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The Top Ten Physical Complaints from Celiac Patients

Celiac.com 01/16/2015 - Most people with celiac disease suffer from classic symptoms like weight-loss and diarrhea before diagnosis, right? Wrong. In fact, the most common medical issues for people with celiac disease might really surprise you.

Photo: CC--Kirian FosterA team of researchers who recently looked at data on 770 celiac patients admitted to S. Orsola-Malpighi Hospital from January 1998 to December 2012, found that even though 80% of people with celiac disease have symptoms other than diarrhea, only 1 in 3 people with celiac disease shows classical malabsorption symptoms.

Notably, two out of three people with celiac disease show non-classical symptoms. The majority of people have non-gastrointestinal symptoms. In fact, the top ten medical complaints of people with celiac disease are:

  1. Osteopenia/Osteoporosis—a full 52% of patients with celiac disease suffer from osteopenia/osteoporosis.
  2. Anemia—about one in three celiacs (34%) suffer from anemia.
  3. Cryptogenic hypertransaminasemia—nearly one-third (29%) of people with celiac disease, have what is called cryptogenic hypertransaminasemia.
  4. Diarrhea is, in fact, a common gastrointestinal symptom of celiac disease, but believe it or not, only 27% of people with symptomatic celiac disease experienced diarrhea.
  5. Bloating—20% of celiacs complained of bloating prior to diagnosis.
  6. Aphthous stomatitis—18% of people with symptomatic celiac disease had canker sores as one of their symptoms.
  7. Alternating bowel habit—15% of celiacs with symptoms have alternating bowel habit
  8. Constipation—13% of celiacs have constipation as a symptom.
  9. Gastroesophageal reflux disease—About 12% of people with celiac disease suffer from gastroesophageal reflux disease.
  10. Recurrent miscarriages—just over one in ten (12%) people with celiac disease experience recurrent miscarriages

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34 Responses:

 
jill
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
19 Jan 2015 5:54:24 AM PST
What is "Cryptogenic hypertransaminasemia"? I don't understand what I find on the web. Some kind of liver dysfunction?

 
Ann
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said this on
04 Mar 2015 8:59:15 AM PST
Before my diagnosis of celiac disease in 1996, my liver enzymes (noted in a blood test) had always been elevated, indicating inflammation of my liver. These "markers" were double to triple the "normal" values. Because I was a student and lived in different states getting my undergrad and graduate degrees, I really never followed up on it. The "hypertransaminasemia" refers to these blood tests which indicate a "swollen" liver. Medical personnel always asked me if "I did drugs, took a lot of NSAIDS, or drank a lot of alcohol." These things can cause the liver to swell. I did drink a little at the time, but that was it! It was the inflammation of my intestines that was also irritating my liver because of my undiagnosed celiac disease! I'm happy to say I am well and my blood work is fine now that I live the GF life!

 
Luann
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said this on
19 Jan 2015 8:39:17 AM PST
WOW! I had major problems with canker sores for 10 years prior to being diagnosed with celiac. As I look back, now for the last 20 years of being gluten free, I have RARELY had a canker sore! I have never heard there was a connection.

 
Helen
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said this on
19 Jan 2015 2:42:27 PM PST
I still get canker sores from oranges, grapefruit and tomatoes.

 
Shirley
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said this on
24 Jan 2015 9:22:29 AM PST
Me too. It has been such a blessing to be mostly canker free.

 
Wayne
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said this on
19 Jan 2015 8:58:48 AM PST
I, my daughter and granddaughter have some form of celiac.

 
Jane B.Haugen
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said this on
19 Jan 2015 10:07:55 AM PST
Any gluten by accident or choice goes to my joints, especially hips and knees. Add sugar (gmo) and it is early rigor mortis!

 
Dawna

said this on
22 Jan 2015 6:28:26 PM PST
I have that too, hate it when it happens, makes everything hurt.

 
Susan Copeland
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said this on
19 Jan 2015 10:14:51 AM PST
This is the best article I have ever read on non-classical celiac disease. Now if only all of the doctors would read it and take heed. I inherited the gene for celiac disease HLA DQ8. I had been eating gluten free for several years when the GI doctor wanted to biopsy. When he did, it came back negative so he concluded I did not have it even though all of my symptoms said I did. He finally did list celiac disease on my diagnosis based on what I told him. The symptoms described in this article are definitely what I have experienced including the anemia beginning at age 4 that did not respond to oral supplementation of iron or diet high in iron and the osteopenia first and then osteoporosis in my later years. Thank you for this fantastic article.

 
sandy
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said this on
19 Jan 2015 2:46:29 PM PST
Your biopsy was possibly negative because your were eating gluten free for years before the test resulting in a false negative.

