Gluten Ataxia (only)?

[BamBam]

I have read every word of this thread with great interest. I'm at work and every break I have been able to take, I am reading and reading.

I too suffer from an ataxia that is genetic, my father was handicapped and we went to a children's hospital when young and they told us it was all genetic, live with it.

I started having intestinal discomfort when I was 22 (I'm 40 now) and went to doctor after doctor and finally a friend told me to lay off gluten. It helped immensly with the intestinal problems. But I didn't give up gluten all the way, I gave up donuts, pizza and the big things, I had no idea that gluten was in 99% of everything you buy or order at a restaurant with all the midleading ingredients and things.

JenVan (here on the board) last year, challenged me to not eat any gluten - "if you don't know what is in it, don't eat it." Since I've been gluten free my walking is better. I kinda walk like a drunk, shuffle my feet and my balance is not good at all. I need railings on all steps or somebody to hang on to. But as time goes on it seems to get better and better.

Now this last weekend I ate some uncontaminated oats, to see if they worked for me or not. I had pain in my hips and thighs and my walking was bad, really bad. So I am a firm believer that gluten affects people in many ways, including gait. So when I do accidently eat gluten, I can definitely tell in my walking ability.

My brother is in a wheelchair, he was able to walk until he was about twenty nine/thirty, but he has absolutely no muscle strength and absolutely no balance and he must be in a wheel chair. I am going to ask him to read this thread and see what he thinks. I think the damage is so bad that there probably isn't anything to do for him. He also has some intestinal problems too, so maybe we can get that taken care of.

BamBam

[Nancym]

It seems like I read something about gluten based brain damage and prospects of recovery not too long ago. I think it was one of those things you really want to catch sooner rather than later.

[Gutsy Girl]

There IS a form of gluten induced brain damage. A doctor named Hadjivassiliou has done a lot of research in this area. There will often be no villious atrophy and no postive blood test results. You'll find a lot of the papers he has written in The Gluten File (link in my signature) under neurological manifestations. Maybe someone has already clued you into this, I haven't read the entire thread.

Someone else just got a diagnosis for their child of gluten sensitivity related neurological disorder with no GI damage.

There's a forum or two I could steer you to with a lot of interest (and knowledge) in gluten brain issues. Send me a PM if you'd like the URLs. Great friendly people.

I have been reading as much of Hadjivassiliou's articles as I can access for free through PubMed. So far, so good. I brought a bunch of them to my doc. He wondered why I wanted a diagnosis of gluten ataxia. Ha! He totally didn't get it! I don't want a diagnosis of something I DON'T have (after all, I have a long enough list of diagnoses), but I want CORRECT diagnoses! Anyways, I need new docs.

So, if anyone is still reading this, and especially Nancym, could you send those links you talk about here? Thanks!

[Gutsy Girl]

I hope this forum topic is still active! I could really use some support. I'm so lost, frustrated, scared, and overwhelmed.

Honestly, I think I just need a hug.

[mushroom]

Hi, FeelingAlone, and welcome to the forum. That's why we're here, so no one need ever feel alone

This particular thread of the forum has not been active in several years. I would suggest that you start a thread of our own, introducing yourself and your concerns and issues and you will probably get a lot better response when people start getting to know you and can offer specific help to your situation.

And here's that hug you need {{{{HUG}}}}

[Gutsy Girl]

Hi, FeelingAlone, and welcome to the forum. That's why we're here, so no one need ever feel alone

This particular thread of the forum has not been active in several years. I would suggest that you start a thread of our own, introducing yourself and your concerns and issues and you will probably get a lot better response when people start getting to know you and can offer specific help to your situation.

And here's that hug you need {{{{HUG}}}}

Hi mushroom,

Your name makes me chuckle and smile! Thanks for the welcome! I am trying to "dig in" and get to know people and more about what makes my body tick. HUGS MUCH APPRECIATED!!!!!!!

[ravenwoodglass]

I hope this forum topic is still active! I could really use some support. I'm so lost, frustrated, scared, and overwhelmed.

Honestly, I think I just need a hug.

Welcome and hugs (((((((((((((((()))))))))))))))))))

I have gluten ataxia. I had it since childhood. It progressed to the point where I had to use canes to walk and my family did extensive remodeling on the house because we thought I would be in a wheelchair soon. Then I was finally diagnosed with celiac. My progress was relatively slow but by the time six months had gone by I could walk pretty much unaided. It is now 8 years later and although my ataxia is still present to some extent I can walk normally now most days and and 2 years after diagnosis they discovered I had reflexes again in my legs. I had lost those in childhood. Have you had an MRI? 3 years before I was diagnosed they did one because they thought I had MS. They found something called UBOs, unidentified bright objects. Unfortunately my clueless doctor didn't know what those were and after a spinal to check for demylinating debris was negative just shrugged his shoulders and said, 'lots of people have those they mean nothing, here have a prozac'. Those lesions are in fact diagnostic of celiac that has attacked the brain. If you have had an MRI get ahold of those films even if the doc has said it was normal. The lesions look like bright white spots on the film.

