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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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jebus

Headaches In Celiac Patients

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Hi everyone, since I'm new here, can anyone tell me if headaches are a common symptom? I've been treated for migraines and tension headaches for years and was diagnosed with Celiac disease on September 1st. Thanks for the input.

Jebus

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Guest cassidy

Headaches are a common symptom. I suffered from them for years. They were the type where you just wanted to curl into a ball and squeeze your head because it hurt so bad you couldn't do anything. Now, when I'm glutened I get a headache that starts about a day after the glutening and lasts for up to 24 hours.

I went to a chiropractor before (after trying all sorts of things) and he could get rid of the headaches. He called them liver headaches and would push near my liver and it would start gurgling and the headache would go away - it was a little more complicated than that. I haven't tried this since being gluten-free since they only last for a day and I would have to be worked in right away. I guess it makes sense if our bodies are being poisoned and the liver clears toxins from the body.

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I was at my wit's end trying to find a trigger for my migraines when I went gluten free as a last resort.

While it only cut my headaches back a little bit, I realized that my stomach felt great!

Courtney

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Guest adamssa

hi jebus,

before going gluten free, i would get headaches EVERYDAY. it was some kind of hell...but now, i am o.k. :) as far as headaches go except for terrible sinus problems. but, to help with it you may want to consider taking calcium and/or magnesium. i also had to detox my liver with silymarin. your liver can get toxic from so much time of bad digestion and detoxing it will help a lot. i am willing to bet that gluten free living will help you, but additional treatments can really help repair the damage giving you the problems. a good nutritional balancer or holistic doctor might be able to help you even more to figure out what areas you specifically may need to address.

best,

sara

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WOW :blink: I am impressed ! Do you mean my 30 years of DAILY headaches could be a Gluten symptom ? And the migraine I had yesterday could be related to the gluten I had 4 days ago ????

My migraines started about 15 years ago. I used to get about 3 or 4 attacks a year of those plus the daily headaches.

How long does it take to be gluten free to be rid of the headaches.?

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Hi-

I'm going on 6 weeks gluten free and am still having migraines. Last spring when I went off gluten the first time, my migraines were awful in the first two weeks but by about 8 weeks I started feeling better. I did go back on gluten over the summer for the blood work which came back positive. I'm hopeful that my migraines are caused by gluten, I'd give up just about anything to make them go away.

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Guest adamssa

ahh, i'm not sure exactly when the headaches started to go away, because i had both tension -migraine headches and sinus headaches that remained after i got rid of the other kind. but, i've been gluten free since the spring...by the summer i had gotten rid of all but the sinus. it will vary from person to person, but i bet a few months would make a difference. i also noticed that i start getting headaches again when i stop taking calcium and magnesium.

good luck

sara

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I am completely on the same page as everyone..i was diagnosed with migraines when i was about 15 but previously always had headaches....and lately they have been outrageous... same with back in the spring the summer was more hear and there but im not sure how i was eating...

anyways I was recently diagnosed with Celiac and so now I am curious if all this time instead of being on imitrex..bc most doctors fix everything with pills...i should have been watchin my diet all along....its amazing how you connect the puzzle pieces after the fact....we will see how long mine last im hoping not much longer :) take care everyone

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Its amazing how the puzzle pieces fit, I just last week found out about celiac disease so I just stopped eating Gluten this week. I am 98% I have thes without even going to the doctor, because I have almost all symptoms everyone talks about here, and I've always thought it was food related.

I suffer from Migraines as well and take Imitrex injections which work most of the time, if the migraine is really bad it might not work. About two weeks ago I went to the doctor because when I get migraines I vomit, and i always thought it was drainage from sinus problems. I had sinus surgery which cleared most of my sinus issues. And I still vomit with a headache, I had the thought that my vomitting was not drainage but bile. My doctor agreed. Now...if your liver cleanses toxins from your body, this makes even more sense.

