My story, my struggle, my relieve...?

Hello everyone,

I've just subscribed to this site in the hope to contribute and learn something in the process.My Name is Hans 44 yrs old, i'm Dutch and not a native English speaker but i can manage quite well.

I want to share my story with all of you, specifically those with GLUTEN ATAXIA. As this is an introduction it could turn out to be a somewhat lengthy story but i hope you will take the effort to read it, for i still have so many unanswered questions! I hope you can relate to this and that some of you can shed some light on the parts that still remain vague. I need to be specific so excuse my long lists of test results etc. But this case is so rare and diverse that i feel it's needed to put things in perspective.

In august 2011 i have been diagnosed with microscopic colitis, a relatively rare autoimmune disease in the spectrum of colitus, Chron, IBD. I started on steroid medication, Entocort (Budesonide) a local corticosteroid that has proven to be very effective for this disease. I have been blessed with a very skilled, understanding and patient internist (Dutch word for a specialist in internal organs and digestif system)

It turned out i had complaints that were not explained by the colitis so he had some more tests done. The complaints were:

  • sight, difficulty to focus, itchy and dry eyes, poor night vision, unable to read without (my wife's) glasses
  • difficulty concentrating, jumpy when hearing loud sudden noises, moody at times
  • mild pain in bones, muscles and lower back. mostly in the morning
  • stiffness
  • a feeling that my speech was not as fluid as it was before the bowel problems
  • tiredness throughout the day, lack of energy
  • night sweats
  • frequently having to urinate, in large portions and with a darker color than before
  • steorrea (fatty, smelly stool (pardon for being so graphic..))
  • a vague sens of being distant, not entirely there. as if the world around me was fading.
  • dry skin with increasing spots (not rash)
  • sometimes tingling sensation in hands, feet and face
  • a gait that i then called waggling, drunkmen gait
  • clumsiness in hands and arms (dropping things, missing while grabbing something)
  • problems coordinating in large rooms, near obstacles, uneven surface and through doors/narrow passage
  • left leg sometimes bending unexpectedly when walking
  • dropfoot
  • burning pain in both feet at end of the day
  • muscle twitching, tremor, involuntary movement of arms and legs while in rest
  • nightly pain in hip (severe)
  • pressure sensation (near pain) in lower head just above neck
  • trouble swallowing, reflux at night, waking up at night nearly suffocating in own saliva
  • chronically enlarged lymfe nodes in the yaw area

At that time the above were still mild except for some points, not disabling but surely worrying!

The lab tests and a DEXA scan issued by my internist showed the following:

  1. Anti TtG count (marker for coeliakie) 58 (should be below 7
  2. vitamine D3 41, (should be at least 50, preferably up to 80)
  3. vitamine B12, magnesium, etc. (neurological relevant markers) all perfect! Thyroid likewise
  4. IgG subclasses (IgG2 and IgG4) too low
  5. decalcification of bones (osteopenie, the pre stage of osteoporosis)
  6. urine; raised count of keto substances and high specific gravity

The combination of anti-TtG, vitamin D deficiency and osteopenie led to the inevitable conclusion of celiac decease (coeliakie) All that was left was a look inside the small intestine to finalize the diagnose.

Unfortunately the endoscopy showed no signs of celiac, non! only a severe case of candida infection in the esophagus. The internist gathered that the steroid medication must have suppressed and/or healed all the damage, otherwise there would not be an explanation.

Meanwhile at the neurologist (the second one i consulted...) an mri proved there was a hernia in the lower back, explaining some pain, walking and sensitivity issues in the lower left leg and a couple of hernias in the higher back, between shoulders. one of which seemed to press against the spinal cord. At this point i was relieved; most symptoms explained...

But! when i started to lower the steroid medication, the bowel problems increased again and the neurological problems did as well. New or worse known neurological symptoms worried me; sight getting much worse, speech slurry and problems articulating correctly and a verry severe "drunk gait"

I saw a new neurologist, a very skilled one this time and he said: there's no spinal cord compression visible on the mri, an EMG showed no abnormalities part from "fasciculations" (muscle movement) and a very likely carpal tunnel syndrome. clinical investigation showed no signs except a low reaction in left knee reflex, explained by the hernia. Speech and gait problems are in now way explained by the lower hernia and are not caused by spinal compression even if there were any!

