Gluten-Related Disorders: Time to Move from Gut to Brain

Prof. Marios Hadjivassiliou, MD

  • The role of gluten in the development of ataxia
  • Understanding the language of gluten sensitivity
  • How gluten sensitivity manifests outside of the intestines
  • Gluten and irritable bowel syndrome

You spoke and we listened. We've added a spot for comments for those of you that aren't on Facebook.





    I really think that Skype could have been used for all these interviews. Skype has great quality for audio especially, not to mention it would be great to see all these people. This way audio quality is often poor and it is sometimes hard to understand since for some speakers English is not mother tongue……..

    Judith Fine-Sarchielli

    The sound was not clear and with his accent, very hard to follow.

      Kim Saucier

      My daughter said you have to have a biopsy of the small intestines to really find out. I tested with a blood test and it came back inconclusive. She said welcome to my world( meaning celiac) which took a long time to find out what it was.


    Can you give me simple explanation of the difference between Celiac Disease and Gluten sensitive? My daughter has a violent reaction to gluten but just don’t know how to determine if she has CD or NCGS. It seem that there is not one definitive test that can determine this.

      Davina Spafford Stuart

      honestly, treatment wise, it doesn’t matter. Some of the “definition” depends on which doctors you ask, but generally, for a solid celiac dx, they want to see the genetic markers _and_ the damage to the villi in your gut. NCGS is generally used when you don’t have both (or sometimes either) of those but still have obvious reactions to gluten.. and no, at present, there is no one clear test for either (outside of the genetic blood marker test, which just tells you if you have the genes or not..) or such is my understanding. It is likely going to be another generation before the medical profession as a whole agrees on proper definitions and guidelines for diagnosis of all of these issues. either way, the only treatment is to remove gluten from the diet 100% but meanwhile, pester your doctors til they go and get themselves educated on the subject!

    Jessica Paulos

    I don’t have time to listen to these today. Is there anyway I can download them to listen to this weekend?


      Open a new browser window for each, start playing then pause – and remember to leave your PC switched on until you can watch!

        Jessica Paulos

        Thanks Ann. I just realized that I can purchase them for $67. I am going to do that because I am working so much this week I have missed them all so far.

          Chris Ellington

          I wanted to listen to this person, but he has such a heavy accent, I could only understand a few words, if any, in each sentence. I wish that someone who speaks English, without an accent, would have read the report instead. (Gluten Related Disorders, ….) Without understanding, there can be no help.


      Wonderful information, thank you for organising this.. Now I know that I am IBS Gluten Insensitive.


    I am enjoying the summit and learning so much! I too did not complete day 3 and had trouble being the videos to load and play. the one I began watching on day 4, had also stopped working.

    A Louise cox

    Because I work through the day and live on the east coast, I listen to part of the speakers at night and the rest in the morning. Please leave up the previous speakers later into the morning.


    It was a bit difficult to understand the good professor. I don’t know if it was a bad connection, but his words sounded muffled. I’m glad I could read his notes, however.


    could someone tell me at what point he discusses “the 4 ways gluten consumption and sensitivity can manifest on your skin”. i’ve listened to most of the talk but either i missed it or its not in there. thank you.


    This recording was very muffled. I could not understand it very well due to poor quality of the recording. If I order the download, will the sound be better?


    does gluten sensitivity cause i.c.?


      30 years ago (before expensive testing became available) my doctor suggested (1) going on the gluten free diet for a month to see how you feel. Then (2) break the diet for a week and see how you feel. Then (3) go back on the gluten free diet and see what pattern emerges. I did that, but if you’d prefer not to suffer and feel better after being gluten free, you don’t really need to try step 2, eating gluten foods again. Not having all this information, I have been eating a small amount of gluten over the years and now realize I should have been ZERO GLUTEN FOR LIFE! I now know those “little indulgences” have caused so much misery! Eating gluten is destroying your life one bite at a time!


    Very good summit – very exciting speachers. BUT: Where do I go as a European to have my blood tested for non coeliac gluten sensitivity ?? Noone have mentioned this little but very important detail…

      Loren Ziem

      Unfortunately, the only NGCS test I can find is the Cyrex one here, and it hasn’t gained wide acceptance at all. This problem was briefly mentioned in previous presentations, but IIRC, it hasn’t been resolved, and NCGS officially remains a diagnosis of exclusion.


    My sincerest congratulations to the famous professor dr Marios Hadjivassiliou, send from me, as a emeritus prof dr Phytopathology of the Gent-University in Belgium !



