The Reality of Non-Celiac Gluten Sensitivity and its Many Manifestations

Umberto Volta, MD

  • Exploring the onset of non-celiac gluten sensitivity
  • Understanding food allergy testing
  • How individuals without wheat allergies react to wheat
  • The link between gluten and brain fog
  • The prevalence of non-celiac gluten sensitivity
  • Understanding immune response to offensive foods
  • Extraintestinal symptoms of food sensitivities
  • Why commercial gluten-free foods may be problematic

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65 Comments

    Ann Sousa

    Another Excellent lecture. Dr Umberto Volta was very informative. Thank you for sharing.

    Armstrong

    So glad I listened to Dr. Volta. I will now consider that perhaps my condition is NCGS. I seem to have the symptoms that fit that diagnosis rather than celiac.

    Ruth Fine

    /Thank yo0u so much for speaking. I am a new Non-celiac Gluten sensitive person, and your information has helped me immeasurably.

    Celine M. Ernst

    This information is crucial when trying to explain to the pt. why their tests were negative, but they feel better off gluten. Thanks so…much. Celine M. Ernst RN, PHN

      The Gluten Summit Team

      Celine, did you also catch Dr. Rodney Ford’s day 2 presentation? He touches on testing, as well. We think you’d find it interesting!

    Marcia Swinehart

    Incredible amount of information on Non Celiac Gluten Sensitivity. He perfectly described me. It sounds much more prevalent than celiac disease with so many systemic symptoms that currently in this country physicians are trying to medicate away.

    Beth

    That was an amazing interview with information that I definitely needed to hear. I have always thought I was NCGS and have resisted the testing for Celiac Disease, because I do not want to reintroduce gluten for the test. Everything Dr Umberto Volta said confirms that I am NCGS. Thank you!

      Donna

      Beth, I feel the same way. I have been on GF diet for 10 years or longer now but before I went on that, my friend who worked at a health food store suggested that I might have a problem with wheat and told me to go on a GF diet. I did and never was tested for Celiac because I didn’t want to stop eating that way. Every time I would eat wheat, I would bleed going to the bathroom and 3 days later my right eye would become almost swollen shut. Very uncomfortable so I have avoided this like the plague. When my mother died in 2003, I had to fly home and staying at her place to deal with things and all she did was have food that had wheat in it. I ate it and started really bleeding again and got very sick until I finally was able to go shopping and get healthy gluten free foods. My sister finally realized that I wasn’t faking this and came to believe me that I couldn’t eat wheat or gluten. I have avoided it like the plague from that time on and now I am so sensitive to some gluten free foods that are manufactured in with wheat like some of Amy’s GF foods.

    Beth Kaiser

    I’m so delighted to be able to listen to all these medical professionals who really have answered a lot of issues that I need to modify!!! I was sick my whole life!!! I finally was diagnosed almost six years ago!!! I was 50! I was told my whole life that I needed a good psychiatrist!!! I have so much damage that has just gotten so bad that I was sure I was going to die from the fallout from the invasion in all areas of my bodies ability to function!!! It’s been a long, tedious, depressing journey! I hope that someone might contact me to help me to better manage my failing, autoimmune plagued body!!! Now that I am 55, I know that I will never be able to turn my issues around… Way too much permanent damage!!! Also, there are no physicians here that can cope with all my diseases, and, I’m forever falling prey to the collateral damage!!! Can you make suggestions for me? I can be reached @ Beth33156@yahoo.com or cell # (305) 496 9773. Thank you for the Gluten Summit!!! It’s been so helpful! I hope to hear from you!! Beth

    sharon

    Fabulous information. Best set of details outlined after wading through earlier celiac-focused interviews. Just called friends to listen/watch as well!

      The Gluten Summit Team

      Sharon, thank you for attending the summit and for sharing this important information with your friends! We appreciate that very much!

    andrea

    If the age of onset is older, especially in women, isn’t there a possible hormone relationship? With me, and several people I know with gluten intolerance, it seemed that perimenopause set it off.

    Katrina

    Very informative and especially in the difference in testing and what to look for in Gluten Sensitivity. I’m sharing this with as many people as I can.

