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Lukas

Celiac & neurological symptoms

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Hello all!

First I want to introduce myself. I am 31 years old, male, european (so english is not my native tongue). I was recently diagnosed with Celiac (MARSH 3b criteria) via biopsy. My blood work shows high levels of gliadin and tissue transglutaminase antibodies, extremely low levels of iron (especially ferritin) and slightly high levels of GOT and TSH. Other micronutrients levelswere not tested. Besides that Ive also developed a gastritis. I live gluten-free for about 2 weeks now and lactose-free for several years (diagnosed lactose intolerant 2006). I also don't eat processed foods and try to avoid sugar in general.

My symptoms are very complex. For example I experience seldom GIT problems after eating gluten (yet I always had symptoms similar to IBS in general). What I experience on a daily basis are the following symptoms (since May 2014) more or less ALL THE TIME:

-) unsteady gait and the feel of walking on cotton wool. A feeling like I would always sink a little bit with every step I take. I don't think it can be considered as ataxia, maybe a mild form? Nevertheless it makes my life a living hell.

-) parasthesia especially in my face. even as I write these words I feel a tingling in my whole face. Sometimes it even evolves to a burning sensation which can also spread to the rest of my body. Feels like a sun burn (but not visible changes in skin color) and sometimes I it is so painful I can't even move.

-) pain in my arms. feels like electro-shocks coming down my shoulderns in my arms, sometimes in my hands and fingers

Interestingly I had these symptoms also 2007, but they disappeared after some months and were in general much less severe back then. I also had several EMGs and MRI scans: 2008 brain, 2014 brain and cervical spine and 2016 again cervical spine. Results for MS, tumors, lyme disease etc were negativ -thank god. Yet my symptoms persisted. I was sent to physical therapy, to osteopaths, psychologists and several neurologists and no one could help me. One prescribed me pregabalin against ma neuropathic pain. Unfortunately it doesn't seem to work at all. I will try to get iron infusions and vitamin b12 shots. Furthermore I want to test for hashimoto and other associated autoimmun diseases but I am worried that my life will never get back to normal. These symptoms have such a horrible impact on my life - I can't even work full time and my social life is practically dead. :(

Enough whining:

What I wonder is IF my symptoms are really caused by celiac disease why did they disappear from 2008 - 2014? I am afraid that my symptoms are caused by something else and now I additionally have to deal with celiac as well.  Does anyone else here have similar problems like me? I am happy to answer any questions and look forward to your responses :)

 

Thanks for reading :)

 

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Hi Lukas

Firstly Welcome to the Forum.

I know others will join in but I'd just like to say if you read all my post history you would see that I have had very similar symptoms to you. I was diagnosed in 2013.

Some of my symptoms I'm fairly sure are celiac related.  Sometimes the answer is rather more complicated.  Here are the ones that mirror yours:

I had tingling, pins and needles and numb arms on waking.  Definitely got worse prior to my diagnosis, but I had some tests about a year later and it was found that I had ulnar compression.

About three months after diagnosis I felt at times I was walking on cotton wool and on board a rolling ship deck.  Turns out after extensive tests it was due to an old whiplash injury that I made worse after picking up my young son (did this after my diagnosis but completely forgot about it. It wasn't until my neck began to hurt many months later that I put two and two together that I realised it wasn't ataxia after all!) 

I still have paresthesia.  Before diagnosis I was pretty ill and the stress of it made my face twitch.  Those areas affected have since started to tingle and sometimes hurt (like a bee sting). I believe I have some sort of damage to my trigeminal nerve down to gluten exposure that stress made worse.

I am afraid I have become a real Dr Googler meantime. But when the medical profession can't give immediate answers I think this can happen.  What I have concluded is that all of these symptoms could have something to do with gluten or possibly nothing and can be caused by upper neck problems. This is the complicated world I live in!

On the positive side, you are still very early on in the healing process and neuro symptoms are the ones that often take a while to get better.  If you stay with us on the forum for a while and start to see improvements do let us know as it would be a great encouragement to many to know.  There are plenty of good outcomes when we leave gluten behind.

Regarding why you got better for a while? I hope someone else might be able to answer, but I did read a case of where this happened to a professional guitar player who went to Spain for a while and as there is much less gluten in the diet there they found the tingling and numbness in their fingers went away. It came back when they returned to the UK.  Was your diet any different during that time?

