Part 1 of 12 Part Series: Gastrointestinal Symptoms in Undiagnosed Celiac Disease

This is the first in a series of posts discussing the variety of symptoms that can be caused by undiagnosed Celiac Disease (CD). While many gastrointestinal (GI) symptoms are well recognized by the medical community, there are many extraintestinal symptoms that are not as widely recognized. The illusive nature of this disease may lead some to provide an incomplete diagnosis by only diagnosing the symptoms, such as anemia, gastric reflux, lactose intolerance, infertility, or ataxia (2,3,24). As well, CD is often misdiagnosed as Irritable Bowel Syndrome (11). The list of possible incomplete diagnoses, misdiagnoses, and symptoms of CD is too extensive to include in just one post, which has led to the creation of this 12 part series. In this post, I’ll describe the various GI symptoms in undiagnosed CD.

The gastrointestinal (GI) system is essentially a long muscular tube that extends from the mouth to the rectum. It digests and absorbs nutrients, excretes dead intestinal cells, food residues, water, liver and intestinal secretions, and symbiotic bacteria. The salivary glands, stomach, pancreas, liver, and gallbladder aid the process of digestion and absorption. The enteric nervous system located within the intestinal wall controls bowel motility which propels nutrients through the intestinal tube. The enteric nervous system also stimulates the intestine and associated organs to secrete substances necessary for digestion and absorption (1).

The GI system is also host to the majority of lymphocytes in the body, which means it plays a significant role in immune mediated responses to viruses, bacteria, and parasites. Unfortunately, this also means that GI epithelium, mucosa, villi, and associated organs are particularly susceptible to damage from autoimmune reactions (2). In CD, this can lead to a variety of symptoms.

Disclaimer

Diarrhea

Many individuals with undiagnosed CD will have no bowel symptoms (3,4). In others, the gastrointestinal tract’s transit time is altered, resulting in diarrhea. Loose watery stool can be continuous with more than 10 stools per day, or episodic with periods of normal stool occurring in between the episodes of diarrhea,  lasting for a few hours, days, or months. Diarrhea usually is more prevalent at night and in the morning. Weight loss may or may not occur, and is dependent on the amount of the intestine that is damaged (11). I didn’t have any diarrhea until after I gave birth to my first child at age 32, then it was episodic in nature and was usually worse at night and in the morning. My daughter and mother, both with CD, didn’t have any diarrhea.

There are many influencing factors that promote the development of diarrhea. In CD, an autoimmune reaction to gluten in the proximal small intestine ignites a cross reaction with the intestinal mucosa, resulting in a damaged flattened mucosal surface (villous flattening). Since the intestinal villi is responsible for absorbing nutrients, malabsorption issues occur, and this contributes to the production of diarrhea. The intestinal nutrient and fluid load exceeds the absorptive capacity of the affected small intestine (11).

Absorption can be compromised in CD by impaired intestinal endocrine cell secretion of secretin and cholecystokinin (CCK). Since S cells in the duodenum release secretin and I cells in the duodenum release CCK, secretion can be impaired with the CD damage that occurs in this region. These hormones are secreted in response to food, and stimulate the pancreas and gallbladder to release substances to aid digestion. Therefore, impaired secretion of these hormones decreases pancreatic (enzymes and bicarbonate) and gallbladder (bile) secretions into the lumen of the intestine. This hinders the digestive process since pancreatic enzymes and bile help to digest carbohydrates, protein, and fat (1,5,6).  The altered secretion of other intestinal peptides may also add to decreased digestion. Fat malabsorption, evident in steatorrhea, can increase the osmotic load, and the fat along with unabsorbed carbohydrates, electrolytes, protein, and other nutrients can increase stool volume in the colon(large intestine (8).  The unabsorbed fat can also contribute to the proliferation of bacteria that feeds on fatty acids, and if damage occurs in the ileum, then malabsorbed bile salt may also have a cathartic effect (7). Thus, the maladaptive state of the bowel can lead to malabsorption with resulting infections that add to the bulk of diarrhea seen in CD.