      The Gluten Summit Team

      Katrina, let’s work together to move the conversation forward about gluten sensitivity with or without celiac disease.

    Jackie

    I would like to thank Dr. Volta for all his research, at one time it was believed that you were daft or imagining things if you thought that wheat was making you ill. Your research has proven that this condition is real. Thank you again so much!!

    elizabeth

    Wonderful information that needs to be shared. How many are suffering needlessly?

    Sina

    Is villous atrophy different than leaky gut (i.e. increased intestinal permeability)? I thought they were related. Or does villous atrophy lead to leaky gut? I’m wondering b/c Dr. Volta said that NCGS people don’t get villous atrophy. But, they can get leaky gut, correct? If so, how would they get leaky gut?

      Loren Ziem

      If I’ve understood correctly, the intestinal permeability is caused by gliadin releasing zonulin [for everyone], and autoimmunological villous atrophy then MAY be caused by a resulting response to the spreading chaos. I’ll throw in some citations that helped me, but they’re gonna be pretty ugly without line breaks: http://www.ncbi.nlm.nih.gov/pubmed/16635908 http://www.ncbi.nlm.nih.gov/pubmed/21248165

      Laura

      Also being a woman, doctors think it’s your imagination – all in your head. Too bad health care is driven by Big Pharma – it’s business, not health – a lot of doctors trained to treat with prescription pad and surgery. Thanks for the doctors who really care and want to make a difference researching for answers.

    Andrea

    I would like to offer an alternative hypothesis for why people are not diagnosed until they are in their forties. I started getting brain fog at university in my early twenties. When I saw a doctor about it at the age of 25, I was sent away after being told off for wasting the doctor’s time. Since then I have had different symptoms of different issues all of which were either ignored or treated individually. It is only now, at the age of 46 that a doctor has taken me seriously and I know what has happened. The people in their forties may have just got to the point where their symptoms can be ignored no longer. Thank you so much for this interview. I have been in tears at times listening to it.

      Jennifer

      I think you are onto something with your idea that only the older patient manages finally to have the doctor listen, whatever may have been going on earlier. That agrees with my experience: first mystery symptoms were dismissed (chronic headaches, skin issues, even multiple miscarriages). I was in my twenties then. Actually I was “told off” by an internal medicine doctor as recently as this year (for wasting her and other doctor’s time- she ordered me to stop going to the doctor to find answers, and to view skin, stomach, and other issues as separate– “stop looking for one cause for all of it!” ) The difference is, at age 50, I knew better, ignored her, and went to Mayo Clinic, where I had greater success in finding answers.

        Merridy

        I agree with your comments. I’m 46 and have just been diagnosed with gluten sensitivity (celiac neither confirmed nor disconfirmed). I have been questioning doctors for at least 10 years about cognitive problems, only to be dismissed. I’ve had chronic fatigue for 17 years or longer – ignored. When I sought help for GI symptoms 12 years ago I was sent away with a flea in my ear for being ‘anxious’ and ‘neurotic’. I worked out gluten disagreed with me a year ago. My doctor insisted I do a gluten challenge recently to test for celiac and all hell broke loose! I am still recovering. So I agree – perhaps it’s only when hell breaks loose after 20 years of problems that a doctor will pay attention!!

          sharon

          Yes, most US critical-care docs were simply not looking for nutritional issues. “Dangerous Grains” was not published here in the US until 2003, and without having double-blind pacebo-controlled testing, no one believed Drs Hogan and Braley. Dr. Volta’s non-celiac info is important, yet he has focused on this for only the past 5 years.

    Lore

    What an abundance of research and generously shared. Thank you so much for all your work. It feels like this is a positive turning point.

    Debbie

    I’m an R.N., 56 yrs old and have had weird, seemingly unconnected symptoms most of my life. Brain Fog, Insomnia, Depression, rapid weight gain, etc, etc… Who knew!! A couple months ago I went gluten free and in the middle of this seminar, cut the 7 items talked about by JJ Virgin. I can’t stop talking to people about what I’ve learned! I know I will be better very soon! I’m cutting back some medications/supplements and adding others to help in my healing! God has blessed me greatly with this Summit!

