Gluten and Migraines … Chrissie’s Story

Is there a connection between gluten and migraines? Does going gluten free eliminate the migraines or reduce their frequency and/or severity? Some of us who are strictly gluten free have experienced the elimination of migraines (as well as other types of headaches). Some who have not found migraines totally eliminated after going gluten free have at least experienced migraines less frequently and found that our headaches don’t last as long or are less debilitating than in the past when we were eating gluten.

Some of us who are gluten free and previously suffered from migraines (and other headaches) now get them only if we have been glutened. The connection between gluten and migraines is addressed briefly here on Beyond Celiac. An Italian study, Association between migraine and Celiac disease, showed that migraine sufferers were 10 times more likely to have celiac disease than the healthy participants. The study even put to rest claims of the placebo effect as the cause of patient improvement in regard to migraines because it was shown that the gluten-free diet actually improved blood flow in the celiac patients’ brains.

Dr. Alessio Fasano, the director of the Center for Celiac Research at Massachusetts General Hospital and one of our foremost experts on “gluten disorders,” has stated that “Roughly one-third of celiac disease or gluten-sensitive patients we see have some form of migraine,” Fasano said. “That link with gluten-related disorders is very well known to us.” Gluten disorders include both celiac and non-celiac gluten sensitivity. Fasano made this statement in response to a study conducted by Columbia University Medical Center. Another researcher, Dr. Alexandra Dimitrova said “Our findings suggest that migraine is a common neurologic manifestation in celiac disease, gluten sensitivity and [inflammatory bowel disease].”

Documented “PubMed”-type information on the connection between gluten and migraines is clearly available, but today I’m addressing the connection between gluten and migraines by way of gfe reader Chrissie’s personal story. After I shared some of my friend Delise Dickard’s personal story via my review of her excellent memoir, Coming Unglutened, Chrissie Prévost May emailed me. Chrissie was so enthusiastic and her personal story was so compelling that I knew I had to share it with you all.

Gluten and Migraines in Chrissie’s Personal Story

Here’s Chrissie’s personal story of gluten and migraines via her original email and our follow-up discussions via email.

“Hi,

I want to share my story with you in the hope that it might help others in the same situation… I am French and I have been living in Plymouth, UK for the last 35 years with my husband Nick who is British.

Age 8, I started vomiting. Age 14, when I reached puberty, the vomiting stopped and the frequent violent headaches & migraines started. Since then it has been a constant battle. No one else but yourself can hear the thumping in your skull, feel the nausea rising and encounter the blurred vision symptoms. You don’t have two heads and look like a freak, you just carry one very poorly head on your shoulders for hours on end. I always treated what I was going through as a “condition”, never as an illness, and fought each and every bad headache/migraine which could last up to 4 consecutive days.

I avoided various food products as well as alcohol (except for the odd glass of champagne from time to time!), followed dozens of treatments, some painful (in 2010, I was asked to be part of a new Botox study at my local hospital which consisted of 4 separate treatment sessions, each involving 30 small injections in the skull, neck and shoulders- as the 3rd session didn’t work I was dropped out of the study), swallowed hundreds of prescribed tablets, even self-injected in an attempt to alleviate the pain but to no avail long term. I was determined to not let them ruin my life and rode the waves, glad to put them behind me each and every time until the next one came knocking on my door. Despite all this, I still lived a very active life, working full-time as an executive assistant to the MD of a large corporation, and raising my son. I never lost faith that one day things would get better.

In March 2016, a family member who lives in Ireland who is also a sufferer mentioned following a gluten-free diet after reading medical researches carried out in the U.S. which revealed that for some migraine sufferers there seems to be a strong connection between the two. 4 wks on I can truly say there has been a great improvement in my condition—such a nice feeling. However, I feel rather let down by the medical profession which has been far too happy to push pills down my throat and not see beyond this debilitating medical condition, even refusing to let me undertake allergy tests.

I am now 56 and the last 48 years of my life have been spent living with frequent headaches and migraines because of the lack of understanding by the medical profession! Life is far too short and precious to let frustration and anger take over. I’m determined not to dwell on the past but to instead focus on a future with a lot less headaches/migraines that I can control pretty easily with a gluten-free diet that I follow to the letter. I bought a lovely recipe book with great recipes which are easy to make once you have stocked up your pantry with all the required ingredients. Life is good again!”