As was suggested please do post also as a new topic. Many, including myself don't always read the older posts. my bad, and sorry for the delay in the reply.

[trip]

This is a reply to Claire, 28 September 2005 regarding hereditary ataxia or anyone who has any information on hereditary ataxia and gluten. I know this was old but I wanted to know what she found out about her ataxia being hereditary as my husband has cerbellum ataxia type 6. I have never thought hereditary ataxia could be affected by gluten but would love more information.

[ravenwoodglass]

This is a reply to Claire, 28 September 2005 regarding hereditary ataxia or anyone who has any information on hereditary ataxia and gluten. I know this was old but I wanted to know what she found out about her ataxia being hereditary as my husband has cerbellum ataxia type 6. I have never thought hereditary ataxia could be affected by gluten but would love more information.

You may want to do a search using the name of the ataxia and the word celiac. There are quite a few studies that have been done in the last few years on ataxia and celiac or gluten intolerance.

[Estes]

Good Afternoon Gluten Ataxia... I just got my brain back after being absent this morning.  Does anyone on this thread have any follow up on gluten ataxia?   I have celiac and little to no tummy issues and no skin issues.  My main issue is my brain with a little annoyance in one ear and maybe swallowing.  Anyone else?  This thread is 11 years old and I am looking for my next step.  I live near Mayo Clinic but am unsure what type of specialist I need.

[cyclinglady]

1 hour ago, Estes said:

Good Afternoon Gluten Ataxia... I just got my brain back after being absent this morning.  Does anyone on this thread have any follow up on gluten ataxia?   I have celiac and little to no tummy issues and no skin issues.  My main issue is my brain with a little annoyance in one ear and maybe swallowing.  Anyone else?  This thread is 11 years old and I am looking for my next step.  I live near Mayo Clinic but am unsure what type of specialist I need.

Since you decided to accept (or not fight) your PCP's diagnosis of celiac disease, your best bet is to stick to a gluten free diet and be patient!  Ataxia means "walking or gait" and other MS-like symptoms.  Those with suspected MS should be tested for celiac disease.  Brain fog is common in all celiacs.  It usually resolves when you have started to heal.  Swallowing issues are also common with celiac disease.  

How much time?  Two years for me and I did not have tummy issues, just anemia, when I was first diagnosed.  It took a few months to become non-anemic, but I realized afterwards that I had "hidden" issues like osteoporosis, brain fog, anxiety, a pinching stomach, swallowing issues, constipation (I went every day but did not realize that the transit time was three days!), itchy spots, tingling legs, not to mention, menopause (went right through it) and an unstable thyroid.  

 

[Estes]

Your feedback is so helpful!  I thought I would let you know that I am 41 and maybe peri menopausal.  I have a gatekeeper for a Dr.  I am trying to go around her.

I would not be too surprised if they find more issues as I progress on this journey. What is a pinching stomach?

 

Thank You Cyclinglady!

[cyclinglady]

4 hours ago, Estes said:

Your feedback is so helpful!  I thought I would let you know that I am 41 and maybe peri menopausal.  I have a gatekeeper for a Dr.  I am trying to go around her.

I would not be too surprised if they find more issues as I progress on this journey. What is a pinching stomach?

 

Thank You Cyclinglady!

It is an old symptom.  When I would bend over, I would sometimes feel my stomach (the actual stomach/organ) pinching or folding.  I am thin and I could see my stomach (the organ) actually sticking out (swelling) from my left rib cage.  That resolved when I went gluten free and it came back after a bad glutening in July. Weird, huh?

Anyway, I thought my aches and pains were due to my Hashimoto's, Thalassemia,  and perimenopause.  Had those, but the un-checked celiac disease was source of many issues.  

[sademerkki]

Old post, but I figured I'd add my two cents. Interesting to know I'm not the only one who staggers to the left! Especially in the morning, ugh.

I fixed a lot of my digestive symptoms by going gluten free, but the balance issues were much more persistent. I ended up reading about cross contamination in harvesting and after that over hauled my diet again. Mostly veggies, eggs and wild fish and any veggies grown with cover crops peeled beforehand. Never felt better in my life. I've stayed strict with it and exercised a lot and my balance problems and fogginess have gone away. Maybe for some other people too, cross contamination is the issue? Don't know how well a severe case would respond, but hope this helps someone.

