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Non-classical Symptoms Common for Vast Majority with Celiac Disease

Celiac.com 12/26/2014 - Celiac disease can have such a wide-ranging number of symptoms, ranging over so many parts of the body, that it can be hard for doctors seeking to make a diagnosis to even suspect celiac disease as an underlying cause in the first place.

Photo: CC--liviana1992A team of researchers set out to better understand the characteristics of celiac disease by looking at the findings in a large number of celiacs diagnosed in a single referral center, and to using clear definitions of the clinical, serological and histopathological aspects of celiac disease to get a better picture of how the disease presents itself.

The research team included Umberto Volta, Giacomo Caio, Vincenzo Stanghellini and Roberto De Giorgio of the Department of Medical and Surgical Sciences at the University of Bologna’s S. Orsola-Malpighi Hospital, in Bologna, Italy.

For their study, their team looked at data on celiac patients admitted to S. Orsola-Malpighi Hospital from January 1998 to December 2012. They found a total of 770 patients ranging from 18 to 78 years, averaging 36 years old. A total of 599 patients were female.

The team broke celiac disease down into three types: The first type, classical, in which patients present with malabsorption syndrome. The second type, non-classical, in which patients experience extraintestinal and/or gastrointestinal symptoms other than diarrhea. The third type, subclinical, with no visible symptoms.

The team evaluated patient serology, duodenal histology, comorbidities, response to gluten-free diet and complications.

A total of 610 patients (79%) showed clear physical symptoms when they were diagnosed, while 160 celiacs showed a subclinical phenotype.

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In the symptomatic group 66% of celiacs were non-classical, that is, they experienced extraintestinal and/or gastrointestinal symptoms other than diarrhea.

Only 34% of patients in the symptomatic group showed classical malabsorption syndrome.

The team found that just 27% of the non-classically symptomatic group complained of diarrhea, while other gastrointestinal manifestations included bloating (20%), aphthous stomatitis (18%), alternating bowel habit (15%), constipation (13%) and gastroesophageal reflux disease (12%). Extraintestinal manifestations included osteopenia/osteoporosis (52%), anemia (34%), cryptogenic hypertransaminasemia (29%) and recurrent miscarriages (12%).

Positivity for IgA tissue transglutaminase antibodies was detected in 97%. Th steam found villous atrophy in 87%, while 13% had minor lesions consistent with potential celiac disease.

A large proportion of patients showed autoimmune disorders, such as autoimmune thyroiditis (26.3%), dermatitis herpetiformis (4%) and diabetes mellitus type 1 (3%). Complicated celiac disease was very rare.

This study demonstrates that the clinical profile of celiac disease has changed over time, and now features much more non-classical and subclinical phenotypes.

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14 Responses:

 
Donna
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said this on
28 Dec 2014 11:00:14 AM PDT
It's a lot to think about.

 
peggy
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said this on
29 Dec 2014 6:30:34 AM PDT
I found this article to lift the roof off of my personal experience. The definitions of technical/medical language were quite helpful. Still yet, there were moments when the reading level left me feeling as if I was reading from a medical journal.

 
Sue Parks
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said this on
29 Dec 2014 8:16:42 AM PDT
Thank you for all of your excellent articles. I love the data you use to prove/disprove theories about celiac. In my case, I was 50 before I was diagnosed-never had diarrhea and, sadly, my doctor of many years felt that was the must needed symptom to diagnose. By the time I was diagnosed, I had a complete stricture, terrible ulcers, skin lesions and full blown lupus and sjogrens. And what did I do when my stomach was a mess-eat a bowl of cereal as I was told to eat a bland diet. Unfortunately, I found bread alone can kill you slowly and painfully. I lived a life of silent suffering always thinking it was in my head until I finally put my food down when I could not even swallow water. We have to bring light to this terrible disease and malfunction. Thank you for doing so!

 
Rick M.
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said this on
29 Dec 2014 8:26:22 AM PDT
Was I missing something or was vomiting not listed as a "non-classical" symptom?

 
Maxine
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said this on
29 Dec 2014 5:03:06 PM PDT
Excellent point! I ended up with this happening as I got to the point of barely being able to eat anymore... I think they didn't consider what happens when an un-diagnosed person gets near the point of an emergency room visit...
What about the smell of gluten products when in a severe reactive state? Anyone have that?

 
Sherine
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said this on
29 Dec 2014 12:47:07 PM PDT
It's highly informative to know that the celiac patients could show no symptoms.