    Pat Almert

    I would like to see the time markers so that if I have to stop to answer the phone, etc. I could make a note of it and then come back to that spot. It seemed to be available on day 1 but not now.

      mike ernst

      Just click/tap on the talk to pause, or if you are not in full screen, you should see a progress bar with a time marker on the right. I use it on the talks every day


    The ‘learn more’ image keeps overlapping the video. I am at work and am trying to keep my window small.


    IF YOU SEND ME YOUR ADDRESS, I can send you my lecture-text entitled ” TE GRIEF OF GLUTEN “…also the address of doctor Tom O’Brian is interesting for sending him my text. Thank you !


    Dr. Hadjivassiliou- thank you so much for the presentation and your amazing efforts in the field. I really appreciated the connection of the gut with the brain. This is an interesting time ( US FDA proposing to ban trans fat…banning NOT real food or fake food products might not be a bad idea!). Thanks again! AJ


    it was a bit hard to understand him..but i still got alot out of it..some things still hard to understand but thanks so much for the interviews..


    Although I would like to see the speakers I think the printed outline of each section of the discussion is vital. I have taken extensive notes and it is good to see the spelling of the technical terms. Dr. Hadjivassiliou says that the nerve damage in the brain involved in ataxia can only be stabilized, no regeneration of cells is possible. Is this also true in the case of damaged nerves in peripheral neuropathy?


    being hearing impaired & wear hearing aids – I agree visual audio would have benefits to understand one with accents … I had difficult time with the muffled sounds also.

    Carol Mielke

    The lady was right, sometimes he was difficult to hear but a very knowledgeable Dr. Thank you for your talk and sharing with us. Sincerely, Carol.P.S. This has opened up another door to possible other diagnosis.

    Carol Mielke

    I do not do Facebook but would like to hear more about hair loss as I have Dermatitis Herpetiformis. Sincerely, Carol.


    Thank you for a wonderful presentation. Gluten free since neuro-Lyme/Babesiosis/Candidiasis 6 yrs. ago, I always love to learn more to help more! Realized probably all my dad’s diseases -HBP,cardiac,cancer, diabetes were NCGS. This can let candida,Lyme need to test!


    There’s so much wonderful information in this interview, but I will have to listen to it several times in order to get past the poor audio quality. As a result, since I want to hear all of the interviews again, I’m afraid that if I spend the money to buy the package, will the audio quality be just as bad on the CD’s that come in the package?

    Margie Leslie

    I thank you very much for this interview. It really explained why I get a headache now when I eat bread. I’m sensitive to MSG and soy because of the glutamate in both. (I can’t even eat meat that has been feed soy, some grass fed is OK.) It’s all related! I use to add gluten flour to my home made bread so I could put a lot of healthy seeds and such in it and still have it hold together for sandwiches for my family. It’s no wonder I can’t eat it now. What must my brain look like now!

    Susan Brooks

    great lecture. just a thought on format. I agree the timing of these is very tricky. My guess is most of us work and because there is no sense ahead of time how long each of these are, it is hard to fit this all into a day. The material is great – but I agree- give us more time. I know there is a way to buy these – however it feels like unless we are able to clear our schedule every one of these days, it is completely unrealistic to partake under the stringent time frame given. While so appreciate that you put this together, please make it available to us in a more realistic fashion – and if you say it’s free- give us the ability to listen to them- for free. It almost seems like it is set up in such a way so we have to purchase the set. Was this what you intended?


    This summit is so informative thank you ! Many people ask for extended time but i feel it is perfectly fair to sell it. The free access 24 hr is already an immensely generous gift.


    Experienced same issue commenters on Facebook did, Day 3 interviews disappeared early.


    Have not heard anything regarding gluten and skin sensitivity; where can I find the information?


    very difficult to understand due to audio problems, not enough time to listen to everything within 24hrs. This is excellent educational material that if possible should be free for everyone as it applies to most of the population who should be zero gluten now that we have this scientific info. Thx

    Pam M

    Two presentations per day would be more manageable. Three or four is tough going, especially when the sound quality is so poor in many places. I have lost count of the number of times I have had to listen again to try and understand what was actually said. Maybe a transcript could also be made available for 24 hours as well? It would certainly be helpful to those with hearing difficulties.

    Susann Van Ruff-Howden

    Just wanted to thank you so much for your dedication towards this subject. Finally people can know what has happened to our food supply and the impact it has had on our health without any of us knowing about it for years.


