Extended Interview with Dr. Peter Green on Celiac

I'm wondering why you didn't ask Dr. Green what the goal of his research is and is he any closer to it. Are they trying to find a way, like taking Lactaid pills before eating dairy, of being able to stop the autoimmune reaction to gluten? Another question is: once you are diagnosed and follow the diet, what, if any, follow-up would a physician do? My son was diagnosed at under 2 yr. of age by biopsy and has only had one blood test. Is there a way of knowing if his diet is strict enough? He is now 14 and healthy. Thank you for the program and for getting the word about celiac disease out there, which is one of its biggest problems.

Hi,

Thanks for interviewing Dr. Green about Celiac Disease. For those of us who can't make it to the conferences to hear him and other experts, this audio file is an important resource.

I did find it very interesting that Dr. Green suggests that people continue to eat gluten until they are diagnosed. The University of Chicago, Celiac Disease Center states that the average time for a symptomatic person to be diagnosed with Celiac Disease is four years. Anecdotal evidence shows that it can take from 6 to 12 years.

And the stories I hear from people trying to get healthy run the gamut between distressing to horrifying. The only other time I have heard such stories is when I was the Executive Director of People Against Sexual Abuse, Inc. Often family members would call hysterical about the accusations that Doctors and other health professionals would make about the adults "issues" in reported cases of child sexual abuse. My experience is that if you take away the specific topic the accusations are identical.

Also, I have been concerned for a long time that there is a perception that there is no "test" for gluten sensitivity/gluten intolerance. In fact, there are tests for gluten intolerance, however they are not recognized by allopathic doctors.

I was diagnosed with Celiac Disease as an infant in 1945/46 and suffered with the Hass Diet (aka the banana diet). Now I don't test positive. And at my age, I am fine not having a diagnosis. I am however, continually insulted and offended that my diagnosis is not considered a valid one and with the innuendos that the reason I have a diagnosis is that it was fashionable “at that time” to diagnose infants with Celiac Disease. I've heard it more than once.

And along with my other dreams, I have a dream that one day it will be as important to be diagnosed gluten intolerant as have Celiac Disease.

I look forward to the day when medical folks can get together on helping people attain healthier lifestyles.

I would like to have a 'gluten' food list.
It would make me more aware of what I should definitely not eat.
So this would be added besides: wheat,rye,oat,etc.

Hello and thank you for putting this audio on line. I was particularly interested in Dr. Green's comments on the neurological aspects of sprue. Is there any source on the net that can be accessed to learn more about this topic? Thank you, Richard C.

I found both of Dr. Green's audio's very interesting. I have gone to Dr's for years over various symptoms. Although none of them are life threatening, they never resulted in any help. Frequently, I was given an expensive medicine that helped a little or caused more problems than it helped. I was also told that there was nothing really wrong with me except I needed psychological help (I read that as, if I (the god like doctor) can't figure out what is wrong with you, it must be because the symptoms aren't real). Then about a year ago, I read an article that stated if you have bowel movements that float, you may have pancreatic cancer.

Since my bowel movements have always floated, I searched and found that it also means you may have celiacs. I quit eating gluten and now 10 months later, most of my symptoms have improved. This includes arthritis in my feet, dry eyes, headaches, stomach aches, constant hunger, inability to lose weight, constant bruises, constant borderline anemia, constant tiredness, tender leg muscles, lack of flexibility, an irritating level of brain fog and on and on.

I have found a large body of research articles in regard to the neurological manifestations of celiac disease and/or gluten sensitivity. You can find them here, and they include information on peripheral neuropathy, seizures, gluten ataxia, cognitive decline, depression, migraine and more:
http://jccglutenfree.googlepages.com/theneurologicalmanifestationsofgluten

Dr. Marious Hadjivassilou is a pioneer researcher of gluten ataxia and has authored many papers in regard to the neurological manifestations of gluten sensitvity:
http://jccglutenfree.googlepages.com/halloffame

Hope this helps!

Cara

I am also thrilled to hear discussion in regard to gluten sensitivity w/o villous atrophy. We had to self diagnose eight years ago after failing the stringent diagnostic criteria for celiac disease. We were told without doubt that my daughter need not restrict gluten. We put her on a gluten free diet anyway, based on the work of Dr. M. Hadjivassilious and Dr. K. Fine. Her explosive diarrhea of 5-6 times a day for over a year, recurring episodes of mosquito bite like rash, with mild fever and vomiting, and fleeting episodes of eye lid drooping, staggering, leg drag, slurred speech, and rag doll fatigue all vanished within months.

My family does not even show the "Must Have" celiac genes, but rather HLA DQ1, found in up to 20% of gluten sensitive neurological patients according to Dr. M. Hadjivassiliou. Yet... your average GI will pronounce you free and clear if you don't have the prerequisite HLA Types. Just another pitfall... keeping people sick :(.

But, I see progress with this report!!! I leave smiling :).

I am the misdiagnosed Asperger high functioning systemic autistic with gluten intolerance. I have yet to be formally diagnosed with autism. The battle it took me to be accurately diagnosed with a potentially deadly celiac sprue took more than 8 months of fighting the practice of medicine for pure medical and genetic science. I have proved what head of Yale Rare Digestive diseases Dr. Martin Floch said I could not possibly be, HLA DQ8 positive.

The battle I am expecting to prove how this is related to autism is going to be a greater battle to get the pure genetic test of the CDH9 and CDH10 variant known to be associated to autism. They will not be hiding from me much longer. Genetic science is the answer to our health care needs. I have over $100k of practice of medicine telling me what the genetics proved 100% inaccurate. The simple 99.9% accurate genetic test cost me under $200. I am coming!