Recovery from neurological celiac?

[Sarah C]

Hi everyone

After a long journey I am now believed to have a neurological presentation of celiac. My symptoms were an increasing leg weakness. By weakness I mean that the muscles simply stopped working and I was unable to walk on my toes, then my heels ( foot drop) then unable to stand on that leg.  I did not feel weak at all. I just could not do things.  

After a month gluten free I am definitely improved.  

 

My question is:  is there anyone with a similar story?  If so, how long was it after symptoms that you found out and did you get all the way better?

i found a clinical paper detailing someone who, like me, was thought to have ALS but was then found to be celiac. He improved but always had some residual weakness.  I am grateful for what I have now but would love to be able to hope for full recovery. 

Thank you in advance

[GFinDC]

Hi SarahC,

What you are describing is known as gluten ataxia.  Gluten ataxia impacts the brain.  We do have members who have had gluten ataxia and recovered substantially.  You can try a search of the forum to find their posts, or maybe they will see your thread and reply.

Welcome to the forum SarahC

[Ennis-TX]

I found it rebounds with the weakness if your get exposed again and hangs around for a few weeks slowly tapering off. The initial phase out took months before I had energy back. I only ever had the full body collapse a few times with very heavy gluten exposure. As for further neurological and nerve issues, I still have issues with feeling in hands and feet, this has slightly improved over the years. The brain, and issues with doing things I used to be able to and and brain damage seems to have hardly changed. The fog is gone unless exposed again, but some things just seem to be gone. I hear nerve damage is very slow to heal, if your immune system attacked your nerves and damaged them you might be in the same boat.

I found a few supplements seems to help with the issues, you might want to look into talking with a dietician about any issues you have might have. Magnesium helps alot, along with, B-vitamins, Iron, Vitamin D, Vitamin C, Niacin, there are a few others that are common among us with celiac disease.

Said you have been gluten-free a month I will go  ahead and share a few links, things like the newbie thread, a idea of foods and where to get them, and a link to show a thread of what supplements some of the others on the thread take and why they take them.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

PS welcome to the forums this is a great community for helping you find out stuff about celiac, get input and support from others, and just vent sometimes.

 

 

[Sarah C]

Thank you. It is not exactly gluten ataxia but likely on the same spectrum.  I am not ataxic and had no cerebellar signs on clinical exam

 

Ennis thank you for your input.  

 

[ironictruth]

Ttg 6 is the antibody involved with the brain. There have been studies on ALS symptoms being related to gluten. 

There is also a correlation between celiac and MS, but it is just that, a correlation. 

God, I read somewhere  about a guy on a plane who had Celiac neurological symptoms and happened to be sitting near  a physician who told him a minimum of a couple of months before they saw Improvement. if i find it, I will posit it. 

 

[EmmaFromLondon]

Hi Sarah.  Ok, so just how RANDOM is life?!!  I was just googling Old El Paso Tacos to check if they were gluten free and an answer on this site - with your question on the left side bar - popped up.  Random as statistically, your chances of meeting another neuro presenting Coeliac (as we spell it over here;) are frankly slim to zero!  I have literally just signed up only so that I can reply to you!

So, the man you want to be googling is Dr Marios Hadjivassiliou who runs the only Neuro Gluten Clinic in entirety of UK and is probably the world's leading authority on the subject.  My own diagnoses (DX) took nearly 5 years as my symptoms too were primarily neurological (list just endless but I'd be happy to talk to you if site has a way of PM'ing phone number?)

VERY long story cut VERY short is I saw every frickin specialist you can imagine, had private healthcare and money wasn't an issue so I wasn't even limited to the NHS and longer referral appointment times between specialists but it STILL took years of horrific illness - and terrifying given primarily Neuro based, like I genuinely thought had brain tumour or MS or such like; was horrifying - to get a DX.  DX finally got only AFTER read a (tiny, so again sheet luck) piece on Hadjivassiliou's work called 'Bread causes migraines' in one of the national newspapers.  I marched BACK to one of my then endless consultants and insisted on blood test for Coeliac and I recall him laughing at me [grrrr...] but thank god I held my ground as my marker came back positive and gut biopsy confirmed it.  Gastroenterologist insisted all would be well within 3 months once villi grew back.  That was a crock of sh*t.  He knew NOTHING vis Cryptic Coeliac (typically the term used for Coeliac that does not present primarily as digestive issues) - worse, as was by then so so familiar to me from very senior consultants across all specialisms, nor would he concede that he did NOT know everything IYKWIM?

