Hi to All,
I am new to this forum and would appreciate any feedback.
I have had MS for approx. 25 years, though only diagnosed 4 years ago by a great Neruologist. Began Tysabri 36 months ago and it is working well. Though I developed a nasty GI bug at Christmas and havent been right since.
I have had blood test which confirmed positive for Celiac Sprue and anemia yesterday. Odd presentation with weight gain, increased blood pressure, mild right sided abd and shoulder blade pain plus a mild MS attack with old and new symptoms. I had IV steroids along with my Tysabri just yesterday.
Where do I go from here. Of course I will begin the Gluten Free diet - but do I see an allergist or a gastroenterologist. Should I insist on biopsy and tests for bacteria?
Any suggestions on how to proceed would be greatly appreciated.
I would also be curious if there are other people who have started Tysabri and then developed Celiac Spru.

Peace

Hi Angee and welcome to Neuro Talk. We have a very active MS forum here...http://neurotalk.psychcentral.com/forum17.html

I'm sure someone there can answer your questions. I'm glad you've joined us.

Hi Angeee...welcome to NeuroTalk!

We have a very large MS community here and many of them are on Tysabri with great results. I see Alffe has given you to link to the MS Forum. Here is also a link to the Tysabri thread which is an ongoing thread our members on Ty use to update each other on their progress and recent news about Ty: http://neurotalk.psychcentral.com/thread84538.html.

Great to have you join us here!

Interesting.

How were you diagnosed with celiac? By blood test? While most peiople who coem back with a positive anti-transglutaminase IgA test are labelled celiac, the current gold standard for a full celiac diagnosis, as opposed to a gluten-sensitive one, is villous atrophy with autoimmune infiltrate upon small intestinal biopsy. And finding this is more an art than a science--it would be easy to miss for those who are not well-versed in the particular pathology or in reading the slides.


While there have been some anecdotal reports that celiac autoimmune symptoms can be triggered by other insults--viral, bacterial, autoimmune attacks (such as happen with MS), many others would probably lean to the idea than you always had a gluten intolerance--you were just not diagnosed until recently. This is not unusual, as until recnetly many doctors thought this was a very rare condition--we now know it's much more common--and didn't think to test for it, despite the fact that symptoms can include neurological as well as gastric disruption. And that includes the type of central nervous system "plaquing" that might usually be thought to be MS--in fact, a common celiac symptom is cerebellar ataxia.

If you haven't yet, you should come on over to thre celiac/gluten sensitivity forum here and read, read, read--especially jccglutenfree's The Gluten File--probably the most comprehensive database on the condition yet developed:

http://neurotalk.psychcentral.com/forum13.html

http://jccglutenfree.googlepages.com/

Hi Angeee, and welcome to NeuroTalk!

As you can see, there are a lot of very nice and helpful people here.

I also have MS, and I mostly hang out at the MS forum and The Stumble Inn. Hope to see you there!

Hi, and Welcome.

So sorry you're having these problems.

Take your time to look at the threads. There's a lot of people who understand and have shared much info with NT. I hope you find some help here. There are lots of friendly people to get to know.

(Broken Wings)

welcome to neurotalk ... there are lots of friendly and supportive people here... i see you have been given a good starting point so jump right in and start posting ... should you need help, don't hesitate to ask someone ... we are here to help

Thanks for the warm welcome everybody. Wow, I will surely check out the suggested links. Interestingly, it was my Neruologist's PA who thought to order the labs to check for celiac. He said my RBC, HGB and HCT were low, My RDW, B LYM (CD19) and TTG, IGA were all high. HLA DQ2 and DQ8 were both positive. He said I was a most convincing celiac. I will meet with a Gastroenterologist's PA next Monday. I will still push for tests to confirm, though I am feeling better following "gluten-free" diet ( not to difficult because I have been an Atkins dieter for years). I will also monitor for improvement of MS following the gluten free plan. My next question would be "should I add wheat to my diet before any testing, so as to have a true picture?"
Thanks again for any feedback.
Peace, Angeee