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/headches


Jay Elle

Recommended Posts

Jay Elle Newbie

Sorry to post two topics today, but I saw some posts in other topics that made me want to ask: are migraines a common symptom?

I've been getting migraines on and off since my early teens. For the last year I've been 'migrained' for usually 5-6 days of each week. Lately they've been really bad, and my mum sent me marching (over the phone) to the doctors office. He said he wanted to see me in a few weeks before giving me preventatives. I said that wasn't good enough, doctors have been giving me the run around for the better part of 6 months when it came to my head. I went to see another doctor the same day, my head was sore and he could tell as soon as I walked in. I said straight out, I've been to a doc today and he didn't listen to me, will you please listen to me? He looked suprised, said I was most definately a candidate for migraine preventatives. He said that we'd have to trial them, there were several different types and he didn't know what would work. I don't know if its the new diet, the pills or my determination but I get about one migrainey day a week now, plus one day of brain fog.

I was already on a gluten-free diet when the migraines got bad, so I dont know if they are linked. I do find that I get a migraine + abdominal pain, diareah (sorry about spelling), acne break outs (small of my back, just under my jaw, back of neck, face and in the middle of my chest). I tend to get more sores on my legs and scalp around this time too. I don't throw up but I gag alot and it takes alot of effort not to throw up.

Does anyone have similar experiences with the migraines? Is it linked to the Gluten? I've already found problems with my diet on this site today (Vegemite, the other aussies here will understand my pain)... and I'm wondering how much gluten has to answer for.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Have you tried eliminating dairy as well as gluten? Soy could be a culprit, too. My migraines were mostly caused by tomatoes (eliminating the nightshade family might be a good idea, potatoes cause almost the same symptoms as gluten for me). It could be that you have other intolerances besides gluten. You may need to do an elimination diet to find out what is causing your migraines.

almostnrn Explorer

Mine definately seem to be set off by very specific things, good luck finding yours. Make sure you are getting plenty of sleep, getting enough to eat, and plently of water. Finally good for you for not being bullied by the doctor. I hope you find some relief soon.

tarnalberry Community Regular

Foods are a common trigger and many on here find their migraines go away gluten free, or after eliminating whatever other intolerance they find may be contributing to the problem - be is dairy, soy, egg, nightshade, peanut, etc. But some of us do still have migraines that are triggered by non-food items, and the dietary changes haven't helped that. Some non-food triggers include chemicals (contact or smell), light, and barometric pressure. I believe mine are triggered by that last one, and man, do I WISH that a change in diet would make it sunny and warm all the time! :lol:

Because of my migraines, I'm on a daily preventative - topamax. It's actually an anti-epileptic, but works to prevent migraines. It's done well for me, though I had to get through a couple months of annoying side effects that wore off. (The trade off of going through it was well worth it; it knocked my 2-3 times a week headaches down to 2-3 times a month, at the very very worst. I haven't had one in months.)

Simply-V Newbie
I get about one migrainey day a week now, plus one day of brain fog.

I was already on a gluten-free diet when the migraines got bad, so I dont know if they are linked. I do find that I get a migraine + abdominal pain, diareah (sorry about spelling), acne break outs (small of my back, just under my jaw, back of neck, face and in the middle of my chest). I tend to get more sores on my legs and scalp around this time too. I don't throw up but I gag alot and it takes alot of effort not to throw up.

Does anyone have similar experiences with the migraines? Is it linked to the Gluten? I've already found problems with my diet on this site today (Vegemite, the other aussies here will understand my pain)... and I'm wondering how much gluten has to answer for.

I'm sorry to hear you're having such problems. I just happened to be bored and looking around and found your post.

What you're describing doesnt' sound like typical migraine symptoms. Not that your head doesn't hurt, because I'm pretty certain you've wanted to chop it off to dull the pain. :)

Gagging, abdominal pain, diarrhea, and expecially acne breakouts (as well as the migraines).. all spell out an allergic reaction to me. Its possible that you're allergic to a food that you're eating more often now which is why the migraines are getting worse.

I'd look at corn (quite a few celiacs also have issues with corn), dairy, soy/peanuts, and nuts. Keep a diary of foods you're eating and how you feel afterward. You may find some correlation between what you eat and how you feel.