New lab tests by the internist showed a raised count of anti-TtG and is now at above 120. Vitamin D is back at 80 (through supplication) hence Muscle problems caused by vitamin D deficiency is out of the question.

Diagnosis: celiac decease (despite the absence of villious atrophy), hernia L5-S1 and unexplained neurological symptoms. I've started my gluten free diet two weeks ago.

Well... only last thursday i came across an article on 'gluten ataxia' and my mouth fell open in astonishment! I recognized all the symptoms although i feel i have a mild case, possibly by cause of the steroids i've been swallowing for the past year. I have downloaded the article "Gluten sensitivity as a neurological illness by: M Hadjivassiliou, R A Grünewald, G A B Davies-Jones" And i will forward it to my internist and neurologist so we can discuss it on my next appointment.


Now; if you are still there, does anyone recognize these symptoms to be typical for (gluten)ataxia and/or neuropathy? Is there anything more i can do/have tested to convince my specialists that they should consider this as an option?

Thanks for your patience when reading all this!

Please dont apologise - despite my lack of concentration, I read with interest right to the end.

Thank you for sharing.

I cannot comment personally but know that others on here can.

Take care, Patsy

CA/59/Ipswich UK

I have a similar experience and symptoms. I am gluten intolerant, have not had endoscopy yet. Have you had your cpk level tested, an indication of myopathy? Mine was hi, treated wiht prednisone, after muscle biopsy I was dx with polymyositis, later IBM, inclusion body myositis. This is the second post I have read this week about candida and neuromuscular problems.

Thanks for replieing,

My crp levels are within tolarable values, which was suprising with two active inflamations and a fungal infection… The candida is known to be common in patients treated with immunosuppressents such as steroids. Mine is under controll now thanks to yet another medicine. (nice idea all these chemicals in one’s body… Not!)

Neither the emg nor specific blood markers showed signs of myopathy. The same goes for diabetes, reuma, lupus, hodgkins, kahler, well basicaly every posibility that fits certain symptoms has been checked and found negative

Hello Hans,

Like yourself I have had most of the symptoms that you’re describing for about seven months now. No one has been able to figure out what is causing the problems until I recently went to the Mayo Clinic in Arizona. After undergoing every neurological test they had, as well as dozens of blood tests, they still couldn’t explain what is causing my problem. Until I was sent to their gastroenterologist for unexplained stomach pain. They did an endoscopy which suggested that I have celiac disease but it wasn’t definitive. Then they did a blood test to check for antibodies which were negative. So they did a genetic blood test to check something called DQ Alpha 1,2 and DQ Beta 1,2 which showed positive results for celiac. After seven months of suffering I just learned these results two days ago. I am changing my diet to a gluten free diet in hope that this will solve the problems. I will let you know if there are any changes. Good luck to you and I hope this information helps you.

I have most your symptoms Hans, my Consultant is actually mentioned as the report co-author, a great doctor it seems, thank God, Dr Hadjivassiliou at Sheffield Hallamshire hospital, I go back to see him towards the end of October to find out the type of Ataxia I have as there are apparently over 150 types.

Your symptoms suggest Ataxia but as a layman it's a guess, but I have many of them.

Keep your chin up and get on here and chat if you get down



Hi Hans!
I recognise so many of these symptoms! I am diagnosed with gluten ataxia by Dr H of the article at Sheffield and I think you should try and get yourself seen by him there if you could.
I’ve added you as a friend. I’m still being investigated there and am due back in the near future so when I know more ill let you know.

Hi Hans,

I'm Dutch as well, and have a heriditary form of ataxia (SCA14). Some of your symptoms are definitely the same as ataxia patients'. I'm a member of the Dutch ataxia patients organisation, for more info see I don't know if there are any gluten ataxia patients among us, I know most have some kind of genetic disease, but maybe you can find some more information there about ataxia, rehabilitation centres, specialised neurologists in the Netherlands etc. I go to prof Van de Warrenburg in Nijmegen. I think he's not a big fan of the gluten ataxia theory, but he had me tested anyway so I trust him to keep an open mind (no gluten intolerance in my case).

Maybe it's possible you have 2 completely separate diseases (comorbidity) with such a long list of symptoms? Did you have a brain MRI and did it show degeneration of the cerebellum?