My doctor said that it was normal for migraines to vomit bile, I thought it maybe normal for migraines but its not normal for humans. :blink: There has to be something causing it.

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i have migraines as well, and also before was having daily headaches. after about 2-3 weeks gluten lite the headaches were still the same, but when i went gluten free- they tapered down after about the first week. i am only two weeks gluten free so this week has been my first without headaches (the daily there just enough to put you in pain, but you can still function, not a migraine) it feels so great. also this week it seems my thinking is sharper. i am quicker to say what i am thinking and less forgetful. 'stress' on -less- forgetful....

i haven't had a migraine yet. i was having those about once every other month or so, i am not quite that long since my last...

best wishes!!

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Thankfully, I don't get migraines. But I used to wake up every morning with a headache that started at the base of my skull. It caused me to be nauseous, and often woke me up.

When I went gluten-free, those headaches went away. I've only had a couple since, and it's been almost a year and a half. I don't know exactly what they were, but I'm so glad they're gone!

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I get terrible headaches as well. I think they may be classified as migraines, but they connect to tension in my neck and shoulders. They seem to worsen with cold weather and other things that would change the size of my bloos vessels like wine or caffeine.

I too hoped they would go away with the gluten-free diet, but it has been over a year, and I still get them, sorry to tell you. I suspect it may be a separate autoimmune problem - I also get reynauds - so my blood vessels seem to overreact to stimuli.

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Hi Julie - have you talked to your doc about your hormones? I get migraines from gluten - but I also get virtually identical migraines when my hormones do the wacky once a month (and not necessarily at that time). . .my doc put me on hormone supplements which has pretty much eliminated the migraines (although it took a while to work out the right dose), though I still get one occasionally when I accidentally get glutened, or when I forget to eat the whole day and my blood sugar crashes.

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I suffered from migraines and other headaches from the time I was 13 until I went gluten-free in June of 2002. It was several weeks after going gluten-free and I realized that I had not had a headache. I usually had 2-3 headaches a week. I can even eat the things that triggered migraines before such as wine, cheese, chocolate! I am 60 now and suffered a lot of years with those headaches!!!!! Occasionally I will get a headache but I don't even need to take an aspirin now because the pain is NOTHING compared to the headaches I used to have! Lots of great things happen when you go gluten-free! ... plus you don't have to know where the bathroom is every time you go out!!!

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I have been gluten-free for 4 months and still have the headaches. So ...another reason ? I think they are a bit better but I still get the daily dull pain type. When I was glutened last month I got a migraine the next day. I normally only get 2 migraines a year so I thought that was significient.

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Heres my 2 cents worth, I have been having migraines for about 20 yrs and I thought it was because of weather change etc., I used to wish that I could just rip out my eye and I would feel better. The sick stomach , turn all the lights off close my eyes only helped so much. They would last anywhere from 1 day to 3 days. I have been gluten free for 3.5 months and not one migraine, knock on wood. I used to get them at least once or twice a month. I love it

Rebecca :D

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I too have had headaches for at least 20 years and have recently gone gluten free. My headaches have persisted but are getting better. The one other big trigger for me I'm finding is chocolate . Now that gluten is not a factor it seems that it's easier to pin point the other triggers or sensitivities.

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Hi,

I started getting the headaches in my 30's long before I was diagnosed with celiac. I went through 2 nasoplasty surgeries thinking they were sinus related. The headaches got progressively worse over the years and would last 3 days and I would be noushsous as well. My doctors tried Imitrix but the only thing that helped was Demerol and it only helped the first day then the headache was right back. Finally I went to an Urgent Care clinic with a full blown headache with nausea to get a shot of Demerol and a doctor who normally headed a pain clinic asked if he could try something else which had to administered by IV drip at first. I said yes thinking it probably would not work. But after about a half an hour, I walked out with no headache or nausea.

The medication is DHE 45 and the generic is Dihydroergotamine Mesylate Injection, USP. It has to be injected inter-muscular in the thigh at the onset of the headache, but it is the only thing that has worked for me.

