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Sticky Blood-Hughes Syndrome Support
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Do You Want To Listen To The World's Leaders In Celiac disease And Non-Celiac Gluten Sensitivity Speaking About It For Free?

Dr Tom O'Brian has posted over on the GlutenFreeGuerrillas HU site about a Gluten Summit he has arranged where a number of respected leaders of Celiac Disease and Gluten Intolerance have been interviewed and the talks are being shown over the next week. As many of us have CD or are GI this well may be of interest.

All interviews are free and will be aired online November 11-17th.

Prof. Michael Marsh of Wolfson College, Oxford (the Godfather of Celiac Diagnosis)

Prof. Umberto Volta of the Celiac Society of Italy (the Godfather of NCGS-non-celiac gluten sensitivity)

Dr. Alessio Fasano of MassGeneral Hospital, Harvard (the Godfather of Gluten Sensitivity)

Prof. Yehuda Shoenfeld of Tel Aviv University (the Godfather of Predictive Autoimmunity)

Dr. Loren Cordain (the Godfather of Paleolithic Nutrition)

Cynthia Kupper (the Godmother of Gluten Support Groups)

... and many more.

Here is the link to register.


5 Replies

YES: I filled it in via LDN Research.. so I shall be there, gnawing on a couple of sticks! Mary F x


Is celiac disease linked with aps then ?


It certainly can be. Autoimmune Thyroid Disease often runs as a trio along with Sjogrens and APS and Celiac is closely associated with Thyroid Disease. Prof Hughes advocates that you should be on a Gluten Free diet.

I listened to two of the talks today, both from completely different specialty Doctors and the message is the same. Gluten is an irritant that our bodies can't handle and if we have a susceptibility which could aggravate autoimmune conditions we are best not to have it.

One of the speakers today was talking about how Gluten affects cardiovascular conditions and the new literature that was coming out about that. It affects your cholesterol. Its really a fascinating subject.


This is all like a big jigsaw puzzle thats begining to fit together, but trying to get the drs to understand all this is another matter :( i am only just at the begining of my diagnosis with thrombophilia and having more tests to see weather it is hereditary form or caused by a virus and aps I have had 3 weak positive tests and a PE as well as other things, I also suffer from IBS and get terrible stomach pains from certain foods and have done for years but its all put down to IBS and fibromyalgia which i am begining to doubt now that i even have, i also have an under active thyroid which i am supposed to take thyroxine for but i dont and i have a high cholesterol level of 8.7 and am now on statins, i have mild heart failure and also TIA's, i am on asprin and have to go back to heamatologist in dec for results of the thrombophilia test hopefully it will get sorted i hope so, thank you for your insight into this :) its much appreciated :)


You sound like a carbon copy of me! Told I had Fibro - wrong! Told I had IBS - Wrong! Had a PE - no one tested why and told it was just one of those things! Continued to have increasing neuro symptoms and two minor Strokes unbeknown to me. My Father has Haemolytic Anaemia but no one bothered taking my history let alone looked at family history. I saw numerous Doctors including a Movement Disorder Consultant who told me I had no problems with my balance! A Neurologist said my symptoms were likely down to Fibro or a medication I was taking and then contradicted himself saying the medication couldn't cause the symptoms - then failed to look at the CT scan which would have shown him the two minor strokes! Two months later I had my bigger Stroke. ^ months later due to MY research I was diagnosed with APS and Sjogrens. I also have Hashimotos and NCGS all confirmed now by three Consultants.

My advice to you:

STOP eating Gluten.

Take Vit D at the highest dose you can

Take your Thyroid meds

Take a Statin

Please make sure you take the most appropriate anticoagulation and if necessary see a expert specialist in APS. A list of specialists can be found under "Pinned Posts" at the top of the page on the right. Do not allow what happened to me to happen to you. Unfortunately you have to be your own advocate and take charge of your own care.

I wish you all the luck in the world. If you need the content of the above talk just message me with your email address. :-)


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