Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Migraines And Gluten


elligal

Recommended Posts

elligal Newbie

I'm trying a gluten and dairy-free diet in an effort to reduce my migraines, which I get as often as 3 or 4 times a week. Has anyone else had success in this approach?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Nantzie Collaborator

I used to get really bad headaches pretty much every day with light and sound sensitivity. Now the only time I get them is when I get glutened. It's certainly worth a shot.

Nancy

tarnalberry Community Regular

Many people here have found their migraines reduce after a number of weeks or months on the gluten free diet (3-4 weeks may not be enough to see anything). Not everyone finds that to be the case (I haven't, and a few others haven't), but it's worth a shot, of course. (If it doesn't help, there are daily preventatives that can be taken, but they aren't risk-free, and it's definitely worth trying the safer things first.)

happygirl Collaborator

Dr. Green talks about migraines and Celiac/gluten in his book.

page 84: "The well defined neurological associations with celiac disease include the following:"

peripheral neuropathies, ataxia, epileptic seizures, migraines, brain atrophy and dementia.

page 89:

"A recent stuy on blood flow abnormalities in the brain showed a direct corrleation between untreated celiac disease and blood flow alterations. In this study, 4 percent of migrain patients (versus .4 percent in the control group) had celiac disease." (That is pretty significant!!!!!)

"Many patients with celiac disease complain of various degrees of headaches and migraines that improve in both severity and occurrence on a gluten free diet."

I can personally vouch that going gluten free really helped my migraines, which I have suffered from for years. It was one of the "side effects" of the diet that I didn't realize was linked until about a year after I started my diet, when I looked back and realized how much better I had done. Then six months ago, I read about migraines/celiac disease in Dr. Green's book.

Hope this information helps.

Ursa Major Collaborator

I found that my migraines were caused mostly by tomatoes (I am intolerant to the nightshades, and tomato is one of those). Gluten wasn't helpful, and since going gluten-free I get even less migraines. So, if going gluten-free won't help your migraines, you could have other food intolerances that cause them.

Also, fatigue and lack of sleep can cause migraines. I find that the only time I get migraines now are, when I allow myself to get overtired.

mythreesuns Contributor

I always get a migraine after glutening, so for me I KNOW they're related. But I also get migraines from milk products and lack of sleep. It took a long time to find all these triggers, but if you pay attention you'll find them.

Keep a migraine "journal" to see if you can find a trigger/set of triggers.

Clark Bent as Stupor-Man Contributor
Many people here have found their migraines reduce after a number of weeks or months on the gluten free diet (3-4 weeks may not be enough to see anything). Not everyone finds that to be the case (I haven't, and a few others haven't), but it's worth a shot, of course. (If it doesn't help, there are daily preventatives that can be taken, but they aren't risk-free, and it's definitely worth trying the safer things first.)

tiffany, if I remember correctly you took or are still taking topamax as a daily preventative, right? I am considering taking a daily preventative again and topamax is probably number 1 on my list as I've heard pretty good things about it...

what are your experiences with it? any side effects you've had or others have had that you know of? I had bad side effects, specifically fatigue, from Depakote ER when my daily dosage went above 1000 mg

how effective is it in reducing/eliminating the intensity/frequency of your migraines? I don't get migraines as frequently as I used to but I still get a headache every day... would it still be suitable for me?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular
tiffany, if I remember correctly you took or are still taking topamax as a daily preventative, right? I am considering taking a daily preventative again and topamax is probably number 1 on my list as I've heard pretty good things about it...

what are your experiences with it? any side effects you've had or others have had that you know of? I had bad side effects, specifically fatigue, from Depakote ER when my daily dosage went above 1000 mg

how effective is it in reducing/eliminating the intensity/frequency of your migraines? I don't get migraines as frequently as I used to but I still get a headache every day... would it still be suitable for me?

I'm still taking it, though I'm at 100mg/day (75mg at night, 25mg in the morning), which is one half of the 'normal' maintenance dose for migraines.

