I’d like to share my story with you. I’m new to the board and have already introduced myself. By telling my story chronically and in detail I’m hoping that some of you can relate or even provide with some answers where possible. Maybe for some of you it will be a feast of recognition although the word ‘feast’ seems slightly inappropriate. Poor a cup, get a snack and make yourself comfortable, you might be here a while… or: just scroll all the way down and find a summary of it all
August 2010 I’m suffering from a terrible toothache. While on holiday I phone my dentist and he tells me to get some antibiotics and Ibuprofen painkillers. So I did and it helped. February that year the toothache returns in worse form simultaneously accompanied by a severe throat infection. Again; antibiotics and maximum dosage of NSAID’s (Non Steroid Anti Inflammatory Drugs) for the pain. In surgery at the dentist the tooth got sorted, it was a nasty complex inflammation of the root canal. Had to stay on the maximum dosage of NSAID’s for a couple of days just to make it through the day. (is this relavant? Ow yes!!)
At this point I notice my stool being different; sticky, fatty, smelly and of different consistence. From then on I start having periods of diarrhoea (D), usually a couple of days in a row. Didn’t think much of it, ‘probably viral’
I also notice that my sight diminishes especially at night. My eyes itch frequently and look a bit red/bloodshed. The skin on my forehead feels dry and crackly.
July 2011 the periods of D follow at smaller interval and seem to last longer. Still, we all deserve a holiday so off I went to Italy. Sun, decent coffee, fresh fish, fine food and mega loads of lovely pasta! If only… from day 5 on the D becomes permanent and with a frequency of some 3 to 5 times day/nightly. Also I notice a slight brain fog, slight lack of coordination, severe night sweats and have to urinate very frequently. We (or rather my lovely wife) decide to shorten our holiday to visit the family doctor back home. She issues a blood test for several things and a stool test for bacteria. (I love the English term stool test. In Holland we use a more specific, more graphic name…) All the tests came back negative so she sends me to have a colonoscopy at the hospital. There they said all looks very well on first sight but I had to wait for the biopsies that may give some answers. (hence the term microscopic in colitis)
That September I have my first appointment with the GI to go over the biopsy results. And there it is; “you have Collagenous Colitis, it’s an IBD, possibly auto-immune. And within the whole spectrum of IBD it’s the one I would pick should I be forced to” ...eumm..Pardon?! A GI with a sense of humour, well that’s at least something positive. He prescribes me 9mg entocort daily. He also tells me that the CC is very likely caused by the prolonged high intake of NSAID’s and that although the pharmaceutical industry might not agree he’s pretty convinced about it. I tell him about my other issues and he takes this very serious and orders some blood tests.
On my next appointment we go over the blood tests and it turns out I have low vitamin D and some 58 antibodies typical of celiac decease (anti-TtG) An endoscopy will need to confirm the celiac but he is already certain of the outcome. (namely a confirmation). He also issues a DEXA scan to measure my bone density as vitamin D levels are low. At this point I come to appreciate this man very much! He obviously does a proper job along with the sense of humour. He takes time, listens and takes my story serious. And I know some of you will now rip out your hair from envy reading that good and nice doctors do exits and live in Holland but wait, my fair share of the ignoramus ones is still to come. Just read on…
I tell him that my previous complaints are worsening and are being added by; numbness and tingling sensation in hands and legs, pain in back, arms and shoulders and a mild sporadic skin rash. He orders yet another set of blood tests along with the DEXA scan and endoscopy.
While waiting on this, our medical system is probably the same as yours so patience is a necessary virtue, I decide to see my house doctor again. My gait is getting strange, I have a tremor and spontaneous involuntary muscle movements and I have balance issues. She does some neurological tests and decides to sent me to a neurologist. Who in addition runs the same tests again is not at all impressed by the vitamin D count and decides I have chronic hyperventilation syndrome. So I tell him that I tend to disagree and that there are some auto-immune things going on that may call for a somewhat more ‘dig a little deeper’ approche. He does a “hyperventilation provocation test” which basically comes down to me taking a couple of deep breaths while he is on the phone having an important conversation with a nurse… The ‘test’ does not reveal anything and I manage to convince him to do an mri of the head and spine and a blood test for Lyme. Just in case.
Again while waiting on that one, I go and see the GI about the results of all the other tests. The DEXA showed diminished bone density (osteopenia) The blood tests showed no severe abnormalities except that the anti-TtG count was now 28 instead of 58 and the endoscopy showed no signs of celiac nor did the biopsy’s. it did however show a severe candida infection in the oesophagus. (don’t know the common English word for this. It’s the swallow tube from mouth to stomach)
So the GI and I gazed upon each other mute for a while. Then he broke the silence by saying: “interesting case”
His theory was that the Entocort medication had somehow cured the celiac symptoms, not cured the decease obviously but just the damage to the gut. He asked me about the neurologist and I told him what happened. He was genuinely upset about this because he (the GI) had tested for chronic hyperventilation syndrome (CHS) in the blood already because my symptoms did point that way. The test was negative he said so CHS is out of the question! “as for that neurologist; he should watch his monitor, it’s all there; bloodwork, pathology, all of it!” said my GI.
