FeaturesFeb/Mar 2011 Issue

Gluten Attack: Ataxia

Battle for Health

Not long after her diagnosis, Sarah Bosse realized her case of celiac disease was not typical. Bosse had joined a support group for newly diagnosed celiacs and was surprised by what she saw at the first few meetings.

“They were working full-time jobs, had families and went out at night. Not to discount the severity of their symptoms and experiences but they had a much more normal life.”

Bosse had expected them to be as sick as she was.

The 26 year old from Raleigh, North Carolina, can trace her celiac symptoms all the way back to elementary school when she spent countless hours holed up in the nurse’s office, nibbling on saltines for her diarrhea, nausea and stomach cramps.

© 2010 ThinkStock/iStock Photo

© 2010 ThinkStock/iStock Photo

Cerebellum: balance center of the brain that controls coordination and complex movements like walking, speaking and swallowing.

“Looking back, it’s so ironic. Those saltines were making me worse,” recalls Bosse. Her symptoms continued into her teen years and were chalked up to anxiety and irritable bowel syndrome. The bloating, diarrhea and cramping were such a constant part of her youth that when she looks at childhood pictures, she can see the discomfort and embarrassment on her face.

“I didn’t realize it at the time but my life has been about managing my stomach problems,” she says.

Shortly after finishing college, Bosse began experiencing frightening new symptoms. She was increasingly dizzy and disoriented, frequently stumbling while rounding a corner or changing directions. She’d even fall out of a chair or her own bed at times, blaming it on klutziness until balance was no longer her only new complaint. Her head started to feel thick and foggy and she had trouble concentrating, likening it to an extreme case of ADHD. She also began having unusual problems with her vision, seeing bright flashes and noticing that her eyes seemed to bounce, rather than rest on what she was looking at.

“I could be at the grocery store, staring at a display of ketchup. I’d try to reach for one but my eyes wouldn’t stay still so that I could pick it up,” she says.

Before Bosse was able to see a specialist, a far scarier symptom struck. She was asleep in the early hours of the morning when she woke with a start, gasping for breath. She felt paralyzed, as if her body had forgotten how to breathe. Also unable to swallow, she was choking on her own saliva. Petrified, she managed to call for help and was rushed to the emergency room.

Concerned she might have multiple sclerosis, Bosse underwent a series of brain MRIs at the hospital. When they came back clear, she was tested for Lyme disease, lupus, rheumatoid arthritis and countless other conditions over the next several weeks. Results were normal and doctors didn’t have an answer for her.

Then a close friend was diagnosed with celiac disease and Bosse wondered if it could help explain her digestion symptoms. She asked to be tested and just days later, the diagnosis was nailed. Within weeks of eating gluten free, her stomach troubles were turning around but her balance problems were worse than ever.

“I couldn’t walk anything close to a straight line. By that time, I was spending most of my day in a wheelchair. I had to stop working outside my home. It was hard to appreciate the fact that my stomach wasn’t hurting as much because I was housebound,” she says.

Losing hope, Bosse was hospitalized for depression. While there, on a hunch one of her doctors suggested she could have a little-known condition called gluten ataxia.

 

 

A Controversial Call

Gluten ataxia is a neurologic condition characterized by the loss of balance and coordination. However it can also affect fingers, hands, arms, legs, speech and even eye movements. Typical symptoms include difficulty walking or walking with a wide gait, frequent falls, difficulty judging distances or position, visual disturbances and tremor.

Experts believe gluten ataxia may be a form of gluten sensitivity, a wide spectrum of disorders marked by an abnormal immunological response to gluten.

Different organs can be affected by different types of gluten sensitivity. In celiac disease, sometimes called gluten-sensitive enteropathy, the small bowel is affected. In dermatitis herpetiformis, the skin is targeted, resulting in an itchy rash. With gluten ataxia, damage takes place in the cerebellum, the balance center of the brain that controls coordination and complex movements like walking, speaking and swallowing.

Purkinje cells in the cerebellum, key in maintaining balance, are thought to be lost in gluten ataxia.

 

“It’s best to describe gluten ataxia using the term gluten sensitivity because it takes one away from the misconception that you must have celiac disease to have any of these diverse manifestations,” says Marios Hadjivassiliou, MD, a neurologist at Royal Hallamshire Hospital in Sheffield, England.

Hadjivassiliou first described gluten ataxia in the 1990s. After seeing a number of patients with unexplained balance and coordination problems, he began systematically testing them for gluten sensitivity using antigliadin antibodies, which point to a heightened immune response to gluten but not necessarily to a diagnosis of celiac disease. Hadjivassiliou found a very high prevalence of antibodies in patients with ataxia, coining the condition, gluten ataxia.