      Bonnie

      Would you please tell me what the 7 items are? Thank you.

        Loren Ziem

        The Virgin Diet includes a trial elimination of: gluten, dairy, eggs, soy, peanuts, corn, and sugar/artificial sweeteners. IIRC, stevia and certain other artificial sweeteners may have beneficial effects on insulin concerns [I can find and cite, if you need], which was the major reason they were included for elimination.

          Loren Ziem

          Sorry, should clarify: many artificial sweeteners had possibly detrimental effects and went on the elimination list, but some didn’t [stevia, etc]. She didn’t mention them in particular in her presentation.

      Loni

      I can totally relate to everything you said and Merridy’s above!! Years of suffering with Hashimoto’s, ulcerative colitis, IBS, depression, terrible brain fog and what feels like brain inflammation, nickel allergy(interested fact from this lecture), joint and muscle pain, insomnia, chronic fatigue, multiple food allergies, bloody diarrhea and on colonoscopy, the gastroenterologist telling me the villi looked flat and inflamed, yet the biopsy sent to pathology came back neg. I still think there must be lab or specimen error. Also had positive antigliadin antibodies- high. Sad we have all had to suffer so many years without being properly diagnosed and having the valuable info from this summit to help us in self healing. Even though I see an “alternative” type doctor now, I have never been told I could not have rice or other grains other than wheat , rye, barley, and certainly nothing about legumes, although I still have lots of unresolved symptoms. I am definitely now going to try going off the rice and all legumes, and see if that helps, since rice is in my daily rice protein powder smoothie I take daily, which I thought was safe! It is definitely “validating” to hear that all these symptoms and conditions are associated with celiac or NCGS and that others experience the same too. My heart goes out to all you fellow sufferers who have been misdiagnosed or blown off for years! a

    Peter

    Thank you so much Dr O’Bryan for this wonderful summit. Listening from the UK where we are desperate for recognition of NCGS and are still living in the dark ages where gluten problems are concerned. It is almost impossible to get NCGS recognised here. I am very concerned over the issues of rice and corn being acceptable to eat. However this totally contradicts other speakers on the Summit saying that rice is a problem, along with corn. Who do we believe? In many repects NCGS seems worse than Coeliac in that one seems more sensitive to other foods far more than Coeliac disease. NCGS just has to be recognised as a truly serious condition. The problem is it’s name Non-coeliac gluten sensitivity does sound a bit weak – as thought it is not important – it needs to have a far, far stronger name given to it. Maybe Volta’s disease ?

      Loren Ziem

      I’m not associated with the Gluten Summit, but I’d like to offer a perspective; one of the prevailing themes common to many speakers here has been that not all foods work for everyone [e.g., I'm a dedicated vegetarian, and I certainly won't be quitting legumes, at least until "test tube meat" enters mass production]. Although this simplifies and discards a lot of good information here which I unfortunately haven’t recorded and pulled studies on, it’s a good starting point for personalized trial elimination diets.

    Peter

    Additonally to my comment above, I too agree with Andrea who has commented here as to why the age range is later for those with NCGS than Coeliac. The reason for this is that clearly patients with this condition go for years and years with no diagnosis, just getting sicker. I believe strongly that NCGS can begin in childhood and adolescence and it’s only that you finally get someone to take notice of it when it has got really severe and you are really sick. Previous to this it is just ignored so it is wrong to consider that it is a late-onset condition. You usually wait 20 years or more to be recognised. I am disappointed also that the Extra-intestinal symptoms of NCGS do not list bladder and prostate problems. Interstitial Cystisis which is a chronic inflammation of the bladder wall and treated wrongly by the medical profession is connected with gluten. Also many believe that prostatitis is caused as a result of gluten and a sensitivity to it. There are many more organ systems that are affected by gluten long term so there should be a lot more conditions added to this list.

      Andrea

      Volta’s Disease seems like a very appropriate name. Even if only 6% of the population is affected by it, that is many 100’s thousands in the UK alone most of whom will be struggling on, not complaining. We need to raise awareness of the issue to help people function in society rather than simply exist.