Corkdarrr Enthusiast
Foods are a common trigger and many on here find their migraines go away gluten free, or after eliminating whatever other intolerance they find may be contributing to the problem - be is dairy, soy, egg, nightshade, peanut, etc. But some of us do still have migraines that are triggered by non-food items, and the dietary changes haven't helped that. Some non-food triggers include chemicals (contact or smell), light, and barometric pressure. I believe mine are triggered by that last one, and man, do I WISH that a change in diet would make it sunny and warm all the time! :lol:

Because of my migraines, I'm on a daily preventative - topamax. It's actually an anti-epileptic, but works to prevent migraines. It's done well for me, though I had to get through a couple months of annoying side effects that wore off. (The trade off of going through it was well worth it; it knocked my 2-3 times a week headaches down to 2-3 times a month, at the very very worst. I haven't had one in months.)

Tarnalberry, how did you figure out what your trigger was? I think we had this discussion a while ago.

But I have since gone on a strict elimination diet - which also includes all meds. So at first I was having issues with rebound headaches (oops! Excedrin addict) and then my headaches almost completely stopped. They at least lessened significantly in severity.

Anyways, last nite, STILL on the elimination diet, I got a WHOPPER of a headache. oh my god. NOTHING helped. There was nowhere on my head that I could press and it felt better. The ice packs were a mild relief at best. It turned into nausea which turned into dry heaving. I think I might've passed out from the pain. Luckily by 1230 or 100 it was gone. All I could think about the whole time were the free samples of Imitrex sitting on my desk that my dr. had given me. But I've only got a few weeks left in this diet and I've done so well...

Anyways, obviously something happened to cause that. And as its obviously not food, I have no idea how to begin looking for it.

Any suggestions would be greatly appreciated.

Thanks

Courtney

Jay Elle Newbie

I am lactose intolerant, but I still eat it, because Mum likes me to have calcium. I'm not allergic and have actually managed to go from almost no tolerance to being able to eat small amounts of cheese and yoghurt gracefully, but normal milk and cream do hurt me. (Lactose free milk for the win :) I get really bad stomach cramps, more inclined to get excema.

The symptoms I listed were in addition to the normal migraine symptoms - extreme noise, temperature, smell and light sensitivity, thundering head on one side (does swap), 'snowy' vision that fades to black, weakness in my hands and legs. Even when the pain stops I'm exhausted and it takes days to get out of the brain fog.

The weakness in my hands is aparently a 'Focal Migraine' which means that doctors won't give me hormone treatments, for instance, birth control pills. I recently found out implanon was migraine safe, and had it put in my arm today.

The doctor tried me on Pericatin, a presecription hayfever med. He told me that some people would take several of these pills daily, but wanted me to take one before bed. They made me really groggy to start, and I'd oversleep (~14hours) but I got used to them. I upped the dosage to two if my head was bad, and it seems to have improved. I still get them weekly, but not nearly so severe or so long. I live with a cat, and my sinuses are alot better at the moment, I'm guessing its the med or that the cat isn't moulting. (She doesnt cause them she's new to the house.) The Periactin hasn't gotten rid of them altogether but I'm inclined to take the improvement at this point. If I need to later I'll find one that eliminates them, but they might go away themselves yet...

Also, I know headaches can be caused by off sleeping patterns and eating habits. Part of the improvement in my headaches could be that I've regulated my eating times more (not normal, but regular ;) Cork, did you eat at the normal times before the headache? Drink enough? Sleep/wake at the same time as usual? It obviously wasn't food itself, but as you say something must have done it!


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



Celiac.com Sponsor (A8-M):



Simply-V Newbie
The symptoms I listed were in addition to the normal migraine symptoms - extreme noise, temperature, smell and light sensitivity, thundering head on one side (does swap), 'snowy' vision that fades to black, weakness in my hands and legs. Even when the pain stops I'm exhausted and it takes days to get out of the brain fog.

Honestly, the only thing you're doing is convincing me that its allergy related. I'm really concerned. The fact that the hayfever medication (antihistamine) is helping .. is just more proof.

I get migraines from my food allergies too. I used to get them all the time. Nothing helped, until I finally (due to other symptoms) found out that it was food related. I only figured that out because I got tested and started avoiding the food. When I went to reintroduce the food later, a massive migraine kicked in.

Yes I had sensitivity to noise (didn't even have to be loud noise), temperature, smell, and horrid light sensitivity. Thundering head.. and even "snowy" vision from time to time. Weakness in hands/feet and pretty much anywhere.

