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Remembering Professor Martin Kagnoff, M.D., F.A.C.G.

Journal of Gluten Sensitivity Spring 2015 Issue - Originally published April 8, 2015

Celiac.com 12/15/2015 - Newly diagnosed with celiac disease, late in 1993 or early in 1994, I was reading a paper that turned my perception of this disease upside down. I learned that it takes more than susceptible genes and eating gluten to cause celiac disease. There is some added, as yet unknown factor in the onset of celiac disease. The report I was reading suggested that a fairly common viral infection might be that missing co-factor. It went on to say that 89% of subjects with untreated celiac disease also showed blood evidence of a particular viral infection called adenovirus 12, while fewer than 12% of control subjects showed evidence of past or present infection with this virus. It is a microbe that makes its home in our small intestines. The report went on to say that this particular virus contains an amino acid sequence that is identical to a sequence that forms part of a protein in gliadin, which is found in wheat, while similar proteins with the same triggering impact on our immune systems are also found in rye and barley. I was electrified by this insight. It offered a window through which I could begin to understand this enigmatic disease that made me react to a food that almost everyone I knew seemed to tolerate without any problems.

Photo: midweekkauai.comI looked to see who had written the article. The lead author was listed as M. F. Kagnoff, but my attention was drawn to Donald Kasarda’s name, also listed as an author, because I had seen that name before. Several years later, I attended a CSA/USA conference in Seattle. The name of one of the speakers was familiar. After a little checking, I realized that he was the lead author of the study that had touched off my imagination.

Dr. Kagnoff’s lecture followed immediately after a presenter who had repeatedly asserted that celiac disease is a very difficult diagnosis. Almost as soon as he got up on stage, Dr. Kagnoff said something to the effect that celiac disease is only a difficult diagnosis if you aren’t looking for it. The room suddenly became very quiet.

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The presentation went well, and he outlined the criteria for diagnosing celiac disease, and stated why he felt that it was a simple diagnosis. The speaker who followed him began by stating that celiac disease is a difficult diagnosis, despite Dr. Kagnoff’s assertions to the contrary. I left that conference with a strong sense of appreciation for Kagnoff on several levels: as a gastroenterologist, as a researcher, and as an independent thinker who was quite willing to offer a dissenting opinion where he disagreed.

Six or seven years later, a mutual friend introduced me to Marty Kagnoff at a cocktail party in New York city. It was a pleasure to finally meet him in person. I told him that I was most impressed with, and intrigued by his work with adenovirus 12. I also told him that I enjoyed hearing his assertion, at the Seattle conference, that celiac disease is a simple diagnosis. He seemed a little surprised that I was aware of his research from more than twenty years previous, and he said that his work had been eclipsed by newer work that explored other infectious agents. He was interesting and interested, and the three of us engaged in a lively discussion about some of the politics regarding celiac disease and its diagnosis. He was brilliant, creative, and independent; all the things that a researcher should be.

His passing is a huge loss to the medical profession, the celiac and gluten sensitive community, as well as to the biological research community. His contributions and discoveries shaped much of what we now understand about celiac disease, the intestinal mucosa, and intestinal immunity.

Source:

  1. Kagnoff MF, Paterson YJ, Kumar PJ, Kasarda DD, Carbone FR, Unsworth DJ, Austin RK. Evidence for the role of a human intestinal adenovirus in the pathogenesis of coeliac disease. Gut. 1987 Aug;28(8):995-1001

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1 Response:

 
Bob
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
16 Dec 2015 1:48:50 AM PDT
Mind began after a new infection with CMV (Cytomegalovirus) at age 39.

This virus also incorporates itself into the intestinal cells.




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I believe the talk around this forum is that cheerios are not gluten free enough for people with celiac at this time. I don't know if anything has changed on that and when their lawyer calls me I'll quickly delete this. haha

Could be we generally say get off of dairy for a few months when going gluten free. The part of the intestines that produce the enzymes, and help break down dairy are associated with the tips of the villi, which are the most damaged if not gone in celiacs. THIS is why most of us end up with a lactose intolerance early on. And most can introduce it later after healing. As to her symptoms with it there was a bunch of research about dairy permeated the gut and causing neurological issues in a autism study I was looking at years ago. And there have been other studies about damaged intestines and how the hormones in milk can easier effect ones body. Personally I also have a huge grudge against dairy on a personal level as it is not natural to suck on a cows tits and drink the stuff, nor your dogs, nor a rabbits......I mean come on even Human Breast milk you would find odd to drink as an adult right? Back in the past dairy was a great way to get calories and fats when there was famine, etc around I mean it is meant to make a calf grow into a 500+lb cow. But on a genetic and hormonal level it is not really for human consumption and now days the whole corporate BS propaganda push and dairy farms shove that oh its healthy stuff down your throat. There are plenty of dairy free options for everything feel free to message me if you need help finding anything I have been dairy free for over a decade.

The full celiac panel checks TTG IGA and IGG, DGP IGA and IGG, IGA, EMA as Jmg stated above. Your test included TTG IGA and IGA. If your IGA was low, a low on TTG IGA would be inconclusive. But your IGA is fine. A high on any one test is a positive for celiac and should lead to an endoscopy for confirmation. So I'd get tested for TTG IGG, DGP IGA and IGG and EMA since there are symptoms. Warning I'm not a doc.

I did a gluten challenge for my endoscopy and requested a second blood test after my follow up with the consultant. I never did see those results but my GP said no celiac was indicated: Which left me gluten free for life, that wasn't an option after the challenge, but with a less satisfactory diagnosis, one by omission rather than the definitive 'you're celiac' one I was expecting. Yes! I have been 'properly' glutened on a couple of occasions but on several more I've detected a change or a reaction based on what could only have been trace amounts. NCGS is as yet poorly understood but patients tend to have more neuro symptoms than digestive. That's definitely been my experience, although it was only after going gluten free that I realised quite how many digestive symptoms I had just been living with as 'normal'. Close friends and family get the full explanation. 'I have an auto immune disease similar to 'coeliac etc.' If they stay awake long enough I'll tell them about the less than perfect testing process I went through or the Columbia Med research and the possibility of a blood test soon. They can see the difference between me on gluten and off it so they understand its not all in my head* If I'm ordering food in a restauarant or asking questions about food prep etc I will often just self declare as coeliac - people are aware of that and understand those requests are medical rather than fad diet based. I don't have any problem doing this, I'm not going to claim that and then cheat on dessert for instance and to be honest I expect once the research is complete the two conditions may wind up alongside others as different faces of the same coin. In the meantime I safeguard my health and avoid getting into a detailed conversation about genuine gluten sensitivity versus faux hipster posturing! *apart from the bits which are in my head

I originally had it on my face and scalp. (22 years ago) First biopsy with dermatologist came back as folliculitis. Then when I had a new outbreak on my upper back, she was able to remove a nice clean blister and we got the diagnosis of DH. She started me on Dapsone (100mg/day) and gluten free diet. Now I take 25-50 mg/day. My understanding at the time was that DH was the skin version of Celiac. Did a lot of research on my own. I met Dr. Peter Green at a Gluten free Vendors Fair and he said that a diagnosis of DH IS a diagnosis of Celiac, even if no other symptoms. So I stay gluten-free