Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 07-09-2012, 02:50 PM #11
Jellifer Jellifer is offline
Junior Member
 
Join Date: Jul 2012
Location: Glasgow
Posts: 6
10 yr Member
Jellifer Jellifer is offline
Junior Member
 
Join Date: Jul 2012
Location: Glasgow
Posts: 6
10 yr Member
Default

Quote:
Originally Posted by teresakoch View Post
Even if you tested negative for Celiac Disease, you may be gluten-sensitive.

The "eczema" that you have might actually be Dermatitis Herpetiformis[/URL] - the "dermatological" manifestation of Celiac Disease. Unfortunately, the "test" for that may or may not come back positive (it's a skin test, but the person doing it has to know what they are doing).

If you have DH, you have CD[/URL] (it is a 100% correlation). Many people with DH will test negative on the CD blood test (I did). For most people with DH, a "positive" diagnosis is made when they go on a GF diet and notice that their symptoms start to clear up. I had terrible skin rashes that wouldn't clear up with any treatment - within a month of going GF, they were significantly reduced. It was a happy surprise.... (I can always tell when I have been accidentally "glutened" - I start to itch like crazy!)

I had allergies my entire life - when I eliminated gluten from my diet, I noticed a few weeks later that I wasn't having them anymore (believe me, I wasn't even thinking about it - one day a light went off....). I have also found that the number of colds that I get has significantly reduced in both frequency and severity - I used to be guaranteed to get laryngitis every November/December (it got to be a running joke). Now? Not so much.

It's possible that the CFS you were diagnosed with in your 20's was actually an early manifestation of MG. I've found that "CFS" tends to be the "You're tired, but we don't know why and we've run out of things to test" diagnosis....
Thank you I'm not really prone to colds or things like that. The CFS was mostly ignored by my GP at the time, it was a different GP 3years later who mentioned that I'd been diagnosed with CFS!

I might ask for this skin test just to rule out coeliacs, but my GP is stingy with tests.
Jellifer is offline   Reply With QuoteReply With Quote

advertisement
Old 07-10-2012, 01:09 AM #12
rach73 rach73 is offline
Member
 
Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
15 yr Member
rach73 rach73 is offline
Member
 
Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
15 yr Member
Default

Hiya,

Im glad you had the tilt table test. Fun arent they..... not!

Im sorry I couldnt help you more with the double vision problem. Resting isnt an option if you are working. I no longer work so its an option I can use.

I didnt realise that you were in the UK too!

I hope you get this figured out it must be really frustrating.

Rach x
__________________
Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.

My blog address is
.

.


Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
And the wisdom to hideThe bodies of Doctors I shot
When they said,"You're perfectly healthy,
It's All In Your Head."
rach73 is offline   Reply With QuoteReply With Quote
Old 07-10-2012, 10:35 AM #13
teresakoch's Avatar
teresakoch teresakoch is offline
Member
 
Join Date: May 2010
Location: Fort Worth, Texas
Posts: 199
10 yr Member
teresakoch teresakoch is offline
Member
teresakoch's Avatar
 
Join Date: May 2010
Location: Fort Worth, Texas
Posts: 199
10 yr Member
Default

I might ask for this skin test just to rule out coeliacs, but my GP is stingy with tests.

Have you ever been tested for allergies? A wheat or barley allergy will cause the same problems, but will rarely progress to Celiac Disease.

If you don't think your GP will do a test (I don't know how expensive the skin test is, and like I said, it's not always conclusive), you can always just try a gluten-free diet for a month and see if you find any relief from your eczema.

Bear in mind, though, that you have to be COMPLETELY gluten-free - there is no such thing as "gluten lite".

For me, once I was off of gluten I felt SOOOO much better - and every time that I accidentally ate it, I started feeling just awful. Most people who have gluten sensitivity who go on a GF diet find it VERY easy to stick with the diet for that very reason. My sister-in-law and nephew (only related through marriage - we don't share any genes) were diagnosed with CD around the same time - completely unbeknownst to me - and they have said the same thing. It's almost like a "miracle".

If you decide to go GF, commit to doing it for at least a month - if you're not gluten-sensitive, you won't feel a difference (but it can take a couple of weeks to get it out of your system).

I always tell people that a GF "diet" is much cheaper than all of the doctors' visits and medicines I was paying for before. I still have MG, but there are a host of other conditions that I am less likely to develop as a result of an untreated gluten issue.

FWIW, there is a MUCH higher incidence of CD in Ireland - they don't know why. ALL of my ancestors were from England, Ireland, or Scotland, so it's not surprising that I have this....
teresakoch is offline   Reply With QuoteReply With Quote
Old 07-11-2012, 06:06 PM #14
Jellifer Jellifer is offline
Junior Member
 
Join Date: Jul 2012
Location: Glasgow
Posts: 6
10 yr Member
Jellifer Jellifer is offline
Junior Member
 
Join Date: Jul 2012
Location: Glasgow
Posts: 6
10 yr Member
Default

Quote:
Originally Posted by teresakoch View Post
I might ask for this skin test just to rule out coeliacs, but my GP is stingy with tests.

Have you ever been tested for allergies? A wheat or barley allergy will cause the same problems, but will rarely progress to Celiac Disease.

If you don't think your GP will do a test (I don't know how expensive the skin test is, and like I said, it's not always conclusive), you can always just try a gluten-free diet for a month and see if you find any relief from your eczema.

Bear in mind, though, that you have to be COMPLETELY gluten-free - there is no such thing as "gluten lite".

For me, once I was off of gluten I felt SOOOO much better - and every time that I accidentally ate it, I started feeling just awful. Most people who have gluten sensitivity who go on a GF diet find it VERY easy to stick with the diet for that very reason. My sister-in-law and nephew (only related through marriage - we don't share any genes) were diagnosed with CD around the same time - completely unbeknownst to me - and they have said the same thing. It's almost like a "miracle".

If you decide to go GF, commit to doing it for at least a month - if you're not gluten-sensitive, you won't feel a difference (but it can take a couple of weeks to get it out of your system).

I always tell people that a GF "diet" is much cheaper than all of the doctors' visits and medicines I was paying for before. I still have MG, but there are a host of other conditions that I am less likely to develop as a result of an untreated gluten issue.

FWIW, there is a MUCH higher incidence of CD in Ireland - they don't know why. ALL of my ancestors were from England, Ireland, or Scotland, so it's not surprising that I have this....
Yeah I got tested for skin allergies and the only one I have is boron! I even tested negative for nickel.

I also got bloods done for allergies to work out what made me go into anaphylaxis and I'm allergic to nuts (hazelnuts are worst), apples and pears.
Jellifer is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
I'm a student. How do I deal with this? SarahF900 Traumatic Brain Injury and Post Concussion Syndrome 12 06-07-2012 07:15 PM
Student dchappy New Member Introductions 3 07-15-2011 11:26 PM
Sicca Syndrome/Sjogrens Syndrome darlindeb25 Autoimmune Diseases 4 04-01-2010 06:53 AM


All times are GMT -5. The time now is 07:59 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.