Migraines and Celiac Disease (Gluten)

Specific Illnesses & Conditions VM/MAV
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Not sure if this has been touched on here or not, but today I viewed a seminar in which the presenter mentioned the connection between migraines and Celiac Disease. From time-to-time, certain folks on the MdDS Facebook site have mentioned feeling better while on a gluten-free diet. Quite honestly, I had discounted as nonsense any connection between dizziness and gluten intake. However, it appears there is some research to support the link- indirectly.

Apparently, it’s well documented there is an increased incidence of migraines in those with CD. (See ncbi.nlm.nih.gov/pubmed/11335703 (The clinical syndrome was dominated by progressive cerebellar ataxia with ataxia of stance and gait (100%), dysarthria (100%) and limb ataxia (97%). Oculomotor abnormalities were gaze-evoked nystagmus (66.7%), spontaneous nystagmus (33.3%), saccade slowing (25%) and upward gaze palsy (16.7%).)

I did find one article written by Italian researchers documenting a case of vertigo and nystagmus associated with Celiac Disease in an eleven year old girl. journals.lww.com/jpgn/pages/arti … e=Fulltext “In our patient, vertigo disappeared with a gluten-free diet, recurred promptly during a period of poor compliance, and thereafter disappeared with a strict gluten-free diet. In contrast, the bilateral nystagmus showed no improvement after 2 years of a gluten-free diet. Permanent neurologic damage or insufficient suppression of the immunologic process, despite strict a gluten-free diet, may explain this…”

As an aside, I read a fascinating article describing the speculations by a researcher at Mass General in Boston. He suspects CD can be triggered by aberrations in gut microbrial. nytimes.com/2013/02/24/opini … .html?_r=0 Changes in gut bacterial composition can occur due to a variety of events, including child birth.

For those who don’t know, Celiac Disease generally manifests with bowel “issues” such as bloating, diarrhea, & constipation, but it can also have no symptoms at all. CD is rare so I’m not suggesting that everyone with MAV has underlying Celiac Disease. However, for those who have tried everything else, trialing a gluten-free diet for a month or so may be worth a shot. Gluten is found is wheat, barley, rye, among other foods.

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there was someone on here awhile ago i think her name was prana she had this and got a lot better after going gluten free

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But it must be very hard to eat gluten free, isn’t gluten in almost everything?

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Gluten is in a lot of processed foods, so eating gluten free means simply eating a lot of stuff that’s fresh. Obviously you have to avoid the grains that contain gluten, and avoiding things like bread can be a challenge, but it’s not impossible to do especially these days with so much gluten free stuff available.

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Ok thanks! But how about pasta and rice? I would actually like to try a gluten free diet but I eat so much bread and porridge and pasta, rice etc. I don’t think I can change my diet so completely. Do you know what things are actually ok to eat, from a migraine and gluten perspective?

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I grew up a parent with Celiac Disease documented via biopsy (way back before it was popular), and, coincidentally, my husband also has confirmed CD. The diet is actually not that bad. The exception is that eating out in restaurants can be the most difficult scenario in which to be diet compliant. To be honest, it’s pretty tough since even eating “safe” items prepared on a griddle that has been used previously to make foods like pancakes can cause symptoms.

Here’s a link to the website that facilitated the information. glutenfreediet.ca/about_gf.php She’s in Canada and has lots of great educational material on her site.

At home, I generally prepare a protein dish (chicken, fish, lean beef), a green salad with homemade salad dressing, steamed vegetables and some fresh fruit. If I’m making something for the kids or myself with gluten (i.e., spaghetti), I’ll also cook a separate portion of gluten-free pasta for my husband. I make up large batches of a gluten-free flour mix with ingredients I buy at my local grocery store (or inexpensively at the Asian market) and substitute that when making baked goods for him.

One thing I did learn from this site is that one can develop CD at any stage in life. In fact, a typical NEW-onset patient with CD is in his/her 50s. This does not mean that the person has had CD his own life and is just now being diagnosed. There is something that changes (? gut flora) triggering an underlying propensity for CD into actual CD. There has been a four-fold increase in CD since the 1950s that is NOT simply do to better detection. Researchers have studied (frozen) serum taken from patients in the 1950s and have compared it to that from today’s population and noted changes related to CD. Obviously, genetics haven’t changed in two generations to account for this, so the environment plays a huge role.

I would like to stress that the vast majority of people with MAV do not have underlying issues with gluten. However, for those who have tried multiple meds and life-style changes without success, trialing a gluten-free diet for a few weeks would be harmless and worth a try, especially since the literature does support a possible link between CD and vertigo.

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Thanks a lot!