    Sherri

    I’m VERY appreciative for this summit! Wow! Perfect timing for me, as I have many of the symptoms of NCGS. A mystery to me until, since the day before the summit I have eliminated wheat and gluten and feel so different. Clearer thinking, no bloating, very low cravings for more wheat, mouth sores gone, mysterious skin rash around eyes gone. I considered myself very healthy up until a few months ago, since I’m a fitness professional and I went vegan 3 years ago. Then these strange symptoms started, I started research, and found the summit and it’s confirming what I have been suspecting! This is a miracle to me. Thank you so much.

    Al Metcalf

    Thank you for this very informative interview with Dr. Volta. We have a son in his late 30’s who recently developed (probably developing for some time before anyone recognized his increasing symptoms), a condition that seems to line up fairly symptomatically with NCGS. Brain fog, irritable bowel, bloody (bright red as well a black) stools, abdominal pain, bloating, flatulence, fatigue, headaches, etc. What really should have clicked, but which the mainstream Dr.s and specialists did not recognize and were not able to diagnose was about a year prior of chest pains and muscle cramping which would not normally release in his hands and feet, coupled with inflammation and debilitating swelling. Now that we look back on it, we really wonder if his cramps and chest pains were due to a lack of absorption of manganese, magnesium and calcium imbalance coupled with low Vit D3 and low Vit K2 as well. Could his heart and chest pains have indicated cardiac muscle spasms? If so, that is pretty scary!! With the research we as a family have done on GMO’s, gluten containing grains, glyphosate, etc. we have changed his diet to almost gluten free, which seems to have alleviated his reflux, but not completely alleviated his bloody stools. His headaches are pretty much gone, and the muscle spasms in his chest and hands and feet are becoming less. We eat only organic meats, veggies and fruits, and low gluten. We avoid most commercially processed foods and additives. So far, no Dr. has come up with a diagnosis. His Dr. and the Specialist wanted to give him a course of antibiotics just as a precaution against C-Diff, but he did not take it. (The lab testing did not reveal any trace of C-Diff, but they wanted to give the antibiotic anyway.) Now we are glad he did not take the antibiotic, because we are certain he would now be in worse shape what with antibiotics not being able to differentiate between the beneficial and non-beneficial bacteria, and would have wiped his digestive tract clean of all bacteria, and probably would have put him in hospital! Instead we increased probiotics, without his Dr.s OK. His Dr. was not thrilled that he did not follow his directive, and cancelled further testing! Why? We have come to the conclusion most mainstream Dr.s have not kept up on the changes that have been foisted on our food supply, and are not willing to look at the resulting increases in digestive and neurological fallouts. They seem to be stuck in what worked 25 years ago! We are now looking for an up-to-date Naturopathic Physician, if we can find one in our area, to take over his care. The mainstream medical practitioners do not understand! Thank you so much for this summit!! You have confirmed we are on the right track!

    Shirley

    Dr. Volte thank you for this talk and most of all for developing the test for celiac disease. I guess that would be the Celiac Blood Panel. I am celiac and after the test you developed proved this to be positive I feel so much better on a gluten free diet.

    VibeRadiant

    Very inspiring talk by Dr. Volta.

    Marion Burnside

    Thank you so much Drs. O’Brian and Volta, I will take your advice and listen again and again, to this wonderful and knowledgeable confirmation of so many symptoms that need sorting through and addressing. What a joy to discover there are answers to our problems, even at age 82. God bless you both.

    Rosalie Cornew

    Can’t thank you enough for enlightening us all through these amazing interviews. I felt I was behind in learning about correlations between gluten and autoimmune… and now I feel I’m ahead of the curve – thanks to you and your great team. I am armed with so much information that I can use to help my daughter and doctors in managing her 2 autoimmune diseases. Truly appreciate all the effort that went into putting this summit together. Can’t wait for the next one.