 
Hialry
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said this on
29 Dec 2014 1:56:10 PM PDT
Once again Jefferson, you come through with an interesting and concise article. Thanks so much for your continuing research.

 
Gloria Clemons
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said this on
29 Dec 2014 2:52:19 PM PDT
I was told 2 years ago that I had celiac disease after a colonoscopy. I had no outward symptoms so I did nothing about it. I did have a very low B12 count and the doctor was unable to control my iron levels so he ordered another colonoscopy and again I was told I had celiac disease. I also peripheral nuropathy. So I decided to do the gluten free diet about 3 months ago. I can't see any change yet but I have lost about 7 lbs. I have not had any trouble giving up bread since I didn't eat that much anyway. But I do miss pizza. I am doing this in hopes that it will help the neuropathy somehow. So far no change. I also have spinal stenosis. My doctor had never taken celiac seriously.

 
R Hyde
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said this on
12 Jan 2015 4:19:54 AM PDT
I had the neuropathy too and found it was caused directly by Vitamin B12 deficiency. It got a lot better after I took 1000 mcg of B12 sublingually (sublingual lozenges provide direct absorption through oral tissues, not going through the impaired digestive system) for several months.

 
Antoinette
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said this on
29 Dec 2014 2:56:36 PM PDT
Very interesting indeed.

 
maggielynne
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said this on
29 Dec 2014 9:41:14 PM PDT
Nine months ago after I connected the dots (and being told 5 years ago after a colonoscopy that I did not have celiac disease) I had genetic testing. It found that I had a gluten sensitivity gene from one parent and a gluten sensitivity/celiac gene from the other parent. The dots I connected were that I had a blistery rash on and off for 26 years and finally connected it to every time I ate wheat. My grandmother died of non-alcoholic cirrhosis of the liver and my brother was diagnosed at 16 with type 1 diabetes (52 years ago). After I was diagnosed my brother asked his endocrinologist about celiac and was told he was too old and he didn't have the symptoms... vomiting, etc. The doctor did not even suggest at least having a blood test.

 
Christina
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said this on
31 Dec 2014 4:42:36 PM PDT
Tell your brother to RUN to a new doctor.

 
John

said this on
02 Jan 2015 1:17:42 AM PDT
Brilliant article - I have never been diagnosed as 'coeliac' but have suffered a massively curtailed life with chronic illness. Being repeatedly dismissed by doctors telling me I wasn't coeliac because I don't have classic villi destruction. However, I echo so much of what every ne else is saying. In the end I was so desperate, unable to walk and in pain I went on a gluten free diet and had an instant health improvement. Unfortunately having never been treated and suffering obvious symptoms for 40 years my health was badly damaged and will never be fully well again. I do have a consultant now who understands my non coeliac gluten sensitivity.

Maxine - yes I do 'smell' gluten if I open a cupboard with any gluten containing food in it. I am very ill indeed if I accidentally ingest any. I was almost am accident and emergency admission in an ambulance at one point.

This is a serious health issue and most doctors just don't believe it or get how ill people are with it

 
Miguel Rosado
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said this on
05 Jan 2015 4:13:21 PM PDT
I am not crazy! I am not the only one claiming a to have gluten reaction from smelling gluten! so, there is something to it.... I have the same gene problem than Maggielynne could be the same for you John.




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Cycling Lady, LMAO at IBeStumped! So true. Yes, he is trying the band aid approach it seems. That's probably the most frustrating thing of all. So yesterday I get a call back from his office and they say to stop taking the Viberzi and switch back to Imodium! I reminded them that Imodium didn't work, I had already used it 8 days with no changes. His assistant informed me that that is all he can recommend at this time until he sees me at my next appointment which is 5/24! I live near Chicago and I am about to make an appointment to go to the University of Chicago hospital which is the top celiac research hospital in the country. Hopefully they can give me better answers.

7Hi jen and welcome No-one can diagnose remotely via nterwe posts but if there was such a game as celiac / gluten sensitive bingo, I would be calling 'House!' having read your account above... Lots of things fit the pattern as I'm sure your lurking has revealed. It's a tricky condition to diagnose however so you may have a little wait before you join the coolest club in town and get your funky celiac membership card For now it's really important that you stay on gluten. Keep eating it as accurate testing requires it. Ask your doctor to check the boxes for celiac testing alongside your liver blood tests. There should be enough in your history to get this without hassle but if they're reluctant INSIST and don't be afraid to assert your reasonable suspicion and wish to clarify and exclude. A good liver specialis will be aware of the possible links so you should be ok. If not gt second opinion. Ask for a full celiac panel as there are variety of tests. Find further info here There's a lot to take in, but be positive, I think you are on the right track and if so, you could soon be feeling better than you ever thought possible!