Unfortunately, many people with undiagnosed CD are misdiagnosed with Irritable Bowel Syndrome (11). I was misdiagnosed for 4 years when I had Celiac symptoms that would flare up with diarrhea, bloating, and flatulence that would last for awhile then would lessen or disappear for a few months. I saw a Gastroenterologist, was checked for parasites and bacterial infections, had a scope of my colon, and had some bloodwork completed. All of the results were normal and I was told I had Irritable Bowel Syndrome. An upper endoscopy of the small intestine with biopsies would have revealed the true source of my symptoms.

Steatorrhea

Fatty stool with a foul odour, called steatorrhea, may be seen if the bowel damage progresses past the proximal small intestine. The color of this stool is greyish or a light tan with a greasy appearance.  Stools floating in the toilet bowl can result from the high content of malabsorbed fat in the stool (11).  I didn’t notice any steatorrhea until I was quite ill with extensive weight loss, despite the fact that I was consuming copious amounts of food. My mother and daughter didn’t have this symptom.

Constipation

Constipation can occur from compensatory ileal hypertrophy which occurs when the ileum compensates for  a chronically inflamed jejunum due to longstanding undiagnosed Celiac disease. An autoregulatory mechanism or neurogenic influence in this adaptive response may be responsible for the bowel’s ability to compensate. This functional change may alter the motility of the bowel, resulting in constipation (12). Reduced intestinal motility might also occur due to other intestinal neurocrine, hormonal endocrine, paracrine, or other immunological factors (1,9,10,)

Periods of constipation can follow periods of diarrhea due to the resulting dehydration. I had constipation that would occur after severe episodes of diarrhea. My daughter and mother didn’t have any problems with constipation.

Abdominal Discomfort, Bloating, and Flatulence

Undigested nutrients, resulting from poor digestion, can ferment in the bowel, resulting in proliferation of bacteria and excess gas production. Copious malodorous flatus can make the abdomen distended, tympanitic, and uncomfortable.  Increased stomach grumbling, borborygmus, can result from excess gas in the bowels (11). I intermittently experienced all of these symptoms and often looked like I was 5-6 months pregnant after a meal. My mother and daughter didn’t have any of these symptoms.

Nausea and Vomiting

Some undiagnosed Celiacs experience nausea and vomiting, although this is more common in children than adults (13). The precise reason for this type of response is unclear, but it may be that chemoreceptor trigger zone stimulation, in the postrema of the medulla area of the brain, stimulation of the nucleus tractus solitarius (also in the brain), and stimulation of the brain stem vomiting center may occur in response to gluten and related pralamine consumption (1).

My daughter and I often experienced nausea. My daughter didn’t have any vomiting prior to her Celiac diagnosis. However, she did vomit a few times, post diagnosis, after she ate a small wheat cookie one day at school. She was much younger then and couldn’t resist the temptation to consume a cookie offered by a friend. Since that experience, she has consistently resisted temptation. My mom didn’t have any of these symptoms.

Heartburn, Burping, and Feelings of Fullness

Indigestion, burping, belching, and feelings of fullness (dyspepsia) can result from the immunological and gastrointestinal effects of undiagnosed Celiac Disease (4). During flare ups, I would burp after meals, feel uncomfortably full after a meal with a high gluten content, such as pasta or bread,  and would experience indigestion with acid reflux post meals. I lived fully stocked with Tums and Maalox.  My daughter would comment frequently after meals that she ate too much and felt very full. My mom didn’t have these symptoms.

In one study, the prevalence of esophageal symptoms was 45.5% in adult patients with Celiac Disease before a gluten-free diet was initiated. The esophageal symptoms along with low esophageal sphincter pressure were especially prevalent in CD patients with steatorrhea. Esophageal symptoms were relieved in all subjects after they started a gluten-free diet (26).

Dr. Scot Lewey, identified in an article that lower esophageal sphincter pressure, poor stomach emptying, and impaired stomach contractions in CD may contribute the the gastric and esophageal symptoms. He and other gastroenterologists have found that a gluten-free diet relieves these symptoms in individuals with CD and many without CD. He suggests that doctors should consider screening those suffering from gastric and esophageal problems for CD and perhaps try a gluten-free diet as a alternative to drugs that have potentially damaging side effects (27).