All the best,


Thanks for all the rapid replies! i'm overwhelmed by all the sympathy i feel here.

This is the first time i entered a forum in my year of searching to find answers. And i now feel it had to be this forum, Mainly because this is the first one that actually links all the things i've experienced this last year to a possible cause.

@Cristel; thanks for the link, i will have a look. And yes, had the MRI but that was to exclude possible MS. I don't think the cerebellum has been specifically viewed by the neurologist who issued it. (which is strange given the explicit signs i mentioned) If there's one thing i've learned this year it will be that some doctors think statistics instead of human, i mean; if it doesn't fit the statistical standards it just isn't there no matter what the patient says and feels

Now don't get me wrong, i have all the confidence in medicine still but for example; the first neurologist thought the hernia was nothing worth mentioning and diagnosed me with chronic hyperventilation. The third one showed me the MRI and pointed out exactly where the nerve is being jammed, clear as crystal!! If you're not willing to look beyond what you think you already know, you'll never see that what is in plain view. (ok, a bit vague but most of you will know what i mean)

And finally. The thing that makes this all so complicated is that there are indeed some separate deceases: microscopic colitis, coeliac and at least one hernia. Treatment for the first may suppress symptoms of the others. And the symptoms overlap as well.

Hans, I've had many of your symptoms for over 12 years now. Not a single positive lab test to confirm a diagnosis explaining my ataxia (gait and eye problems, called nstagmus). However, after all I've been through and the many top neurologists I've seen, I'm accepting a diagnosis of SCA. My genetic tests showed negative as well, but my mom had ataxia and more recently a top neuro-opthamalogist here in Oregon where I lived was certain that my eye problems were typical of SCA ataxia. Just don't know the type. I do have something you might check for, Hashimotos thyroid. My thryroid lab tests were normal, but my doc found a large goiter in my neck on examination. My endocrinologist said my thyroid levels were normal but wanted to give me some thryroid hormone to see if the goiter would be reduced. I'm now taking this, not for the goiter, but because it suppresses the Hashimotos disease. My doc at UCLA says that Hashimotos could be the cause of my ataxia and has a treatment that seems to be working. Since my Hashimotos is not longer showing up (suppressed--not gone), and I still have ataxia there is no reason to treat this. Anyway, I did go on a gluten free diet for a year (no caseine either) and improved greatly. Didn't see any improvement until 3 months so be patient. My labs and endoscopy said no celiac, but I definately improved. Went off the diet and got worse. I don't necessarily think it was from gluten, but a vastly improved nutritional diet while on it. I've also improved off the diet from exercise and sunshine. Have a D deficiency, and am taking large doses of vitamin D. Also, my eye doc said my dry eyes would benefit greatly from fish oil (he was right). The dry itching is dry eyes and omega 3 and DHA really make a difference on this. Sleep apnea is often part of ataxia and after being treated for this the fatigue disappeared. My suggestion is go after each symptom. It will improve the quality of your life. Oh yes, I had been diagnosed with IBS years ago and the intestinal problems persisted for 10 years until I went on the gluten diet. I'm off that now, but have discovered that the combination of sugar and caseine (milk) is more likely the problem. It's under control now, as is reflux (milk and sugar, and late night eating). Many symptoms don't need medical help but common sense. And you may find the docs are not much use anyway. It does sound like you have some form of Ataxia. It could be hereditary, or perhaps caused by gluten. Try gluten free eating and keep reading. If its gluten it'll clear up entirely. If not, you'll likely benefit from the better diet (and weight loss) that a gluten free diet causes you to enjoy. Nice to get all the details of your case. It was very interesting. Good luck

one more thing, my UCLA doc treated the Hashimotos ataxia with first steriods, then IVig (which is apparently hard to get). She said her Hashimotos ataxia patients seemed to improve with this.

Hi, looking forward to your experiences in this, keep me posted!

FeelingOurWay said:

Hi Hans!
I recognise so many of these symptoms! I am diagnosed with gluten ataxia by Dr H of the article at Sheffield and I think you should try and get yourself seen by him there if you could.
I've added you as a friend. I'm still being investigated there and am due back in the near future so when I know more ill let you know.

Hi Hans,

wellcome in this forum by an Austrian Hans sounds so German-like.. Do you speak Germano?