 
Lois
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said this on
19 Jan 2015 4:23:47 PM PST
I understand if you are not consuming gluten for about 3 months before a biopsy that celiac won't show up.

 
dale
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said this on
19 Jan 2015 11:46:18 AM PST
Just adding this to see if anyone else has found this helpful. My daughter was sick passing out for almost two years with stomach pain from celiac. For some reason we don't know why, neither do the doctors but Zophen taken at the beginning of an attack makes the pain
tolerable and shorter duration. Anyone try this?

 
Sam
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said this on
19 Jan 2015 5:31:08 PM PST
I am exactly the same, the triggers for me are lactose and fatty/oily foods.

She may have IBS/other food intolerances IN ADDITION TO celiac disease. I would ask to have her referred to a dietician who specializes in the diagnosis of food intolerances by excluding potential triggers from her diet and bringing them back in phases to test for reactions. Likely suspects include lactose and other FODMAPs. Don't just put her on a low FODMAP diet though as this may well involve her excluding things for no good reason, which can have detrimental health effects.

 
Elizabeth
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said this on
21 Jan 2015 12:49:28 PM PST
Add hycosamine phazyme and Pepto Bismal to the Zofran and you can actually get up go to work and even eat. MMJ concentrates help tremendously as well.

 
laurie

said this on
27 Jan 2015 8:43:27 AM PST
Are they all prescription drugs other than the Pepto?

 
amy
Rating: ratingfullratingfullratingemptyratingemptyratingempty Unrated
said this on
19 Jan 2015 11:46:19 AM PST
What exactly is cryptogenic hypertransaminasemia?
I have googled it, and only get medical garbldey gook back, with no idea what it actually is. Mayo Clinic's web site does not recognize this phrase nor the word hypertransaminasemia.

 
Charlene
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said this on
19 Jan 2015 1:02:06 PM PST
I didn't see joint pain mentioned? I suffered with several of the classic symptoms and had DH. But I also had terrible pain in my hands and feet.... after a year of total gluten free living, the pain was gone. But according to my rheumatologist, pain is common.

 
Christina
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said this on
19 Jan 2015 1:18:43 PM PST
It nice to have more info on celiac disease. Sometimes you only get bits and pieces on the disease.

 
Ruth Grubbs
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said this on
19 Jan 2015 1:47:12 PM PST
If 52% of people with celiac disease have osteopenia or osteoporosis, I wonder how that compares to the general population?

 
Roger

said this on
19 Jan 2015 4:27:19 PM PST
Osteoporosis is common in most GI disease,because of malabsorption of calcium and Vitamin D.The thing that surprised me was miscarriage,which is strongly connected to folate and methylation problems,like MTHFR mutations.

 
Donna
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said this on
27 Jan 2015 11:15:21 PM PST
I have every symptom of celiac disease. But I had a GI breath test. And I was told I have (libo) I know I have had this all my life. I have always been anemic. And vitamin D deficit, diarrhea after every meal. And what surprized me was the miscarrages. I had 9 miscarrages. Went to every specialist everyone said they couldn't find any thing wrong with me. Now I know celiac disease is an autoimmune disease. When my body sees gluten it doesn't recognize it & pushes it out. I think it did the same thing with the sperm. Didn't recognize it, so rejected it. Took me 35 years to figure that one out.

 
Judith Hirshman
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said this on
26 Jan 2015 11:28:06 AM PST
The MTHFR mutation can be tested for and probably should be on a lot more people. Good points.

 
Julia
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said this on
19 Jan 2015 3:05:25 PM PST
Good article, but would have liked a definition / explantion of cryptogenic hyper-----.


 
admin
( Author)
said this on
20 Jan 2015 11:26:58 AM PST
Just click on that term above, and it will give you a definition.

 
Sharon
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said this on
19 Jan 2015 4:29:57 PM PST
For me it was joint pain, major joint pain. My husband and daughter had to help me get up each night and every step I took was painful. Every joint in my body ached. Since being diagnosed with celiac and eating gluten-free I rarely have joint pain. The difference is amazing!

 
elizabeth Pfeiffer
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said this on
19 Jan 2015 8:20:53 PM PST
If you think celiac is confusing, it is, this article was and is one of the best I have read. I am a full blown celiac, have been for nearly 40 years. I was diagnosed with every imaginable disease of the Colon, IBS, digestive problems, Lactose Intolerance which I have, for nearly 20 years. Finally an excellent Gastroenterology Associate, hospitalized me for several days. Many tests were run, including three blood tests, my food intake observed. my "output" observed, etc. Upon release I was told I was a celiac, I hadn't any idea what that was . I was given a strict Gluten Free diet to follow which I still do. Most people had no idea of what celiac or gluten-free meant, or was it contagious, was it cancer, or whatever. Even though I try to never knowingly eat anything w/gluten there are times I know I have. I have experienced most of the above symptoms listed above, sometimes I still have serious bouts of diarrhea. Thank you for this article I hope more get to read it.

