FeaturesFeb/Mar 2011 Issue

Gluten Attack: Ataxia

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.

 

Next: Help Through Diet

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

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