I replied to Chrissie saying that I have several friends who suffer from migraines and chronic headaches who have not fully explored whether they have celiac disease, non-celiac gluten sensitivity, and/or tried a gluten-free diet for an extended period of time. I told her that I knew a gluten-free diet had been the solution (or part of the solution) for many with migraines and other types of headaches–and that includes myself and Son. It’s not a solution for everyone who experiences migraines as gluten is not a trigger for all who suffer migraines, but the connection is worth fully exploring for all who get migraines. Chrissie replied to my email sharing her thoughts and more of her health and lifestyle details.

“I am not saying I no longer have headaches, I do from time to time, but I just have to take a couple of pills as soon as I feel one coming on and it vanishes straight away. Before going on a gluten free diet, a simple headache would 9 times out of 10 turn into a 3 to 4-day migraine that would leave me totally drained. I was getting very worried what the continued intake of medications prescribed to me by the neurological dept. at the hospital was doing to my liver and other major organs.

I haven’t found the change of diet difficult to adjust to but I am a very determined person so, I heard about the studies carried out in the U.S., read about them and decided to give this diet a go. I love life, embrace it and always try to look at ways of keeping happy and well-balanced and for me there was no question, I had to try a gluten free diet to see if I could get rid of my terrible migraines. I am a very active person who works full time and also runs a business (small designed cushions, children mobiles and frames) from home in my spare time. It is more a hobby than anything else but it helps me to relax and channel my creative mind.
Today, I made a homemade quiche with bought gluten-free shortcrust pastry and it tasted delicious. My husband loved it too. The other day, I made a Victoria sponge filled with raspberry jam and butter cream. Again, it tasted beautiful and was in no way different to what I used to eat before I started the gluten-free diet.

I only buy gluten-free products and cook from scratch. I don’t buy ready meals. Being French I love cooking so for me, nothing is a big challenge. In the UK, there are dedicated sections in all the supermarkets. I follow my gluten-free diet to the letter and don’t cheat at all; I can easily say that except for the gluten-free bread that I’ve bought and don’t particularly like, the gluten-free products taste fine to me. My next challenge is to make a good gluten-free loaf of bread!

Like you, I strongly believe your friends suffering with migraines as I used to for the best part of 48 years, are wrong in not wanting to change their current lifestyle as they could find themselves being happier with a totally new life ahead of them. My family, my work colleagues and my close friends have found a change in me – I am happier, bouncier (if this is at all possible!) and ready to take on any new challenges thrown at me. Like I said in my previous email, life is too short and it is for living to the full so, if changing your life around is the answer, then let’s do it!

Are you one who experiences headaches, including migraines? If you are gluten free, have you seen an improvement in your headaches after going strictly gluten free? Before going gluten free, I personally experienced almost constant headaches. Most were what I—and my doctors at the time—labeled as sinus headaches or tension headaches, but some were migraine status. I was always taking over the counter meds, but when the migraines would hit, I’d be in bed in a dark room, often with an ice pack on my head. These were the strategies that my paternal grandmother had used when her own “sick headaches” came on. It’s fairly rare for me to have any type of headache these days but when I do, it’s usually the first sign that I’ve been glutened.

Getting Tested for Celiac Before Going Gluten Free

I so appreciate Chrissie sharing her story. I hope you do as well. It’s really important for me to remind you all that I always recommend that anyone who suspects they have gluten issues get tested for celiac disease BEFORE they go gluten free. Here’s why.

There are not that many reports of individuals who have gone gluten free and then been diagnosed with celiac disease, even if they have gone through what is called a gluten challenge—that is, resuming eating a specific amount of gluten for a specific period of time. Part of the problem with doing a gluten challenge to try to get a celiac diagnosis after having gone gluten free is that anyone who has gone that route and has already seen even some relief of their symptoms does not want to resume eating gluten. Therefore, many choose to bypass testing and go undiagnosed. Another part of the problem is that doctors’ guidance on how much gluten one has to consume to get accurate test results varies. The guidance on how long one must continue eating gluten before testing also varies. The inconsistency in doctors’ directions regarding what constitutes an appropriate gluten challenge definitely makes patients doubtful about the accuracy of the results of their celiac testing, particularly if the results are negative.