But not all neurologists are on board with gluten ataxia. Although several studies support Hadjivassiliou’s findings, at least one small study, published in Neurology in 2000, failed to find a link between antigliadin antibodies and cerebellar ataxia. None of the 32 patients in the study tested positive for the antibodies.

But this study is just part of the problem. Casting more doubt on the condition is its so-called ‘soft’ diagnostic criteria. Gluten ataxia is currently diagnosed when antigliadin tests suggest gluten sensitivity and other causes of ataxia are ruled out. (Small bowel biopsy is advisable in patients with positive antigliadin and celiac blood tests). It’s a diagnosis of exclusion.

“There’s fairly good evidence why celiacs could have neurologic problems like ataxia,” says Joseph Murray, MD, a gastroenterologist and celiac expert at the Mayo Clinic. Vitamin deficiencies or a phenomenon called molecular mimicry could be to blame. In molecular mimicry, something in the brain may look enough like gluten that antibodies directed at the small bowel cross-react against part of the brain.

“The bottom line is that when celiac disease and gluten ataxia occur together, gluten ataxia can be a robust diagnosis. But when gluten ataxia occurs on its own, we have less certainty of the diagnosis,” says Murray.

A new screening tool may soon help. Hadjivassiliou and his team recently identified an antibody, transglutaminase TG6, which may be a better marker for gluten ataxia. TG6 is similar to the antibody TG2, detected in the widely used tTG screening for celiac disease—but TG6 is primarily expressed in the brain. Although promising, a test for TG6 is not yet ready for clinical use.

 

Awareness Lacking

Unfortunately, familiarity with gluten ataxia in the medical community tends to be the exception, not the rule, says Murray.

Bosse’s experience echoes this. “I’m not sure many of my doctors understand when I tell them I have gluten ataxia,” she says. “If I had to go to the hospital, I’m not sure the medical staff would know what I’m talking about.”

Bob Hunter, 63, a patent agent from the Big Island of Hawaii, also has gluten ataxia. His wife first noticed back in 2004 that his hands were shaking when he moved them, like reaching for his coffee cup.

“If you want to grab something, you don’t think about all the things necessary to make that happen. You just close your hand around it and do it. But if that part of the brain isn’t working well, you have to be more conscious of every muscle needed to perform the task,” says Hunter.

Like Bosse, Hunter experienced brain fog and problems with his balance, stubbing his toes and ramming his shoulders on door frames as he tried to walk, clumsily, through his house. He appeared drunk. Embarrassed, he was quick to reassure those around him that wasn’t the case.

Hunter traveled from his home in Hawaii to the Mayo Clinic in Minnesota before he was finally diagnosed with both celiac disease and gluten ataxia.

Carolyn Davison, 39, a mother of two from New South Wales, Australia, traveled halfway around the world for her diagnosis. Davison had been hospitalized half a dozen times following frightening bouts of paralysis and numbness in her legs. When her doctors timed how long she could walk before collapsing or losing her balance, the best she could do was four minutes. She experienced other strange neurologic symptoms, as well. She’d write and her letters would come out backwards, she’d get lost in the supermarket and she’d forget she was talking, mid-sentence. Before long, Davison couldn’t work, giving up her job as a therapist specializing in children with developmental disabilities and autism. Unable to negotiate stairs, she moved to a one-story house.

© 2010 Thinkstock/Hemera

© 2010 Thinkstock/Hemera

On the long list of conditions Davison was tested for, including Guillain–Barré syndrome and multiple sclerosis, blood work was run for celiac disease. Her antibodies were raised but a biopsy failed to find anything. Although Davison’s neurologist knew that in some celiacs there can be neurologic symptoms, without a clear-cut case of celiac disease, she was out of ideas.

Meanwhile, Davison started to question her sanity. Her doctors were giving up on her but her symptoms were getting worse. Like Bosse, she began experiencing frightening episodes where she couldn’t catch her breath and couldn’t swallow, choking on her own saliva. Terrified, Davison took matters into her own hands. She got online and came across Hadjivassiliou’s research. She showed it to her neurologist, who encouraged her to travel halfway across the world to see him.

Armed with binders full of her medical records, Davison went to England and met with Hadjivassiliou. He ran just one additional test, the genetic screen for celiac disease. The test can’t diagnose celiac disease but some experts believe when positive, it can suggest a genetic predisposition toward gluten sensitivity. For Davison, the genetic test helped provide even more evidence she’s gluten sensitive and after three long and trying years, she was finally diagnosed with gluten ataxia.