I have also got some sort of ataxia supposedly this which is in my family - a hereditary spinocerebellar ataxia SCA6, which is progressive But yet no test done..

There exists a newer article from two of the same authors of the article you mentioned:


GAD antibody-associated neurological illness and its relationship to gluten sensitivity.

Hadjivassiliou M, Aeschlimann D, Grünewald RA, Sanders DS, Sharrack B, Woodroofe N.

Acta Neurol Scand. 2011 Mar;123(3):175-80. doi: 10.1111/j.1600-0404.2010.01356.x.

[PubMed - indexed for MEDLINE]

Related citations

From this first, newer article we don t know the fulltext, but even the abstract seems informative:
Acta Neurol Scand. 2011 Mar;123(3):175-80. doi: 10.1111/j.1600-0404.2010.01356.x.

GAD antibody-associated neurological illness and its relationship to gluten sensitivity.

Hadjivassiliou M, Aeschlimann D, Grünewald RA, Sanders DS, Sharrack B, Woodroofe N.


Department of Neurology, The Royal Hallamshire Hospital, Sheffield, UK. ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■



The high prevalence of gluten sensitivity in patients with stiff-person syndrome (SPS) lead us to investigate the relationship between gluten sensitivity and GAD-antibody-associated diseases.


We used ELISA assays for anti-GAD and for serological markers of gluten sensitivity. Patients were recruited from clinics based at the Royal Hallamshire hospital, Sheffield, UK. Patients with gluten sensitivity were followed up after the introduction of a gluten-free diet and serological testing was repeated.


Six of seven (86%) patients with SPS were positive for anti-GAD, mean titre 109 U/ml; This compared with 9/90 (11%) patients with idiopathic sporadic ataxia, mean titre 32 U/ml, 16/40 (40%) patients with gluten ataxia, mean titre 25 U/ml, and 6/10 patients with type 1 diabetes only, mean titre 8 U/ml. None of 32 patients with celiac disease only, and of 40 patients with genetic ataxia were positive for anti-GAD. The titre of anti-GAD reduced following the introduction of a gluten-free diet in patients with SPS who had serological evidence of gluten sensitivity. The same was observed in patients with gluten ataxia and anti-GAD antibodies. This was also associated with clinical improvement.


These findings suggest a link between gluten sensitivity and GAD antibody-associated diseases.

Copyright © 2010 The Authors. Journal compilation © 2010 Blackwell Munksgaard.

[PubMed - indexed for MEDLINE]
So an anti-GAD - test, which is not in the usual testing programm e could lead you to further insights about your disease. - actual tests.

Also in the case i you would have HCV, a positive anti-GAD test could show a connection between HCV and an ataxia (another article, i just mention it for the case you would be HCV positive).

What regards the vitamin 12 and magnesium level, these could be in the normal range, but you could also be deficient, because your body would perhaps not be able to use vit B12 and magnesium sufficiently.

My magnesium levels are in the normal range now. But if i would not go on to take 600 mg Magnesium per day, i would have major cramps and pain in the feet and legs (and hands).

Kind regards, Margarete

Vit.B12 had been my concern for a while so i tried taking supplements of it. The result was heavy bowel reactions, out as fast as is went in so to speak... so i stopped taking that.

do any of you often feel like your mouth is numbed. like you just got back from the dentists and had a local anesthetic in your mouth? and do any of you feel that speech problems get worse after a day of talking vey much? (i'm a teacher so i have to talk a lot)

From the Abstract above: "None of 32 patients with celiac disease only, and of 40 patients with genetic ataxia were positive for anti-GAD." Only 32 patients with celiac disease where tested for anti-GAD, but none of them had this antibody. If you would be anti-GAD positive this could suggest that you would nov have celiac disease or a genetic ataxia. But s not exact.

It s complicated with the Vit B12. I never heard from somebody getting bowel reactions of it. In Sweden they supply the elderly to a minimum level of 1000, because of their experience that some disease are more likely to occur if this is not supplied so highly.

There are existing some studies on Vitamin B12 supplementation - always high dosed - 1000 - 2000 ncg /day, as injection following he main regime of 7 days daily and then weekly for a month and then monthly (in variations) The normal Vit B12 is cyanocobalamine, but some people need hydroxocobalamine. Methylcobalamine is said to be the only form of Vit B12 crossing the blood - brain - frontiere, and so i am taking this. Actually this is oral 2 x daily 1000ncg, - i could not say if this has an impact. An alternative would be to take VitB12 methylcobalamin shots to optimize.. Methylcobalamine as injection is not easy to get in Europe..

