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“Atypical” GI Symptoms on the Rise Among Gluten-Free Celiac Patients

Celiac.com 11/15/2008 - Managing celiac disease can be challenging in the best of circumstances, so imagine the frustration of experiencing on-going gastro-intestinal symptoms even while following a gluten free diet. Such frustration is increasingly common among people with celiac disease.

With increasing frequency, doctors worldwide are finding persistent villous atrophy in celiac patients who are following a gluten-free diet. Results of a study published recently in the Scandinavian Journal of Gastroenterology indicate that persistent intestinal villous atrophy in celiac disease patients on a gluten-free diet is associated with gastrointestinal symptoms considered 'atypical' for celiac disease and which are different from those present at the original celiac disease diagnosis.

A team of doctors based in Italy recently set out to assess a possible connection between persistent damage of the villi and 'atypical' gastrointestinal symptoms in celiac disease patients on a gluten-free diet. The team assembled a study group of 69 patients with celiac disease, all of whom were following a gluten-free diet. They then isolated 42 patients with gastrointestinal symptoms that warranted esophagogastroduodenoscopies (group I), while the remaining 27 control patients were asymptomatic at the time of the study, and served as a control group.

Group I showed higher numbers of persistent endoscopic lesions compared with the control group. In fact, 35 patients (85%) from group I showed villous atrophy compared to just 9 (33%) of the control group.

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The team noted that the gastrointestinal symptoms experienced by group I differed from those present at the time of their celiac disease diagnosis. 6 patients from group I experienced anemia/diarrhea/weight loss, while 12 experienced symptoms similar to gastroesophageal reflux disease, and 24 patients experienced abdominal pain and/or constipation.

Among the patients from group I, there was no difference in gender distribution, age and duration of gluten-free diet between those with normal villi and those with persistent partial villous atrophy, though the patients with persistent symptoms showed higher intraepithelial eosinophil counts than the asymptomatic patients.

These findings speak to the importance of developing protocols to monitor the progress of celiac patients over the long term. Until such protocols are developed, it is important that people with celiac disease pay close attention to any symptoms that may be celiac-related, and report those symptoms to their health care professionals at the earliest signs of trouble.

Scandinavian Journal of Gastroenterology; 2008: 43(11): 1315-21

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5 Responses:

 
Ignacio Abel
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Dec 2008 5:00:29 AM PDT
Maybe it's like Elaine Gottschall in her book 'Braking the vicious cycle' said: the celiac disease is a bacterial disease and no complex carbohydrates (no grains, dairy, etc.) should be eaten. I bet everyone showing symptoms despite following a gluten free diet would find a complete relief with the Specific Carbohydrate Diet.

 
John B. Symes, DVM (aka Dogtor J)
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said this on
01 Dec 2008 6:33:41 AM PDT
Understandable. Frustrating, I know, but understandable.

As many know, there are three basic reasons for persistent signs of celiac disease on the gluten free diet:
1) Cheating
2) Hidden sources of gluten
3) Coexistent food intolerances to dairy (e.g. casein), soy, and corn. This is the biggest factor, I believe, with corn (especially GMO) being a rising cause.

I personally believe that celiac disease is a viral adaptation and we know that chronic latent viral diseases (e.g. Herpes group) have many triggers. There are also many factors that keep the immune system from keeping these guys under control (including environmental pollutants).

Most with celiac disease will do well clinically on a gluten free diet but as we know from follow-up testing, the minority actually have normal villi. The above three reasons play the biggest roles but I believe that there are those among us who will persist in having signs because of immune incompetence, some created by the celiac disease itself and some by environmental issues.

The bottom line? Keep at it. Consider eliminating more foods (dairy, soy, corn)- testing if necessary- and keep feeding that immune system. Read about environmental pollutants that may be affecting your health (including xenoestrogens, fluoride, and air pollution).

I hope this helps,
John

 
Mary K
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said this on
01 Dec 2008 1:47:44 PM PDT
The percentage seems very high...this makes me wonder if the diet included oats...they are now included in many 'gluten free' diets. I know some people say they don't react to oats...but others do react...Oats are now much more accepted. I wish the article specified this.

 
Terri
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said this on
02 Dec 2008 10:04:59 AM PDT
This article was very helpful to me, because it alerts me to the fact that I need to remain diligent in listening to my body even though I have followed the gluten free diet religiously for 7 years! My problem continues to be finding a balance between diarrhea and constipation. This article also points out the need to continue having endoscopic tests to check the villi.

 
MariahGrace
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said this on
19 Mar 2009 7:04:18 PM PDT
I am glad I came across this article. I have been following the gluten-free diet for over nine years and a casein free diet for two. I am also taking medication for IBS. Despite all that, I still continue to have GI discomfort that can reach almost unbearable levels. This article helps me know that I am not the only one experiencing these problems and maybe there are answers out there.




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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