So 3 months on strict gluten-free diet comes and goes, and actually much that I hadn't even realised was 'wrong' started to improve but the Neuro symptoms were not shifting and Gastro knew NADA about them and just dismissed me.  Eventually I decided I HAD to see Dr H. even though he is based in Sheffield Hallam Hospital which is literally hundreds of miles away from me and even harder as he is a Doc of principle and does NO private work so I had to beg his NHS secretary for an appointment.

He was an utter revelation.  He nodded with EVERY symptom I discussed, he knew my walk and he knew my tribe.  The simplest headline he offered me was, in his experience and from his cohort of patients, that the Neuro symptoms were much much slower to lift than the gastric ones.  Further, those that were still present at the 2 year mark were likely to not further recover.  He was absolutely spot on correct.  

ALL of my neuro symptoms bar migraines (so balance issues, muscle weakness, golden 'rain' in front of my vision, vertigo - list just endless) gradually lifted by that 2 year mark and (again, bar migraines which remained daily/chronic/intractable having onset SO suddenly 5 years previously and never ever suffered before) they have never returned.  I now have the PRE-Empt Botox Protocol for migraine prevention so even that last lingering Neuro issue does have some resolution.

I lost literally years of my life to this due to the failure of GPs and Specialists not even knowing how Coeliac (celiac disease) presents and have made it my mission to raise awareness which, fortunatly, my profession has enabled me to do.  It is now believed that what USED to be regarded as 'typical' symptoms of celiac disease are actually the minority symptoms - hence one in a hundred people having celiac disease but only one in EIGHT of those ever beig diagnosed.  IE for you and me and every other single other person who HAS a DX, there are another 7 poor souls living in torture and terror simply due to a lack of GP/MD education.  It infuriates me (can you tell?!!)

Please, google Marios, his research will be your new best friend and answer questions you may even realise you had until you see his work.  Really hope this has helped in some way, back off to search for my gluten-free Tacos again now!

Kindest regards and such best wishes, Emma x

 

[Sarah C]

Thank you ironic. 

 

Thank you Emma for taking the time to share.  I found a paper by that doctor and it looks like I am the rarest of the rare - pure motor neuropathy. I am sorry you have had to deal with such an array of symptoms.  The possibility of it taking 2 years to recover as much as is possible is actually encouraging in that I can retain hope for that time that I will get all the way better.  

Thanks again and best wishes to you

[Jmg]

Welcome Sarah! I hope you find this site as useful and supportive as I have. 

I was still finding improvements many months into the gluten free diet. As others have said the neuro symptoms seemed to take a little longer, although the fog lifted quickly. I get occasional twinges which I put down to possible cross contamination.At one month you probably have a lot more improvements to look forward to, so be positive

Hi Emma also and welcome

I found your account fascinating. I have read as much of Dr Hadjivassiliou's writings as I can find and whilst I was still looking for answers gave serious thought to a trip to Sheffield if I could beg an appointment. In the end I finished with diagnostics after my negative endoscopy and decided to just concentrate on the diet and getting better, but if there was one doctor I could speak to he would be the one. It's nice to see another Brit here on the forum.   

 

[EmmaFromLondon]

Thanks for the welcome JMG and likewise vis a fellow Brit - I think I might stick around

And Sarah, you honestly have SO much scope for hope (no rhyme intended!), you really really do, you are RIGHT at the beginning of your recovery and I can promise you from my own experience that stuff really DOES shift.  Am labouring that point as I know just how vital 'hope' is and you genuinely are able to have it in spades, if you're already seeing improvement just one month in then Lord knows how much scope you have for improvement in 24 months.  The other thing it's vital to always keep front of mind IMHO is that we really are the 'lucky ones' - it's the poor sods still being dismissed as having IBS, or 'balance' problems, or 'nerve' problems yet are no closer to finding out their actual truth that I feel horrendous for.  One last thing, no clue if you have it but if you do have brain fog I would utterly recommend downloading the Words With Friends App - it helped my brain start to have to focus again as well as driving engagement with others; something that was lost when I was lost.

