MelissaClinPsyD

2 hours ago, Fly1962 said:

Hi I have a diagnosis of RCD1 this was a joint diagnosis from the Royal Surrey in Guildford and by Professor Sanders In Sheffield. If I’m not too late I would  Iove to take part in your research . 

Hi Fly1962! 
You are definitely not too late to take part, please can you send me an email at:

m.figueiredo@surrey.ac.uk 

so I can get in touch with you asap to provide more information

1 hour ago, cristiana said:

@MelissaClinPsyD See above.🙂

Thanks! :)

2 hours ago, knitty kitty said:

It's on this site.  Click in my name.  Look for the pull down menu that says "Activities" and chose "blog".  Oh, there's the link!  

 

You can send personal messages through this site, too, if you like.

Thank you!

7 hours ago, knitty kitty said:

@MelissaClinPsyD,

I hope you investigate whether your participants take nutritional supplements.  The group of eight B vitamins, Vitamin D and magnesium have a big impact on mental health, especially depression.  I know correcting nutritional deficiencies were most important in my physical and mental health recovery!  

There's more information and my mental health struggles in my blog.  

Keep us posted on your progress!

Thank you so much for your response kitty that is helpful to hold in mind. I am also doing a review on lived experiences of coeliac disease so your blog would be incredibly valuable for me to review, please can I have the link to it?

12 hours ago, DanteZaffar said:

Does this require proof of having refractory celiac? I’ve been gluten free for a couple months but still feel miserable but I’m not sure if its refractory celiac disease.

A confirmed diagnosis of refractory coeliac disease is required to participate in the study unfortunately. Apologies you are feeling miserable even though you have remained gluten-free, I hope you are able to receive further understanding as to why from the relevant medical professional.

I am hoping to provide copies of the content used in this study following its completion end of this year so will make a note to post on here when the study is complete, a copy of the resources used from the group. 

7 hours ago, RMJ said:

Is there a minimum time since diagnosis of refractory celiac disease? 

I really hope I’m not eligible for your study, but looking for it is one reason my gastroenterologist suggested an endoscopy. I’m having it later this month, due to still having GI symptoms on a strict gluten free diet.

There is no minimum time since diagnosis of refractory coeliac disease to be eligible for this research. The research is a feasibility study for people with refractory coeliac disease since there is currently no psychologically based intervention tailored for refractory coeliac. The aim of this research is to provide therapeutic support that is not routinely offered at gastroenterology clinics thus encourages people to maintain wellbeing in consideration of having symptoms despite a gluten free diet.

Hope you gain further clarity and some relief following your endoscopy!

2 minutes ago, Scott Adams said:

Is this only for those in the UK, or can anyone diagnosed with celiac disease participate?

Anyone diagnosed with Refractory Coeliac Disease can participate (they do not need to be in the UK but would need to be able to speak and understand English as the intervention is facilitated in English language)

Hi everyone,

I hope this is the right place to post this, I am new to the forum though hopeful my research is relevant to someone reading this.

I am a Trainee Clinical Psychologist currently conducting research on Coeliac Disease at the University of Surrey and my research has been approved by an NHS committee allowing me to advertise online. My research is a doctoral thesis involving a 3-session online cognitive behavioral therapy group intervention, developed by myself and a current patient with Refractory Coeliac Disease, designed to reduce anxiety in those diagnosed with Refractory Coeliac type 1 and 2. This intervention will include evidence based support to reduce anxiety for a form of coeliac which is currently under-researched in regard to wellbeing. Coeliac UK have sponsored this research thus each participant will receive an £8 shop voucher per session they attend (each session will be held on Microsoft Teams at least one week apart with questionnaires on anxiety, quality of life and symptoms taken before the first session of the group, after the second and a month after the third), and findings will be shared with them, Coeliac UK and published.

If you are currently diagnosed with Refractory Coeliac Disease and are interested in taking part in this online group or have further questions please feel free to respond to this post, or if you feel more comfortable sending me a private message here, I am happy to send you a link to my study to sign up.