 -Lea

 

[ChiaChick]

Wow. Wow.

I have just read this from the first post (in 2005) to the last. I can relate to so much of this. My ataxia symptoms are not as bad as many, but troublesome nonetheless. Early days for me and much to learn. I really appreciate all the links that have been posted, and will be reading through them in due course. Thank you.

It makes me very sad to hear how many other people have suffered like I have, and worse. It makes me frustrated at how ignorant the medical profession is at this point in time. I hope that together, this can be changed; for our children especially. 

The thread gives me hope that you we all here and can share and help each other; whether it be verifying symptoms suffered, or offering advice, or just comradeship and understanding. Jenn

 

[Peaceflower]

1 hour ago, ChiaChick said:

Wow. Wow.

I have just read this from the first post (in 2005) to the last. I can relate to so much of this. My ataxia symptoms are not as bad as many, but troublesome nonetheless. Early days for me and much to learn. I really appreciate all the links that have been posted, and will be reading through them in due course. Thank you.

It makes me very sad to hear how many other people have suffered like I have, and worse. It makes me frustrated at how ignorant the medical profession is at this point in time. I hope that together, this can be changed; for our children especially. 

The thread gives me hope that you we all here and can share and help each other; whether it be verifying symptoms suffered, or offering advice, or just comradeship and understanding. Jenn

 

Hi, I am a teacher with gluten intolerance, only it is airborne also.  I went to Sheffield on a completely gluten free diet and was told that my numbness and symptoms were not enough to diagnose and I was told to eat gluten for two or three months in order to have testing.  The issue is that I don't want to knowingly kill off brain cells and cause lesions in my brain.  I only need to walk into a bakery and my knees buckle.

 

[ChiaChick]

1 minute ago, Peaceflower said:

Hi, I am a teacher with gluten intolerance, only it is airborne also.  I went to Sheffield on a completely gluten free diet and was told that my numbness and symptoms were not enough to diagnose and I was told to eat gluten for two or three months in order to have testing.  The issue is that I don't want to knowingly kill off brain cells and cause lesions in my brain.  I only need to walk into a bakery and my knees buckle.

 

I am on Prednisone, for Marked Thrombocytopenia, and will be for some time they say. A catch 22 as they believe the gluten intolerance could be causing the Thrombocytopenia. This would render any testing useless, so it seems silly to continue to ingest gluten. I have put up a new thread today, and am hoping to get some feedback from others. Just now I have been looking into what is written in my MRI report. It states "There is a single white matter hyperintense focus in the right frontal juxtacortical white matter." The report also states "T11, T12, T3, T5 and T6 vertebral body haemangiomas are noted". No idea what any of this means, but whilst I am not panicking, I suspect that it is not fantastic. Any comments are welcomed.

I am sorry to hear that your gluten intolerance is so severe Peaceflower. It is such a shame that the testing requires further damage to our bodies to "find" the cause.

[Peaceflower]

2 minutes ago, ChiaChick said:

I am on Prednisone, for Marked Thrombocytopenia, and will be for some time they say. A catch 22 as they believe the gluten intolerance could be causing the Thrombocytopenia. This would render any testing useless, so it seems silly to continue to ingest gluten. I have put up a new thread today, and am hoping to get some feedback from others. Just now I have been looking into what is written in my MRI report. It states "There is a single white matter hyperintense focus in the right frontal juxtacortical white matter." The report also states "T11, T12, T3, T5 and T6 vertebral body haemangiomas are noted". No idea what any of this means, but whilst I am not panicking, I suspect that it is not fantastic. Any comments are welcomed.

I am sorry to hear that your gluten intolerance is so severe Peaceflower. It is such a shame that the testing requires further damage to our bodies to "find" the cause.

Look up Professor Marios Hadjivassiliou, Open Original Shared Link, Open Original Shared Link.  It is possible to be referred by your local GP after an application for referral outside of area, but you must continue eating gluten or speak to the secretary and waiting time for new patients is about three months.

[ChiaChick]

Thank you Peaceflower. I will read the links you provided. I am in Australia, so it might be a bit far to go.

Other thoughts: I am guessing that you already know, but I have seen that gluten is found in beauty products, shampoo/cond, toothpaste, pet food, postage stamps (don't lick them), medicines, and all sorts of other hiding spots. Sorry if I am stating the obvious to you, but I would never have thought of some of these. As my family is still undergoing testing, our house is not yet gluten free. I only started today because I found out they are not going to take me off the prednisone. Perhaps if one or both of my boys are found to be Celiac, they will diagnose me based on symptoms, genetics and probability without the biopsy.