Anyway, good to 'meet' you.

 

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Welcome to the forum!  

I can tell you from my personal experience and research is that celiac disease symptoms can wax and wane.  The symptoms can vary from person to person.  They can change through the years (I was anemic and now if glutened, I get intestinal issues).  celiac disease has been described by one celiac disease expert, Dr. A. Fasano as a chameleon.  

Neurological symptoms, based on my research, seem to take the longest to heal.  Most forum members report improvement well after one year of being gluten free.  So, my advice is to be patient.  Read our Newbie 101 advice thread pinned at the top of the Coping section of the forum.  

Now, for the pep talk.  You can get better!  Anxiety, irritability and depression are so common with celiac disease and can resolve.  Just stick to the diet, eat as cleanly as possible (Whole Foods) and give yourself lots of time to heal.

?

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Tahnk you both very much for the nice welcoming and the kind words! the certainly give me strength.

@cristiana

You are right about the upper neck problems. I don't have any serious pain in this region but in the end I was in fact diagnosed with "cervical syndrome" back in 2014. This is unfortunately, like fibromyalgia, a diagnosis which basically means "we don't find something, deal with it"

Nevertheless I went several months to physical therapy, tried acupunture for half a year, massages, chriropacters, and osteropaths. Needless to say that this cost me a small fortune. Nothing helped, sometimes it even got worse when someone "manipulated my spine" which made me think (up to now when celiac was diagnosed) that my problems are in fact caused by my spine/muscles. This didn't comfort me at all because obviously nobody could help me anyway. Besides that: even it is caused by neck/spine problems the question remains why it disappeared for so many years.

I should also mention that I am a very active person (jogging, weight training etc.) which also made me think at the beginning that I maybe caused all this by lifting the wrong way. So I paused for a long time and I noticed that it didn't have any effect at all which is why I started again. Of course fatigue and tiredness (maybe due to my deficienes) make it really hard to be active (especially while trying to fake being healthy at work and constantly have to explain myself to my frinds/family that I suffer a lot while being officially "healthy").

 

1 hour ago, cristiana said:

About three months after diagnosis I felt at times I was walking on cotton wool and on board a rolling ship deck.  Turns out after extensive tests it was due to an old whiplash injury that I made worse after picking up my young son (did this after my diagnosis but completely forgot about it. It wasn't until my neck began to hurt many months later that I put two and two together that I realised it wasn't ataxia after all!) 

What kind of tests were made and how did you get rid of those symptoms if you don't mind me asking?

 

1 hour ago, cristiana said:

On the positive side, you are still very early on in the healing process and neuro symptoms are the ones that often take a while to get better.  If you stay with us on the forum for a while and start to see improvements do let us know as it would be a great encouragement to many to know.  There are plenty of good outcomes when we leave gluten behind.

I will definitly stay with you on the forum and I will use this thread to continue posting my development and hopefully improvements. Maybe it will be helpful for others. :)

 

17 minutes ago, cyclinglady said:

Now, for the pep talk.  You can get better!  Anxiety, irritability and depression are so common with celiac disease and can resolve.  Just stick to the diet, eat as cleanly as possible (Whole Foods) and give yourself lots of time to heal.

?

Thank you! I really hope so. I saw that you also suffer from Hashimoto Diabetes, Osteoporosis, Thalassemia. This must be really hard to cope with. :/

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Hi again Lukas

Regarding the tests for the cotton wool under foot/walking on a rolling deck problem, I eventually went to see an Ear Nose Throat specialist.

It was odd how it came about because for a while kept going back to the family doctor (what we call a GP here in the UK) and I had all sorts of in surgery tests like the hall pike maneoevure and a doctor asking me to watch a pen as he moved it around to see if my eyes were training on it properly - that sort of stuff. Everything seemed normal in this regard but I was told I probably had had something minor wrong with my ear so I needed to retrain my balance and was given a sheet of exercises to follow.

Anyway, finally I developped tinitis in my right ear which normally would have been a bit of a downer but it was at that point my doctor thought I should see the ENT.  The ENT did all his tests, found nothing wrong, so thought I should have an MRI.