Am so glad I happened upon your post and I hope that my post is of help to others when they are looking for answers as I know most simply do not have access to the skill of Dr H and the hope that that knowledge gifts them.

JMG, one last thought - have you thought of doing the York Test?  It's a bit pricey but very well worth it IMHO, ESP if your bloods are showing elevated inflammatory markers (CRP and ESD, former esp as can directly rise in response to ongoing Ig responses in body).  Bit of a pain then needing to trial excluding other foods from diet when already tad restricted by celiac disease but what price health, freedom, and energy?  I'd rather be on a restricted diet but able to paddle board than eat whatever I fancied but be sofa/home bound!!!

[Sarah C]

Thanks again Emma.  I really relate to your sofa/ paddle board comment.  We were on holiday and everyone was taking turns paddle boarding and I could only sit and watch.  And I get my friends to tell me about their gym classes- a combination of self- torture and living vicariously!

 

You are my new role model

[Posterboy]

Sarah C,

I don't know if this will help you are not but I would research it.

I dr. googled it (link below) but I knew where to look.

Niacinamide has great memory boosting ability at least in mice studies.

See this link from from the life enhancement website.

http://www.life-enhancement.com/magazine/article/2049-nicotinamide-restores-cognition-in-alzheimers-disease

A more scientific review can be found in the hindawi journal.

https://www.hindawi.com/journals/cggr/2012/302875/

I  will quote from the neurological presentations of Pellagra they site.

read the whole article when you get a chance but I warn you it is very technical.

quoting

"Mental symptoms were wider than dementia, in that depression, fatigue, psychomotor retardation, mania, obsessions, and a whole range of psychoses with auditory and visual hallucinations were well described, along with personality change and sociopathic and drug and alcohol addictive behaviours. Panic disorders were seen as was a general inability to deal with physical or mental stress. Poor brain development such as hydrocephalus or cerebral palsy was also common. Acute delirium or even coma occurred, with some patients having myoclonus and other extrapyramidal signs reminiscent of the spongiform encephalopathies. The dementias of pellagra included features akin to Lewy body, Alzheimer’s, frontotemporal, vascular, and prion diseases. Parkinsonism was also common and a festinant gait was first described in pellagrins. Tremors of various descriptions, including asymmetric rest tremors, were noted and some patients had typical paralysis agitans. Pellagrins had a characteristic expressionless facies, so some signs of parkinsonism were present in most cases. Many features of pellagra closely resemble the nonmotor aspects of PD.

The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants."

You can see Pellagrins' often have mental presentations that doctor's don't know to look for any more today.

Dr. Heaney's blog has a great summary article on why doctor's don't look for it (Pellagra) today.

http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/

This article on celiac.com talks about why Pellagra might be being confused as celiac disease today.

https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

You can have your B-3 levels checked to see if Niacinamide/Niacin aka Nicotinic Acid (think  how Vitamin C is also known as Asorbic Acid) might help.

In fact I would have all your B-Vitamin levels checked.

It might not be . . . and it probably isn't but in the off chance it could be it might be worth checking into.

Homocysteine levels can also affect brain / memory issues.

see this dr.google link.

http://www.lifeextension.com/magazine/2009/8/Is-Homocysteine-Making-You-Sick/Page-01

B-Vitamins help us more with stress than we know.  New research even indicates they can help keep us healthy in areas that have heavy air pollution.

http://www.cnn.com/2017/03/14/health/vitamin-b-pollution/index.html

If you have stress taking B-Vitamins can help you.

*** this is not medical advice

good luck on your continued journey.

I hope this is helpful.

posterboy,

[Mermaid's Mom]

wThis is such a timely post for me as we are just realizing that my daughter has neurological issues related to celiac/gluten intolerance.   Almost 3 years ago, hen she was 10 she was no longer able to swallow food.  Prior to that there were of course issues with anxiety and sensory things but the inability to swallow was what started the nightmare.  She was in the process of also being diagnosed with ADHD and then came along the diagnosis of Sensory Processing Disorder.  She did LOTS of therapy to learn how to swallow again followed by 2 years of food therapy where she learned to like food again.  During that time she really started to decline neurologically - which is not a surprise considering her therapy consisted of eating goldfish crackers and pretzels as she relearned to eat  solids.

