Headaches Persisting After Going Gluten-free

[jebus]

My question is for the doctors here - I'm a 49 year-old woman with Celiac having been diagnosed on September 1st and have been absolutely gluten-free since then. I still was sick and the people here were kind enough to advise me to also avoid dairy (which helps a lot). I've been on Synthroid for 16 years and have been treated for migraines and chronic (daily) tension headaches for about ten years. Why don't over-the-counter meds work on my headaches? My doctors have begun to look at me like I'm a junkie or something; when they refuse to refill the Butalbital (generic Fiorecet) for awhile, I just do without it and live with a half-headache constantly. Am I alone? Am I nuts? Many Celiac patients here have mentioned headaches and migraines; what's the connection? What's the answer to the pain relief problem? Or am I asking for too much?

Any advice you could give me would be most appreciated.

Thanks,

Jebus

[Ursa Major]

Jebus, I am not a doctor. I just want to let you know what stopped my migraines. I used to get very frequent migraines, and always had a headache. I found out that the migraines were caused by tomatoes. When I stopped eating them (as well as the rest of the nightshade family), my migraines went from at least one a week (and sometimes they lasted three weeks at a time, completely incapacitating me) to maybe once a month. Now they are caused by letting myself get overtired.

Also, no painkillers other than Tylenol and Codeine will help my headaches, because I have an intolerance to salicylates. Meaning that Aspirin and Ibuprofen make them worse (and could make me seriously ill).

Also, eliminating all lectins and all foods high (even moderately high) in salicylates has helped a great deal with my headaches.

I am not saying you necessarily have the same problems. But you really ought to do an elimination diet to try if intolerances other than gluten and dairy could be causing your constant headache and your migraines.

For more information on lectins (of which gluten is one) and salicylates check out the links in my signature.

[tarnalberry]

OTC meds won't help migraines - they don't address the need to constrict the expanded blood vessels in the brain. If you've got chronic migraines, it's worth following Ursula's advice and trying to track down any potential food offenders, but there's more that can cause migraines. I believe my chronic migraines are related to barometric pressure changes (as is the case for others in my family), but there are other things that can cause it as well.

Beyond that, I'm concerned that you haven't gotten any additional support from your doctors in addressing the migraines. Caffeine, the primary ingredient in fiorcet that *might* help the migraine, does not work for everyone by any means, and there are much better treatment migraine medications these days. The problem with treatment migraine medications, however, is that if you don't take them early enough in the process, they won't be very helpful at all; the window of effectivity is very small. Additionally, you have to find the one you respond to, and if you become tolerant to one, you may need to switch. (It doesn't help that they're pretty darn pricey.)

If the migraines are bad enough (and it's worth trying to determine if the tension headaches are really atypical migraines - not all migraines have auras and all that), you can also look into daily preventative treatment. I am on one of those (Topamax, in my case), and it can be quite helpful, if you find the one that works for you.

If you're doctor isn't continuing to treat your migraines, consider finding a new doctor - you should not have to suffer with them without having gone through a large number of iterations working through a number of options.

[mamabear]

My question is for the doctors here - I'm a 49 year-old woman with Celiac having been diagnosed on September 1st and have been absolutely gluten-free since then. I still was sick and the people here were kind enough to advise me to also avoid dairy (which helps a lot). I've been on Synthroid for 16 years and have been treated for migraines and chronic (daily) tension headaches for about ten years. Why don't over-the-counter meds work on my headaches? My doctors have begun to look at me like I'm a junkie or something; when they refuse to refill the Butalbital (generic Fiorecet) for awhile, I just do without it and live with a half-headache constantly. Am I alone? Am I nuts? Many Celiac patients here have mentioned headaches and migraines; what's the connection? What's the answer to the pain relief problem? Or am I asking for too much?

Any advice you could give me would be most appreciated.

Thanks,

Jebus

Great advice from Tiffany and Ursula. I also would suggest being sure you have enough protein in your diet to help keep blood sugars stable......too many carbs/sweets may send sugars up and down and precipitate headaches. I guess you have had a full neurological workup if the headaches have occurred for 10 years. Situations can change and you may need a neurologist to reevaluate. Other triggers can be hormonal.....could you be perimenopausal? Also sleep disturbance....any chance of sleep apnea/snoring? Also rebound headaches occur after daily pain medication for headaches...doesn't have to be prescription type...even OTC. No great solution to that however. Hope this also gives you a few ideas.

[tarnalberry]

Great advice from Tiffany and Ursula. I also would suggest being sure you have enough protein in your diet to help keep blood sugars stable......too many carbs/sweets may send sugars up and down and precipitate headaches. I guess you have had a full neurological workup if the headaches have occurred for 10 years. Situations can change and you may need a neurologist to reevaluate. Other triggers can be hormonal.....could you be perimenopausal? Also sleep disturbance....any chance of sleep apnea/snoring? Also rebound headaches occur after daily pain medication for headaches...doesn't have to be prescription type...even OTC. No great solution to that however. Hope this also gives you a few ideas.

