to get a blood test for Celiac disease, and I haven’t received my results, but I’ve decided to try a gluten-free diet either way. For those who have tried it, how long did it take before your headaches/migraines improved?
Trying a gluten-free diet has been suggested to me by a number of people. I’ve been tested for celiac disease and do not have it. Maybe this article is just the impetus I needed to try a gluten-free lifestyle. I’m most interested in hearing from other migraineurs who have tried this. Any tips or suggestions? Wheat seems to be in everything! — Thanks for posting, James.
And why do you suppose that my headache specialist neuro has not discussed this with me?
The reason your neuro doc doesn’t discuss diet and migraine is because most neuro docs take the traditional allopathic or “Western” approach to medicine. They prescribe pills. Whatever’s “hot” in the market or that their friend from Merck is currently pushing. Sadly, most don’t have time to keep up with the available research.
It took me three tries, but I finally found a very competent neuro doc who practices traditional medicine, but who, as a migraineur himself, recognizes the efficacy of non-traditional or alternative methods for prevention and treatment. He believes that acupuncture and massage help migraineurs. He knowns that some herbs and supplements work well in migraine prevention and he’s not afraid to prescribe them. (Yes, get them as prescriptions. Many supplements can be filled at your pharmacy and are covered by your insurance. CoQ10 is pricey — $200/month at the health food stores or online.)
You can and should “shop” around for your doctors — it literally saved my life. My former neuro had me on a toxic combination of medications (antidepressants with triptans) that caused Serotonin Syndrome (aka serotonin toxicity or poisoning). I got a referral from my GP (who I trust) for a new neuro when I was diagnosed with this. My new neuro doc works at a teaching facility (DHMC at Dartmouth College). They do cutting-edge research studies. This allows him to be more open-minded when it comes to exploring treatment options and keeps him up-to-date on research. Because they are part of a research facility, they have a higher level of knowledge than I could find locally or even in my entire state. I drive 4 hours round trip to see him. He is always on time and comes out to personally greet me. There’s even a grand piano player in the main entrance hall of the hospital. I waited 5 months to get my first appointment, and thought I had died and gone to heaven.
He weaned me off of the meds (except for triptans and Zofran for vomiting. yeah, I get the really bad kind of migraines.) I have been seeing good results with Butterbur/Petadolex (150 mg/day), CoQ10 (200 mg/day), Magnesium Citrate 600 mg/day, Vitamin D (cuz everybody needs it up North) 1,000 mg/day, Cal/Mag 1,000 mg/day, Omega-3 1,000 mg/day, aspirin 81 mg/day (we’re at a 400% higher risk for stroke or heart attack because of migraine). This combination has got me up out of my bed for the first time in many years.
Anyway, best advice on neuro docs is to get a word-of-mouth referral (from another migraineur or another trusted health-care practitioner)and be willing to drive a bit. If that’s not possible, make appointments with several different doctors (you may have to pay out-of-pocket for this). Go in and meet each one with a list of questions you have prepare ahead of time. Bring your migraine diary with you if you have one (if you don’t ask the doctor for one — another good test — does she have a migraine diary form?). Keeping a migraine diary will save loads of time with your neuro doc. In once glace she can see what’s going on.
And, really just interview them as much as they do you. Find out about their treatment approach and if they, too, have migraine. You’ll get a sense for how the neuro docs communicate with you and whether or not you can work with them. Be sure to meet their team at the same time.
Remember, you are in charge of your health not any doctor you might hire. Be prepared to do your own research too — like you are doing right now by reading this blog.
Good job!
I went gluten free August 2008 and shortly after that tested neg for Celiac. I’ll admit I was desperate – I can’t tolerate ANY of the meds that were prescribed to me, especially triptans. I fall often into the category of “…if these side effects persist, contact your health care provider and discontinue use of this medication…”
We documented the reduction of migraine to 50% and it also cut down on some digestive stuff too.
It’s not easy to do but it can be done – many restaurants will provide a GF menu and there is a growing understanding on the part of wait staff. Saying that, you still need to be vigilant. For example, did you know that Twizzlers have wheat flour in them? After a GF Thanksgiving dinner they were my downfall!!!