Oral Changes

Oral ulcers can result from vitamin deficiency or oral celiac disease (14). Aphthous stomatitis (canker sores) affects many people with CD and may be the only symptom (11). My mother and I both had difficulties with oral ulcers for most of our lives. My daughter didn’t have this problem.

Decreased tongue papillation with glossitis (tongue inflammation), angular cheilosis (scales and fissures on lips and in mouth), and dental enamel defects are also commonly seen (15). Dental Enamel Defects can result from demineralization that can occur during the development of tooth buds in children with undiagnosed CD and can lead to frequent dental caries (11). My mother, daughter, and I didn’t have these problems.

A link has been found between Sjögren’s Syndrome and CD. Orally, Sjörgren’s Syndrome can cause a dry mouth, resulting from inflammation in the salivary glands leading to decreased saliva production. Many other symptoms can occur and this will be discussed under associated diseases. A study found that the incidence of CD in Sjögren’s disease was higher than in the healthy control group and recommends screening of all Sjörgren’s patients for CD (29).

Recurrent Intestinal Bacterial and Candidiasis (yeast) Infections

Symptoms of  bacterial infections and candidiasis are bloating, flatulence, abdominal cramps, and diarrhea (1,28). Candida infection of the tongue and oral areas can occur, white patches and raw areas may be present in the mouth. As previously mentioned, the unabsorbed fat in the large intestine can be one contributing factor to the proliferation of bacteria in the intestines (7). In addition, the overstressed intestinal immune system, maladaptive intestinal environment, and damaged mucosa may predispose a individual with undiagnosed CD to develop bacterial bowel infections and have difficulties with overgrowth of candidiasis (16,28).

I didn’t have any difficulties with bowel infections or candidiasis when I was undiagnosed. Samples were sent to check for parasites and bacteria and the results were negative.  Perhaps that was due to the fact that I was taking digestive enzymes and probiotics during the 4 years when I my digestive symptoms were most prevalent. Probiotics appear to reduce the proliferation of  some pathogenic bacteria such as campylobacter jejuni, salmonella typhimurium, and clostridium difficile (C-diff) and may be useful to help treat other bowel infections, such as candidiasis (2). There are still some mysteries regarding the immunology and effectiveness of probiotics. Further research will help to solve these mysteries, for now I suggest consulting your MD about taking probiotics for any intestinal infections along with prescribed medications.

Lactose Intolerance

Lactose is found in dairy products. It is a disaccharide and requires lactase-phlorizin hydrolase (enzyme) produced within the intestines to digest it. Loss of this brush border enzyme results in hypolactasia (low lactase production), and can occur from the intestinal epithelial damage evident in CD. Once the lactose passes undigested into the colon, it is broken down by commensal bacteria. This process produces CO2 and hydrogen which cause abdominal discomfort, bloating, flatulence, and possibly diarrhea. This may be temporary, since lactase production may resume once the bowel has healed (1,24). I read about this when I was diagnosed and avoided dairy or took a lactase supplement with the small amounts I did consume for a few months. Once I reintroduced it, I found that I could tolerate it without any lactose intolerance symptoms.

Liver Disease

The liver is an extremely important organ. Metabolism of endogenous hormones, synthesis of proteins, storing and releasing glucose as needed, acting as a glucose buffer, and metabolism of carbohydrates and fats are some of its functions. It also helps to detoxify the blood of colonic bacteria, other particulates, drugs, xenbiotics, and ammonia. Liver disease can be an associated symptom of Celiac disease. CD prevalence in individuals with elevated transaminase levels (of unknown cause) is 1.5-9%, in individuals with autoimmune hepatitis 2.9-6.4%, and in those with primary biliary cirrhosis have a prevalence of CD up to 6%. Patients with these conditions should be considered for CD testing. Non-alcoholic fatty liver disease and primary sclerosing cholangitis have a lower incidence of CD (17,18). If you have any of these liver problems, consider talking to your MD about CD screening. My liver enzymes were elevated when I was very ill with symptoms, but returned to normal with a gluten-free diet.

