Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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


skbird

If you have migraines, have they improved since going GF?  

25 members have voted

You do not have permission to vote in this poll, or see the poll results. Please sign in or register to vote in this poll.

Recommended Posts

skbird Contributor

I was just curious how many of us have migraines. I have had them my whole life - they were misdiagnosed as tension headaches so they never really would go away (no proper meds, diet recommendations, etc). When I discovered I was sensitive to nightshades and stopped eating them 6 years ago they mostly went away, I had one a day nearly every day before then. After that I had them about once a week.

When I went low carb they almost totally went away, but as I added gluten grains back they started up again. I was having terrible ones for about a year there before going gluten free. Now I have only had three in the past 6 months and two were related to a shellfish challenge (obviously didn't pass that challenge!) :rolleyes: The third was due to gluten consumption.

Anyway, have been reading about a link between the two so I thought I'd poll y'all...

Thanks!

Stephanie


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

They can be associated with Celiac, but they also run in my mom's family...I get just as many--really more--now than I did before. Oh well--compared to my symptoms before, I'm not complaining ;)

Canadian Karen Community Regular

I find no difference in frequency from before or after gluten-free. I get them the same.

I get alot of the migraines that are migraines, but not really the pain - i.e. the flashing lights like neon signs shaped like a half moon on the outer sides of my vision, nausea, etc. Other times, I get just the "plain old migraine"..... Never the two together though..... :blink:

Karen

Deby Apprentice

My migraines were also called plain headaches. I read some medical journal articles and realized I've been having migraines all my life. They are actually getting worse as I get older. They also run in my family. One of my sons gets them too, but not the other son, which is unusual because they are identical twins. I know not all identicals get the same things, but so far, that has been the case.

interesting thread.

skbird Contributor

I always figured mine had to be migraines - unbelieveably painful and they took over my life. But I couldn't get a doctor to agree until one gave me a sample of Frova (a med like Imitrex) and my "headache" went away. I don't get any lights or halos, sometimes one has been bad enough I have been nauseated. A lot of the time they feel to me like a layer of acid in my brain and any motion makes it ripple like waves on an ocean or something, thus causing more pain.

I also got them related to my menstrual cycle but not since going gluten free. They don't run in my family, nothing I seem to go through does, though! :D Well, actually my brother has some of the same hypoglycemia problems I do and I'm going to ask he get tested now for gluten sensitivity as well.

I'm just so happy not to have to use Frova - I have a $500 deductable on my insurance for meds and that stuff is $16 a pill for me... :angry:

Stephanie

SueD Newbie

I also had migraines but the key for me was eliminating dairy. Once I did that, the headaches were gone, too.

Guest barbara3675

This is a very relevant thread for me....have had migraines for 35 years. It wasn't until going on Topomax plus something to keep my blood pressure very low that they went away. However, I also must say that at the same time, I also got through menopause, which also sometimes helps. I do still get one VERY occasionally, at which time I take Frova when I have it or Imitrex. They are dreadfully expensive so I try to avoid not taking it. Isn't it terrible what they can charge for that stuff? There is a site you can go to in New Zealand and buy Imitrex, but not Frova for less money. It is www.4cornerspharmacy.com . You do not have to have a prescription, you can just order up online with your charge card and the medicine comes in your mailbox. I order my Topomax and one other medicine that I take that is dreadfully expensive through 4Corners and I save $1000 per year over my local pharmacy. As you might presume, I don't have very good prescription coverage on my health insurance. Hope this might help someone. I might even start a thread to this subject.

Barbara


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



Celiac.com Sponsor (A8-M):



Guest gfinnebraska

I use to get horrible migraines when I was 13/14 years old ~ flashing lights, numb fingers... then I would throw-up. I was in bed for the day. Horrible pain!! This is going to sound VERY strange to most, but I found that head lettuce triggered them.

After giving up head lettuce, they stopped. Months later I ate a hamburger with lettuce on it (without thinking) and had a horrible migraine. I don't know if it was a puberty issue, but now (since my 30's) I can eat head lettuce without any problems. Strange how the body works!! :blink:

plantime Contributor

Yep, had a migraine just last night. >sigh< I did not pass the egg challenge, so no more eggs for me!

skbird Contributor

Kimberly -

Do you have a sensitivity to sulfites? They were commonly used on things like head lettuce, though are supposed to be illegal now. That could explain why you used to get migraines from eating lettuce but not now. I actually get sick from some lettuce now - have determined it to be the sprays/washes they use with citric acid in them. Makes me have an upset stomach and headache for a few hours then dies out again.

Just a thought.

