Migraine gluten link

[meggiemog]

I have not been on this forum for quite some time now, as I have found out what my migraine trigger was/ is. I no longer take preventative medication as I don't need to. During covid times I started having really bad stomach pain, nothing was really helping and I felt really awful. I had been tested for coeliac - but it was negative. I was told that gluten was not my problem. It was!!! I went on a FODMAP diet - which was both very strict and very bland. As I was at home and had time on my hands, I was able to concentrate on making my diet interesting and after a few months of excluding and re-introducing all my issues where proved to be very much gluten related.

Fast forward to earlier this year, having been gluten free for over 2 years, but still on propranolol for migraine prevention (was always blamed on vestibular issues and hearing loss) I started having issues where my heart rate was slowing down (I found this out with my fitness watch) and I was feeling really clammy when this happened, had a good chat with my GP and was weaned off the propranolol as she said the tablets could lower my heart rate. I told her I was suspecting gluten was my migraine trigger (I had a couple of migraines and vomiting when I'd eaten gluten by mistake). Once off the tablets I found that I wasn't getting migraines at all anymore.

I know this is not the case for everyone, but I would say if you do have digestive issues and migraines, it might be worth going down that avenue. I have actually found recently there is medical proof that migraines and gluten intolerance / coeliac disease are linked. I know within a few hours if I have eaten the wrong thing - I get a migraine that makes me sick and totally wiped. But at least for me now it is only a case of a week feeling rough as opposed to feeling really rough all the time!

If this helps one of you get better then it's totally worth it 🙂

[Dellajoy]

That's great news. Have a look at Angela Stanton migraine protocol on Facebook. You might find her diet/method of eliminating migraine very interesting. It will definitely back up your findings. Congratulations, no other person unless a true migraineur can appreciate your success.

[meggiemog in reply to Dellajoy]

I did a strict diet under a dieticians advice. I wouldn't advise anyone just cutting out food groups without proper guidance and certainly not stopping meds either. I can't believe how something you eat can make you feel so ill!

[bennevisplace]

Thanks for your interesting post. Do you have a literature reference to any scientific/ medical study linking migraine to gluten intolerance? I have both conditions. I don't know if I have CD, I just avoid foods containing gluten. My migraine is now chronic.

[meggiemog in reply to bennevisplace]

You just have to google migraines and gluten intolerance - it comes up with all kinds of studies. You need to talk with your GP and see if you can get tested. It will involve eating gluten for a few weeks prior. My test was negative for coeliac - but I know now I am very intolerant of it.

[Brychni in reply to bennevisplace]

sorry - did you mean that although you avoid gluten your migraines are chronic?

[bennevisplace in reply to Brychni]

Yes, I have avoided gluten for 20 years plus. My migraines only became chronic about 2 years ago, after gradually increasing in frequency over several years.

[Brychni in reply to bennevisplace]

sorry - did you mean that although you avoid gluten your migraines are chronic?

[meggiemog in reply to Brychni]

No - my migraines were every day before I gave up gluten. I was on propranolol to prevent the headaches - which made things bearable, but was always wiped out. I ended up having some really bad stomach pains in covid and was put on a FODMAP diet to see if it was IBS. There were other issues too, but I discovered that gluten made me feel awful. I stayed on propranolol until earlier this year, I was given a fitness watch as an Easter gift and found my heart rate kept dropping to 40 bpm and making me feel a bit weird and dizzy - and I am no athlete! I had only had 2-3 migraines since being g/f and only when I'd been stupid and eaten something I shouldn't (I remember being seduced by a slice of cake once and then feeling rubbish for 5 days). I asked my GP if I could withdraw taking the propranolol - which she told me how to do safely, and have not looked back. It was only after completely dropping this that I really discovered that the gluten had been my trigger. What I should also say is I have had digestive issues for a number of years, and that if you did want to try and see if gluten is your trigger, you should have a chat with a doctor first. It's not as easy as it seems and it is a large group of foods that you cut out. I ended up with a very lovely dietician through my GP who was very helpful. It was after all of this when I thought - I wonder if there is a link with migraines and gluten. It is linked, just like people can be triggered by wine or chocolate or eggs. If it is that simple (which it isn't really - I constantly read food labels now) then that's fantastic, but we are all different. My mum had migraines because she had high blood pressure, so it's really important you do not give up medication or start changing your life radically without talking to a health professional first

[Brychni in reply to meggiemog]

I tried modified keto about 10 years ago and it worked brilliantly for a few years and then it didn't. Keto diet is a fairly well established course of action against migraines and epilepsy and has been known about for decades although, it goes in and out of fashion. It's worth noting that a lot of the foods that contain gluten are high in carbs which of course are heavily restricted in a keto diet. Not sure why it stopped working but I suspect age and hormones may have had an influence.

