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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Help I Still Have Headaches
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18 posts in this topic

hi everyone,

i have been gluten-free for 2 and half months now. was tested neagative with a biopy. ate gluten on purpose today. man i regretted every bite. i was in the bathroom for the afternoon. so this just means to me that i'm staying on a gluten-free diet no matter what.

But my main reason for posting i have been suffereing headaches everyday for the last 5 months now. i took a leave of absence from work. waiting for a nerologist apt (here in Canada we wait a long time). i cut down coffee to one a day. i quit smoking. I'm taking 75 mg of topirmate which are just taking the edge of the pain away. my family dr doesn't want to up it due to me having brain fog. i stopped driving. (not safe for me or others around me)

i don't know what else to do. i just want to sleep, i sleep all the time like 12-14 hours a day plus naps.

so next is food, i've been reading here eating food for 4 days and then see how you feel. well if i already have the headache how will i know if i feel better or not???? i don't eat sugar due to diabetes. i don't eat choclate heared it was a trigger for headaches. HELP i don't know what else to do. i'm going crazy i want my life back.

any other ideas???? i'm ready to read and take advise.

i want to be headache free for once and for all.

the gi symptoms are ok (well after this gluten get out of the way but hey that's my own fault)

MIA :)

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The frustration you are feeling must be awful. Headaches and lack of sleep are enough to drive someone up the wall. I had a biopsy last year and it came back negative. I continued to eat gluten foods and because terribly sick everytime with headaches and digestive issues. Finally, I cut everything gluten out on my own and slowly started feeling better. As of last months bloodwork, I was celiac. My doctor told me that the headaches could be because gluten free foods can be higher in sodium and make you dehydrated. Not sure if this is true or not, but I have been trying to drink more water everyday. I also found that doing like 10 minutes or more of cardio exercise a day eases my headaches. I hope that you feel better soon.

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First off, topamax isn't the only migraine/headache preventative on the market. And it doesn't work for everyone. For me? It made them drastically worse, with the brain fog you're describing and the exhaustion. Because of the brain fog, my doc was worried about the possibility of seizures; I find it ironic that a side effect of a seizure drug is that it can cause seizures. If you're having brain fog, it's probably time to taper down and off so that you can try something else. Off the top of my head: verapamil, lamictal, elavil, and norotryptiline are all known to help prevent migraines. Those aren't the only ones, of course, but they are ones that have either been suggested to me (noro) or that I've used (all the rest and topamax).

You didn't mention abortives--is there a reason why your doctor hasn't put you on any? Even if what's going on doesn't count as a migraine, fioricet is known to help with tension headaches and cluster headaches. Midrin is as well, if I remember correctly. Muscle relaxants might work.

And sometimes it takes a cocktail to kill the migraines. I'm using verapamil and lamictal at the moment, and it's a combo that works for me. I'm on two different types of abortive drugs, Imitrex in 50mg and 100mg and Maxalt in 10mg. That said, meds aren't the only thing that I do to combat headaches and migraines.

You have to understand: I've been where you are and I couldn't afford to take time off. I'm a college student and I had a daily, continuous migraine from November of 2008 to (late) June of 2009. I (somehow) pulled decent grades last year, though I was also as stoned out of my mind as I could be to stay-semi functional. Yay for painkillers. Because I had no other choice, I had to come up with coping mechanisms, play drug roulette, and figure out what abortives worked for me.

I also knew I couldn't continue functioning for another year. I found a chiropractor who could relieve some of the pain in my spine that was causing (some) of the problems. I worked with a nutritionist to figure out what headache/migraine triggers could be setting me off. And I identified at least 3 triggers, though I suspect that there are more.

http://www.healthcentral.com/migraine/triggers-29502-5.html This is more-or-less the elimination diet I used and I went off of every single food listed for a month before I tried adding any of them back. I felt better than I have in years. The migraines decreased dramatically and eventually disappeared--or at least, what I count as disappeared--between diet, the chiro, yoga, and the med I was on at the time. I went from daily to one or two a month.

It isn't a cure, unfortunately. I'm better, but I still get them. I haven't had a repeat of a daily continuous migraine in a whopping month and a half, but that one was the first I'd had since June. I've had to change my meds twice since then. I use different abortives. I've changed neurologists again because the last one was...unique. I'm going to be going back on the elimination diet again, seeing if there are other foods I've missed. I sleep more than every other college student I know so that I don't set off a migraine from lack of sleep.

However, I'm functional again. And that was what I wanted desperately a year ago.

I hope some of that helps.