    NOV. 18, 2013

    Dr. Volte., thank you so much for your presentation..i have only found out i am celiac since ending of may….feel much better except once in a while…still have much more to learn….but have to tell you which i didn’t hear mentioned..is i have had hay fever in the fall for many many years..like almost 40 yrs…and this year for the first time did not get it…i figured it was from the wheat…thank you again….and hoping that celiac disease will keep spreading more and more…

    Joan

    Who would have though a corn and nickel allergy 35 years ago would lead to a goiter, IBS, hemochromatosis, NCGS, h pylori and now cholecystitis with an SUV of 3.9 noted within the gallbladder on a Pet CT Scan. Thanks for all your research. Hopefully, the larger medical community will soon embrace these findings as well.

    S

    Is there any study which shows Non Celiac Gluten Sensitivity Vs. wheat consumption(Organic/Non GMO ) Vs. wheat consumption(Non-Organic/GMO wheat) ?

    S

    Are most of the panelists in this series following Gluten Free diet ?

    Rae Davies

    Dr. O’Bryan, Thank you again for bringing this wealth of information to us–information that probably would not be available to us except for this seminar, because we are not in the loop to receive results of research studies and/or because our doctor is not aware of the studies.! Your suggestion to listen over and over again to the 3 anchor speakers is paying off in my increased understanding of their topics. Some of the vocabulary from my college introductory (introductory, as I did not go into the medical field) science classes has helped me understand some of the medical terms. I’m grateful. Thank you! Rae Widow of WW II Air Force Veteran, Mother of 3 Sons, GMa of 13 grandchildren and counting, Retired Public School Teacher of 28 years, after our sons were grown, grateful daughter of my King Jesus Christ. God bless you all!

    Rae Davies

    P. S. It is 7:50 PM here. Our oldest son is 57 and is an alcoholic and has compulsive/obsessive behavior. Perhaps, he has a gluten sensitivity? For the first months of my pregnancy, I assisted my husband and I took dental x-rays, standing at the prescribed right angles from the machine. This was prior to wearing a lead apron. After a 3-hour natural delivery labor, except with a bit of relaxant, and my husband’s semi-hypnosis treatment with me and helpful birth-coaching, the physician used “low” forceps, and Tom was born. Even though he was breast-fed, every evening from 5:30 – 8:30 PM he screamed. The doctor said it was colic. At 2, he fell off his dresser onto a cork-covered cement floor, and I don’t remember if that’s when his hyperactivity started, or if it had been there since birth. His dad taught him to read at 4 and reading 5th grade level by kindergarten. His memory was phenomenal, and he sang on pitch from an early age. His development was Swiss cheese with high reading skills but poor math skills. During his “angel” time, he was a joy to be around, great at conversation and British humor. But, something would set him off to his “devil” time, and he would explode like a volcano into an anger fit, smashing his most precious toy, never people, but toys and later, putting holes in walls and doors. His brain scan in the ’60s or ’70s showed no epilepsy. When I told Tom we were going to a psychologist that would help us know how to help him, he smiled and took my hand, as if to say, “Finally!” He felt very weird and different. The psychologist called it a learning disability. Too much information. Our diet was healthy, but I’m thinking maybe his problems could have been made worse by a gluten sensitivity. Thanks for listening! and thanks again for the Summit! Rae

    Carol Mielke

    A very brilliant explanation on the difference of celiac disease and NCGS. I finally understand it and do agree that preservative are bloating. I enjoy making my own food anyway, so this reinforces it. This was a very lengthly lecture but very informative, thank you so much. Sincerely, Carol.

    Dr.S.K.Gour

    Gluten sensitivity is a definite cause of increased permeability in the GUT. Has it any iteopathologic role in genesis of Ulcerative Colitis ?

    silvia bogdan

    Dear Dr. Obryen and members of the Gluten Summit Team, I don’t have enough words to express my gratitude for all of you and also for your guests for the huge amount of information we have just received. It’s been a rare if not unique opportunity for us, the “mortals”, to get minute and scientific explanations from “the creme de la creme” involved in this field. On the other hand maybe it’s time for many health practitioners to leave their “comfort zone” and try to connect the dots when treating their patients. I want also to express my gratitude for all the sponsors of this wonderful event and tell them that without their contribution we couldn’t be so much wiser these days and more healthy in the future.