 

Help Through Diet

Delayed diagnosis of gluten ataxia is the norm, says Hadjivassiliou, particularly for those patients like Davison, who don’t have celiac disease or gastrointestinal symptoms. Clinicians may look for gluten sensitivity only if gastrointestinal symptoms are present and they’re unlikely to think of gluten sensitivity in the context of ataxia, says Hadjivassiliou. But his research, published in Brain in 2003, found up to 40 percent of patients with unexplained ataxia have gluten sensitivity. Hadjivassiliou recommends neurologists routinely screen patients with unexplained ataxia for gluten sensitivity.

Those with gluten ataxia have no time to waste, he warns. The gluten-free diet—the mainstay of treatment for gluten ataxia—can result in a stabilization of symptoms. But often, significant damage is already done.

The neurologic system tends to heal very poorly and very slowly, says Murray. Unlike the small bowel lining, Purkinje cells of the cerebellum have no capacity for regenerating, explains Hadjivassiliou. Once ataxia is well established, which can happen in as few as six months, it’s rare to make a full recovery.

Extensive damage helped explain why, even after going gluten free, Bosse continued to have debilitating symptoms. Her ataxia was advanced. It’s not unusual to be wheelchair-bound at diagnosis, Murray says.

However, the outlook isn’t grim. In addition to dietary intervention, physical and occupational therapy can make a big difference.

As a former occupational therapist assistant, Bosse practices many of the skills she used to teach. She spends hours each day ‘retraining’ her brain and muscles to perform everyday tasks. Physical therapy and regular exercise at the gym help strengthen her weakened muscles.

Like Bosse, Hunter began a rigorous physical therapy program shortly after his diagnosis. He also cut out alcohol, which can exacerbate ataxia symptoms. Having read about vitamin D’s many health attributes, including possible benefit in multiple sclerosis and other autoimmune and neurologic conditions, Davison began supplementing her diet with vitamin D. Although Davison feels it improves her symptoms, particularly in winter, experts don’t yet endorse vitamin D supplementation for gluten ataxia. Celiac disease can cause nutritional malabsorption (of copper and vitamins B6, B12 and E, for example) that may affect balance but gluten ataxia on its own is not thought to cause vitamin deficiencies.

The overwhelming evidence is that gluten ataxia is immune-mediated, say experts. Hadjivassiliou and his team are currently studying how the condition damages neural cells, with the hope of one day developing better targeted therapies. For now, it’s most important for patients to repeat blood testing, usually after six months of treatment with the gluten-free diet, to ensure elimination of all antibodies. Symptoms can stabilize and improve once antibodies are gone.

 

Slow But Steady

Thanks to her hard work, Bosse has made big gains since going gluten free last year. Her celiac is in check and her ataxia symptoms have improved significantly. Fortunately, she hasn’t experienced any subsequent episodes where she struggles to breathe or swallow. Although she still needs her wheelchair much of the day, it’s often the burning pain caused by peripheral neuropathy, another neurologic complication of celiac disease, that keeps her off her feet. Bosse recently picked up her piccolo and flute again, favorite hobbies of hers, and found a job she can do part-time from home.

But recovery is slow—and part of her healing strategy is to simply slow down.

“I have to be willing to slow down and work with my body, especially on days when I’m having more problems. When my emotions get worked up, the ataxia gets worse. I have to calm down and move more slowly, focusing on everything I’m doing,” she says.

Davison also has to do one thing at a time. There’s no multitasking. After two years on the gluten-free diet, her coordination has improved substantially and she’s able to walk and do gentle yoga exercises. But she has to pace herself.

“My main problem today is fatigue. I’m not working yet but I’ve started volunteering several mornings a week in my field. Those afternoons I spend in bed.” Although it’s sometimes a struggle to stay positive, looking back she can see steady improvement overall.

 

Dietary Vigilance

If Bosse had any doubts about having gluten ataxia, they were put to rest the first time she accidentally ate gluten. Her roommate had purchased a loaf of spelt bread, and mistaking it for gluten-free bread, Bosse ate it. Within an hour, she was doubled over with diarrhea that lasted for two weeks. Then the joint pain set in. Dizziness, confusion and vision problems kept her bed-ridden for several more weeks.

With this level of sensitivity, a dietary slip is a major setback. The last time it happened for Bosse was at her brother’s wedding. She ate a bite of roast beef and was sick 30 minutes later. She thinks the knife used to slice the meat may have doubled to cut rolls. Three months later, she was still suffering from an exacerbation of her ataxia symptoms. Eventually the symptoms plateaued, leveling out to a point she describes as “just a little lower” than where she was before.

“Every time I’m exposed to gluten, I lose a little bit of something I used to be able to do, probably permanently,” she says.