I also have CD in my family (an aunt) so i am a bit interested in trying this. As you said, maybe the probability is low but it can be worth trying:). Right now I am on a migraine diet where I try to exclude all the dangerous food that I know of. I am a bit sceptic that it will work because usually my symptoms don’t fluctuate with what I eat but are very constant. But I feel it is worth a try.:slight_smile:

Thanks!

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Makes no difference to my symptoms, dx Celiac’s.

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— Begin quote from “Ball123”

Ok thanks! But how about pasta and rice? I would actually like to try a gluten free diet but I eat so much bread and porridge and pasta, rice etc. I don’t think I can change my diet so completely. Do you know what things are actually ok to eat, from a migraine and gluten perspective?

— End quote

Rice is typically fine but pasta is a big ol gluten bomb. They do make rice based pastas for those with Celiac’s.

Also, if it runs in your family, what about just getting tested? While an intestinal biopsy is the gold standard, blood tests have a pretty good accuracy as long as you aren’t currently eating gluten free. Then you wouldn’t even need to bother with the diet changes if it comes back negative.

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— Begin quote from “DizzyForLife?”

— Begin quote from “Ball123”

Ok thanks! But how about pasta and rice? I would actually like to try a gluten free diet but I eat so much bread and porridge and pasta, rice etc. I don’t think I can change my diet so completely. Do you know what things are actually ok to eat, from a migraine and gluten perspective?

— End quote

Rice is typically fine but pasta is a big ol gluten bomb. They do make rice based pastas for those with Celiac’s.

Also, if it runs in your family, what about just getting tested? While an intestinal biopsy is the gold standard, blood tests have a pretty good accuracy as long as you aren’t currently eating gluten free. Then you wouldn’t even need to bother with the diet changes if it comes back negative.

— End quote

True, but what doctor will order the test and what insurance would pay for a test if a person is asymptomatic (i.e., no GI complaints). (Although one can have CD without having GI issues, it would be a tough sale to a doctor/insurance company.)

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Hi all,
Interesting thread… I was diagnosed with Celiac disease October of last year and have been following a gluten free diet since then. I was diagnosed via biopsy, genetic testing, and antibody testing. If I eat gluten now I get dizzy and experience imbalance,brain fog, flu like symptoms, extreme gastro issues and sometimes headaches. My Dr says its hard to distinguish what is caused by migraine and what may be gluten ataxia. I got vertigo off a cruise last August. I ate more bread (aka gluten) than I normally would on the ship. Then this last October I got diagnosed with celiac a week after returning to a normal diet after doing a juice cleanse for 5 days. I just mention that last part as I think the change in diet (the cleanse) caused the change in flora and then led to the big problem with gluten :(.
As for testing, my kids pediatrician signed off on my kids getting tested without question. There are about 300 potential celiac symptoms so if the Dr wants to help you it shouldn’t be a big deal to add to a blood panel. My parents got tested as well when they went for check ups. Im in the NE US-I’m not sure if other countries or individual insurance companies are stricter about this…
Estimates in the medical community are that 1 in 100 of European descent have it and only 10-15% have been diagnosed so its not that uncommon. I’ve read some articles about the genetically modified wheat causing more to get symptoms as the strains of wheat are so strong.
As for overlap with MAV, after gastro issues the next top complaints from Celiacs are related to Neuro issues, balance/dizziness etc. so it could be the disease is hitting the same part of the brain-or in some the celiac is causing symptoms that trigger MAV.
I do have concerns that I have some damage in my brain as I have some optical and balance issues that don’t come and go like some of my MAV symptoms.
If anyone here ever gets diagnosed, it’s a blessing to find out, not a curse. It has completely changed how I eat and I feel so much better for it! I didn’t realize how sick I was until I started getting better. I think it has helped with the MAV a great deal in conjunction with propranolol and ami…

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— Begin quote from “KennedyLane”

— Begin quote from “DizzyForLife?”

— Begin quote from “Ball123”

Ok thanks! But how about pasta and rice? I would actually like to try a gluten free diet but I eat so much bread and porridge and pasta, rice etc. I don’t think I can change my diet so completely. Do you know what things are actually ok to eat, from a migraine and gluten perspective?

— End quote

— End quote

Rice is typically fine but pasta is a big ol gluten bomb. They do make rice based pastas for those with Celiac’s.

Also, if it runs in your family, what about just getting tested? While an intestinal biopsy is the gold standard, blood tests have a pretty good accuracy as long as you aren’t currently eating gluten free. Then you wouldn’t even need to bother with the diet changes if it comes back negative.

True, but what doctor will order the test and what insurance would pay for a test if a person is asymptomatic (i.e., no GI complaints). (Although one can have CD without having GI issues, it would be a tough sale to a doctor/insurance company.)

