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Messages - Emmerson Elliot

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1
Peer-Reviewed Medical Articles / Re: Coeliac linked to EDS
« on: November 17, 2017, 09:36:15 PM »
 Coeliac vaccine trials are well on the way in Melbourne Australia


Dr Jason Tye-Din is one of the principal researchers and it seems like the vaccine is having some success from early indications

Dr Jason Tye-Din
Walter and Eliza Hall Institute
Coeliac research
https://www.wehi.edu.au/people/jason-tye-din



2
Professor Claude Hamonet website -  Prof Hamonet is very knowledgeable about EDS


http://claude.hamonet.free.fr/eng/eds_hypermobility-beighton-poster-ghent.htm

3
 


Chronic fatigue syndrome is there a role for non-antidepressant pharmacotherapy?


 Link to full free article:

http://moscow.sci-hub.cc/339a7f0a8c1490f651a5c55a0c82c58e/houdenhove2010.pdf


EE

4

A classical Ehlers-Danlos  syndrome family with incomplete presentation diagnosed by molecular testing. 
Colombi et al 2017
European Journal of Medical Genetics

Link to abstract only
https://www.ncbi.nlm.nih.gov/m/pubmed/29024828/





5

A classical Ehlers-Danlos  syndrome family with incomplete presentation diagnosed by molecular testing. 

Colombi et al 2017
European Journal of Medical Genetics

Link to abstract only
https://www.ncbi.nlm.nih.gov/m/pubmed/29024828/





6
Thanks Cairncross.
Someone kindly sent the link to the full free article so I have posted it above - this one

Nationwide population-based cohort study of celiac disease and risk of Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome

Laszkowska et al. 2016
Digestive and liver disease
June 2016

Conclusions

Individuals with coeliac disease have a higher risk of EDS/JHS (Ehlers-Danlos Syndrome) than the general population.....

Link to full, free article

https://www.ncbi.nlm.nih.gov/m/pubmed/27321543/


AND it seems that people with coeliac are NOT being tested properly for EDS either - they are being dismissed by being told it is rare (it is not) or that you need stretchy skin or frequent dislocations to have EDS - not true either.)


EE

7
 Michael Jackson evidently had joint hypermobility

 As you can see when he is dancing

 I haven't looked into his other symptoms but here is a photo of his daughter Paris
 Smoking a cigarette by holding it between her toes
 This Evidently indicates extreme joint hypermobility

http://www.dailymail.co.uk/tvshowbiz/article-4913766/Paris-Jackson-smokes-cigarette-using-foot.html

http://www.dailymail.co.uk/tvshowbiz/article-4913766/Paris-Jackson-smokes-cigarette-using-foot.html



8
Living Legends / PARIS Jackson - Michael Jackson's daughter
« on: October 13, 2017, 11:48:36 PM »

 Paris Jackson smoking a cigarette with her feet
 By holding the cigarette between her toes

 Michael Jackson unquestionably had joint  Hypermobility

 
http://www.dailymail.co.uk/tvshowbiz/article-4913766/Paris-Jackson-smokes-cigarette-using-foot.html

9
Peer-Reviewed Medical Articles / Re: Coeliac linked to EDS
« on: October 13, 2017, 10:04:01 PM »


FOOD allergy common in joint disorder

 This is
Meeting coverage of a medical conference not a peer- reviewed medical article but still relevant

https://www.medpagetoday.com/meetingcoverage/aaaai/31471

10
  Underdiagnosis of celiac disease at 90% in Canada.

http://www.cbc.ca/beta/news/health/celiac-disease-1.4343691


 Press report of a research finding 2017

13
Ehlers- Danlos - Syndrome or Disease?


 (This looks important but I can't read it all yet)

link to full, free text


http://www.avensonline.org/fulltextarticles/jsynd-2380-6036-02-0005.html

15
Peer-Reviewed Medical Articles / Re: Coeliac linked to EDS
« on: October 06, 2017, 01:01:26 AM »
Coeliac testing clarification.

 This is a lay interpretation of the current situation regarding testing for coeliac disease. So it not be entirely accurate but the principles are correct.


 The initial blood test that most people have for coeliac disease is a test for the antibodies to gluten in your system.


 So if you have not been eating good amounts of gluten for several weeks before the test you will very likely NOT have these antibodies present in your system.

(A good amount is something like two slices of wheat bread every day for 4 to 6 weeks prior to the testing.)

 So if you have the blood test for coeliac disease and you had not been eating that amount of gluten it will almost certainly show as negative - because it is testing for the antibodies. 

 However even if you have been eating the correct amount of gluten the test can still often give FALSE Negatives and will not detect the antibodies even when they are present.   

 For this reason it's always ESSENTIAL to go on to further testing after the initial blood test. 

 For the last four or five years now the second test after the initial blood test is another blood test to see if you carry the gene for coeliac disease. 

 It was often assumed after that test that if you did not have the gene for coeliac disease then you most likely did not have celiac  - so you did not have any further testing.  (That proposition may now be under review however. )



 If you did, however, have the gene for coeliac disease than you would normally go on to have a gastroscopy and small bowel biopsy to check to see if your villi had been damaged by eating gluten. 

 Once again it is absolutely essential prior to the biopsy that you eat at least 2 g of gluten every day for 4 to 6 weeks prior to the biopsy. .... Otherwise the damage is not going to be present. So if you had a biopsy and did not have that long period of eating large amounts of gluten before hand then the results may be invalid.   

 There are currently trials underway to see if people can have non-coeliac gluten sensitivity.   

 And I believe there are also trials in progress to see if it's possible to develop another blood test for coeliac disease that does not require a biopsy.   At the moment that test is not yet available though. 

 (I believe this test is testing for a cytokine/Interleukin response as a reaction to ingestion of gluten - after a period of being gluten-free.)

 There is also a vaccine for coeliac disease under clinical trials at the moment!

 But the main point to make is that it seemed like the majority of people who have looked into coeliac disease have not been properly tested for it at this stage.   

 So a lot of people think that they do not have celiac when in fact they just have not had proper testing done yet.

It is essential to get proper testing done  - not just go off gluten - because if you continue to eat gluten if you have coeliac it can lead to cancer.

It is also now definitely possible to HAVE coeliac disease and not show any symptoms of it.



EE

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