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The Standard Definition of Celiac Disease

The following excerpt was taken from the November 24, 1996 edition of the The Sprue-nik Press, which is published by the Tri-County Celiac Sprue Support Group (TCCSSG), a local chapter of CSA/USA located in southeast Michigan.

Dr. Joseph Murray, of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease. Dr. Murray gave us the standard definition of celiac disease: celiac disease is a permanent intolerance to gluten that results in damage to the intestine and is reversible with avoidance of dietary gluten. There are some important parts in this definition:

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Permanent: The effects of celiac disease may change from time to time. You may be sicker at one phase of your life than at another. For example, you may be sicker at age two, may seem to get better during the teenage years, may be sick again in your 20s (but with different symptoms), and then present with bone problems when you are in your 50s. So there may be different phases, but it is a PERMANENT intolerance. You do NOT outgrow it; you do not go through phases where you dont have it anymore. (That used to be what was thought and TAUGHT in medical schools.).

Damage to the intestine: There is definitely intestinal damage; without it you cannot define . For some people the damage is severe, for others it is not so severe. It is the cases which are not so severe that can be difficult to diagnose. If the damage is mild then the person interpreting the biopsy might not even think of celiac disease as being a possible cause of the damage.

Reversible: The damage should be reversible. Dr. Murray says there are about 5% of people with what he believes is celiac disease in whom at one point in their lives the damage becomes irreversible. In these cases there is intestinal damage that does not completely recover. It may partially heal, but not completely. One can infer that they have the same condition as celiacs that do recover, based on their history. There may be something different about that group of patients in their immune systems that makes them different, but that is an area that is still being actively researched.

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2 Responses:

 
Rosie
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said this on
09 Nov 2011 7:24:49 AM PDT
I think this article is splendid. I understood it completely, I now know what celiac disease is, and the effects of it! Thank you!

 
L.Manjunath
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said this on
12 Jan 2012 9:41:03 PM PDT
Very informative.




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^^^^^^ good info, tips and tricks^^^^^^^^^ yes, crumbs will make you sick. also, breathing flour/pancake mix, etc that is in the air because eventually, you're going to swallow some.

Hello I was diagnosed Dec 15 of last year and went totally gluten-free the next day. I actually got worse before I got better - it's a steep learning curve - but now, 4 1/2 months later I'm finally seeing improvement. Hang in there.

Called my GI doctor today to make sure he is going to look at my small intestine and do biopsy for Celiac for my EGD and he is. Thanks for the tip everyone about have to start eating gluten again. The office told me to break my gluten free diet and start eating gluten everyday until my EGD. Here's to being miserable again for a few weeks ???

I can completely relate! The horrible mental effects that I have been living with for years is the absolute worst side effect of eating gluten, HANDS DOWN. Worse than the endless tummy aches, worse than the constant diarrhea, worse than the week long migraines, worse than the daily fatigue and body pain.... I honestly though there was something seriously wrong with me and hated my life because of how I felt mentally. I always felt like I was drowning, not in control of my thoughts, trapped in some unexplained misery. My head was always so cloudy, and I was mad because I always felt so slow and stupid. I would feel so lethargic and sad and empty while at the same time be raging inside, wanting to rip out of my own skin. I was mean, terrible, would snap at the people closest to me for no good reason and just felt like I hated everyone and everything. Think of how crappy you feel when you have a terrible cold and flu - I felt that crappy, but mentally. Some days were really bad, some were mild. I always thought it was because I was getting a migraine, or because I had a migraine, or because I had just overcome a migraine, because I didn't sleep well, because....always a random reason to justify why we have all these weird unrelated symptoms before we get diagnosed. I'm happy to say that I have been gluten-free for about 2 months now and though I am not symptom free, the first thing that improved was my mood. I no longer feel foggy and miserable. For the first time in years, my head is clear, I can actually think, and I feel positive and like I am in control of what's going on in my head. I don't hate the world. I don't spend every day bawled up on the corner of the couch depressed and angry. The release of these horrible symptoms is enough to never make me want to cheat, no matter what I have to miss out on. So insane how a little minuscule amount of a stupid protein can wreck such havoc.

I wanted to collect some of the info on NCGI in one place so that visitors who test negative but may still have an issue with gluten can be directed there. I'll add to this post as I find new links, but feel free to add or contribute anything you think may be of use! Matt --- Useful links: An overview from Alessio Fasano, one of the world's leading researchers on celiac and gluten sensitivity: https://www.youtube.com/watch?v=VvfTV57iPUY Umberto Volta, another leading researcher in the field gives some of the latest findings about NCGI: Presentation slides from Dr Volta's visit to Coeliac UK - NCGS about halfway through A scholarly overview from celiac disease magazine: https://www.researchgate.net/profile/Knut_Lundin/publication/232528784_Non-celiac_Gluten_Sensitivity/links/09e415098bbe37c05b000000.pdf A good overview from a sceptical but fair perspective: https://sciencebasedmedicine.org/a-balanced-look-at-gluten-sensitivity/ Another overview: https://celiac.org/celiac-disease/understanding-celiac-disease-2/non-celiac-gluten-sensitivity-2/ University of Chicago's excellent celiac site's take: http://www.cureceliacdisease.org/category/faq-non-celiac-gluten-sensitivity/ A compelling account in the British Medical Journal from an NCGI patient: http://www.bmj.com/content/345/bmj.e7982 Here's some positive news about a potential new test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 NCGI in children: NCGI and auto immune study: https://www.ncbi.nlm.nih.gov/pubmed/26026392 Also consider: Fodmaps: http://www.kcl.ac.uk/lsm/research/divisions/dns/projects/fodmaps/faq.aspx This Monash study: http://fodmapmonash.blogspot.co.uk/2015/03/the-truth-behind-non-celiac-gluten.html suggested some who think they're reacting to gluten should actually be reducing fodmaps Sibo: http://www.webmd.boots.com/digestive-disorders/small-intestinal-bacteria-sibo