It’s hard, if not impossible, to fully recover from an incident of getting inadvertent gluten, agrees Davison. “I can’t take any risks with food. The consequences for me are far more serious than for lots of others on gluten-free diets.”

For her own well-being, Bosse doesn’t dine at restaurants. She takes a packed cooler when she goes out with friends. She doesn’t eat food that others prepare. Instead, she invites friends over to her kitchen where they cook using her utensils and ingredients.

“Although all celiacs need to be vigilant with their diet, I really counsel patients who also have gluten ataxia that they can’t take any chances at all,” says Murray. “They’ve got to protect their balance as much as possible.”

 

Battle for Health

“Every day is a fight with gluten ataxia,” says Bosse. “You have to constantly fight to get better.” In Bosse’s case, she also has to fight against occasional bitterness. She can’t help wondering, what if her celiac disease and gluten ataxia had been diagnosed promptly? When her mood droops, she turns to her music and her faith.

She also takes pride in finding creative solutions to the challenges presented by her ataxia. She’s arranged the furniture in her apartment so she can negotiate corners more easily and quickly stabilize herself, if necessary. Given the lapses in her short-term memory, she knows that good organization and a regular schedule are essential. She takes advantage of technology, wearing a watch synched with her computer that reminds her of appointments or that water is boiling on the stove. Her computer works with voice commands so that she doesn’t have to type by hand, a big help with the new job.

“I’m doing everything I possibly can to improve my quality of life,” she says, adding that an even bigger goal is to improve the lives of others with disabilities. She’s currently an active member of an online support group where she offers problem-solving ideas for others suffering from ataxia. She also ministers to those with disabilities at her church.

“If I hadn’t struggled with gluten ataxia, I wouldn’t have the empathy to really care for others,” she says, renewed by her outreach. “I’ve learned that in every life experience, no matter how difficult, there’s hope and joy.”

Medical writer Christine Boyd lives in Baltimore.

 

Comments (30)

My mother had heartburn from the time she was young. She had fundoplication surgery in her late 50's because the acid had burned her esophagus so badly it wouldn't close. As she aged, she started to lose her balance. The diagnosis was that her cerebellum hadn't developed properly. As she aged, her symptoms continued to worsen to the point where she was in pain constantly, she had slurred speech -- well, all the symptoms of gluten ataxia.

In my mid-thirties (I'm 55 now), I started to get horrible heartburn. Now after 20 years, I'm starting to realize that I'm likely gluten sensitive. At least I feel better when I don't eat gluten.

Sarah, I'm so happy for you that you found out that eliminating gluten helped you. I saw my mother suffer horribly. She passed away in 2009. I only started reading about this in the last couple of months.

My doctor kept telling me it was my hiatal hernia, which could be part of my problem. But, when I don't have gluten, my heartburn doesn't appear.

Keep reading and researching.

Posted by: Unknown | July 23, 2013 9:27 PM    Report this comment

New to this site. I have never been diagnosed as a celiac, however when I became very ill there were no answers. I ended up in the hospital hardly able to talk, barely able to move could not formulate words for anything, couldn't remember how to move or remember period. After test upon test MS, lupus, lyme disease etc, etc, etc was ruled out. . . someone sent me a link to a YouTube video called Minding Your Mitochondria. Afterwards I started really watching what I was eating and cut out all gluten. After a short period of time I was feeling better. I am still not sure if I am celiac but I do feel horrible if I eat it. Before all of this happened I was also on anti depressants and know for a fact this medication had a lot of side effects. I stopped taking the anti-depression medication as well. Then I came across an article about Drug Induced Lupus. The anti depressant I was taking was one of the medications on the list that could cause Drug Induced Lupus. I guess my point is really consider what you put into your body, you never know what side effects it may have. If you have issues with gluten and are struggling with depression be weary of the medication you may be prescribed as most doctors will not even consider that the little pill they are giving for depression could cause Drug Induced Lupus. Look it up. For those of you still struggling to gain control of your body I wish you ALL the best and remember Brain Plasticity is a wonderful thing.

Posted by: b | February 28, 2013 11:15 PM    Report this comment

Sarah Bosse here. I just realized today that I could comment on the article above and give an update. I'm glad to see so many comments here.

If anyone would like to email me, n a t u r a l l y g u t s y at g m a i l dot com.

I have not been glutened since January 2010. My balance and coordination has continued to improve, as well as my visual problems. I don't think the peripheral neuropathy has improved; my legs still burn. The visual problems were the last to improve. I don't think I'll ever be 100%. I still fall over easily, cannot look up while standing/walking, and I cannot walk in the dark (I use vision to compensate for balance problems). I cannot kick a ball, even a large one. But my hand coordination is near-normal now. My speech still slurs at times.