    Dr. O’Bryan, I am surprised that Dr. David Fine and an explanation of his test method is not part of your presentation. I am wondering why that is. Thank you.

    Jaime Ward

    Hello Dr. O’Bryan, Thank you for such an incredibly informational & inspiring Summit! I have a question regarding reintroducing cross-reactive foods. How often do you find people are able to successfully reintroduce foods (other than gluten) with positive antibodies on Cyrex Array 4 after keeping them out of their diet for 3-6 months? Or is it more common that these cross-reactive foods will also have to be avoided forever just like gluten? Thank you!

    Darrel Joy

    The quality of the sound from the professor’s connection was so poor that I could hardly understand a word. It was like listening thru a vacuum cleaner hose and wasn’t worth my time to listen to it.

    russ gaul

    Audio is terrible, combined with the foreign accent makes comprehension almost impossible. I would buy the series if the presentation was in the form of a webinar or even skype. Please try to correct what is an otherwise fantastic series.

    K. Greene

    I enjoyed this presentation tremendously. As a non-celiac gluten sensitive person, I pulled gluten from my diet about 18 mos ago due mostly to brain fog, fatigue, and tingling. Last April I found myself in a situation (where I was “afraid” to speak up about my dietary needs) and had to eat gluten. My thought was, it will be OK. WRONG. I immediately reacted with a feeling of being drunk– 5 martinis drunk. It was horrible. A month later I began suffering “benign” fasiculations and muscle tremors. Lots of them. They were relentless for months. My neurologist did not make the connection (and looked at me like I was crazy for suggesting such a link existed). Finally, this week (NOVEMBER), my tremors have subsided (almost) to zero. Listening to this conversation brought me relief and validated in my innate “knowing.” Thank you Dr. Hadjivassiliou!


    The problem today was not mainly the accent; it was poor quality audio due to inadequate equipment and technical production.


    Dr. Mario has hit a nail on the head. When I use to eat wheat, I was constantly dropping things and my ex-boyfriend use to call me a “klutz”. I was diagnosed with irritable bowel syndrome too but since I have been on a gluten free diet for 10 years now, these symptoms have gone but I can tell if I eat anything with gluten in it or traces of it, I start to drop things more frequently. When I use to eat wheat, 3 days later my right eye would become so swollen almost shut and it would last a couple of days. I never was tested for any of this but a friend of mine who worked at a health food store, told me I had a problem with wheat and suggested to try a gluten free diet. Thank you Dr. O’Bryan for this excellent speaker. I know I wasn’t a “klutz” and why I couldn’t hold on to anything when I would eat wheat. I know now “why”.


    My daughter was found to have celiac disease almost 2 years ago at the age of 44. She can not swallow liquids at all , and has great difficult swallowing food, this has not improved and drs can not explain the cause. Could this be from neurological damage from the celiac?


      I also used to have difficulty swallowing – traced back to additional food allergies – eggs, potato, dairy, walnuts were the main ones. But also look if lymphatic system is clearing toxins.


      Please also look into the possibility of tongue-tie. The two are related, as the nutrient deficiencies created by gluten sensitivities may cause mid-line birth defects including tongue and lip tie, which may interfere with swallowing. A tongue-tie revision followed up by physical therapy or orofacial myology with someone who focuses on treating TMJ issues could do wonders for swallowing ability.


    Is the nerve damage in peripheral neuropathy caused by gluten sensitivity or celiac disease reversible once gluten is eliminated from the diet?

      Loren Ziem

      Hadjivassiliou et al. 2006 [;jsessionid=AEEA93860DE398E9266449B24634F186.f04t03] found evidence of improvement from axonal neuropathy on a GF diet. I hope this helps.


      From my own experience the PN has improved a great deal but not all gone yet – but nerves heal slowly I think.


        Thank you for that info. I have been gluten-free for about 1 1/2 years. The PN SEEMS to have improved slightly, but I was afraid it was wishful thinking. In Dr. H.’s discussion he mentioned that the brain cells could not regenerate, but did not say whether or not nerve cells could. Glad to know there is hope for the PN to improve.


    Very clear vocals here, quickly adjusted to accent, Prof Hadjivassilios’s ability to relay factal information from evidence based research is astounding. Love the mention of Aussie research since I’m a Queenslander in Australia. The whole Summit is wonderful, the practical implications for anyone listening are freely albe to be applied to improve all lives. Thank you. Have forwarded to many


    I am finding some of the speakers very hard to understand. I have ordered the 67/- offer and hope the interviews will be clearer. Some interviews are clear but others are not. Thank you for putting this Summit together, I am passing on the message to as many people as possible.

