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:
- Anti TtG count (marker for coeliakie) 58 (should be below 7
- vitamine D3 41, (should be at least 50, preferably up to 80)
- vitamine B12, magnesium, etc. (neurological relevant markers) all perfect! Thyroid likewise
- IgG subclasses (IgG2 and IgG4) too low
- decalcification of bones (osteopenie, the pre stage of osteoporosis)
- 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.
Question:
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!