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

Gluten Migraine


Lady Eowyn

Recommended Posts

Lady Eowyn Apprentice

Hello there

Just wondered if anyone else gets this.

I call my severe headaches Migraine but I don't get the flashing lights that I know some people get. I have a terrible headache that feels like my head is in a vice and it lasts for 3 to 8 days so quite significant then :blink: !! When I was in my teens and twentys I had permanent headache to varying degrees and was very rarely without one. I don't get them so often now - in fact only when glutened.

Along with them I get awful nausea, feeling spaced out and occasionally as if my head is hot. My DH (which is now mainly scalp only) gets worse and my whole head feels sore.

These headaches seem to make my hair fall out - honest :o .

Also they make my pupils really small which also causes some light sensitivity - anyone else have this?

Once the actual headache has gone my brain feels bruised and foggy.

Eating anything makes it worse and I have also thought that taking painkillers can aggravate it !!

My stomach won't take any disprin/asprin based painkillers nor codeine so I can only use paracetamol.

They don't get rid of it anyway so I don't usually take anything.

I know I have to sort out cc issues but I have one of these headaches now and just wondered if anyone has any advice please?

(Hope this is in the right section.


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



Celiac.com Sponsor (A8-M):



GlutenFreeAustinite Contributor

I went gluten free because of my headaches. They weren't quite like yours, but I'd get them every afternoon, like clockwork. They were always on the back of my skull, on the right side. Those lasted about a year, until I went gluten free, and they were gone.

ravenwoodglass Mentor

I used to get gluten migraines also. They did get milder as time wore on. I also have significant hair loss when glutened which still is as bad as it was at diagnosis so I don't think it was related to the migraine but more to the autoimmune effect of the glutening.

If you still have DH issues with your scalp are you making sure your hair care products are gluten free? You should also limit iodized salt for a while as the iodine will help keep the antibodies active.

I hope things improve for you soon.

tom Contributor

Hello there

Just wondered if anyone else gets this.

I call my severe headaches Migraine but I don't get the flashing lights that I know some people get. I have a terrible headache that feels like my head is in a vise and it lasts for 3 to 8 days so quite significant then :blink: !! When I was in my teens and twentys I had permanent headache to varying degrees and was very rarely without one.

...

I know what you mean. Head-in-a-vise was one of the names I had for the headaches pre-gluten-free.

(Ball-peen headache & pressure-cuff-helmet headache are more)

And I too have characterized them not as daily headaches plural, but one looooonnnng headache lasting yrs. :angry:

That said, it finally changed when besides gluten-free, I stopped dairy & soy.

Though dammit I've got a bit a headache right now - at least nowhere near the type that gets a name. ;)

Lady Eowyn Apprentice

Thanks so much for your replies - have used this forum as a guest for about 18 mths and the advice and humour has helped enormously. With the majority of posts I could put my hand up and say "that's me too!" What a relief!

As for the headache (had me up in the night)this time it is part careless/part self inflicted - I am the slowest learner I know :ph34r: .

Had long believed that the hairloss was bad with headaches and I am now sure it is, like you say Raven, from the autoimmune attack caused by the gluten. I would say that since going gluten free Feb 2011 the hairloss has started regrowth when I cut out soya and dairy (coffee exceepted) around New Year 2012. I think soya causes it too and makes me almost as ill as gluten.

Have struggled lately (why I joined the forum) because I seem to have gotten really resentful about the goalposts being changed with what I can eat. I am definitely super sensitive bracket.

Use wheat free hair care and skin care - otherwise terrible itching and soreness. Have had DH on scalp since teens (used to be on shoulders, buttocks and arms) but now only scalp. Never gone completely but varies and can be really bad. I know immediately if a product contains gluten!!!

Skylark Collaborator

Have you talked to your doctor about the headaches? There are all sorts of meds they can give you to try to either abort the migraine attack or at least make it less miserable. For example, Midrin makes my headaches much more tolerable. Obviously you need to get the CC under control but there is no reason to suffer through the migraines from a mistake on the diet when meds might help make them be more tolerable.

