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SoThisIs40

Could I Have Celiac Disease? Symptom List (Sounds Neurological)

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Hi everyone,

 

I just found this forum today. I'm a 40-year-old male ex-pat living in Japan with a 23-year long history of mysterious symptoms.

 

I've recently began wondering if a gluten sensitivity could be at the root of my problems, especially since my symptoms in the last 10 years have involved my stomach.

 

To keep this post as short as possible, I'll just list my symptoms, and the order that they've appeared:

 

- Aches in both legs that can last for days and keep me from sleeping, seemingly brought on by standing in place (I only mention this because I've had it since childhood).

-"Electric shock" sensations in either the wrists or "fat pad" area of the forearm, near constant pains and aches in muscles of the same area, poor coordination or trembling of fingers, some pins and needles and other odd sensations.

- Pain and stiffness in and around in the muscles of the neck. This includes the whole trapezius muscle and sometimes extends out to the connection points at my shoulders. Although rare, I sometimes experience "electric shocks" in the trapezius muscle as well.

- Near constant pain or discomfort in the pit of my stomach, bloating and other discomfort, possibly some acid reflux.

 

To give you an idea of the severity, I'll describe how they have affected my quality of life.

 

I cannot type at a computer keyboard, use a smart phone, or any other device requiring manual input (I can use a laptop computer with speak recognition to a certain extent – all from my bed). I cannot drive a car normally, since I cannot grip the steering wheel. Instead I drive with the side of one hand, and use my legs to sustain the position while adjusting course. I cannot write things down by hand anymore. I can't read a paperback book because I cannot use my hands to hold it open. I can't use a Kindle, because I cannot press the buttons.

 

I can no longer sit in a chair for more than a few minutes (I was a computer programmer for a short time, then an English teacher here in Japan, but no longer) due to symptoms in my neck. By propping my head up with some pillows and lying in bed, I can operate my computer with voice recognition for short periods.

 

I have trouble digesting almost every meal. About 10 years ago (before I came to Japan), I used to make sandwiches for lunch and eat cereal or granola with yogurt for breakfast. I can now no longer digest either. For a while I survived on protein shakes and then a moderate sized dinner to make it through the day. However, I can no longer digest the protein shakes either. Lately, I've just been cooking rice porridge and eating that throughout the day.

 

I've had major sleep disturbances for the past 10 years. I've been pretty much surviving on sleeping pills, but they've become very ineffective recently.

 

As you might guess, I've seen many doctors over the past 23 years and none of them have been helpful. Most would not take me seriously and would try to duck out of the room at the earliest possible convenience. The doctors in Japan have been more patient and I've had thorough testing done here: blood testing, EMGs, MRIs, even a test for thoracic outlet syndrome. All tests were either completely normal or unremarkable – except for one. An MRI of my brain revealed an accumulation of mineral deposits in the basal ganglia. Apparently, this is consistent with a neurological disorder like Parkinson's (except the patterning is apparently different), although I'm heard that some mineral deposition is normal with age.

 

My doctor's guess is that it's a type of dystonia and that my symptoms are being caused by my brain, which is not sending messages through the nerves correctly. This does not mean the nerves are damaged or pinched at any point, however. This is a nice theory; however, I've been on medications – Lyrica, Cymbalta, and Gabaron – for years and have noticed absolutely no improvement. In fact, many of my symptoms have worsened, as they always have with age.

 

Of course, I'm desperate. I feel completely helpless. But the one thing I have not really tried is controlling my diet. Since celiac disease involves destruction of the villi responsible for absorbing nutrients, especially B12 (a lot of my symptoms are consistent with B12 deficiency), I feel I should at least try to rule it out as a possibility.

 

Is there any possibility, that my symptoms could be caused by gluten sensitivity (or intolerance)? I know I've had thorough blood work, so they should have picked up any sort of nutritional deficiency (like B12). Is it possible?

 

I would be immensely grateful if anyone could point me in the right direction.

 

Carl

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Hello Carl, and welcome to the board. 

 

There is a form of celiac which manifests almost entirely neurologically, and it is possible that this could be your problem.  The brain lesions in the US are usually described as UBO's (unidentified bright objects).  It sounds like your symptoms are very severe that you have lost the use of your hands, cannot hold your head up properly, cannot sit for long, medications have not helped, symptoms are worsening yet all test results are negative.

 

Celiac is one of those diseases which you have to test for to find.  If you don't run the proper tests it can hide under the radar.  Just like B12, if no one thinks to test for it, it does not show up.  So your first task is to find someone in Japan who is familiar with celiac disease (and I believe this is easier said than done :P ) who will know how to test you for it.  The tests you need are:

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA
 

It doesn't matter if they don't do the first two -- they are older and outdated.  The others, especially the DGP, are newer and better.  Is there an American Hospital anywhere near you (if there is such a thing in Japan) where you might find better help with this?  The bad news is that often those with primarily neurological symptoms don't test positive on these tests, which are designed to detect autoantibodies formed to operate in the small intestine (although you did mention abdominal symptoms also).  Did you see a neurologist when you had the MRI of the brain?  Even if you did, he well may not have heard of celiac symptoms causing brain and neurological problems.  But if you do some googling you can perhaps educate him.

 

Similarly, you should have testing done of all your vitamin and mineral levels, including iron/ferritin.  If you have celiac you are undoubtedly low in many of these which could be contributing to your symptomatology.

 

I feel truly sorry for your plight and hope you are successful in finding some diagnostic help. :)  Hopefully others on the board will also offer some additional ideas.

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