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

By Lady Eowyn
in Coping with Celiac Disease

Recommended Posts

Lady Eowyn Apprentice
Lady Eowyn
Posted

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
GlutenFreeAustinite
Posted

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
ravenwoodglass
Posted

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
tom
Posted

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
Lady Eowyn
Posted
  • Author

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
Skylark
Posted

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
jenarella
Posted

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
jasmine4063
Posted

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
katie-sbb
Posted

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
ncdave
Posted

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
Lady Eowyn
Posted
  • Author

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,858
    • Most Online (within 30 mins)
      7,748
    Janet1234
    Newest Member
    Janet1234
    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

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.