  • 4 months later...
jenarella Rookie

Hi,

I just posted a question very similar to this. I also get severe migraines and nausea when I accidentally eat something that's been contaminated with gluten. I have had these as long as I can remember, and even got white matter brain lesions from them. I have done all types of treatment including medication, herbal remedies, pain killers, bio feed back therapy and none of it seems to help. The only mild help I get is laying in bed in the dark, drinking lots of water (if i can keep it down) I also do a mix of ibuprofen and imitrex. It does not take away the migraine, but it takes it down to a level that I don't feel my head is going to explode. Wish I could be of more help. Good luck!

J


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



Celiac.com Sponsor (A8-M):



jasmine4063 Newbie

I too have the Migraines......cannot move head due to severe pain. Feels like an ice pick on the left temple. Also had daily headaches for years from about 14 yrs on...that I can remember. I was just diagnosed with hypothyroid which seems to help with new meds but it just started again. Nothing seems to take the pain away. It will hit at midnight and go all night and you cannot get any relief. I am unable to take much in meds especially narcotics. I take two Diazepam a day to help the muscle spasms but this is different. I have allery headaches, stress headaches, gluten headaches, thyroid headaches..........one big fat headache every day!!!!!!!!!!!!!!!! I am not glad you have them, but relieve I am not the only one! They are debilitating and my work has declined because of them. Any words of wisdom is helpful!~

  • 1 month later...
katie-sbb Newbie

Hello there

Just wondered if anyone else gets this.

I call my severe headaches Migraine but I don't get the flashing lights that I know some people get. I have a terrible headache that feels like my head is in a vice and it lasts for 3 to 8 days so quite significant then blink.gif !! When I was in my teens and twentys I had permanent headache to varying degrees and was very rarely without one. I don't get them so often now - in fact only when glutened.

Along with them I get awful nausea, feeling spaced out and occasionally as if my head is hot. My DH (which is now mainly scalp only) gets worse and my whole head feels sore.

These headaches seem to make my hair fall out - honest ohmy.gif .

Also they make my pupils really small which also causes some light sensitivity - anyone else have this?

Once the actual headache has gone my brain feels bruised and foggy.

Eating anything makes it worse and I have also thought that taking painkillers can aggravate it !!

My stomach won't take any disprin/asprin based painkillers nor codeine so I can only use paracetamol.

They don't get rid of it anyway so I don't usually take anything.

I know I have to sort out cc issues but I have one of these headaches now and just wondered if anyone has any advice please?

(Hope this is in the right section.

I had 10 years of skull splitting migraines before I went gluten-free. It took a few months, but is well worth it. Before that I took Zomig (zolmitriptan), which was a life-saver. Nothing else helped - not even narcotics touched the pain. I still keep some available for gluten accidents.

ncdave Apprentice

I found a little trick on here that really helped with my headaches till i could figure out what was causing them. Using your finger tips lightly tap on your forehead like raindrops for 2 mins. then take your index fingers find the heartbeat in your temples, press in for 3 seconds then release for 3 sec. continue doing this for 2 mins an see if it doesen"t give you some relief.

I found corn was giving me the migranes, along with nausa an many other gluten symptoms. I have not had a single headache since i gave up corn! Giving up corn is no fun, but it"s way better than being sick an having migranes. You"ll have to do a little research on how to find corn in your food. Here"s a few examples where you will find corn, vitimans, tylenol, pain killers an allmost all pills. iodized salt ect,ect, It may not work for you but it sure worked for me. try an give up corn for 2 weeks an see if it helps. I"m not a doctor an your results may vary, but i am a firm beliver that something your eating is causing your headaches.

Lady Eowyn Apprentice

Hi

My migraines (call them that but I don't get flashing lights) are definitely from my stomach and caused by gluten. When younger I was rarely without some level of headache and am glad to say that I only get them now when cc'd. The worst one I had (about 6 years ago) lasted 8 days! I began to worry actually.

If I get one starting now I try to 'drown' it by drinking lots of water and this does help. When I eat anything about 20 mins later the headache gets worse so it is from my stomach.

I have to say that I am sufficiently used to them that I just keep going (fairly driven sort of person). If I try to rest the pain is more concentrated so I have to remain distracted. Outdoors with cool air round my head is favourite although I am cautious with too much exercise because of the pounding effect :wacko: .

Washing my hair seems to help.

Years ago the doc gave me migraine tablets (don't remember what) and I threw up straight away - never took another.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,608
    • Most Online (within 30 mins)
      7,748

    lorrasmama
    Newest Member
    lorrasmama
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.