— End quote

Definitely for the biopsy, yeah they wouldn’t be likely to, but the blood test isn’t usually as big of a deal. Obviously it depends on the insurance, but since there are a lot of non-GI symptoms of Celiac too, it seems like it could get ordered along with a CBC/CMP and not be too much of an issue during a differential diagnosis. I wonder how much it would run out of pocket…

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Hi,
My first severe vertigo attack (meaning severe vertigo for 4-5+ hours, unable to move an inch, etc) was 7.5 years ago. Two and a half years later and after my 7th severe attack I decided to try going gluten free after reading many posts at menieres dot com from people who have had success with a gf diet. In the four years since that time I have only had two severe attacks and they were in the first year of gf; no severe attacks in the last three years. So in 2.5 years of normal diet I had 7 attacks, in the next 4 years of gf diet I only had two attacks, both of those being in the first year of gf and no attacks in the last 3 years.

Sounds like a success story? Maybe so, maybe not.

I’ll never forget how a week into the gf diet I suddenly realized I did not feel motion sick. It was a such a strange feeling because in addition to severe vertigo I have suffered from a constant motion sick feeling for most of my adult and probably earlier life. And I didn’t have to be in a car to feel motion sickness, either. I think most of you know the feeling. It was strange but good. I’m still not sure if I can attribute all this to my gf diet though. At the time I gave up gluten I also stopped eating dairy, nuts, chocolate and a few other things. And I had been adhereing to an anti-migraine diet as well as low sodium for a year or so before the gf diet. A couple months before I went gf one of my doctors told me I don’t have meniere’s and there is no need for me to eat low sodium so I slowly cut back on the HCTZ and started adding a little salt to my food. Then I had two vertigo attacks a month apart. It was after that I went gf. So maybe it has nothing to do with gluten, maybe it is sodium. I really don’t know and I’m not about to bring either one back into my diet just to find out. Also, while the motion sickness feeling is still there (it never did stay away completly after that one day) it is not as constant as it used to be and there are some days when I feel pretty darn good and think I have finally licked this beast. Then there are the days when the motion sickness hits me pretty bad and then there are days like today . . . . . for the first time in 3 years I woke up, turned over, opened my eyes and it looked like things were moving. Oh no, I thought, this can’t be back. I lay very still for a few minutes and when I opened my eyes again all was okay. So I don’t know what that was all about, but it has me a little freaked out and I have felt very off balance today.

I had a blood test to see if I have the celiac gene and I tested positive for that. Of course this doesn’t mean I have celiac, just that I have the potential to get it. Without the gene it is almost impossible to have celiac. I never even thought I had celiac, just a gluten intolerance perhaps. That is until 2 years ago I developed the worst itchy rash I have ever had, kind of like a combination of sunburn, chicken pox, hives and poison ivy. I then learned that there is a skin form of celiac, dermatitis herpetiformis, and there is a good chance this is what I had. By the time I saw a celiac specialist a year later (my rash had cleared by this time) he said he did not want to biopsy me for celiac because I would have to eat large quantities of gluten for a month and in my case it would be too risky. He told me to assume I have celiac and never eat gluten again.

I’ve read lots about gluten ataxia and have found very little to connect vertigo with gluten. Gluten ataxia is more of a drunk off balance feeling (which I sometimes have) and pins and needles feeling. Outright verrigo is rare but can happen. While those who have intestinal or skin symptoms of celiac find their symptoms disappear entirely when going on a gf diet, those with neurological symptoms often have permanant damge. :frowning:

I would suggest starting with the blood test to see if you have the celiac gene. Mine was covered almost in full by my insurance company. If you don’t have the gene, well then you probably don’t have celiac. But may still have gluten sensitivity, that’s a different story though!

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Doesn’t this test for the celiac antibody (not gene)?

Its presence in blood suggests an immune reaction at some stage?

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I’ve not had gluten for about 6 months now due to hashimotos thyroid disease and I can honestly say it has made no difference to any of my vestibular symptoms. Everyone is so different!

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It’s another variant of gut related to migraine problems. I have my thoughts here in the research section on how healing my leaky gut has made my chronic vestibular migraines along with other problems go away. There are a number of things thay can damage the gut and lead to migraines.

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There are two different tests, one tests for antibodies in the blood, the other for genes. The test for genes is called “HLA DR/DQ Genotyping for Coeliac Disease” (here in Australia).

The antibody test only makes sense if you have eaten gluten for the past 6-8 weeks. The gene test does not rely on what you have eaten.

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Thanks @Katharina for the clarification. :+1:

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