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CFS Clinics, Gluten, Thyroid

Ash-S profile image
10 Replies

Hello, my GP is willing to refer me to a CFS clinic in east london. Apparently its a multidisciplinary approach so I imagine it involves psychoptherapy, nutritionalists, gp's etc. The thing is i have to have a coeliac test before i can be reffered. This means i have to go back onto a gluten diet which will really screw me up! For 6 weeks up to the coeliac blood test!

Can anyone advise if these CFS clinics are any good and should i suffer the 6 weeks of hell to try and get into one!

Thanks in advance. Ash 

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Ash-S
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10 Replies
Kitten-kat23 profile image
Kitten-kat23

Sorry I haven't a answer. I didn't need to test before I was seen. Good luck with the hospital, I was deemed as unsuitable for this treatment. 

Natural_Natty profile image
Natural_Natty

Have you tried posting this on the gluten guerrillas page? Someone might be able to help there...

Good luck 

I would also contact the ME Helplines to get further advice on this and on CFS Clinics in your area.  I have attended a CFS Clinic and find it really difficult to understand why the requirement for entry to this particular Clinic is by having a coeliac test?  I understand your concerns as this could be so detrimental to your health and for such a long period of time?  I think a more informed decision needs to be made in order to make the right choice on options available to you, that you feel more comfortable with.....  The CFS Clinic I attended gave handouts, and their take on ME/CFS, and there was a Psychologist.  Unfortunately, no Nutritionist which is very important (they decided to fund a Physiotherapist instead).

Yes, Gluten expertise information as suggested below will definitely be very helpful too..... Hope this is of some help......

Alice

Ash-S profile image
Ash-S in reply to

Thanks Alice, I think the clinic my GP is referring me to is ST Leanords, in Hackney, which is part of Barts. The clinic's entry requirements are that i have done various blood tests including Coeliac, and also that i have been assessed by a psycologist to see if im depressed or not. I guess they are trying to make sure i have tried ruled out 'obvious'/primary causes before they see me. 

in reply toAsh-S

Hi, I did a search about the clinic - hackneyicare.org.uk linking to elft.nhs.uk on treatments etc. for more information, they make high claims on recovery.

Alice

Bevvy profile image
Bevvy

Where is the clinic? I attended a clinic in East London and they were very helpful.

Ash-S profile image
Ash-S in reply toBevvy

I think its st leanards hostpital in Hackney, do you know anything about it ?

Bevvy profile image
Bevvy in reply toAsh-S

Oh sorry that isn't a clinic I know. As others have suggested I think you should have tests to rule things out and then attend clinic. It could be very helpful.

Antony_M profile image
Antony_M

I think it's worth doing the coeliac test in any event. I have problems with wheat and gluten and a family history of coeliac disease. In my case, I was negative for coeliac disease and it's an intolerance causing very bad IBS though along the way, I tested positive for intolerance to lactose. I think it's worth getting it all checked out. 

I go to a CFS clinic in Leeds and see a therapist. They don't have a resident physio at the moment. It's not a cure but it helps me manage my day to day living and know if I'm doing the right things. My partner gets tired of it and my condition distresses my family so I'd advise getting all the help you can.

Ash-S profile image
Ash-S in reply toAntony_M

thanks anthony

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