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Dear All,

I'm new to the list, my name is Giovanna, I am a 35 year old Celiac with
MS.  I read in the archives all of Dr. Murray's postings ( till 98
included) on the connection between the two diseases, and I am looking
for more information and some advise. This request is to the specialists
of course, but also to those of you who are knowledgeable on the link
between CD and MS, or other neurological disorders. I have read Don
Wiss' pages, found much there, but I still have some questions. (I
accessed them and you through Dave Q's site MS Natural Recovery).

I know this topic is very specific, MS is (luckily) fairly rare, but I
do hope my story can be of interest to the community. Here it is.

I was diagnosed with MS at 30, after months of gastrointestinal symptoms
I never had before (bloating, diarrhoea), MS rather benign, my only
symptom being sensory, pain, for 4 years. GI symptoms were given no
importance by my physician, interpreted as irritable bowel syndrome,
which I never had even with a stressful life, and subsided with the
intravenous cortisone I took for MS. (But of course, with cortisone the
villi re-grow, as I later read in the archives).

GI symptoms were fairly mild in the following years, at least till I
took interferon beta for MS, which I believe, helped also the intestine,
yet returned stronger when I stopped taking that drug. In this second
phase, though my MS health was good, I walked again for hours with
little, tolerable pain, diarrhoea and bloating became persistent,
chronic. As an undiagnosed celiac, I was eating brown bread, that
everybody considered healthy!!!

After 8 months of good MS symptomatology, and horrible gastrointestinal
one, I had the most severe attack of MS I had experienced since onset,
10 years ago. (With mild R/R MS I was so well most of the time that it
took long to diagnose).

I know now that MS is most probably only the effect, CD the primary
illneess, real cause. It's 7 months I am gluten-free, dairy free, and
feel stronger, better.

Strong GI symptoms went away immediately as I started the diet, but I
still have floating stools, steathorrea, sure sign of malabsorption.
(And for what I remember, always had them all my life!!!) How long will
it take for the gut to heal? I am not a biopsy proven celiac, but I have
no doubts.

I tried bread again recently, just to gluten challenge and had rashes,
head-ache. Second attempt brought diarrhoea back in a few days, stronger
than ever, I got frightened. Gluten allergy didn't show up in my ELISA
food allergy test, but it was 3 months after going gluten-free!  Still
cheese, milk, eggs came strongly positive.

I have difficulties with my neurologist, who doesn't take this data
into account, didn't prescribe Vit.B12 blood test (also cause of nerve
demyelination), won't consider food allergies related to autoimmune
diseases, regardless of all studies that prove it. I will be taking
tests with another physician, normal doc, still I have no idea where in
Europe I can find a neurologist willing to work with me (and a
gastroenterologist!) on these issues. Any suggestions?.

I look very energetic and healthy, but as you can imagine, with these 2
diseases I am weak. 7 months and still having steathorrea worry me. What
other tests for malabsorption should I do besides Vit.B12? Though tall,
my bones are small, and I do have weak dental enamel, dentine, according
to my dentist. Maybe a mineralogram?

Thank you very much for your help. If Vit.B12 levels come back low with
all the supplements I take, my MS might have a better course.

Strangely, my MRI at diagnosis, showed that none of my MS lesions were
active, also the blood-brain barrier was intact (lumbar puncture), and
this in the midst of my first severe attack, the one  that lead to
diagnosis in early 95, and which healed only many months later! Seems a
weird form of MS!

As a Celiac, I guess I won't be biopsy proven, the effects of gluten on
GI and MS symptoms being too severe.

If you are reading me DR. Murray, please answer, my mail to your former
server has been returned last January, and I am not sure of your present
email address. I really need your advise, further information on the
studies done on the link between CD and MS.  Same thing Don. To all of
you friendly listmates, thanks for any help you can give me.

Bye now, keep up the great work!

Giovanna (Pandozy)