There are side effects, and it's not cheap, but when weighing it against the impact of migraines in my life, it's worth it. You can read the full PI here: Open Original Shared Link. The top side effects are paresthesia, fatigue, nausea, anorexia, and dizziness. I pretty much got all of those besides the nausea. :) But I get all sorts of side effects from almost all meds, and none of these side effects were particularly bad. The paresthesia - tingling in the extremities (fingers and toes) was the worst one for me, and if it had stayed as bad as it was the first few weeks I titered up my dose, I probably wouldn't have stayed on it. But it went almost entirely away after two months, and now I just get a tiny bit of it for half an hour or so after I take my doses. (Mmm... tingly fingers while typing leads to typos. :) ) The fatigue was resolved by working out how to take the dosing (75mg at night, only 25mg in the morning) and faded over time. And the 'anorexia' which was just a significant loss of appetite wasn't a huge issue (as I could remind myself to eat) and also faded after eight weeks or so as I titered up on dose. The dizziness was very mild and went away entirely after two weeks or so and never interfered with anything. There are other side effects, and other people had more trouble with them. It's a relatively safe anti-seizure med that happens to help prevent migraine, and it's not one you have to keep doing regular bloodwork to check on the liver, like some of the old-school meds, but I don't want to give the impression it's risk free, though I'm quite happy with it.

My migraines were coming on about every three or four days. They usually weren't as bad as the ones I had in the past (I could still talk, and walk, albeit slower, and sometimes I still was ok to drive), but they'd last three or four days, so it seemed like a constant state. They were definitely non-typical migraines. (Which leads me to suggest that you take a look at those 'headaches' and try to evaluate if those are non-typical migraines. I didn't think much about mine until I went in and realized that it was just that my migraine pattern had significantly shifted.) These days, I may get one somewhere around once or twice a month - so far while on this med. And the severity is much less, never getting to the state where I can't function reasonably, cutting the migraine disturbance in about half or so. I am curious to see how this winter goes, on the med, however, as I believe, after trying to track down my triggers, that what I'm sensitive to is some particular barometric pressure changes. I can't figure out the specifics, and I'm fairly confident on having ruled out food and other common environmental triggers. So the summer going well, if it's barometric pressure, should be little surprise, and I know that the end of last winter (when I started the Topamax) was *definitely* an improvement, but I'll be curious to see how it goes this winter too.

I don't know if it'd be suitable for you - you'd want to talk to your doctor. If you suspect that your daily headaches are atypical migraines, or if your migraines are occuring regularly enough to interfere with your life (I think the standard was >4-5 month? I don't recall), then probably, especially if the migraines last around 3 days each. Taking nearly two weeks out of a month and operating at much lowered capacity is definitely a serious quality of life issue that's worth trying to improve!

Felidae Enthusiast

My migraines were reduced by going gluten-free. It was a definite improvement for me.

elligal Newbie

tiffany, if I remember correctly you took or are still taking topamax as a daily preventative, right? I am considering taking a daily preventative again and topamax is probably number 1 on my list as I've heard pretty good things about it...

what are your experiences with it? any side effects you've had or others have had that you know of?

I take 50 mg of Topamax at night and 25 in the morning and it has somewhat reduced the number and strength of my migraines. As for the side effects...here goes

FATIGUE The worst is driving at night. I can't drive for long periods at night (more than 40 minutes) without falling asleep while driving. Not so noticiable during the day, and my ritalin helps conteract the fatique during the day. WEIGHT LOSS not a problem for me, as I needed to lose weight anyway. I don't feel that it supresses my appetite so much as it revs up my metabolism. When I exercise I seem to burn more calories than I would if I weren't on Topamax. LIVER DAMAGE this one is a biggie. because Topamax can be bad on your liver, your shouldn't drink alcohol, at all. Bummer. But all in all, well worth it because it helps control my migraines

tarnalberry Community Regular

elligal, how long have you been on the topamax? it took ... four or five months for the fatigue issues to resolve, but they did lessen for me. (of course, with winter coming up, and much shorter days, that brings it's own fatigue issues... :( ) anyway, I'm glad it's helping, even if there are annoying side effects. :(

barbara3675 Rookie

Topomax works for me also. I take 100 mg. once a day, but am trying to wein myself off of them so am only taking them on S-T-Th-S because of the expense. So far it is working. I get the onset of a migraine occasionally, but take Imitrex 50 mg. and it goes away. What a glorious thing compared to the day when they would come and I would know that a whole day of my life was going to be lost/I would be suffering in bed with such pain and the dry heaves until it would pass. I am 61 now and asked the neurologist if they would go away with the end of menopause and she said only if they were associated with my monthly cycle when that was. Unfortunatly that wasn't the case, so they are still around, but much less. I still have a stressful (at times)job and have to work hard. When they gets less, I think maybe the headaches will be less and less, they already are. Barbara

melie Apprentice

After about 4 months being gluten free, I had the revelation that I was no longer getting migraines (mine were definitely hormone linked as well) I accidentally got glutened about two days ago, and voila got a migraine yesterday, however not as great in intensity or duration as before.

Hang in there!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,569
    • Most Online (within 30 mins)
      7,748

    Moody
    Newest Member
    Moody
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.