    P. Silberman

    Having both IBS and Lactose Intolerance and after insisting on being checked for celiac disease I was surprised to find out I have one of the genes but don’t have celiac disease. For the lactose thing I’ve tried cutting out dairy which and now trying to cut out gluten. My doctor didn’t suggests it just saying that it’s hard to go gluten free and gave me a sheet for a low fodmap diet. I am sensitive to different foods, unfortunately many of the healthy ones, but it just makes sense to cut out gluten, dairy and see what happens. Also some of the fodmap diet to omit are ones I am sensitive to. I’m tired of cooking but still do since I know what’s in the food, at least I hope so. I also don’t want my family to eat genetically modified food. I read, if it was reported correctly, that the FDA was going to approve genetically modified salmon. I certainly hope that isn’t true.


    I noticed a session on Paleo diet discussion and now I don’t see it. Has it been removed?

    Madelyn Griffith-Haynie, CMC, MCC, SCAC

    I haven’t been following your format BECAUSE I upgraded about half way through Marsh’s talk on Day-1, and have been “glutting” on all of the great info. I am already way ahead of you. I am impressed with the quality of the content from *each* speaker. It’s REALLY great to have the pdf transcripts to be able to read some of the terms – and, for me, nothing has been “too technical.” Just what I wanted – especially the way you summarize content periodically. The upgrade cost is extremely reasonable IMHO – especially for the quality of the info (and the fact that this is cutting edge and not really available otherwise). THANK YOU to each and every participant – and to all of the sponsors. (btw, I sent them thank you emails, and received one back from Cyrex Labs – a thank you for my thank you – amazing!) xx, mgh


    Thank you loving everything about this summit!


    Hate to be unkind but I can not understand the speaker for day 3, it sounds like he is talking in a tin can. This is frustrating! Please get better recordings.


    Hello Dr. O’Brien, Thank you for putting together this summit. Due to timing reasons, I missed out on Dr. Natasha Campbell-McBride’s interview. I have a question regarding the GAPS diet that I hope you can relay to her or help me with any insight you may have. I started my boyfriend on the GAPS diet since finding out he has IBS. He’s been on the full diet for about 6 months now. In the initial period of die-off, he experienced a panic attack and also had hallucinations both auditory and visual. I thought it was part of the die-off process, but I felt very bothered because die-off symptoms listed on the web did not state hallucinations as being part of it. After the die-off period he felt a lot better, has not had diarrhea and bloating and his overall health has seemingly approved with GAPS. However the hallucinations popped up again a few months later and it’s quite alarming because when they occur his state of mind is very frantic and bordering on delusional. I am worried that maybe during the die-off period or the drastic change in diet triggered something, but I don’t know how to get him checked. If at a general hospital they will probably just prescribe him western medication which we try to stay away from since it doesn’t solve the root of the problem. Do you think you can advise me on how to proceed with his condition, or what type of health check-up is most applicable? It’s very worrisome and I don’t know where to turn to. We’re in Asia right now and don’t have any GAPS practitioners here to advise us. Thank you so much!


    This is amazing! I have had migraines and some form of ataxia all my life. I do have celiac. When I was diagnosed and started eating gluten free, my migraines and ataxia went away. I had no idea of the reason why. Now I do, and I am so glad that I have been diagnosed as celiac. If I hadn’t been, I would still be suffering with headaches and balance problems. Thank you for this incredible interview. Thank you, Dr. O’Bryan and Dr. Hadjivassiliou!!

    Loren Ziem

    Although I had the classic symptoms of CD and dermatitis herpetiformis, my prominent symptom before going gluten free was transient paralysis. For hours after eating triticeae gluten I would have extreme difficulty moving — I couldn’t even crawl and often had problems breathing. This resolved completely within two weeks of a GF diet, and I rarely mention it for fear of disbelief. What mechanisms could cause this symptom? Has anyone heard of this before?


    I only got to watch on Day 1. Any following days have been a black screen where the video should be. I re-registered, cleared my cache, I used 3 different browsers, I opened the links from the emails….nothing. Any other ideas?