    Kati

    I have a friend who used to be really overweight. At the age of 35 she was diagnosed with Celiac Disease. She went gluten free and lost 44 lbs.

    dr Szabó

    dr Volta gave the best comprehensive summary of the whole gluten related problem. Thank you very munch.

    sarah

    Dr O’Bryan, you recommended doing a nutrient evaluation. What is the name of the exact test? Is it a blood test? Which lab do you use? Thank you.

    Allie

    What a very informative interview this has been. Mr. Volta described my situation to a T. I was late forties, suffering terribly with bloating, wind, abdominal pain and sometimes feeling nauseous. Medication from the Dr made the bloating even worse. I had a caeliac test which was negative, so was told by the Dr that “it might be IBS” and that was as far as a diagnosis I got. Despite being told that I didn’t have caeliac disease, I decided to go gluten free about seven months ago. After three weeks, I saw a big improvement, far less bloating and wind. I still have occasional days where I have symptoms, but sharing a house with wheat eaters, there’s always the possibility of contamination, despite my best efforts. This summit and especially this particular interview has given me so many answers and I no longer feel as though I’m fumbling around in the dark with nowhere to turn for answers . Thank you all so very much.

    Katarzyna Nowak

    Extreemly intresting lecture! Thank You a lot. We’ve got a lot of information just to work with. I feel like a sudent on the best medical university .

    Karen

    Thank you doesn’t say enough for the information provided. Chiropractor has helped direct me to a gluten free and anti-inflammatory diet, still leaving many questions and ‘experimenting’ with foods – since I did discover some food allergies. Your information has helped direct me toward the NCGS and I am forever grateful because it has answered so many questions and showed me that I have been heading in the right direction! So appreciate your help Dr. Bryan and all the other doctors!

    Sofi

    If NCGS causes malabsorption and it is therefore suggested to do vitamin & mineral supplementation, won’t they also be poorly assimilated and so a waste of money? Also, ditto Sara above on what is name of nutrient evaluation you & Dr. Volta recommend and is it available at a GI or internist’s office? I haven’t researched your recommendation of Cyrex Labs, but I’m guessing that will be expensive. Is any of this covered by Medicare?

    Michelle

    I am a holistic wellness practition who uses the clinical kinesiology assessment system of dr. ulan (Nutrition Response Testing). I find all this information helpful, but we need to remember that there is probably a reason why these patients are experiencing sensitivity to gluten……WHAT is causing this…..in my clinic, we see Heavy Metals, Inbalances in the micro biome (but bacteria), Chemical sensitivies, and many more environmental issues……it we manage the root cause of these issues, the Gut gets symptom relief as well as the extra intestinal symptoms, and we often see changes in the diagnostic test results (my peers in other holistic disciplines perform more diagnostic test to prove those results), I do not generally do diagnostic tests in the clinic, I manage the body via the energetic communication and if the patient can follow my advise, they always get better. Just wanted to remind people that the underlying cause still needs to be identified……we can manage the symptoms by removing Gluten, but much of the CORN in the US is Genetically Modified and wrecks the patients micro biome……..so this non gluten corn is really not helping to support good Gastro intestinal health, and as several people mentioned above, myself, my children, nor my patients with these NCGN symptoms tolerate corn or rice well. Grain free, preservative free, organic is how my patients recover (with good quality raw, organic, whole foods and tissue concentrates, come herbs and homeopathic preparations to support their body’s physiology)..

      Diane Kordas

      Have your Vit. D evaluated. And if you are on Omeprazole, that will also reduce your Vit. D. I’m in the process of evaluation myself, and having to find information to give to my doctors in order to be treated. Good luck.

    Tracy

    I am “trying”a gluten free diet now to see if I am sensitive, I have stomach issues but my main symptom is a major fluttering in my heart or chest area…is that a symptom of gluten sensitivity? I have had a stress test and heart monitor they couldn’t find anything wrong with my heart.

    Katie

    Thank you so much for the summit it was very informative, my Dad has been talking about gluten free diet for a long time, and he is so healthy, but this summit really made it all make sense and I want to thank you all for making this known to the public I just hope that enough people heard it

    Jesenia

    Asking questions are really fastidious thing if you are not understanding something entirely, but this post presents nice understanding yet. Also visit my website :: Joseph Plazo

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