Hello, I am in a job that I travel every 3rd week...It gets challenging becuase many times I am doing audits of warehouses and they dont even have a cafeteria. I usually bring gluten-free protein bars as a back up if I have to miss a meal and then eat when I get back to the hotel. Just a suggestion because they certainly fill me up....Have a safe trip...Kelly

Hello all, I'm a new member here but have lurked for a while. I'm looking for some advice regarding my medical history, possible symptoms of celiac and next steps. General info: female, low level smoker, drink alcohol, aged 32. I started having bad gastro issues when I was around 17. Since then I've consistently suffered from chronic diarrhoea, frequent discomfort in the tummy area, feelings of dehydration despite drinking at least eight glasses a day and frequent fatigue for no real reason. In 2008/9 I visited the doctor as my diarrhoea was having an effect on my studies at the time. The doctor tested me for allergies; eggs, fish, gluten and lactose and did a "standard" blood test. Everything came back fine except my liver results, which were elevated to double (I did not the see the results for myself so can't say which enzymes etc). I was told to drink less and take Imodium. The doctor implied that perhaps I was stressed and / or anxious and, still being young plus a student who regularly went out drinking, I accepted this advice and carried on with my life. I would here add that I am not an unusually stressed person - in fact, learning to deal with my unpredictable bowels has forced me to be quite a laid-back person! Fast forward to 2016. I had been living with my partner for two years by this point who had noticed my bowel habits and informed me that this was definitely not normal. He encouraged me to try out a gluten free diet since I was apprehensive about visiting a doctor only to be fobbed off with Imodium again. I did the diet as strictly as a newbie can for around two months before we set off travelling. During the diet I noticed that after a couple of weeks of extreme tiredness I felt quite a lot better - I kept a food journal at the time which showed that I almost immediately had diarrhoea once after eating an ice-cream, i felt bloated and unwell after an attempt to make oat muffins (maybe i didn't cook them very well though!) and I felt bloated and had diarrhoea after eating some fish fried in flour (We made a mistake in ordering them but I didn't want to complain). My partner also reported that my mood swings (which I admit can be a little unpredictable) were much better. Once we started travelling I gave up and ate what I was given as we were staying with friends etc much of the time. Toward the end of our trip I started to feel extremely tired, to the point of having to stay in for "rest" days, and my guts were very unhappy. I chalked it up to irregular eating patterns, too many beers and late nights in general. During the trip I also had an extreme hangover after drinking wheat beer. And, while of course I accept that any overindulgence can make you ill, I really felt that that level of hangover was quite out of the ordinary. Finally, I developed a strange lump under my armpit during this period. Now back at home, I decided to go to the doc and check out the odd lump under my armpit. The doctor was pretty confident that it was nothing to worry about cancer-wise but she ordered a battery of blood tests just to be sure. The lump is fine (good news) but the results showed elevated GGT, high-ish ALT and normal AST liver enzymes plus signs of dehydration in red bloods / higher (but not concerning) levels of white bloods. I'm scheduled to go back for another blood test to double-check liver function and discuss results - if it is again high she will send me for a ultrasound. Does this history chime with anyone here? I know that the correct course in basic health terms is to stop drinking for some time (easily done) and stop smoking forever (easy to say...) but I cannot help but think that something else is going on here. I will discuss this with my doctor and make clear that my bowel issues have not been resolved and that the initial IBS diagnosis wasn't based on any thorough testing so to speak. In the meantime - does anyone have any advice for me in times of avenues to research or experience of similar symptoms? Gluten remains in my diet but in all other respects it could be regarded as very healthy, I think anyway... (pescatarian, plenty of fruit and veg, little to no sugar on a daily basis, not much dairy to speak of...) Thanks in advance and sorry for bending everyone's' ear about this... I guess it's just taken a long time for me to admit I might be sick and I need some help. Jen

Wish I could give you a hug. Unfortunately I know how that feels with Neurologists, Internists, Endocrinologists, Rheumatologists, GIs..... I got so tired of crying my drive home after refusing yet another script for Prozac. I do hope your GI can give you some answers even if it is just to rule out other possible issues. Keep on the gluten and we are here for you.