It’s a little tricky to see if gluten is a problem. My symptoms are not immediate, they take several hours to start – sometimes as many as 12. By then, I’ve totally forgotten what I’ve eaten.
Here’s a great blog by an author who’s book helped a ton….shauna james ahern’s gluten free girl – http://glutenfreegirl.blogspot.com/ she’s celiac but helps to get a handle on gluten
The symptoms can take awhile to appear but the effects seem to linger for a long time too. I feel as if all my nutrient absorbing gears get gummed up for at least a week. I can swallow tons of supplements, raw food, etc. and I don’t feel like I’m getting any nutrients.
Anyone else have that feeling?
I have head migraines for more than 10 years. I was recently diagnosed with Celiac. I have been gluten free for 6 months now- just had the antibody test which showed a tremendous improvement. Unfortunately, I continue to have migraines. I have not seen any change in the last 6 months.
I finally got off propranolol after about 3 years of eating gluten free and was 80% migraine free.. I also found that I have a hormone component to my migraines as well. With some bio identical hormones and the gf diet I am 99% migraine free.
I’ve suffered from Migraines with Aura for years. Prior to being diagnosed with Celiac Disease, I was getting anywhere from 0-5 migraines a month. After going gluten free, I get 3 or 4 a year.
It took about nine months gluten-free for me to see significant improvement, but now I only get a migraine if I eat chocolate! Stick it out… your health is worth it!
I am a gluten free migraineur and chef and I can’t honesly say that I had a reduction in headache frequency when I started eaing clean. My celiac diagnosis was 21/2 years ago and I have been as strict as knowingly possible with the help of the internet and new consumer friendly labelling. The transition seems hard, but really isn’t if you don’t think about what you cannot eat and do think about all the healthy natural foods you can incorporate into your diet.
I was hoping for major headache relief, especially when I was casein free for a year, but sadly no relationship to my chemistry.
Thanks for all these fantastic comments! I had a feeling this was going to be a hot topic. I know we’re going to need to talk about it again.
It of course should come as no surprise that the gluten-free diet helps some migraineurs and not others. The interesting thing is that it does help so many.
Thanks so much for sharing your experiences – we need more comments on this, and we will try to revisit this topic again in the future.
The following links may be helpful. The first is a list of all of the research published to date on the subject. The second is from the blog of a prominent neurologist.
http://jccglutenfree.googlepages.com/migraineheadache
http://www.renegadeneurologist.com/category/ailments/migraines-
headaches/
I’ve been GF for nine months, six of those very strictly (I had to learn to speak up in restaurants and at friendly acquaintance’s houses). My migraines have decreased in frequency and severity (the biggest change).
I would love to get the name of the neurologist at Dartmouth Hitchcock Medical Center that “The Daily Herb” sees and praises. I live about two hours away from that medical center and know the area well (it’s my childhood hometown and my family still lives there). I’d like to go see that neurologist — he sounds wonderful!
As for tips on going GF, I’ve discovered that there are *lots* of different kinds of rice in stores — more than just white and brown — and they are all fun to explore. Also, Trader Joe’s makes an excellent rice pasta that holds its shape and isn’t as chewy as some other GF pastas (I like the spirals and penne the best).
Someone else mentioned Shauna James Ahern’s website, glutenfreegirl.com. I found this website to be very helpful starting out because Shauna loves great-tasting food and cooking, and appreciates that food is about more than sustenance — it’s also about communal joy with friends and family.
Alison — Maybe you live near me? In Vermont? Either way a 2-hour drive to go see Dr. Morris Levin at Dartmouth Hitchcock Medical Center is well worth the drive. You may need to have your GP give you a referral (mine did, so I don’t know if Dr. Levin takes new clients without a referral, so best to maybe get one.) I took 5 months before I could get in to see him, so don’t be discourage. Do start or keep your Migraine Diary going. It will help in your discussions with him (or any other doc). Dr. Levin can be reached at the Neurology Dept. phone # at 603.650.7916. Hope this helps. — Gyan
Thanks, Gyan!! I have an appointment with my GP on Tuesday and will ask her for a referral. The one sticky point is whether my health insurance company will pay for the visit. I have BCBS of Massachusetts, and I’ve already run into their refusal to pay for a physical therapist in CT who had specialized expertise. I think I’ll make the appointment with Dr. Levin anyway since it will likely take several months to see him, and then research the payment part of it during the wait.