I'm glad that those who have gluten ataxia do have a chance of getting better when gluten is 200% avoided. I take extreme precautions, but it's worth it. I feel that if I got glutened again, my symptoms may take me back to where I was several years ago within just a few weeks and I may or may not recover to where I am today.

I noticed several folks mentioned Paleo/Low Carb diets. I have been on the Specific Carbohydrate Diet for over a year now (also treating Small Intestine Bacterial Overgrowth, IBS, Celiac, etc). I've added Atkins restrictions and eat about 35 net grams of carbs per day. No starches, no grains of any kind, no grain products, specific fruits and veggies allowed, all uncured meats that are unprocessed are allowed as well, and most fats. The progress I've seen has been somewhat slow but quite remarkable. I feel like God has used this diet to save my life.

I'm glad to share my experiences and listen if you need an ear. Just email me (my address is above, no spaces).

Sarah Bosse (Gutsy Girl)

Posted by: sarahbosse | December 18, 2012 9:10 PM    Report this comment

Are there any long term celiacs who are getting these symptoms? I have had celiac for 20 years and do not cheat, ever! Over the last year I have developed these symtpoms and have been told I am just depressed? After several inconclusive tests I was told to go get therapy? Are there any other celiacs with the same symptoms out there?

Posted by: Amie Nelsen | December 10, 2012 5:55 PM    Report this comment

There are a number of articles about gluten ataxia on LivingWithout.com. We hope you'll check them out. For even more info about the neurological effects of gluten on the brain, search PubMed for studies conducted by Dr. Hadjivassiliou. He is a leading global expert on this condition. - Moderator

Posted by: LW Moderator | October 31, 2012 9:24 AM    Report this comment

Your article described me to a T. I have Celiac disease and gluten sensitivity, one from my Mom and one from my Dad. I had never heard of ataxia before and I'm glad to finally find out why I am so much sicker than all the other ladies in my Celiac group. If there is any way that I can contact you, Christine, to get more information on how you were diagnosed and what you do to make yourself feel better I would be most grateful. I will be reading all of the related articles on this site asap. I am going to take a copy of your article to my Internist the next time I go. Thank you Thank you Thank you!

Posted by: Chelsea Turrone | October 30, 2012 7:01 PM    Report this comment

For a couple of years now, I've been working with my CD and getting the gluten-free diet down. Only this year, though, did I find out about the oral allergy syndrome that goes with it. (You can Google that term) The info on oral allergy syndrome is relatively new, and the lists from different source aren't consistent, so you have to do some experimentation. The bottom line is that during grass-pollinating season, you will suffer oral allergies to a number of things that you can eat at other times of the year when you're desensitized. I have to stay away from all of the plants in the grass (Poaceae) family, which include wild rice, corn, sorghum, and others; and, in addition, I have problems with the fruits listed in the grass allergens and a few in the latex group for some reason. When the pollen is gone and the seed is set, I begin desensitizing. After a month or so, I can begin to eat my normal, wider diet again. Some of the plants included in the oral allergy syndrome I can tolerate if they are cooked; and some if they are peeled; but some not at all.

Incidentally, the description of oral allergy is milder than what I experience. The sore throat and nasal congestion come on first, then asthma, and then general malaise, joint pain, and so on if I don't leave the food alone. I had one bout with ataxia during the season that I think was concurrent with the flu; but I'm not certain. In the past I've had CNS symptoms with my CD, though, so they are familiar to me. Mine were dizziness, migraine, trigeminal neuralgia, abnormal sensations in different parts of my body (which my doctor called my "extra-cranial migraines"), fainting, etc. I suspect oral allergies figure into some of these problems with ataxia. There's still so much that's unknown about the gluten problems!

I apologize for not organizing my comments better. I am working and writing on my lunch hour. Best to you all. It's good to hear from others and to learn more about the disease in that way.

I don't eat soy (except for a little bit of fermented sauce that's made without wheat or barley) because it can cause autoimmune disease for me. Even

Posted by: Sally E | September 25, 2012 4:35 PM    Report this comment

Have had a bunch of these symptoms, the clumsiness, ataxia, brain fog, migraines, epilepsy. Went gluten free nearly 10 years ago. Subsequently also went dairy, soy and egg free, and each of those also helped (albeit slowly and in different ways) with brain function. The brain heals slowly. Up through about 18 months ago I was still occasionally noticing small improvements in cognition. Next month I turn 60, and to have brain function improve this late in life has been nice. Keep up your spirits, everyone! Keep at it, and don't be afraid to try an elimination diet to find out if you are sensitive to other foods.