Fab points! My hypoglycemic symptoms definitely give me headache issues (thought they are different from migraines), and I also had to rule out hormone issues, and know that too little sleep leaves me more susceptible, though is insufficient for a trigger on it's own. They even did a sinus MRI on me, to rule out chronic sinusitis, given my asthma/allergy background. The fact that my migraines changed (they had never been this often, and the presentation changed) threw me off for quite a while getting it dealt with, but I am *so* glad that I did! I still get them on occasion, but they are about 85% less intense!

[Guest cassidy]

I used to constantly have headaches before going gluten-free. The only thing that helped them was going to a chiropractor that said they were liver headaches. I didn't really understand put he would push around my liver, it would start gurgling and I would feel better in minutes. He wasn't a typical chiropractor - he specialized in headaches but he really helped when nothing else did. Since your liver processes toxins it makes sense that the toxic gluten I was eating was overwhelming my liver.

They do make liver cleansing products that you can get at the health food store. You could try a colon cleanse and then do a liver cleanse and see if it helps. Those are benefical even if they don't stop your headaches.

I also found that I had intolerances to other foods. These other foods didn't cause my headaches but they did cause other problems.

[jebus]

Ursula,

I forgot to mention when I asked my headache question that I do take Topomax twice a day as a migraine preventative, so I haven't had one of my 12-hour, head-exploding, hide in a dark silent room, please let me die migraines for quite a long time, thankfully. It's the daily, persistent, nagging ones, like a band around my head or one of my eyes trying to pop out (lovely picture, but that's what they feel like). My forehead is sore to the touch sometimes, also. My husband reminded me today that if I usually forget to take my B-12, that could be causing headaches - is he correct? I try to remember at the end of each day (can't take in the a.m. with Synthroid). I appreciate your imput regarding nightshade foods, but I'm hesitant to remove potatoes and tomatoes, since I'm down to so few "safe" foods at this point. I'll try to never skip a whopping daily dose of B-12 and see if, with time, that helps. What do you, and anyone else reading this, think of this plan? Also, someone else mentioned perimopause - yes, I am diagnosed as perimenopausal and have been since about age 40, which confuses me - my ob-gyn said it could last for ten years or so until the real thing kicked in (I'm getting closer - yippee!). So hormonal swings can cause the headaches too? So I need a sex change and I'll be okay? Better consult my husband again. Thanks folks...

Jebus

p.s. my real name is Ruthie

[tarnalberry]

It's the daily, persistent, nagging ones, like a band around my head or one of my eyes trying to pop out (lovely picture, but that's what they feel like). My forehead is sore to the touch sometimes, also.

Have you been checked for sinus issues?

[Budew]

Ruthie-

Sorry about the headaches but thanks for asking the question. Migraines are my biggest fear right now. I am on the elimination diet. Everytime I tried a grain I had migraines that lasted 3-5 days. Same for tapioca.

I don't eat the nightshades. I cut them out a year ago and I must say that potato and tomato are the two foods I wish I could get back someday. I cut them out because of the flushing and rashes they caused. I never connected them to the headaches but will watch when I test them next summer. Jerusalem artichokes are a good substitute for potato. I finally stopped thinking I could have just a little and completely cut them out about 4 months ago.

Ursula turned me onto the salicylate idea. That has helped the most. The low grade constant headache is much less intense but like you always there. I tried accupuncture last week and had relief for 3 days. Only problem is I am very sensitive to nickel and have tiny sores at the needle sites now. I can't decide to try one more time this week of quit the treatments. The sores aren't too bad yet. I also cut out the legumes because of the lectins. My doctor suggests I add them back but I am scared to. I don't plan to add anything until I get rid of the pain.

I did the sinus scan too. My sinus problem cleared with the low salicylate diet. I have checked all the usual food triggers. The only trigger I still intake is caffine. It just does not appear to be related so I continue to have a cup of coffee in the morning. I was caffine free 6 months, the headaches were coming on every couple weeks during that time so I added back a bit of caffine.

Like Casey the chiro has been helpful but I can't tolerate the treatments when I have a full blown migraine.

I wonder about the hormonal connection. I am 46. What kind of tests to they do? What kind of treatment?

I am on fentanyl patch now. I have constant flat muscle pain as well. I am trying to get off the pain meds. My doctor threatens to stop the perscription every month. I just don't think he understands how debilitating this is.

I bought a massage chair. Began using it yesterday. I hope it helps. Too soon to know. I also put in a whirlpool tub. I can't use it if I am on the patch. I chose to use the patch to get relief that bypassed my digestive system.

Nothing seems to help. So my plan is to eat very safe for 4 months. I hope that cutting the toxins will heal my system and the pain will stop as a result. I found that the zinc and B complex uspet my stomach. I quit the zinc and reduced the b to 50 mg. so far so good. I also began tanning 10 minutes twice a week. It seems to have some effect on the pain in my hands and feet. I have not gotten back the blood test results that should indicate a D deficiency. I decided to try treatment in the

meantime.