    As one of Prof Hadjivassiliou’s patients, and part of the long term studies he is doing at Sheffield, I was was one of the first in the world to be diagnosed with gluten ataxia. Thanks to him and his team, and their ability to ‘think outside the box’ and really listen to patients and make those connections between the genetic hand of cards we all have, the triggers like gluten and a leaky coeliac gut, I am here today to testify to the fantastic work being done, collaboratively, world wide as he and all the other Big Players share their insights here. This has been one of the most remarkable, powerful and empowering examples of medical Big Thinking I have ever been privileged to be part of. My case is a complex one: his tenacity, forensic thinking and compassion have been the hallmarks of truly wonderful neurological care. Thank you Professor Hadjivassiliou, thank you.


    Thank you for giving us this fantastic free opportunity to hear some of the world’s leading experts in gluten related disorders. Great lecture Prof Marios – thanks so much for giving your time to this summit. Great information as we expected! Im one of your grateful patients and we love your accent!!


    This has helped clear up many questions. My daughter had Acute Cerebellar Ataxia when she was 4 back in 1995. The MD’s had no idea why it happened. She regained her motor skills but had difficulty academically after that event. When she was in her teen she was ill with stomach pain, leg pain and weakness, etc. the MD’s did not know what was wrong with her. Our Chiropractor said she had a wheat allergy. She improved greatly on a GF diet. This conference has answered many questions for us. Thank you.


    So sad that I had to turn it off, I cannot understand him.


    On the email it said he was going to talk about “4 ways gluten consumption and sensitivity can manifest on your skin”. Did I miss it? I didn’t understand all the terminology but I’m sure he didn’t talk about skin issues? Thank you.


    Seeing as this is a talk relating to neurology, I was wondering if there is any evidence between gluten sensitivities and epilepsy? 3 of 4 children of close family friends have epilepsy, as well as their father, and I wonder if gluten could be related? I know that epilepsy can have broader causes, but if there is any chance it would be helpful!

    margaret ball

    THANK YOU, THANK YOU DR. O’BRYAN for organizing this summit – it was brilliant !!! BUT …I am saddened for all these folks who have unanswered questions and still seeking. There is an answer for them right at their finger tips. Divining (dowsing) can supply answers to their questions…no matter what the question is. I suggest they get in touch with the various dowsing societies ( American Society of Dowers, the Canadian Society of Dowsers, the one in the UK, France, Australia etc.). After years of problems related to my thyroid glands since the age of 16 ( – I am now 85 yrs. young )..learning to dowse changed my life.. IT WAS PIVOTAL ! With the ability to dowse – which most people have – one can get answers to any questions about anything. For a number of years in the 1980’s I was one of the presenters at the annual ASD convention in Danville VT. Since that time, I have presented classes and taught 100’s of people how to dowse. I am still teaching – ( a class 2 weeks ago as a matter of fact ). Developing this skill can change a person, life. Many times, dowsing can take a person into areas of search that are not obvious and identify linking factors for the problem or issue that seems insurmountable. Developing the ability to dowse enabled me to find my way out of the dense forest of an underactive thyroid which coincidentally was tied up with a parathyroid problem and Calcium metabolism which caused unexplained panic attacks for years ! I have been free of these and off thyroid medication for 50 years now. So passionately I say…”please folks, learn how to dowse”. You will truly be a master of your own life needs and wants in every area of your life. Excellent book on the subject ..’The Divining Hand’ b y Christopher Bird’ ISBN #0-525-48038-2. Margaret Ball – BSc – a retired home ec. teacher…now a full time dowsing master . for these wonderful comments to a su


    Yes, I did not have time to watch all that I would have liked. I did see about 4 -5 speakers… but more time would be great, or post them to Youtube and publish the links. That would be very helpful for people who couldn’t spend all the time during this summit to tune it. Very great information from the speakers I did see… and I thought I knew a lot about gluten sensitivity already. Lots of new stuff in there. Thanks!


    So much about these gadgets revolves around style and being an early-adopter. The ship owner could see that the captain had paid the on going rate and the merchants were all given the same opportunities to offer their services. Its weight is 122 grams and casing measures 111 x 51 x 13. Everything posted was actually very reasonable. However, think about this, suppose you wrote a catchier post title? I mean, I don’t wish to tell you how to run your blog, but what if you added a title that makes people desire more? I mean Prof. Marios Hadjivassiliou, MD: The Gluten Summit is a little vanilla. You could look at Yahoo’s front page and watch how they create news headlines to grab viewers to open the links. You might add a related video or a pic or two to grab readers excited about what you’ve got to say. In my opinion, it would make your posts a little bit more interesting.


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