Kind regards, Margarete

do any of you often feel like your mouth is numbed. --- Yes, i have got this, too. With the speech i did not notice it because actually i don`t talk much. But it could be the same as with my ability to walk. It deteriorizes when i am tired..

i would find it very difficult to work in such a situation.

Your story sounds similar to my. I have not been officially diagnosed with gluten ataxia but have had some great results with being off of gluten for 6 months now. I have chosen not pursue further testing, we have just paid off most of our medical bills from this year. Any medical doctor I had is pretty much stumped since I had an MRI with a lesion on my brain stem and 3 weeks later the lesion was gone. I also read an article on gluten ataxia and sat there and cried because it sounded so much like me. I didn't realize how gluten intorlerant I was until I went off and then accidently had some gluten, within hours I was reacting to it. What strikes me with your story is the symptom of being distant. I've had that and it was ver bizzare and fightening to me. I have not had that symptom since I've been off of gluten. So while I don't have any direct answers, I would encourage you to stick to being gluten and free and patiently wait. I've also gone a few steps further and am on the paleo diet. Just let me know if you would like more info on it or if you would like to talk more. :)

Hi Hans, Your very articlulate about your ataxia which is so great! :0)

I just think all of the replies that you have gotten are so great. See we're not alone and that is one thing that I think helps us to know even that.Thank you for sharing your thoughts with us. I think most people can relate on even a few things you listed.

In my experiance I realise that Dr's only know so much and can tell us only so much as far as they know at the time. I really felt I needed to mention that. Being a hairstylist I did a few Dr's hair and they talked to me on their off time the same as they would to a bar tender. So that's why I feel the way I do. They aren't a god. I believe we all need to be our own advacates as much as we can and maybe get the help of others to advacate for us on our journey with this ataxia. In my case I may never really know which kind that I do have and I go in and out of thinking about it too at times. But overall I truly believe that it really comes down to day to day funtions of what I can do, what I have control over. All what I can do is make small improvements that can possibly add up to something bigger, peices of puzzles.

I really take to heart what my Dr's suggest that I do and try to follow nutrual thoughts. But that said they don't know nutrition that well. And they are just people also that have more thoughts because they have medical school behind them. I believe we all know our body and how it reacts to things more than actually any Dr does. I believe that balancing out everything in our life as being an ataxic person is huge for us. Mental, physical spiritual and and emotional all have to be balanced out. I believe if we are out of balance in any one thing that we are doing with our health that can help our ataxia sysmtoms seems much worse than they are and get worse or even better in my case.I didn't think that was possible nor was I told it would be possible.

Mentally when I focused on what was wrong I got worse. I believe our brains really can help us to a point that is. I still take each symtom that I have a research each one and find out what I can do to help that one more positivly than I was doing and as natural as possible. If that doesn't work I move on to the next thought. So my thoughts and working on helping myself never stop. I am working with Dr Clouse right now and he keeps reiderating that trusting our feet and getting and keeping our weight low, bending our knees just slightly holding our shoulders a bit more forward instead of towards the back help by giving ataxian's more stability. And that thought helps everything I do anymore. Check out his site when you get a chance and can spend some time there.

I can relate to a lot of what you listed too, not now but it brings me back to a time when I was just fearful of this ataxia and the way I just moved or didn't move with it. Being on this journey with ataxia has brought me to places of diffrent thought that I never knew exsisted.

Regardless which type that you have it I think it comes down to what you can do. For me that's started with learning to be more calm and just acepting each step as it went along or didn't go along anymore. When I did that each symtom seemed to get better, so I'm feeling better about this ataxia now. For me I think it's more about controlling things a bit. I learned that I wanted to more than I thought I wanted to. I this can happento you if you want it to regardless of what kind you have.

I think that finding out can put some of your fears to rest but for me I don't rely on that because they don't always know. I was making things much worse worring about which kind I had and trying to cure it so I'd be normal again (what ever that looks like :0) ).

So yes we have to work alot harder than most just to try to be normal. Your not alone in your ataxia. Keep fighting! Your doing a great job! :0)