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AKcollegestudent, what is abortives? my dr doesn't want to take me off of topirmate till i see a nerologist.

i don't have the energy to even excerise 5 minutes let alone 10 extra minutes. my mother-in-law wants me to get up and out excerise or at least walk but i don't want to. when i go out to the store with my hubby that tires me out so much i need a nap.

i give you alot of credit i don't know how you went to school in all this pain. i can't handle it.

i started seeing a rmt (registarted massage threpist). no help there. have an apt to see an allergist in july.

how much do you sleep? maybe i sleep too long? i don't know but when i sleep it doesn't hurt.

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As well as the Health Central site, I just posted these two links on diet and migraines to another headache thread. For me, MSG is a trigger. These can give you ideas to try, and maybe something to take to the doctor to help talk about diet along with meds.

http://www.headaches.org/education/Headache_Topic_Sheets/Low_Tyramine_Diet_for_Migraine_-_PDF-115k

http://www.nutrition4health.org/nohanews/NNS02DietMigraineHeadaches.htm

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Having headaches and low energy was 1 of the many symptoms I had before going gluten free. You may want to try adding B2, B12 and vitamin d to your diet. I was very deficient in each of these by the time I was diagnosed with celiac. Once I started taking these vitamins and being gluten free my headaches are gone and my energy is up. You should have your doctor check all your levels. Hope this helps!

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i am taking vitamin b 100 complex, a multi vitamin, magnesium, iron (for anemia) and vitamin d. sorry i for got to post that earlier

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AKcollegestudent, what is abortives? my dr doesn't want to take me off of topirmate till i see a nerologist.

Miaryan, my response got very long, so I'm PMing you.

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hi everyone,

i have been gluten-free for 2 and half months now. was tested neagative with a biopy. ate gluten on purpose today. man i regretted every bite. i was in the bathroom for the afternoon. so this just means to me that i'm staying on a gluten-free diet no matter what.

But my main reason for posting i have been suffereing headaches everyday for the last 5 months now. i took a leave of absence from work. waiting for a nerologist apt (here in Canada we wait a long time). i cut down coffee to one a day. i quit smoking. I'm taking 75 mg of topirmate which are just taking the edge of the pain away. my family dr doesn't want to up it due to me having brain fog. i stopped driving. (not safe for me or others around me)

i don't know what else to do. i just want to sleep, i sleep all the time like 12-14 hours a day plus naps.

so next is food, i've been reading here eating food for 4 days and then see how you feel. well if i already have the headache how will i know if i feel better or not???? i don't eat sugar due to diabetes. i don't eat choclate heared it was a trigger for headaches. HELP i don't know what else to do. i'm going crazy i want my life back.

any other ideas???? i'm ready to read and take advise.

i want to be headache free for once and for all.

the gi symptoms are ok (well after this gluten get out of the way but hey that's my own fault)

MIA :)

I also take Topamax to ward off migraine, and I take imitrex when I get them. Imitrex works really well for me, but I know a lot of people don't get relief from it.

Since this is a fairly new symptom for you and it's so extreme, I am suspicious that it is a neuro problem, not a food problem. If they are debilitating you so much that you can't work or drive, I can't believe you aren't first in line to get an MRI! How long has it been since you've seen your family doc? Does she know how bad your symptoms are? Does she know you can't work or drive, and that you sleep so much? These are very suspicious neuro symptoms. Yes, food can do this, too. But you should get an MRI to rule out other very serious conditions.

Good luck.

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i see my family dr every week!!!! i complain every week!!! i got a MRI done and it came out clear. waiting for a nerologist got a apt for november 25th told him i want one sooner so waiting for him to find one that is closer i cant stant this pain any more going crazy. i'm in so much pain. running out of options on my own.

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i see my family dr every week!!!! i complain every week!!! i got a MRI done and it came out clear. waiting for a nerologist got a apt for november 25th told him i want one sooner so waiting for him to find one that is closer i cant stant this pain any more going crazy. i'm in so much pain. running out of options on my own.

You sound so miserable. :-( It's rotten news you have to wait until November, and I'll cross my fingers that you get in sooner. 5 months is much too long to be in constant pain, and it must be frustrating to know that you have to wait so much longer to see the neuro. I'm sorry for what you're going through.

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i got great news today i got a new apt for a nerologist on june 14th. i can't believe its a month away. hopefully i'll get better. cross your fingers!!!!

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good luck! gluten intolerance isn't the only thing that can give you headaches. I developed chronic migraines AFTER going gluten free.

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I used to get shocking migraines. They went away when I changed my lifestyle. I stopped eating processed foods and junk food and started cooking healthy food from scratch. My migraines went away and have never come back. It's been seven wonderful years since then with not one migraine.

