Thanks for good wishes for London. - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Thanks for good wishes for London.

Jade profile image
Jade
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I had a really good visit yesterday oh and the sun shone, glorious unlike our Yorkshire weather.

I am no longer trying plaquenil as the prof knew it can aggrivate tinnitus.

We are discussing steroids on 3 consecutive days per month to help with my meno and Sjogrens symptoms. I should have asked how they worked but didn't get a chance.

And a surprise to me he said I should consider celiac disease and reduce my gluten intake. I don't want to stop it entirely as I know I will not be able to get back on it again. But I'm going to start with giving up bread. Right now I don't really know what else to change.

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Jade
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Coppernob profile image
Coppernob

Yep. Gluten free is actually pretty damn easy. Except when you go out to eat. But even then, pretty much all restaurants will cater for gluten free. Even Costa Coffee do gluten free brownies for goodness sake. Plenty of gluten free breads around. Also, if medically advised, you should be able to get gluten-free products on prescription - so you'd save money as well. Win-win-win-win...... And there ain't many of those around for us :-)

GinaD profile image
GinaD

I felt so much better on day 1 of my gluten free diet that I am never tempted even the slitest to go off the diet.

Jade profile image
Jade

The thing is I never for one minute considered that I ay have a gluten issue it was a complete surprise to me.

I have since read a lot about it but I don't have the symptoms and yes I do now know a person can have it and be symptom free.

I have no plans to ignore him but he did just say try to cut down. So I figured bread was a good place to start. As I said its not omitting I am very familiar with, but I have a bad feeling gluten foods will make up a sizeable part of my diet, as I love biscuits, cakes, pasta and pastry.

MaryF profile image
MaryFAdministrator

I have been gluten free since last August.. I find it not too bad really.. but to be gluten free to make a difference.. you have to go the whole hog..there are ways around everything.. and I have found most of them x MF

Hi there,

A perhaps silly question; but what do you win by eating a gluten free diet?, What is the symptom you have? Kerstin

I have noticed that I do not feel good on a fat diet. So I avoid cream and butter etc.

lupienat profile image
lupienat

Hi sorry to sound silly, but what is the link with gluten and autoimmune diseases? Is it only for thyroid? Have never heard or tried this I have lupus and ApS, any advice if there is a link for someone like me thanks xxx

Dear APsnotFab,

Thank you for your information. I do not eat so much gluten but I will now learn more if I should stop completely. Anyway I learnt from a doctor in Sweden with good reputation that "STONE AGE" (is that understandable in English?) food was to prefer when you have APS.

Thank you again Kerstin

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