The brain fog you're describing as an aftermath.. is a big allergy alert as well.

I don't know which food is causing it or if its a combo of foods at the moment. I do think that you need to see an allergist and have this checked out. If thats not an afforable option, cut out beans including soy/peanut, milk, eggs, and corn. Do it for 2-3 months. Then add them back in 1 every 3 days and note any problems, stuffy runny nose, headache, funky yucky feelings, whatever.

tarnalberry Community Regular
Tarnalberry, how did you figure out what your trigger was? I think we had this discussion a while ago.

But I have since gone on a strict elimination diet - which also includes all meds. So at first I was having issues with rebound headaches (oops! Excedrin addict) and then my headaches almost completely stopped. They at least lessened significantly in severity.

I track a number of 'symptoms' (knee pain, vulvar pain, headaches, mood, energy, etc.) along with my temperature chart for fertility tracking, and can look back at when I get migraines and old weather patterns. I thought to do that after talking to an aunt, who has the same issue, and after looking at some other websites about less common migraine triggers. My diet is so varied, that I very often don't have the same food for many days at a time, and I've kept food charts at times as well (to make sure I'm getting enough nutrients/calories/etc. - fitday.com works great), that make it easy to look back and see no food commonalities. Eh... it's a matter of data analysis and looking for correlation? Take enough data, and you can rule out a lot of things? I don't have enough data, and after going on the meds, can't get enough data, to determine it for certain, so it's a guess. (If you wanted to try to do data analysis it, you can get barometric pressure data from the national weather service - but don't get the data until you've tracked at least a month of headache symptoms, to try to reduce any unintentional data-skewing you might get.)

elligal Newbie

Any suggestions would be greatly appreciated.

Thanks

Courtney

Might I suggest hormones? Was it within a week of your period?

elligal Newbie

I don't throw up but I gag alot and it takes alot of effort not to throw up.

Does anyone have similar experiences with the migraines? Is it linked to the Gluten? I've already found problems with my diet on this site today (Vegemite, the other aussies here will understand my pain)... and I'm wondering how much gluten has to answer for.

gabby Enthusiast

There's some interesting new research going on regarding migraine headaches and something called channelopathies. Look up channelopathies at wikipedia (Open Original Shared Link) and scroll down to the migraine section.

Channelopathies are gated channel ion disorders. The key is to figure out which channelopathy you may have (this is new stuff and testing is not yet quite accurate). One of the reasons to try and figure out which one you have is because certain diets help with certain versions. It certainly sounds like you have wicked migraines and a channelopathy might be what's happening. Usually a neurologist specializing in channelopathies needs to be consulted.

I've had migraines since I was 7 years old and found certain foods to be definite triggers. Sugar is a big one for me. Any sugar. And carbs will do me in as well.

Anyways, hope this helps you to get some help.

Jay Elle Newbie

An update on the migraines:

I had a headache (both sides) on Sunday afternoon, which wasn't too bad but the painkillers (paracetemol + ibuprofen) were doing nothing for. On Monday, it moved to one side (did swap a couple of times) and got worse and worse during the day, but would sometimes almost stop hurting at times. Monday night, couldn't sleep because the pain wouldn't stop. Painkillers were doing nothing. Tuesday morning (today), its even worse. Felt dizzy standing up, I'd had nosebleeds in my sleep (not bad ones), my sinuses, which had been fine, were almost blocked.

I was investigating my medicine cupboard, hoping I'd skipped over some codiene on a previous migraine hunt, and found some stuff I'd bought by accident a while ago, paracetemol + antihistamines for sinus/allergy. I took 2 of those and 2 normal paracetemol, and within half an hour I was feeling better. It wasn't precription, so I'm sure it only had weak antihistamines, but it seemed to do it. An hour later I wasn't photophobic and the noise at the shopping centre didn't phase me at all. Right now I'm feeling groggy and foggy, but not in pain.

I think tomorrow I might get the doctor to do an allergy blood test.

Simply-V Newbie
I think tomorrow I might get the doctor to do an allergy blood test.

That is a very good idea. Please keep us posted on how things are going. Until then, keep your medicine cabinet stocked with antihistamines. :)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

    2. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

    3. - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

    4. - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

    5. - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,870
    • Most Online (within 30 mins)
      7,748

    KRISTENE
    Newest Member
    KRISTENE
    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
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
×
×
  • 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.