Looking back, I can see that I was putting major amounts of toxins into my body. It's no wonder that my body reacted.

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Migraines could be a reaction to food that's not an allergy, but just a sensitivity.

Kind of like your gluten experience - just because the test hasn't found an allergy or disease that's causing an issue, doesn't mean the food isn't affecting you. Many people I've met who are sensitive to peanuts get migraines from them, myself included. When I've had them a couple times, I start getting more sensitive, so even foods that are processed with peanuts will set me off. I also get migraines from sugar cane (which I have a mild allergy to) and other nuts and legumes. I get ear aches from citrus, too. Weird stuff.

If you have a reaction to something like corn, you'd be reacting every day. Cornstarch is usually added to iodized salt as an anti-caking agent, it's in dextrose, it's what the bacteria that make citric acid usually feed off of, so it can contaminate that, too. If you are very sensitive to it, you'd get this stuff every day. Or if there was more than one food giving you this problem (which was my issue) you'd have migraines every day.

I also know some people who get migraines from environmental allergens that they get on their skin, like their shampoos or lotions or detergents.

The way I figured out what was bothering me? I ended up fasting for about a day or two (not on purpose, I was just so sick I could barely eat!), and then I added in foods one at a time, and recorded what every ingredient was, down to the oils and salt brands. And I recorded how I felt at what times during the day(some reactions for me happen 24 hours later, without fail). An important part of this, for me, was to not eat any single food more than once in three days. That way, if there was a reaction, I'd notice it as it would be spaced out.

This is the way allergists used to diagnose us, before they discovered IgE. They would do an elimination diet, and if you felt bad after a food, you stopped eating it. I sometimes wish they would still do this more often, because I keep meeting so many people that have problems with foods that aren't officially allergies, so they don't get diagnosed. In any case, this might be worth a try for you, especially if you already have a known food issue.

Good luck to you!! I hope you find the answer soon and can overcome this.

hi everyone,

i have been gluten-free for 2 and half months now. was tested neagative with a biopy. ate gluten on purpose today. man i regretted every bite. i was in the bathroom for the afternoon. so this just means to me that i'm staying on a gluten-free diet no matter what.

But my main reason for posting i have been suffereing headaches everyday for the last 5 months now. i took a leave of absence from work. waiting for a nerologist apt (here in Canada we wait a long time). i cut down coffee to one a day. i quit smoking. I'm taking 75 mg of topirmate which are just taking the edge of the pain away. my family dr doesn't want to up it due to me having brain fog. i stopped driving. (not safe for me or others around me)

i don't know what else to do. i just want to sleep, i sleep all the time like 12-14 hours a day plus naps.

so next is food, i've been reading here eating food for 4 days and then see how you feel. well if i already have the headache how will i know if i feel better or not???? i don't eat sugar due to diabetes. i don't eat choclate heared it was a trigger for headaches. HELP i don't know what else to do. i'm going crazy i want my life back.

any other ideas???? i'm ready to read and take advise.

i want to be headache free for once and for all.

the gi symptoms are ok (well after this gluten get out of the way but hey that's my own fault)

MIA :)

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Have you tried physical therapy for your migraines? I have severe migraines and since going in for physical therapy I have seen a HUGE improvement. Mine are caused in part by stress, gluten, and severe muscle tightness. I have a hyper-laxity syndrome which makes things pop out of joint when they shouldn't and there are 4 vertebrae that are usually out of whack if I am having repeated migraines. I tried all the drugs and nothing except maxalt daily worked (not made for daily use). It was terrible.

I hope it gets better for you!!

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i'm sorry but it's seems like so much work!!!!! i wish their was something out there that i could eat that had no gluten and isn't bothersome to my body but was healthy. i'm at the point where i just want to eat the same thing over and over again and not have to worry about it bothering me in anyway. like my gi system or head.

i go to a rmt every other week! that helps to a point! it relieves stress but doesn't get rid of the headache. i'm even more sore for two days after but it's worth the pain.

I'm sooo tired and sick of feeling so SH**Y!!! sad that i'm at the point that i don't have the energy to do anything anymore!! :(

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Topamax is an anti-epileptic med and those can disrupt thyroid function. It sure did mine... Anyway, be sure to get your thyroid checked.

Nest, try a dairy free trial as well. Many migraneurs report good resuts from this.

Check into an anti-inflammatory diet in general such as PaNu (this is totally compatible with gluten-free and CF)

I had chronic daily headache for nearly a year and many years of migraines. I am gluten-free CF and I no longer need topamax or I only use abortives (such as imitrex) very rarely with sudden, severe weather shifts.

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
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      I have not. I'll talk to my doctor about it
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