The MRI showed no neuroma (something that is incredibly rare but something they check for in case that is causing tinnitus) but my cervical spine was in a real state. Even to my amateur eye I could see it was badly aligned.  My specialist said I undoubtedly had cervical vertigo.  Our spine has an important part to play in balance and apparently if the neck is badly aligned it can cause all sorts of balance issues, giving off the wrong message to the brain or something. (You had better look up the condition on the internet as I think I'm probably explaining it badly)  Anyway, the ENT then passed me onto one of his colleagues to deal with - a spinal surgeon!!!!  But the extraordinary thing was that in the time I was waiting to see this next specialist the dizziness/cotton wool feeling really improved.  I think it was partly to do with the fact that I had really got into the habit of over analysing my walking and once I knew what was behind it all I stopped obsessing about it so much and it helped.  I'm not saying it is all in your mind - it definitely isn't - but anxiety turns the volume up on symptoms, I am so sure of that.

When I saw the spinal surgeon he wasn't at all interested in taking things further (thank goodness) but it just goes to show that dodgy necks can cause all sorts of problems.

Just an aside but if your neck is causing you problems you may wish to look at using a hand towel, rolled up, to put under your neck when you sleep instead of a pillow.  A physio told me this is a great way to sleep.

It is important how you fold it, mind you.

Interestingly, I find it has helped with my facial paresthesia.  There is a lot of contradictory information on the internet about what I would describe as a creepy crawly feeling I get in my face but some people think it could be due to neck problems.  

 

 

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Sorry Lukas, meant to say , the ENT's tests were odd - things like walking blindfolded to see if I drifted to the right or left, he stuck a probe up my nose to test my Eustachian Tube or something, there was a hearing test etc.  I'm not sure if any of that is relevant but I thought I'd let you know in case!

Also, I had separate tests with a neurologist type for my ulnar compression.  Nerve conduction tests - quite interesting really.  That problem is far less noticeable these days.  

I'd definitely get treatment for the B12 and Iron deficiencies as they can make thinsg much worse.  Make sure you get some follow up tests for your levels as with Iron you can have too much of a good thing, and then it can be dangerous.  Also check your Vit D levels are good. Another thing is magnesium supplementation is wonderful for tingles and twitches.  Having a warm bath with a generous handful of magnesium salts in it (Epsom Salts) is very soothing for painful joints and limbs.

I also think slow release vitamin C and zinc has helped me a lot.

Maybe try not to consume much caffeine at this time, see if that helps.

 

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I ended up with extreme brain fog, like mind would get stuck and broken record driving me crazy, and forgot how to do simple things I knew I should know but just could not think of them and would blank, also had numbness in my hands in feet, lack of ability to feel temperatures in them, and at one point I had a feeling of fire like needles running in waves over my arms, back, face, and legs. The latter went away with magnesium supplements as it was caused by a nerve issue and magnesium deficiency and I take like 2-4 times the recommended dose to this day on supplements for it depending on how active I am how my body is reacting. Been gluten-free for several years now and the brain fog is gone. Think they called my issues Gluten Ataxia, and peripheral nephropathy

I find myself taking supplements for iron (exact same thing with very low ferratain like you)  and B-vitamins, that help with the stress. I found Pea protein and plant based blends to be very high in iron and magnesium also. I still to this day have poor feeling in my hands and feet, and I have from what I can tell brain damage. I can no longer do a few things I used to be able to do with ease like calculate well with numbers, and do computer programing. Just none of it makes any sense at all and seems to start moving when I look at now days on a page.

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Hi Lukas,

I suppose you have read about gluten ataxia?  Gluten ataxia affects the brain and can cause lots of symptoms.  Gluten ataxia is associated with celiac disease.

Lack of vitamins and minerals can damage many parts and functions of our bodes.  Celiac disease impairs the ability to absorb nutrients (vitamins, minerals, fats) that our bodies need to heal and function.  That isn't necessarily permanent, but it helps to start healing asap.  Nerves can be slow to heal.

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I have had many neurological symptoms as well to the point of having a work up for MS.  I will be seeing a neurologist for a complete evaluation.  There is an association with celiac and autonomic neuropathy as well as other conditions that have been mentioned in other posts.  In addition to other supplements mentioned, what has helped me the most is collagen powder, Omega 3 and Vitamin D3.  Read the labels carefully as many supplements might be gluten free but have soy or other inflammatory additives.  Adequate sleep is a huge part of healing as well.  I wish you well!!

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