Gallbladder Problems

Bile is made in the liver, and the gallbladder is like a storage unit, where bile is stored in between meals. Bile digests fat. In patients with suspected typical gallbladder disease, a biliary scintography (HIDA scan) with injected cholecystokinin (hormone) is used to check for blockages, disease, or problems emptying  bile contents. The amount the gallbladder empties with this hormonal stimulation is called the ejection fraction. Typically, a low ejection fraction and return of gallbladder discomfort during the procedure are criteria used to diagnose gallbladder disease. Prior to this an ultrasound would have ruled out the possibility of gallstones (19).

Dr. Scot Lewey identified and confirmed, with a review of the literature, that individuals with CD may have an unusual elevated ejection fraction, which could lead medical staff to mistakenly rule out a diseased gallbladder. As well, Dr. Lewey recommends that all patients with a high ejection fraction should be screened for CD since this could be a symptom of CD (19,20,21,22,23).

Pancreatic Problems

The pancreas has exocrine and endocrine functions. The exocrine pancreas releases 4 types of digestive enzymes called proteases, amylolytic enzymes, lipases, nucleases. A “monitor peptide” is also produced, which monitors the digestive needs of the intestine and increases the secretory capacity of the pancreas as needed. Colipase and trypsinare inhibiters are also produced and function to modulate the pancreatic secretions. (1,24). Some untreated Celiac children have tryptic and/or lipolytic activity that was below the normal values. Fecal chymotrypsin levels are found to be lower in untreated Celiacs. Combined, this demonstrated that individuals with undiagnosed CD suffer from pancreatic insufficiency (25). I find this interesting, because when I was undiagnosed I found that consuming digestive enzymes appeared to moderately improve my bowel symptoms.

The endocrine pancreas manufactures hormones that help keep the body in a state of homeostasis. The islets of Langerhans located throughout the pancreas have four types of islet cells that produce 4 types of secretory granules called insulin, glucagon, somatostatin, and pancreatic polypeptide. Type 1 diabetes develops when the pancreas fails to produce insulin  and type 2 diabetes occurs when the body is unable to effectively utilize the insulin that is produced. There is an association of type 1 diabetes with CD (4,24).

Prevalence of Celiac Disease in type 1 diabetes is 3 to 8% in children and 2-5% in adults. It is recommended that this group of people be considered for CD testing and duodenal biopsies should be done on patients presenting for upper endoscopy(4,19). I think all diabetic type 1 patients should be tested considering there are CD people with no symptoms. The American Diabetes Association advises that all children with type 1 diabetes be screened for CD shortly after diagnosis and then periodically after (30).

Do You Have Any Of The Above Symptoms?

The presence of any of the symptoms discussed in the posts indicates that you should talk to your MD about tests for CD and tests to rule out other possible causes of your symptoms. Testing for CD is important because undiagnosed CD increases the risk of developing other autoimmune diseases(1), intestinal cancers (2) allergies, complications from malabsorption issues, possible decreased immune response to other illnesses (3), and many other health complications that will be discussed in the posts about CD symptoms. It is my hope that if symptomatic, you can print out this list of symptoms complete with medical references to take with you to the MD when you request a CD test. Highlight or underline the sections that apply to your symptoms. I’ll be posting a simplified summary and checklist in the 12th post.

It is possible to have a gluten sensitivity even if you test negative for CD. It is also possible that your symptoms could be due to a food allergy/sensitivity, parasites, bacterial or candidiasis infection, lactose intolerance, or other disease process.  Allergy testing, and an elimination diet may help you to identify the offending food (1,28,31)). Other tests can help rule out infections, lactose intolerance, or other diseases and cancer. I encourage everyone to have their symptoms thoroughly investigated by their MD and specialists before implementing a therapeutic diet. A consult with a Registered Dietitian can help to ensure you are receiving all required nutrients. Keep your MD informed about any dietary changes you are making and also the results. Of course, I would love to hear your story as well.

Diagnosed Celiacs and people with food allergies/sensitivities, please comment about your symptoms  and experiences at the end of each post. This will help other readers to see how the sometimes illusive symptoms of CD or food sensitivities can affect each of us.  We are all unique!

I recommend waiting until CD testing is complete before initiating a gluten-free diet because it may create a false negative. Discuss this with your MD or specialist. After the 12 post series is complete, I’ll provide a post on diagnostic tests.

