I want to make one more post on the subject matter of Gluten Sensitivity before I get back to finding more fun recipes and ideas for our gluten-free kiddos.
Since my diagnosis of celiac disease 5 years ago, I have been very interested in learning about my gluten sensitivity story. This interest catapulted into a mild obsession of sorts after my uncle passed away two years ago from Non-Hodgkin’s Lymphoma. Knowing there is an increased risk for Non-Hodgkin’s Lymphoma in people with celiac disease, CD is genetic, and I am biopsy confirmed with celiac disease; it is a natural leap for me to suspect my uncle had undiagnosed CD. Unfortunately, I will never know as my pleading for him to be tested was pushed aside as doctors were trying to save his life. My uncle passed away 9 days after his diagnosis.
With the sudden popularity of the gluten-free diet, I have met many people who are trying the diet on for size without an official diagnosis of celiac disease, or non-celiac gluten sensitivity (the previous link is to an eye-opening article by Dr. Scot Lewey, a board-certified gastroenterologist). I would say an overwhelming majority of the people I have spoken with, said they have noticed a significant improvement in their overall health on the GF diet, so they chalk it up to having a ‘gluten intolerance.’
Having gone down this road myself, even knowing I have celiac disease, I succumbed to testing the gluten waters after being on the gluten-free diet for many months. When I did not have a gastrointestinal reaction (as in no stomach ache, no diarrhea, etc.), I allowed the seed of doubt to take over in my head and I dangerously stopped being as strict on the diet as I needed to be. After many stops and starts on my GF diet, a series of events brought me to my knees and I became painfully aware of the consequences of such a foolish notion.
Now, whenever someone mentions that they are ‘gluten intolerant’ but do not have celiac disease, I ask them how strict they are with the GF diet. Many times people say they do their best but because they do not have CD, they do not need to worry as much about cross-contamination, etc.
My question back is always this: How do you know?
A few days ago, someone with a similar concern made a post on the Celiac Listserv. She received several responses, including one by Ron Hoggan, Ed.D. (co-author of Dangerous Grains, the book I am doing a personal giveaway for tomorrow!). Ron’s reply was the first time I truly began to understand the complexity and sheer magnitude of the Spectrum of Gluten Sensitivity, which includes two diseases that I have, celiac disease and dermatitis herpetiformis. It also includes much more, all equally, if not more serious, gluten-induced disease and illness. If you have not been officially diagnosed with CD and/or DH, but think you are ‘gluten intolerant,’ I highly encourage you to read the following from Dr. Ron Hoggan (bold emphasis added).
The phrase “gluten intolerant” is a rather nebulous term which is why I try to avoid using it. I prefer to use ‘gluten sensitivity’. The sub-groups of gluten sensitivity are: gluten sensitive enteropathy (otherwise known as celiac disease); non-celiac gluten sensitivity; neuropathic gluten sensitivity, etc. Gluten sensitivity is the term recommended by the world renowned celiac researcher, Dr. Michael N. Marsh. The terminology I advocate is congruent with Dr. Marsh’s assertions and it provides some clarity, as it often identifies specific sites of damage induced by gluten, distinguishes between some subgroups, and allows even the novice to accurately interpret some discussions of these topics.
The varying opinions on your biopsies may have been driven by just how familiar or unfamiliar these physicians were with the Marsh system for categorizing intestinal damage, which was developed by the same Dr. Michael Marsh mentioned above. The Marsh system is gradually being adopted throughout most of the industrialized world, as older pathologists and gastroenterologists advance their understanding, and the younger ones usually learn about the Marsh system during their specialization training. Of course, the terminology I recommend also makes it very clear that there are a number of types of gluten-induced damage to various body systems.
Dr. Rodney Ford, another world renowned celiac expert, has offered the term ‘gluten syndrome’ to incorporate the various groups of gluten sensitivities under one large umbrella. I also subscribe to that choice of terminology. Careful word choices in this regard are, I think, critical to understanding the broader field of gluten sensitivity, and that celiac disease is just one sub-set of a rather large and growing continuum of illnesses that requires a life-long gluten free diet. Celiac disease has long been considered the most serious of this spectrum and other gluten sensitivities were considered “lesser” ailments. However, Anderson et al recently published findings that suggest that non-celiac gluten sensitivity may more frequently lead to serious illness or death than celiac disease (1). If confirmed by further research, we may need to revise our opinions regarding where celiac disease falls on the gluten sensitive spectrum.
I hope my comments serve to clarify this issue.
Ron Hoggan, Ed. D.
Ron Hoggan, Ed. D.
co-author: Dangerous Grains ISBN: 978158333-129-3 www.dangerousgrains.com
author: The Iron Edge: a complete guide for meeting your iron needs ISBN: 978-0-9736284-4-9 http://tiny.cc/ironedge
author: Smarten Up! ISBN: 978-0-9736284-3-2 www.smartenup.info
editor: Journal of Gluten Sensitivity www.celiac.com
editor: Cereal Killers in press
1. Anderson LA, McMillan SA, Watson RG, Monaghan P, Gavin
AT, Fox C, Murray LJ. Malignancy and mortality in a
population-based cohort of patients with coeliac disease or
“gluten sensitivity”. World J Gastroenterol. 2007 Jan
As you can see, Ron sites his sources of peer-reviewed medical research, which carries an incredible amount of weight with me, as it should with physicians who understand the rigors of the peer-review process. In the book Dangerous Grains, the list of sources is 28 pages long, so you can easily look up the abstracts for further reading and/or take copies to your physician.
I would love to hear your thoughts and personal stories on this subject. I think it is extremely helpful for a lot of people, to read about the medical journey’s of others that might be in a similar boat.
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