Posted by: JUDY H | September 12, 2012 1:52 PM    Report this comment

Dr. Hadjivassiliou in England has done quite a bit of research that has been published about the neurological effects of the gluten antibody issues. I avoid gluten like the plague because of the profound effects it has on my cognition. Like others who have commented, I won't even go into a bakery. My most recent bout of accidental contamination resulted in about two months of lost productivity due to intense fatigue and brain fog plus another two months of ups and downs. How many neurons can a person lose and still make a comeback? That I don't want to know. I always tell my patients and clients that the primary target for gluten related antibodies is not the small intestine but the brain. Keep up the good work on helping people be aware of this type of gluten effect.

Posted by: Daniel S | September 12, 2012 11:52 AM    Report this comment

I've been aware for years of my ataxia, I just didn't know what it was called until a few years ago. I can't go into a bakery, or into a supermarket where they are baking bread, or go by the bread displays, because I immediately go into a brain fog, lose my balance, and have trouble breathing. Of course, no one ever listened, including the doctor. I get so foggy I can't make decisions, sometimes. A waitress put a plate of spaghetti in front of me by mistake, recently, and I immediately went into a brain fog and couldn't act in my own behalf to move it or get someone to remove it for me. My husband noticed and moved the plate and told the waitress what was going on, and to bring me the correct order.

Posted by: Ann W | September 12, 2012 10:35 AM    Report this comment

this is for sjm- I have been having alot more allergies and having lung problems I just can't get rid of. My foot reflexogist wants to treat me for a parasite but was wondering what problem or issue you are having and what you are doing about it. Anybody: So what is ataxia? I too have been trying to life gluten free for 3 yrs now but just when you think you are doing so good, something always happen. I too have been having a lot of tight muscles and been going to get a massage every 3 weeks or so and that seems to help me too! and some days I just can't hardly function at work or remember who I order what for anymore.

Posted by: Vicki M | September 11, 2012 10:20 PM    Report this comment

I am gluten intolerant and lactose intolerant, but I have some of these brain symtoms. I did have cancer in my small intestines from the gluten and I had chemotherapy. I am foggy, can't concentrate, I don't believe I can go back to work in a supervisory role b/c I can't remember anything. I still am not sure if it is gluten or alzheimers. I am exhausted all the time, I get dizzy, sometimes walk to the left, and my arms hurt. I am depressed although I do take anti-depressents. I feel that my life has no meaning and I have no reason to be here. I just don't feel good.

Posted by: dbc9r9@yahoo.com | September 11, 2012 7:36 PM    Report this comment

Never diagnosed with Celiac Disease or other major illness (my father is a physician and put me through the ringer), but have been gluten intolerant for almost 7 years (after a long struggle with lymes disease) with a lot of these neurological symptoms. In addition to brain fog, vision problems, joint aches, headaches, night sweats, sleep problems, frequent urination, abdomen pains, muscle weakness, fatigue, and irritability the muscles running on either side of my spine, from head to heel, tightened up and could not be stretched out. In addition to gluten, I found that alcohol, peanuts, tree nuts, eggs, and nightshades (potatoes, tomatoes, eggplant, etc.) exacerbated the Ataxia et. al. In addition to diet, I've been working with an acupuncturist for the past two years (with great success) and recently began exploring mineral supplements (experimenting in case I have a mineral deficiency). I am currently on mineral supplements that have reduced my ataxia symptoms by leaps and bounds (when I veer from my diet). It's still a little too early to know if the minerals will have a long-lasting effect - but I am supremely optimistic based on the last two weeks.

Posted by: Hocha | September 11, 2012 6:57 PM    Report this comment

I know that I am gluten sensitive, and have apparently been for 40 years, but had never thought that my IBS would have led me to think I could also have Ataxia. Now in my late 60's I have had three knee operations due to falls and have experienced a lot of the symptoms described in this article. My daughter and only sister have been diagnosed ( biopsy) with Celiac disease , but I seem to fail all the medical test to confirm Celiac Disease. However , I am constantly tested for thyroid disease, lupus, and MS. I am going to have extensive testing for thyroid disease, and failing to confirm that, I may well address the Ataxia angle. I have been on a gluten free diet for 5 years, but can not control the IBS, even with medication.

Posted by: Terrie S | September 11, 2012 5:59 PM    Report this comment

Wow, just wow. Falling, dizziness, bouncing eyes, unsteady gait, difficulty swallowing. Many years of neurologists and neurologic tests, diagnosed with "looks like MS but not MS" - will totally be investigating this further.

Posted by: GlutenFreeBamma | May 18, 2012 10:11 AM    Report this comment

This is really interesting, I didn't find out that I had this disorder until tonight............I just thought acting drunk, twitching, not hardly being able to walk, being cloudy headed, acting as if I had ADD, was just part of the whole gluten intolerance thing. I better really start being super careful what I consume, not like I'm not already but I really better watch it now after reading this, cause especially here lately my symptoms have gotten much worse when I consume gluten.