[Peaceflower]

Hi ChiaChick,

Yes, it is in shampoo and soaps and creams and toothpaste and fluoride and I discovered even in frozen veg from our local supermarket because I asked them to find out about cross contamination after I was ill following eating frozen peas and also frozen sweetcorn.  They were very reluctant to tell me, but they said it is produced on a line that handles barley, but it is present in 'the sweetcorn' in such small quantities that it does not require a mention on the packaging.  It is also in spray deodorants and plaster in buildings (as a bonding agent).  Red cheese and some margarines and icecream contain a colouring derived using wheat (annatto E160).  Some medicines contain Ethanol that is derived using a distilling process involving barley straw or wheat.  Some sugars come from wheat, some gels.  I never trust a gluten free label.  I have often found that added flavouring contains gluten, such as soy sauce added to something just labelled 'flavouring'.  Most manufacturers receive ingredients to add to their foods, like mint flavour, and wouldn't check the contents for something such as maltodextrin from wheat, or dextrose from wheat.  I buy black farmer sausages and they tell me they only ever use corn/maize based dextrose.

A minefield.  Ironically, anti-histamines can contain traces of wheat I discovered!!

Must go but will check back in soon.

[sademerkki]

Chiachick,

I was also prescribed prednizone initially, since the doctors thought my celiac symptoms were caused by an infection. I found that it only made my symptoms worse so I had to stop taking it. Years later, my homemade yogurt it my only medicine. On days when't  I don't have it, my coordination is noticeably worse.

I originally started making it because I read a study linking refractory celiac disease to gut bacterial imbalances. the study found that bifidobacterium lactis and I think lactobacterium rhamnosis alleviated symptoms in patients. I'll try to find the study and post it when I have time.

-Lea

[sademerkki]

Open Original Shared Link

Found the article about bifidobacterium lactis. It was lactobacterium plantarum, not rhamnosis. Lol. Shows what I know.

Also here's the article on cross-contamination in refractory celiac disease that I mentioned earlier:

Open Original Shared Link

I had to start ingesting gluten again to get diagnosed. Symptoms aren't as bad as before, probably due to massive amounts of yogurt. Hope it doesn't take too long to get sorted. Don't need any more coordination and speaking problems than I already have. O.o

-Lea

[ChiaChick]

@sademerkki,

Thank you very much for the information. I have just read both studies you linked for me. Yoghurt is awesome, and I eat a plain/natural yoghurt with no sugar most days. (It is only a shop bought one though) I am very open to us making our own, and will look into this.

Prednisone in my case has not made my symptoms worse. I have seen some improvement in symptoms while on it, but it took longer than the doctors expected. (I think because it has brought about some healing in my gut). They were expecting a more immediate response because at the time, they thought I had Lupus, which testing later ruled out thankfully. My understanding is that Prednisone reduces the body's immune response (hence why testing will bring false negatives - because the body has a harder time mounting an attack), and the reason the gut can heal I think is because Prednisone reduces inflammation. A combined effect if you will. This is my understanding anyway. I could be wrong (correct me if you know better!)

I have to stay on the Prednisone, because Thrombocytopenia can cause brain haemorrhage/spontaneous bleeding in any part of the body, and my platelet levels were falling very fast. There was talk of Platelet transfusions if it did not respond to the Prednisone.

I have some acidophilus capsules in the fridge, and it is clearly time to start taking them again. I have looked, and they have both strains of the acidophilus you mention. The brand is BioCeuticals UltraBiotic 45 which is Practitioner Only supply, and has 45 Billion CFU per capsule. Says it is dairy free and vegan. Now to look up and make sure it is gluten free, because it is not written on it. One would hope so! 

Thank you again for your help. Jenn

[ch88]

The body can respond to gluten, without it effecting the gut in any way. A lot of people have for example skin conditions without any digestive problems.

One person that I read on this forum, had symptoms of gluten ataxia which where only temporary and occurred immediately after eating something with gluten.  I don't know if recovery is possible, but I would not discount it completely. I would start by making sure you are on a 100% gluten free diet. Also I would google the Gluten Contamination Elimination Diet. 

[Peaceflower]

On 15 November 2006 at 0:52 AM, Nancym said:

It seems like I read something about gluten based brain damage and prospects of recovery not too long ago. I think it was one of those things you really want to catch sooner rather than later.

Hi, do you have those links you had ten years ago on this forum?!