So at that stage my migraines were accompanied by cluster headaches which were even worse - if possible - than the migraines and I just couldn't carry on with the keto. I haven't worked regularly for about 20 years, becasue of the migraines and a few years ago I ended up in hospital 3 times.

I took all the cr** drugs they could push on me including beta blockers, topiramate, pizotifen etc. Imigran Subject injections for use during and attack (and zomig nasal sprays) worked great on the migraines but not the cluster headaches and after the most recent hospital stay the neurologist said he's had enough and put the pressure on for me to be referred to the headach clinic in the next county - having previously been rejected when my GP tried to get me in.

Finally , 2 years ago this April, I was allowed to attend the clinic and was prescribed Ajovy injections and basically it has changed my life. My friend who is a nurse does them for me once a month but now that I am in full time work I have fewer options to get together with her so I am determined to make January the first month of me doing it myself - we'll see!! I watched all the self injecting videos at the beginning and felt even less inclined to do it myself! didn't help that one person deomstrating her first injection cried 😱

Over the years, with the exception of the keto method, I have contemplated trying various things with diet and have taken the odd supplement but deep down I have always known that my head is a total mystery and I've never been able to identify a trigger except alcohol and lack of sleep but having not touched a drop for nearly 5 years did not cure me of migraines or cluster headaches.

Although the rheumatologist said in the absence of other symptoms such as stroke and repeated miscarriages it was unlikely, I believe that my anti beta2 glycoprotein antibodies are the cause, even though I don't consider myself to have APS. He told me to take a daily aspririn for that and it got me thinking about wether a daily aspirin would have had some effect on the migraines but I am far too frightened to stop the Ajopvy in order to find out! The Hughes Syndrome website says that the headaches and migraines associated with the illness can be reduced by aspirin or other blood thinners and Migraine Trust UK advises it's too risky (?) - trouble is a lot of rheumatologists are not that clued up about APS. Also, I'm already on the best medication for that and I started that years ago and it did nothing for the migraines.

I hope that finding this chink in the armour of relentless migraines will be the thing that works for you.

[meggiemog in reply to Brychni]

If I was in your shoes I would quite happily learn to do the injections . Sometimes we get no answers - and that is frustrating. I was very scared to drop the propranolol in case I was wrong and my migraines were linked to my hearing loss. I've heard that sometimes when you give up medication then try taking it again it loses the original effectiveness, so it was really a leap of faith. I would say to anyone who is regularly in pain - if you find something that works go with it, be it diet, be it meds, be it changing your lifestyle. I know that some work places can be a migraine trigger too - I certainly wouldn't be able to be a painter and decorator as the smell of paint makes me feel sick!

[designer111]

Thanks for this, inspired me to try this out. I don't feel I ever have a migraine immediately after eating a certain food tho so I don't think foods are my trigger. How sone after eating gluten do you get a bad head?

Apart from goggling anything on migraines and gluten, are there particularly studies that grabbed you and felt were honest that you can share?

[meggiemog in reply to designer111]

I find that it's usually about 12 hours or so after eating gluten - which is why it's more likely intolerance than coeliac - as they usually get a reaction within an hour. I find that I feel really hungover and exhausted, the bad head starts, I more than often now throw up and the last couple of times had the added 'bonus' of not being able to lift my arms for a few days as it seems to attack my joints as well. The joint pain usually lasts for about 5 days - then goes as quickly as it came! You can only truly find this if you are very strict and cut the gluten out for a few weeks (I am guessing I didn't eat it for about 12 weeks as I was following the FODMAP diet) When I did try gluten again it made me feel very poorly.

[designer111]

Sorry to hear this. I don't get this reaction from food as far as I know but I am now keen to go gluten free for a couple of weeks to see if there's an improvement, coupled by extra plants and less processed stuff.

[troy04]

The reason(s) of getting migraine is different to different people. I went gluten free and there was no impact on my case. However vegan diet definitely reduces my attacks and severity. I can’t do Keto as I don’t cope well with high-fat diet, it gives me more headaches and indigestion. If any of you have discovered the root cause and benefiting- congratulations.