Later that week the neurologist found no abnormalities in the mri, part from a little rupture in the disk between L5 and S1. Not to be called hernia he added! And no cause for my complaints. I persuaded him to do an EMG to look at my tingling and pain issues. He did a specific carpal tunnel EMG and found a Carpal tunnel syndrome in both hands. Again I disagreed because my whole arm, little finger and ribs were also involved and that’s not typical for carpal tunnel.
So: not to make a very long story even longer (I think the American expression is ‘cut to the chase’) I’ll try to sum it up and end with where I’m standing now.
September 2012. Got myself a second opinion from another neurologist who did a scan of the entire spine and head. That revealed 3 herniated disks in the thoracic area as well as the one in the lower back, possibly with spinal core compression in the thoracic one’s. A neurosurgeon looked at the mri images but saw no compression of spinal core and just minor compression of the nerve in the lower back. And he found no cause in this for my complaints about tingling sensations and pains other than in my left leg. Then I mentioned that my left leg often falls out while walking. Specifically my left knee which bends like it wants to kneel down and leaves me struggling to keep my balance. He said that to him it sounded like a brain issue. As if the nerves piloting my left leg are not doing what they are supposed to do.
Then, between yet another period of waiting for test results, I notice that my speech is altering (as did my wife) I tend to take pauses between words and sometimes stammer and search for words which I know I aught to have present but just cant find at that moment. Being a teacher these things sort of stick out if you know what I mean.
October 2012, Back at the GI to talk about my reactions to the tapering of my daily Entocort dosage and some more lab results. Vitamin D is back to normal due to monthly intake of calcium/D3 supplements. But anti Ttg have risen to 128. So a definite case of celiac the GI recons. He starts me on a GF diet. The tapering of entocort to 1 pill every other day did not work well. D came back at unpredictable intervals. He said it’s probably the celiac and not the CC but advices me to stay on a 1 pill maintenance dose for a while.
Meanwhile the neurological stuff keeps worrying me and gets progressively worse. Then I accidentally find an article about “gluten induced ataxia and neuropathy” and my mouth falls open from astonishment!! “why has no one ever thought about this?!” In this article they also mention a test that proofs that Entocort does not cure damage to the gut in CD!!
OK; MC is very rare in Holland, rarer than in the US! Its typically found in woman over 50 so my case is even rarer. There is a link between CC and CD. CD with no intestinal proof is rare to non existent. CD that goes for the brain instead of the intestines is probably the rarest of them all. So yeah, I get it, I’m a bit of a rare case!! But doctors should be happy with that shouldn’t they? It breaks the everyday routine of solid hard cases of well-known and statically proven standard diseases I’d reckon!
I’ve send a copy of the article to both GI and Neuro and I’m seeing them both this month to hear what they have to say about it.
If you are still there, thanks for reading my story! And sorry that it has become such a ridiculously long text… I’ll try to be brief in future messages.
Summery
- diagnosed with CC September 2011 and put on Entocort 9mg daily for 3 months – 6mg for 3 months – 3mg for 3 months – tapering to 3mg every other day for a month (didn’t work) – back on 3mg daily for 4 months – tapering for 1 month – free of Entocort as of dec 1st 2012
- low vitamin D3 (value 41)
- osteopenia (a pre stage of osteoporosis)
- herniated disks; TH4 – TH5 – TH6 and between L5 and S1. No spinal or nerve compression of significance
- repeating candida infections in throat
- anti bodies for celiac disease (anti TtG) ranging from value’s 24 to 128 (should be lower than 8)
- no villous atrophy in de small intestines
- possible Celiac yet unconfirmed by biopsy
- IGg subclass 2 deficient
- bad response to (mainly thick skinned) nightshade veggies like aubergine and certain peppers
- no other intolerances known
- the obvious MC related bowel problems
- fatigue
- joint aches and stiffness
- nerve pain/ loss of sense/needles and pins in feet, legs, ribs, arms, hands, fingers, lips, tongue, face
- brain fog
- diminished sight/blurry vision
- dry skin
- periods of frequent urinating
- episodes of wobbly and insecure gait (drunkmans gait)
- balance problems
- involuntary muscle movements
- trembling
- over sensitive to sudden loud noises
- episodes of slurry speech
- speaking with ‘double tongue’ when tired
- periodic night sweats (mainly during intake of entocort)
- raised lymph nodes in the throat/chin for over a year now
I have resolved most of my neurological issues by taking a prescription vitamin mix called Metanx (a combination of the active forms of vitamins B-12, B-9, and B-6), and I continue to take it (I've been taking it for 3 years now).