Posted by: kvhsports | April 9, 2012 9:42 PM    Report this comment

In my last post, my point (first paragraph) is the irony - we can prove gluten-sensitive enteropathy for the brain but NOT for the intestines. This significance is lost on the public. There is no animal model for celiac disease that presents all features of the disorder; namely, the intestinal ones.

Posted by: Bunny H | August 26, 2011 3:53 PM    Report this comment

In most of their studies, both Lindfors et al and Hadjivassiliou et al acknowledge that, unfortunately, neither passive transfer of IgG-class gliadin antibodies nor adenovirus vector-mediated expression of celiac disease-derived TG2-specific autoantibodies in mice have resulted in any kind of intestinal pathology resembling that seen in human celiac disease. Similarly, experiments to immunize mice with the celiac disease autoantigen TG2 have thus far failed to induce any morpological changes in the small bowel.

But, and I emphasize: On the other hand, both Lindfors et al and Hadjivassiliou et al also acknowledge that the intraventricular injection of both the anti-TG2 or the anti-TG2/3/6 crossreactive autoantibodies provoke transient, but equally intensive, ataxia in mice.

In summary, gluten ataxia exists. But we don't have a non-evasive (and simple) means of diagnosis yet. Both Lindfors et al and Hadjivassiliou et al are researching the same problem (to determine a means of diagnosis and the related technology) in their studies. I think this subtlety is unfortunately lost on those outside of the scientific community. What these teams are doing is complicated and doesn't "translates" well to the public.

Posted by: Bunny H | August 26, 2011 3:27 PM    Report this comment

Hey BODYBUILDER - don't freak out. You are not alone. Google the words "bodybuilder celiac" and be amazed! Good luck!

Posted by: Elgie | July 3, 2011 1:51 PM    Report this comment

i never had any problems with gluten up until the summer before i became a senior in high school

i was about 200 pounds at 5 foot 8 inches and it was mainly muscle because i really wanted to become a bodybuilder and i was training hard and felt great

then all of a sudden my joints started aching like crazy and i was feeling so fatigued that i decided to take some time off from working out, but it didn't help

nothing became better, everything only got worse, my stomach was aching constantly now, i was staying home from school almost every week with flu like symptoms (and i ONLY ate toast on those days, probably the worst thing i could have eaten)

Until finally in my law enforcement class we ran a mile and a half, and i could only do two laps and at that i felt like i was going to die or something right there, so i got home feeling really bad,

but luckily my aunt had similar symptoms when she was younger, and she thought that i might have a problem with gluten, so i went to the doctor, and got a blood test for celiac disease and tested positive

now im 50 pounds lighter :( and i still but i still have balance problems, do you think it could be caused by casein from milk products?

im just kind of freaked out now that i will have permanent neurological problems when my dream was to become a bodybuilder

Posted by: Ben | July 3, 2011 1:44 PM    Report this comment

Hi to those who have added comments. Im Carolyn, one of the people in the article. It has been good to see that we are not alone and others are living with the same symptoms. Titrant asks about the ketogenic diet. I know Sarah has cut out sugar for reasons of doing a anti-candida diet. Maybe it is the low carb aspect of that which helps? Before I had my worst symptoms start, I was on a low carb diet to lose weight for my wedding. I had never felt so good. I guess because without knowing it I had cut down on gluten. After the wedding I went back to a normal diet. My doctor wonders if this was a neurological insult that triggered everything going more rapidly. (the physical symptoms started 6 months after the wedding) So maybe I need to go back to that...

Posted by: Cazzy | June 2, 2011 12:13 AM    Report this comment

I could not believe it when I read this article---this has described my journey - detail for detail. In the early 1980's I was falling apart- tested for MS, other neurological testing, even told to get my head examined. Anti gliadins did show up, but no one even seemed to know what that was. After bouts in a wheel chair, using a cane and unbelievable weakness and inabliltiy to digest anything...by the grace of God I found out about the Gerson Clinic and spent two weeks there in 1991. Being a organic vegetarian diet with emphasis on detoxification, I did begin to improve.

I still remained with severe allergies and lung difficulites which I am still treating. As I began to reintroduce things to my diet, I knew it was more than just wheat even rice was a problem- I have been on the Specific Carbohydrate Diet and have been doing pretty well. My energy needs to be carefully guarded - but as many of you know - boy do we feel it if we inadvertantly get some wheat.