I took amitryptaline for a month. It upset my stomach more than helping. It gave me energy that would not quit.

Right now I am trying not to take oral meds except levothyroxine, B complex, l-glutamine, and lactoascidophillous with FOS. I plan to eat grain, legume, egg, meat, iodine, nightshade free with a focus on very low salicylates for 4 months. I am also looking into watching hystamine producing foods. Ice is my best friend.

The past 2 months the migraines have been as you decribed, sit in a silent dark room wanting to die. I went to emergency a couple weeks ago after 4 days in the dark on ice. No help there either.

Good luck finding relief.

[sonja69]

hi jebus,

before my tests I trifolded my gluten inake o get 'better' results, since I was not eating much gluten before. the 4 weeks with high glutenintake I had terrible headaches which I had never before in my life. I read about iron defiency and headaches. after 3 days glutenfree the headache was still therem but weaker. well, I took an iron supplement, though my blood work did not show iron deficiency.

the headache went away about 30 minutes after tking the pill. no aspirin had helped before, but the iron did. I tested it for some days, everytime with headaches, I took the iron pill, headaches were gone after short while.

you may try this and see if it works for you too.

good luck!

Sonja

[ArtGirl]

I'll add my experience here, addressing the tension headaches. I don't get typical migraines but do have some light sensitivity when they're bad. I used to have 24 hr headaches that lasted for days. Chiropractic helped some but didn't address the cause (the bone-cruncher type chiropractor).

All my headaches went away when I started supplementing with magnesium (in a cal/mag complex). I had fibromyalgia and it is documented that people with this syndrome have lower magnesium levels in their blood. IF this were a factor for you, then the same thing might work for you.

I am not trying to say that all migraines are caused by a magnesium deficiency - just wanted to share my experience in case this would be helpful for someone.

[jebus]

Thank you all for your helpful suggestions regarding headaches. I've decided to try them all for one month each, so I'll know, hopefully, which, if any, is most effective; lots of B-12 first, followed by magnesium, then calcium supplements. I'll keep the board posted with results in case it may help someone else. The thought of living without painkillers (and snide looks from doctors, nurses, pharmacists, etc.) is fabulous...keep your fingers crossed!

Jebus (a.k.a. Ruthie)

[ArtGirl]

...followed by magnesium, then calcium supplements.

you need to take calcium with the magnesium at a ratio of 2-cal/1-mag. (If you just take the magnesium your body will take calcium from your own store to break down the magnesium). You usually find the cal/mag combinations at 1,000mg calcium/500mg magnesium. I take one with breakfast, and one with supper, and have in the past taken a third one with lunch.

[sfm]

I went to a neurologist several years ago for frequent migraines. He advised me to begin taking magnesium supplements in a higher than normal dosage, particularly around that time of the month.

The problem with taking either over the counter drugs or things like fioricet or tylenol with codeines is that repeated use can actually cause headaches to become more frequent, particularly over time.

The magnesium helped - my migraines have become much less frequent; however, that hormonal issue still remains, and that isn't really something where I can remove the "trigger" from my life. Weather also affects me (rainy weather/high pressure) - again, not something I can really control.

My children's pediatrician recently suggested a children's magnesium supplement when my son (7) began having frequent headaches. It has helped him as well, so there must be something to it.

Good luck - I know how debilitating migraines can be.

Sheryll

[RiceGuy]

Lots of good advice from the members here as usual.

I used to suffer from frequent debilitating migraines. What I did to eliminate them was to remove all forms of yeast and processed sugars. I really never ate much sugars, so no biggie there, but it does help to get yeast such as candida under control. I also took caprylic acid for a little while, which seemed to help speed recovery too. I noticed a very pronounced improvement in a matter of weeks, and over time I've seen all sorts of other lingering problems disappear as a result of staying off all yeasts (and of course I don't eat processed sugar). I'd recommend checking into the possibility of an intestinal yeast overgrowth. Just Google for candida and you'll get more info than you'll ever need.

One thing I've come to learn since then however, is that MSG is a known cause of migraines. This may have actually been part of the problem I had, as yeasts often contain a form of MSG. It is rarely properly listed on the label, so you have to know what to look out for in order to avoid it. Here is a link to one of the best sources of information I know of on MSG: Open Original Shared Link

I hope you get well soon!

[sewfunky]

I'm 25 and newly gluten-free. I've had migraines since the ago of 8. Since being gluten-free, I've had less migraines. At first there really wasn't a change, but now I've noticed that my moderate migraines have gone and I only have severe migraines. I was taking Topamax because I would have 4 migraines a week, but now I've stopped taking it and only taking my resuce med as needed.

Like the other posts say, magnesium is recommended by all neurologists and eliminate all MSG. I didn't realize that MSG was in my salad dressing until I did a little research.