Getting folks tested before they go gluten free can be a challenge on its own. Some folks with gluten issues are so very ill that they are looking for immediate relief. Waiting for testing to confirm that gluten is the problem is not something they wish to do. And most of us know that many doctors are still reluctant to do celiac testing. Most of these doctors have an image in their head of what celiac “looks like”—as far as their patient’s appearance and symptoms—and their picture is an outdated and incorrect one. Others don’t have insurance that will pay for celiac testing or time to take off from work or other commitments to be tested. As a gluten-free support leader for 10 years, I heard all these concerns and reasons for avoiding testing from individuals.

Last celiac testing itself is not foolproof. There are false negatives on the blood panel and intestinal damage can be missed when the biopsies are taken. Some doctors still look for confirmation via gene testing as further proof that patients have celiac. However, 2 to 3% of those with celiac disease do not have celiac genes (at least not the genes identified to date). Two to three-percent of those with celiac disease not having celiac genes is not a statistic that you hear often. You’re more likely to be told that if you do not have celiac genes, you simply cannot have celiac. I personally know many individuals who have been told just that by their doctors. Worse was when their doctors made a much more definitive statement, going beyond celiac disease, saying, “Gluten is not an issue for you.” That is simply false. It’s repeated often enough, but it remains untrue.

Dr. John Snyder, the chief of the Division of Gastroenterology, Hepatology, and Nutrition at Children’s National Health System and their head of the Celiac Disease Program, emphasized this statistic when he spoke at the D.C. Gluten-Free Expo last year. He said that these statistics have held true for the celiac patients in their program. About 2-3% of their celiac patients do not, in fact, have celiac genes.

For those who have dermatitis herpetiformis, the skin manifestation of celiac disease, a skin biopsy is sufficient to confirm both DH and celiac disease. Those with DH often don’t test positive via an intestinal biopsy as their issues are largely not intestinal. In the skin biopsy for DH, a fluorescent dye is used to look for the presence of Immunoglobulin A (IgA) deposits that appear in a granular pattern. The biopsy should not be done on the skin lesion itself, but on the skin adjacent to the lesion as inflammation in the lesion can destroy the IgA deposits. (Read more via the Celiac Disease Foundation.)

I am sharing all this information along with Chrissie’s story  because it doesn’t get shared often enough. I’m one who did not get celiac testing before going gluten free. However, Son had both celiac testing and a skin biopsy for DH conducted. The test results were negative for both, but testing was not done correctly for either. (I only learned this after the fact.) Yet both of us thrive by living gluten free.

My points here are that celiac testing is not foolproof and anyone who gets a negative result should give a strict gluten-free diet—as in 100% gluten-free—a try when dealing with migraines and other constant headaches. One last note … Dr. Snyder also mentioned that someone who has gluten sensitivity is someone who has tested negative on ALL celiac testing and wheat allergy testing and then still eliminated gluten and seen improvements in their health—and re-occurrence of symptoms if gluten was reintroduced. That’s worth repeating. Dr. Snyder said that someone who has gluten sensitivity is someone who has tested negative on ALL celiac testing and wheat allergy testing and then still eliminated gluten and seen improvements in their health.

I really don’t think that is the way gluten sensitivity is usually diagnosed. I know individuals who tested positive on the blood panel, but negative on the biopsy portion of celiac testing and were told that they did not have celiac disease, but likely did have NCGS. Aargh. Remember that Dr. Snyder said that NCGS means you do not test positive on ANY of the celiac or wheat allergy testing. It’s amazing how muddled the whole subject of celiac disease and NCGS remains today. Interestingly enough though, the results of a study led by Columbia University Medical Center, “Intestinal cell damage and systemic immune activation in individuals reporting sensitivity to wheat in the absence of celiac disease,” were just released.

A synopsis of the results is shared here, but the key finding was that there is a biological basis for Non-Celiac Gluten Sensitivity. “Our study shows that the symptoms reported by individuals with this condition are not imagined, as some people have suggested,” said study co-author Peter H. Green, MD, the Phyllis and Ivan Seidenberg Professor of Medicine at CUMC and director of the Celiac Disease Center. “It demonstrates that there is a biological basis for these symptoms in a significant number of these patients.” This validation is huge progress, folks!

But, back to the issue of migraines and other headaches, do consider gluten as a possible culprit. It’s worth mentioning that such headaches might be only one symptom of celiac or NCGS that you are experiencing. You might find by reviewing a list of the many symptoms of gluten issues that you also have some other symptoms. Please check it all out. Being headache free has been such a huge blessing to me and to Son. We even made a few trips to the emergency room because of his headaches, but he is headache free now … unless he gets glutened.

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