Stephanie

skbird Contributor

Dessa -

Bummer on the eggs! I challenged myself on shellfish this past Feb/March. I tried shrimp first, no noticable reaction. So I waited a week or two and had some crab (my favorite, and worst offender) and by the end of dinner my lips and mouth were sore and raw feeling. The next day I had the burning-acid migraine and sore stomach. Two weeks later I got brave and tried some smoked oysters and post-meal I started feeling like I had a sour stomach but the middle of the night burning migraine finally convinced me. I had been off shellfish for a year.

No more for me!

Stephanie

mommida Enthusiast

I have dirinking smart water, with caclium and magnesium. It has definately helped with migraines and muscle cramps.

I had meningitis fall of 2000, so I went through the 3 year recovery of headaches, and had a past history of migraines before that.

Laura

Guest gfinnebraska

Stephanie ~ that makes sense! :) What would I be eating now that would have sulphites?? Maybe I need to test that... Hmmm...

skbird Contributor

Kimberly -

Well, most wine has sulfites in them. I don't have a list but I looked into it because of my problem with lettuce. But I am certain it's not sulfites that were my problem.

I hope you figure it out! :)

Stephanie

plantime Contributor

It is a bummer to give up the foods we love to eat! My favorite breakfasts were eggs overeasy with toast, and oatmeal with toast. Now I can't have any aspect of either one! Here's to healthier us's!

darlindeb25 Collaborator

well--i didnt take the poll cause i have had migraines before, but probably only 5 or 6 in my lifetime--my mom has migraines and some of my kids do--one son, nick had to take inderal for them as a young child--inderal is a beta blocker---and celiac3270--keep your chin up--most boys who have migraines do out grow them--my son has headaches, but very rarely migraines anymore--i have headaches on a daily basis--i only remember one month without headaches in my life and it was january of this year--the 1st month i was here on the island i didnt have any headaches or they just couldnt touch me with how happy i was--but i am back to having them daily again--i am taking 1000 mcg of B12 daily now hoping to help my neuropathy and headaches--we will see---deb

skbird Contributor

Wow Deb - back to daily after a month. I'll bet that was a good month...

I had them almost daily back 6+ years ago. I don't know what I'd do now. I did have one last fall that lasted 13 days and I even went and got a shot of pain meds at one point trying to break the darn thing. But I had been doing a cleansing protocol and had just kicked up too much stuff. It was a month after that I started my gluten free diet. I don't know what I'd do now if they came back daily.

I wonder if there is some other food or something that is getting to you? I was so disappointed when I started getting them again after not having really any for a while there. I think if they do come back for me I will start looking at my food first, not last as I keep doing now.

I can't believe that I haven't even had a hormone migraine.

Thanks for voting, those who have. This is an interesting poll so far.

Stephanie

Guest ajlauer

My doctor (and past doctors) have told me I don't even have migraines, I just have kids! What is everyone's definition of a migraine? I get headaches all the time (probably 75% of my awake-time). Quite often, the pain is so bad I can hardly move. I can't focus clearly... sometimes there's like little stars floating around, or fireflies or something. Not sure how to describe it. This has been an interesting thread for me. I was just about to sign off because of the headache I have right now. Good timing!

celiac3270 Collaborator

I get headaches, too, and make the distinction as a migraine having:

- The splitting pain that makes your head feel like it's going to explode.

- Sensitivity to light/sound.

Guest gfinnebraska

Stephanie - I don't drink wine or any other alcoholic beverage, so maybe that is why my migraines stopped! Maybe the lettuce was the only culprit. :) I will dig around some more ... would be interesting.

skbird Contributor

Kimberly -

I was thinking last night that dried fruit also contains sulfites (unless you get them sulfite free - usually pretty brown looking and not as appetizing to the eye, but tasty all the same). I know there are more but I just can't think of them.

Would sure be cool if this cleared up the mystery for you!

Stephanie

skbird Contributor

ajlauer -

I'd say those are migraines. I don't have so much of the light sensitivity as celiac3270 mentioned, only with the *really* bad ones (the once a year kind). But if motion makes it worse, that is usually a migraine. And the floaty things you describe - sounds like visuals that are common with migraines (I don't have those but have heard others who do). You might want to ask your doctor about Imitrex or Frova or one of the triptan drugs - he could give you a sample and you could take it next migraine you get and if it works for you, there's your answer. That's how I finally got confirmed diagnosis. If it's not a migraine it won't work as it's not a pain reliever but a med that regulates how your blood vessels contract/expand (which is what happens during a migraine). If that stops the pain then you know what the problem is. THEN you just have to determine, if you can, what sets you off. Another story completely... :)

Stephanie

Guest ajlauer

Thanks stephanie! You brought up some excellent points!! I'll have to hurry up and find a new doctor.

skbird Contributor

Ever get the feeling we all need a new doctor??? :)

I was pretty mad when I took that Frova and it worked. Even when the doctor gave it to me he warned it probably wouldn't work because he was sure I don't have migraines. When I think of all the doctors, time, pain, etc I'd had in my life (been getting "headaches" since I was small) it really pisses me off. But I have gotten used to being disappointed in doctors.