I live in western Massachusetts, btw, about two hours South of Hanover/Lebanon. Thanks, again!!
You are so very welcome, Alison. Dr. Levin is the THIRD neuro doc I’ve been to. I know how hard it is to find a neuro doc who is up-to-date on the latest treatments, open to alternative treatments, nonjudgmental, suffers migraines too, and spends as much time with the patient as is needed (no rushing).
Your plan sounds good. I can relate to the trouble of working around medical insurance rules. Ug! But the 5-month wait to get an appt will give you ample time to start a letter-writing campaign. When you go into your GP’s office for the referral, you might want to print out any info about DHMC’s Neurology Dept./Dr. Levin. Impress your GP and he’ll help advocate with your insurance carrier.
Good luck!
P.S. Are you in Athol? My son lives in Bolton.
James, so sorry we are waaaaay off-topic here. Promise to be more well-behaved in the future.
Alison, if you have any questions you can twitter me @TheDailyHerb.
Going gluten-free hasn’t made a difference in my migraines, but has made a HUGE difference for my younger brother. When he is actively gluten-free, he gets 0 migraines. We both have celiac disease.
The thing that has made the biggest difference for me, in 40 years of trying to treat migraine, is the 50 mg daily nortriptyline. It cut my migraine frequency down to about a quarter of what I had before. Triptans work for me, with varying success…so far Maxalt + Compro has the highest success rate – it kills about 75% of the migraines I do get, and of course, the Compro usually helps prevent vomiting as well.
Most people don’t consider hidden sources of gluten when they “go gluten free”, so they think it doesn’t work. MOST rice is sprayed with wheat starch, and wheat starch is a common packaging ingredient-its also used as an anti caking agent in salt, and is the glue on envelopes, stamps, and other things you might “lick” to moisten. People tend to give up, thinking that because they avoided the obvious forms of gluten, that the diet doesn’t work-it DOES work, IF you eliminate all sources of it. Wheat starch is also a common binding ingredient in supplements, vitamins, and medications. so even some of the medications being prescribed for migraines can cause a bounceback type reaction. Do your homework, and learn about hidden sources in shampoos, toothpaste, cleansers, etc. I have been totally migraine free for over 8 years, where as before going gluten free, I suffered weekly with them. Its WORTH the effort. The only migraines I have had in 8 years has been after accidental exposure to gluten. I did not go gluten free for migrains-I was dx with celiac, but the migraines were the first symptom to totally resolve-MANY other chronic ailments totally resolved as well, as long as I am vigilant about what I put in, on, or around my body.
GardenGirl — Very good advice! Do you have any suggestions on how to research gluten in topical products such as shampoos, cleansers, sunscreens etc.? I’m having less luck doing this research than research on food. Thanks in advance!
Thanks for all your ideas and tips! This is certainly a topic we’re going to have to come back to in depth. Keep the comments coming, and that will give us a better idea what direction to take. There’s no doubt we’re on to something big.
This is awesome information. I’m so glad I stumbled upon it. I’ve had this migraine for a month and a half. My neuro and I are trying to find solution. I didn’t realize food had such an impact or rather I thought I knew what my food triggers were. I think they are way beyond what I ever imagined.
I have suffered from sporadic migraines for 20 years. I have been gluten free for 3 months now. The impetus to go gluten free was stomach related-always feeling bloated and uncomfortable. I noticed a direct correlation between my stomach trouble and gluten (I was really hoping to see no connection because who doesn’t love bread!). Surprisingly, after a month, it occurred to me that I hadn’t had a migraine since quiting gluten. I began to research this phenomenom on the internet and was surprised to discover a connection. In short, I haven’t had a single migraine since quiting gluten 3 months ago (a span of time never acheiveable in the past) and will never go back to eating it gluten.
It’s great to hear all the people who have had relieve with a gluten free diet.
I suffered for 2 year with at least 2 migraines a week, 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.
am very interested in the GF diet and migraines. Any info is appreciated!