I am so grateful to have seen this article...to see it more or less defined really helps. I am sure this must be a very unusual reaction, but it has been a great encouragement for me to read it. It has been a LONG haul - I am thankful to have better direction as I move forward!

Posted by: sjm | May 9, 2011 4:13 PM    Report this comment

I know most of these symptoms. It was high time when I come to know the problem with gluten and gave it up. It is horrific though how many times I ingested gluten based only on being too trusting too people, to whom I should rather have given a lie direct instead of believing them.

Btw. do any of the quoted authorities recommend the old good ketogenic diet to their patients to check out if they improve further? I am on such a diet and it introduced much improvement into my functionality.

Posted by: titrant | April 23, 2011 3:58 PM    Report this comment

I'm am SO happy to see this article in this magazine. I've been diagnosis with Gluten Ataxia and Gluten Encephalitis. I never had gut symptoms. I now receive Social Security Disability because the neuro-phyic evals (brain function testing) showed clearly my real brain issues. I can look normal to people, but trust me, my brain is a mess. If I inadvertently eat gluten, I need my cane or a wheelchair to get around. It looked like I probably had multiple sclerosis before I got the diagnosis. I have all of the same symptoms listed in this article. Thank you for finally doing this article. Sarah Bosse is my hero for sharing her story. My doctor has talked to Dr Hadjivassiliou regarding my case. It's not good news. I'm grateful for a diagnosis and am very strict on the GF diet, but may never regain all of my brain function.

Posted by: Serafina57 | March 7, 2011 1:37 PM    Report this comment

I don't remember not having these symptoms. I didn't start walking until 2 years of age, I had a bloated belly, I never had very good hand eye coordination, I don't balance well, I have evidence of bad bruises and scrapes on my legs from trying to learn how to ride a two wheeled bicycle. I was said to have Secondary Carnatine Deficiency Muscular Dystrophy due to my chronic fatigue and those symptoms I have mentioned. But I didn't get worse so I didn't have MD at all. Last summer I got another muscle biopsy and was said to not have MD at all. But I did have something different with me but it wasn't defined.

It wasn't until my symptoms of Rosacea and my ongoing diareah that I connected them both that I might have some kind of digestive issue. So I stopped gluten on my own and mentioned it with my doctor who said that it was "too expensive" to be tested due to my insurance being under disability didn't cover those kind of tests.

I will be looking forward to having answers, I feel that my fatigue has been taken away after almost a year of a gluten free diet. I still have balance issues as I fall up stairs once in a while and my hands tremor still. And its still ridiculously hard to use four wheeled roller skates but i still try. But its nice after all these years to be possibly one step closer to having an answer to all my questions. I may never be normal but I got the answers I've always wanted to know when I was told I had MD at age 12. Thanks for this article and publishing this online.

Posted by: ginaiam | February 17, 2011 8:02 PM    Report this comment

I have been doubting my gluten sensitivity for years because of the lack of gastrointestinal symptoms. I do get the brain fog, slow memory, and lately dizziness and clumsiness, speaking and writing changes... I had read that some people are affected by gluten in this way. I have a strong family history of early Alzheimer's and find it interesting how many of these symptoms resemble my father's and relatives' progressive diseases. Maybe it was gluten ataxia after all. Thank you for sharing this article. I will never eat gluten again.

Posted by: Jeannie A G | February 15, 2011 1:11 PM    Report this comment

At least six years ago I began to have brain blips, balance and walking problems and ended up seeing a neurologist and going through a physical therapy program to learn how to walk again. Everyone blamed my diabetes, although I knew that wasn't right. Brain fog and other problems overcame me 20 minutes after my meals, and I knew the problems were food related. It took me three years of research before I learned about from the British Journal of Medicine about gluten ataxia. I went for ELISA testing, gave up gluten and am much improved. I might not regain all the brain power I once had, but I think I'm holding my own -- walking, driving (limited), etc. I occasionally have speech problems, and sometime I mix up words. By the way, even though I went through a lot of neurological testing, my neurologist didn't have a clue. So be sure to take this article with you to any and all of your doctors.

Posted by: TerryP | January 17, 2011 3:35 PM    Report this comment

This article has been very informatve, I have been having some of these symptoms. I will take a copy of the article to my neurologist. Thanks

Posted by: Dawn T | January 11, 2011 9:17 PM    Report this comment

This is all sounding like what I have been experiencing... WOW... I have been wondering why I have been having these "Nerological" symptoms.......

Posted by: DIANE B | January 8, 2011 6:26 PM    Report this comment

That is really interesting because i am gluten intolerant that could happen to me but it won't

Posted by: KAKE12 | January 8, 2011 11:07 AM    Report this comment

New to Living Without's Gluten Free & More?
Register for Free!

Already Registered?
Log In