Wish you luck in this endeavor!!!

Stephanie

  • 4 weeks later...
jcgirl Apprentice

I have had migraines for 30 years. gluten-free sense January 20, 2005 and have had only one. I have noticed that when accidentally ingesting gluten I begin to get a migraine but have been able to ward them off with tylenol. I have not had to have my imetrix prescription refilled sense going gluten-free.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,678
    • Most Online (within 30 mins)
      7,748

    Celiac79
    Newest Member
    Celiac79
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Hi StevieP I think it is best to take GliadinX Just before, during or just after you eat a food that may have a small amount of gluten.  Taking 2 capsules of GliadinX in the morning will not protect you all day because it will be long gone when you need it. The upper digestive system is where the digestive enzymes break down gluten. The problem with Celiacs is that normal digestion will only break down gluten to the point where the small fragments will still cause a reaction. GliadinX will break down the fragments so that they are too small to start the autoimmune reaction.  The label on my bottle reads'it works in the stomach' and that is ver concentrated so 1 capsule is the recomm Hope this helps/Have a lovely cruise.ended dose for each meal. 
    • StevieP.
      Thanks so much for that information!! That helps me out alot!!
    • Scott Adams
      It’s completely understandable to feel confused and anxious—colonoscopy prep can feel overwhelming, especially when you’re already dealing with symptoms like loose stools and elevated inflammation markers (that high calprotectin and CRP definitely warrant further investigation!). Regarding the senna tablets: The warning about avoiding senna with IBD (like Crohn’s or colitis) is typically because it can irritate an already inflamed colon. Since you don’t yet have a confirmed diagnosis—but your brother has colitis—it might be worth calling your gastroenterologist’s office today to clarify if you should skip the senna given your symptoms and family history. Some clinics have an on-call nurse who can advise quickly. For the prep itself: Plenvu is strong, so if your bowels are already loose, the senna might be overkill. Stick to clear liquids tomorrow (broth, apple juice, etc.) and stay near a bathroom! For anxiety, remember the procedure itself is painless (you’ll likely be sedated), and the prep is the hardest part. Bring a phone charger or book to the clinic, and treat yourself afterward to something gentle on your stomach (like mashed potatoes or yogurt). Hang in there—this is a big step toward answers. You’re doing great advocating for yourself!
    • Scott Adams
      Great question! Wheat straw dishes are typically made from the stalks of wheat plants (which are naturally gluten-free) combined with a binding resin. While the straw itself shouldn’t contain gluten, the safety depends on how the product is processed. Some manufacturers may use wheat-based binders or process the straw in facilities that handle gluten, creating cross-contact risks. To be safe, I’d recommend reaching out to the company directly to ask: 1) If their wheat straw material is tested to confirm it’s free of gluten proteins, and 2) Whether the production line avoids cross-contamination with gluten-containing ingredients. Many brands now cater to gluten-free consumers and will provide detailed answers. If you’re uncomfortable with the uncertainty, alternatives like bamboo, ceramic, or glass dishes are inherently gluten-free and worry-free. Always better to double-check—your diligence is totally justified!
    • Scott Adams
      I’m so sorry you’ve been struggling for so long without the answers or relief you deserve. It’s incredibly frustrating to have a celiac diagnosis yet still face debilitating symptoms, especially after decades of strict gluten-free living. Your history of chronic health issues—SIBO, food allergies, recurrent infections, and now potential complications like nerve pain (left leg) and mucosal ulcers—suggests there may be overlapping conditions at play, such as autoimmune comorbidities (e.g., Hashimoto’s, Sjögren’s), nutrient deficiencies, or even refractory celiac disease (though rare). Stanford is an excellent step forward, as their specialists may uncover missed connections. The medical gaslighting you’ve endured is unacceptable, and while legal action is an option, focusing on thorough testing (e.g., repeat endoscopy, micronutrient panels, autoimmune markers, skin biopsy for dermatitis herpetiformis) might be more immediately helpful. Menopause can absolutely exacerbate underlying inflammation, so hormonal imbalances should also be explored. For symptom relief, some in the celiac community find low-dose naltrexone (LDN) or mast cell stabilizers helpful for systemic issues, but a functional medicine doctor (if accessible) could tailor supplements to your needs. You’re not alone in this fight—keep advocating fiercely at Stanford. Document everything meticulously; it strengthens both medical and potential disability claims. Sending you strength—this shouldn’t be so hard, and you deserve real solutions.
×
×
  • Create New...