Off to see the professor

[GlutenLadYorkshire]

Tomorrow is going to be a big day for me I’m off to see a world leading expert in gluten related disorders, Professor Marios Hadjivassiliou has anybody seen this expert, I don’t know what to expect I’m anxious of the outcome I may have gluten ataxia then again I might not. We shall see.

[Lynilou]

Haven’t had a consultation with him but he visits my hospital and have heard only good reports. You’re lucky to get a consultation with him, he has an excellent reputation so try not to worry.

[GlutenLadYorkshire in reply to Lynilou]

Thank you he seems to know what he is on about

[liver-bird]

Do let us know how you get on ☺

[GlutenLadYorkshire in reply to liver-bird]

He thinks that celiac has caused some form of psychosis it has mildly affected my balance I had some blood test and he is recommending me go for a mri spectroscopy

[liver-bird in reply to GlutenLadYorkshire]

It sounds like he is taking good care of you. My own balance deteriorated possibly due to coeliac. Hope he helps you ☺

[GlutenLadYorkshire in reply to liver-bird]

I do to, he suppose to be one of the best people in the world with gluten related illnesses he has done loads of research in gluten I didn’t realise by having a cheeky sandwich would cause you so much trouble his name is Marios Hadjivassiliou and most of his research is on line it’s very interesting

[jill55 in reply to GlutenLadYorkshire]

Sorry I hadn't seen your previous post. Very envious you have seen Prof Marios.

[GlutenLadYorkshire in reply to jill55]

I was very apprehensive before I saw him but I did get the impression he was genuinely interested he certainly knows his stuff have to go back in November for another appointment and have another scan think it’s called a spectroscopy mri so hopefully they find out what has been causing me issues

[biotechmom in reply to GlutenLadYorkshire]

Were you ever able to get any answers from Dr H? I live in the States and am treated by the Celiac Center at Columbia Presbyterian in NYC. In 2002 I was diagnosed with gluten ataxia. My anti-transglutaminase antibodies were really high due to cheating on my GF diet of 7 years. I was admitted and they did plasmapheresis on me for several days and then gave me IVIG for a few days. I have not cheated since November, 2002. I still get contaminated food sometimes and at a business meeting two years ago was given something mislabeled and ended up in bed for 2 days, so sick. I have a weird constellation of symptoms after gluten exposure now....I am very sensitive. Spacy, balance off, brain foggy, LOTS of phlegm and full ears (I really feel there is a relationship between autoimmune inner ear disease and CD), tinging feet, etc. I don't mess around with cheating AT ALL anymore. When you feel you are losing neuro capabilities at 43, it's a strong incentive to straighten up and comply with the diet. I am never tempted to cheat and I love to eat. Wishing you the best.