 
Martina
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said this on
20 Jan 2015 12:22:32 AM PST
I hope this information will reach doctors and dentists! So many of us suffer for decades (and never regain the lost bone mass) just because we're not lucky enough to have GI issues early on. If only dentists had been aware of this in the 70's... The sad thing is that most dentists are not aware of the connection even today.

 
sc'Que?
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said this on
21 Jan 2015 2:07:24 AM PST
I'm sorry... but as Roger, Ruth, Susan Copeland and others have also (indirectly) pointed out, ISN'T ANEMIA A SYMPTOM OF MALABSORPTION?

And if doctors aren't viewing it that way... uh? Am I missing something?

 
Dawna

said this on
22 Jan 2015 6:32:38 PM PST
Anybody else get Kidney stones because of celiac, I was so mad when it started in me and then to find out it's common for people that have celiac didn't help.

 
Sharon
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said this on
16 Apr 2015 7:53:25 AM PST
I can check off all but one on this list of complaints that really are symptoms and disorders associated with celiac. Never had kidney stones but before my diagnosis had for several years a slightly elevated creatinine. I saw kidney specialist (history of kidney cancer in family); doctor thought it was due to my reliance on ibuprofen for so many years that I took for joint pain related to celiac. (Surprised joint issues are not on the list but perhaps this was a younger crew of celiac patients - and often even with younger and older patients with celiac there is no official RA or other arthritis diagnosis.) Magically (hah!) six months or so after my celiac diagnosis on a GF diet the creatinine returned to and has remained within the normal range.

Kidney stones are listed on the UChicago list of symptoms and disorders associated with celiac disease. See their site and search under Physicians for this symptom list. It is out there one the web on other sites as well.

Keep in mind this disease can affect some, a few, or just about all body systems, and it is a chameleon that can change its presentation - as the symptoms can move from one area to another over time. For example, when I was younger anemia and wrist tendinitis were big problems, now not as much. Right before my diagnosis blinding headaches started. Now even with a contamination, I hardly every have a headache. Since healed, the GI symptoms - some are very different while others are identical to before my diagnosis. A national reporting database of symptoms is critical to be developed so that the rates of these within ages and gender can be published.

After three years of good health, had a tough year with some contamination hits (gluten and seaweed-additives also cause me problems) - and interestingly enough for the first time ever at my last annual physical one of my liver enzymes was elevated. So I plan to send this piece along to my doctor. There is so much known and so much unknown about CD we have to help educate those who treat us - especially family physicians or internist who do not specialize in this but whom we see for our general care.

 
Lucille Cholerton
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said this on
24 Apr 2015 12:54:43 PM PST
My symptoms 25 years ago, before I went gluten free were sinusitis, migraine headaches, rheumatoid arthritis, constipation, and anemia. My 3 children, between them, suffered from post nasal drip, sinusitis, childhood irritability and aggressiveness, Sjogren's syndrome, vitiligo, tingling and numbness in fingers and toes, anaemia, constipation and speech stammering! I am really pleased to report that all these symptoms cleared up within 6 months on a strict gluten free diet.

 
Li
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said this on
12 May 2015 10:29:01 AM PST
This input from all of you has helped me so much!
More than any doctor.
I have experimented on my own, recently, and have found a little improvement. Now I am going to try the diet longer and keep track of what is working and what I have to eliminate.

Thank you!

 
Chris
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said this on
28 Jul 2015 7:16:52 PM PST
Great article and excellent feedback from everyone. I was diagnosed with celiac disease 4 months ago during an endoscopy. I suffered from gastro problems for probably 20 years prior to this - alternating constipation and diarrhea, excessive bloating and gas. I take thyroid hormone for thyroid problems and have arthritis and osteoporosis. I know now that all of these health problems are as a result of celiac disease. I am disappointed that my doctor had never even suggested that this could be the reason for all of my problems. I have been gluten free for the past 4 months but the gluten free diet has not improved any of my symptoms. I read an article recently which indicated that for patients who are older and also if the disease has been long standing, it could take up to 2 years for any improvement. The biggest problem I find is whether all the ingredients are listed on food products. None of the food companies I have contacted have been able to assure me that no cross-contamination has occurred in the preparation of their food products. I will be tested again in a couple of months to see what progress I am making. If my numbers don't go down, I will be very upset.

Thanks.

 
Jeff
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said this on
29 Aug 2015 4:35:51 PM PST
Major FATIGUE. Funny how that is when you malabsorb. Rather interesting that one was omitted, although of course docs all say it is "NONSPECIFIC". In my case, it was specific to HLA-DQ8. JFK used to mention it in his speeches too:"We must not be fatigued." Some say that was because of the fatigue that went along with his celiac. I agree.




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