The occupational therapist noticed some other abnormalities in her movements and coordination and we uncovered how disorganized her brain was in terms of gross motor movement.  At that point she was also diagnosed with Dyspraxia.  Then she started having mobility issues and numbness in her extremities.  She was also having issues with depth perception and her eyes distort the image.  So of course she was diagnosed with Visual Processing Disorder.  Soon after we noticed that her hearing was NOT what it should be.  We took her for testing and sure enough she was diagnosed with Central Auditory Processing Disorder.  Her hearing test revealed that she had better than average hearing but her brain was scrambling the audio.  She scored only 40% comprehension in one ear and 65% in the other and was fitted for assisted listening devices.

Then she was struck by Vertigo and never really recovered her balance after that.  By now we were seeing a Neurologist who diagnosed her as Gifted twice exceptional and said that from a Neurological perspective that there was NOTHING wrong with her.  That what she was experiencing was the result of being gifted AND having one or more brain based disorders (she was now officially diagnosed with MANY) and on a whim he ordered blood work to check for B12 levels and Iron.  And they came back as deficient.

So in total she was diagnosed with in order:  Chronic constipation (started at 3 years old), anxiety, insomnia, ADHD, Dysphagia (swallowing) SPD, OCD tendencies, Dyspraxia, Gifted2e, Vertigo, Low B12 and low Iron.  And no one ONCE suggested Celiac.  At one point there were no more tests we could run, no stones left unturned.  I had dedicated 2.5 years to bringing my daughter back to the girl she used to be and I was faced with the reality that I now had to stop trying and start to create a new normal.  Her education was modified.  She qualified for disability and was legally given the classification of disabled. 

Four months later I no longer accepted it.  But I knew there was no one that was going to help me so I decided to have one more kick at the can and try the ONE thing that I had wanted to try for years but was unable to because of her eating issues.  I decided to put her 100% Gluten Free.  Thanks to years of therapy she was now willing and able to tolerate and try a variety of textures and tastes and smells and she was motivated to try anything.  No sooner did I start researching Gluten Free when I stumbled across the top 10 symptoms of Celiac and read about my daughter.  I do believe she has Gluten Ataxia and I am more hopeful than ever that at 13 I can reverse a lot of this for her.   At only one month in the difference is astounding!  Her brain fog has almost entirely lifted and she no longer has difficulty with auditory input.  She has stopped wearing her listening devices and is no longer bothered by most sensory input.

It is so amazing to connect with others that have the same issues and I am buoyed by Emma's words!  I would love to hear about how you are both healing and follow your stories!

[ravenwoodglass]

7 hours ago, Mermaid's Mom said:

 

 

Four months later I no longer accepted it.  But I knew there was no one that was going to help me so I decided to have one more kick at the can and try the ONE thing that I had wanted to try for years but was unable to because of her eating issues.  I decided to put her 100% Gluten Free.  Thanks to years of therapy she was now willing and able to tolerate and try a variety of textures and tastes and smells and she was motivated to try anything.  No sooner did I start researching Gluten Free when I stumbled across the top 10 symptoms of Celiac and read about my daughter.  I do believe she has Gluten Ataxia and I am more hopeful than ever that at 13 I can reverse a lot of this for her.   At only one month in the difference is astounding!  Her brain fog has almost entirely lifted and she no longer has difficulty with auditory input.  She has stopped wearing her listening devices and is no longer bothered by most sensory input.

It is so amazing to connect with others that have the same issues and I am buoyed by Emma's words!  I would love to hear about how you are both healing and follow your stories!

This is such gret news! I first presented with ataxia at about the same age as she did.  I progressed much slower but by the time I was diagnosed I could barely walk unaided, had trouble with swallowing and choking (very scarey!), aphasia, vision difficulties, migraines and memory problems along with depression that was at times so severe that if I hadn't had children I wouldn't be here.

As quickly as she is responding she may have a full recovery from the ataxia. I have had almost full recovery but do have some residual damage but I was undiagnosed for over 40 years.

 

[Mermaid's Mom]

3 hours ago, ravenwoodglass said:

This is such gret news! I first presented with ataxia at about the same age as she did.  I progressed much slower but by the time I was diagnosed I could barely walk unaided, had trouble with swallowing and choking (very scarey!), aphasia, vision difficulties, migraines and memory problems along with depression that was at times so severe that if I hadn't had children I wouldn't be here.