I was not diagnosed with celiac until being treated for Hepatitis C which caused the celiac to become full blown and put me in the hospital. After this I had some really bad episodes of headaches; the worse lasting for about 15 days. It was a very stressful time in my life and occurred in the months of June and July, so I think it was a mixture of allergies and celiac aggregated by stress. Usually at their worse the headaches came once or twice a month. At the time I had a job where I could take time off without pay or use vacation time or I would have been let go.

When that job left the state, I finally had to apply for disability and the judge was amazed I was able to work as long as i did. The headaches have gotten less frequent with age and strict dieting, but I still get them. If I take the shot as soon as I feel a headache coming on, it will stop it after a couple of hours and the next day it will be gone.

If you have high blood pressure you may not be able to use this medication. I hope this information helps.

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I've been gluten-free for about 2 months. I still get headaches, but not as often. I've had maybe 1 or 2 migraines since going gluten-free. Mine headaches alway start above one of my eyebrows and if it goes into a migraine, goes from my eyebrow down the side of my head to my ear. Always the same. They seem to be worse around my period or when barometric pressure changes.

They are, however, better since going gluten-free. :D So yay for that. Also, I just feel a whole lot better since going gluten-free, just waiting for my energy to return.

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The headaches I got were absolutely bar none the worst symptom, as in most debilitating. And I am factoring in multiple bouts of cramping diarreah. They were the most painful thing. I would be on my knees, pulling my hair with tears streaming down my face. Nothing would touch them. Nothing. Even when I had my gallbladder out or my hysterectomy, they gave me morphine. Morphine did not touch that headache. That is bad.

And they were getting worse-- more frequent. I was missing work. I was missing life.

And it happened that at the end I was down to eating "simple starches" and getting sicker and sicker.

For example, I would eat spaghetti and get sick. So I would think-- wow! It must be the spices or tomto sauce. I guess I won't eat those any more. Or I would eat a salad and get sick. So I would think-- wow! I must not be able to digest lettuce! I guess I better stop eating that. In the end I would eat toast, crackers, noodles in broth-- that sort of thing. My God! I went for over 20 years like this.

And I was getting these hideous headaches five times a week. I might only have one of two good days. Life stank. I almost lost it.

But since going gluten-free (Dec. 1 will be one year!) tyhe headaches are gone. I never once, never ever, got a bad one like that again. For that alone I will never eat another bagel.

Good luck!

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Hi, I am the same age, 60, and have had great relief from headache since going gluten free. Of course every now and then, when out and being sociable I eat something containing gluten and within a day or two wham! with the headache. Just wondering whether others notice an immediate reaction to gluten re headaches or like me, a delayed one.

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Before going gluten free I would buy a bottle of Advil about once a month.

I went gluten free in March 2011 and have not needed to buy any since then - still have half a bottle left. I get occasional headaches (usually sinus related) now and then, but nowhere near what was "normal" for me in the past.

I was also diagnosed with GERD - supposedly from taking too much advil - but those symptoms have gone away since being gluten free as well.

Cara

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I had both migraine and sinus headaches, usually multiple times per week. Since I went gluten-free about 4 months ago, I've had two headaches. I used to go through so much Excedrin that I'm sure it wasn't healthy.

I was also treated for GERD, and haven't had any of those problems since going gluten-free either.

Seems to be a common theme.

I used to suffer from extreme anxiety too, and that has lessened since going gluten-free, but I still get mild anxiety. Hopefully it will go away completely once my body is totally healed.

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I've had migraines for 20 years 3-5 times per week. I've been on numerous meds to control them but nothing worked long. I carry Shots with me in case it gets bad at work.

I started my gluten free journey 6 weeks ago and I've had 3 migraines in that time. Thing is I can point to accidental gluten ingestion each of those times. Although its challenging and I do miss bread I will gladly stay gluten free to rid myself of the migraines! :)

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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