As quickly as she is responding she may have a full recovery from the ataxia. I have had almost full recovery but do have some residual damage but I was undiagnosed for over 40 years.

 

I liked your post because it was so hopeful to read that you think she may have a chance at a full recovery but I HATE that you had to suffer that long with those issues.  It has been painful to watch this beautiful girl waste away.   I hate that anyone else has suffered that way.   Definitely we are see HUGE differences in her personality.  Over the last few months she withdrew from "family life" so much that we felt like a family of three (I have a son) with a girl who isolated herself away in the basement in her therapy room all evening.  My son no longer had a buddy and it was depressing to communicate with her because the brain fog was so severe.   When she stopped eating Gluten that went away over night.  

I know we have a long road ahead of us but at least we are back on a road!!  And one that seems to be heading somewhere.  Thanks for sharing your story it is comforting to read about others who have walked before us!

[Kazakabee]

Hi EmmaOfLondon

Hoping you still get messages as your post was quite a few years ago.

I have an appointment in 3 weeks with Professor H.  Partly excited, partly fearful.  Have had loads of blood tests many months ago at Sheffield so I'm hoping to get some results, finally.  It's been 7 months.  

I was getting more and more depressed waiting with no improvement in my symptoms, so to stop myself falling deeper into a black hole, I have started going gluten free.  I am now in day 11 and have already started to see changes for the better.

My question for you was, how strict is strict.  I haven't eaten anything knowingly containing gluten for the 11 days, but not sure about cross contamination?  What was the advice on how strict from the man, Prof. H?

Woild be so great to hear from you and also hear how things are for you now.

 

K

[Scott Adams]

Welcome to the forum, and it is doubtful this thread is being followed by anyone after 4 years, so I wanted to chime in.

Are your tests for celiac disease finished? If not, you need to keep eating gluten until all testing is finished. Did you receive a celiac disease diagnosis? If so, your diet should be very strict, and this may help:

 

[Kazakabee]

15 hours ago, Kazakabee said:

Hi EmmaOfLondon

Hoping you still get messages as your post was quite a few years ago.

I have an appointment in 3 weeks with Professor H.  Partly excited, partly fearful.  Have had loads of blood tests many months ago at Sheffield so I'm hoping to get some results, finally.  It's been 7 months.  

I was getting more and more depressed waiting with no improvement in my symptoms, so to stop myself falling deeper into a black hole, I have started going gluten free.  I am now in day 11 and have already started to see changes for the better.

My question for you was, how strict is strict.  I haven't eaten anything knowingly containing gluten for the 11 days, but not sure about cross contamination?  What was the advice on how strict from the man, Prof. H?

Woild be so great to hear from you and also hear how things are for you now.

 

K

 

4 hours ago, Scott Adams said:

Welcome to the forum, and it is doubtful this thread is being followed by anyone after 4 years, so I wanted to chime in.

Are your tests for celiac disease finished? If not, you need to keep eating gluten until all testing is finished. Did you receive a celiac disease diagnosis? If so, your diet should be very strict, and this may help:

Hi Adam and thank you for your very helpful reply.

I have a follow up appt. 23.02 They took loads of blood in July 2021 so I'm hoping to get results from that.  I don't know if they intend doing any more.

I admit I put myself on the gluten-free diet as just can't bear the symptoms and the waiting any more.  I had to try something to give me some hope.  Was that the wrong thing to do? 

4 hours ago, Scott Adams said:

 

 

[Scott Adams]

I am surprised at the very slow time-frame...July 2021, and you're just now getting those results? Is there any way you could have the blood test results mailed or emailed to you? 

My guess is that they could not even schedule an endoscopy for you for several months at this rate. Perhaps you should just go gluten-free now, but if they do want to do the endoscopy to confirm anything you would need to eat 2 slices of wheat bread daily for at least 2 weeks beforehand.

[Kazakabee]

I am at my wits end I must admit.  Have been told NOT to go gluten-free yet as it skus test results.  2.5 weeks to go to my follow up and hoping to have some answers (dear God please).  So far every positive step I have taken has led to a brick wall.  Eat well, sleep well, keep active, cut down on alcohol, caffeine, sugar, wheat,  meditate, drink water, and so it goes on.  Just plain running out of positivity at the moment.  It's just so not me.  Don't really know what else to say.  Hopefully I will get some positive recovery stories back, please no bad stuff everyone.

 

K