Next Post: Anemia Symptoms In Undiagnosed Celiac Disease.

References

1. Barrett KE. Gastrointestinal Physiology. Lange Medical Books/McGraw-Hill 2006.

2. Mahida YR. Immunological Aspects of Gastroenterology. Kluwer Academic Publishers 2001.

3. Hadjivassilou M and Grünwald RA, Davies-Jones GAB. Gluten Sensitivity As a Neurological Illness. Journal of Neurology, Neurosurgery, and Psychiatry 2002;72:560-563

4. David A Nelson, JR., MD., MS., University of Arkanas for Medical Sciences, Little Rock, Arkansas. Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think. American Family Physician, December 15, 2002.

5. Rhodes RA, Tai HH, Chey WY. Impairment of Secretin Release in Celiac Sprue. Am J Dig Dis 23:833, 1978.

6.Maton PN, Seldon AC, Fitzpatrick ML, et al.Defective Gallbladder Emptying And Cholecystokinin Release In Celiac Disease. Reversal by Gluten-free Diet. Gastroenterology 88:391, 1985.

7. Vuoristo M, MiettinenTA. The Role Of Fat And Bile Acid Malabsorption in Diarrhoea Of Coeliac Disease. Scand J Gastroenterol 22:289, 1987.

8. Egan-Mitchell Bridget, McNicholl Brian. Constipation in Childhood Coeliac Disease. Archives of Disease in Childhood. 1972;47,238

9. Tursi, Antonio MD. Gastrointestinal Motility Disturbances in Celiac Disease. Journal of Clinical Gastroenterology: September 2004 – Volume 38 – Issue 8 – pp 642-645

10. Gabrio Bassotti, Giuseppe Castellucci, Cesare Betti, Carla Fusaro, Maria Lucia Cavalletti, Alberto Bertotto, Fabrizio Spinozzi, Antonio Morelli and Maria Antonietta Pelli. Abnormal gastrointestinal motility in patients with celiac sprue.  Journal Digestive Diseases and Sciences. Volume39, Number 9/September 1994.

11. Feldman Mark, MD, Friedman Lawrence S, MD, Sleisenger, Marvin H, MD, Gastrointestinal and Liver Disease Pathophysiology/Diagnosis/Management 7th Edition, Volume11, 2002,Saunders

12. Touloukian RJ, and Spencer RP, Ileal blood flow preceding compensatory intestinal hypertrophy. Annals of Surgery. vol. 175(3);Mar 1972.

13. Devlin Shane MD, Andrews Christopher MD, beck Paul MD, Celiac Disease. CME Update May 2004.

14. Pratesi R, Gandolfi L, Friedman H, Farage L, de Castro CA, Catassi C. Serum IgA Antibodies From Patients With Coeliac Disease React Strongly  With Human Brain Blood Vessel Structures. Scand J Gastroenterol 1998;33:817-21.

15. Aine L, Maki M, Collin P, et al. Dental Enamel Defects In Celiac Disease. J Oral Pathol Med 19:241, 1990.

16.Tursi A,Brandimarte G, Giorgetti G. High Prevalence of Small Intestinal Bacterial Overgrowth in Celiac Patients With Persistance of Gastrointestinal Symptoms After Gluten Withdrawl. Am J Gastroenterol 98(4):839-43

17. Kagnoff MF. AGA Institute Medical Position Statement on the Diagnosis and Management of CD. Gastroenterology, Official Journal of the American Gastroenterological Association (AGA). November 2006.

18. Devlin Shane MD, Andrews Christopher MD, beck Paul MD, Celiac Disease. CME Update May 2004.

19. Lewey  Scot, Gallbladder Problems In Celiac Disease May Be Missed By Doctors Because of Normal Tests. http://www.ezinearticles.com

20. From Dr. Lewey’s article: Fraquelli M, Colli A, Colucci A, Bardella MT,Trovato C, Pometta R, Pagliarulo M, Conte D. Accuracy of Ultrasonography in Predicting Celiac Disease. Arch Intern Med. 2004;164(2):169-74.

21. From Dr. Lewey’s article: Marciani L, Coleman NS, Dunlop SP, Singh G, Marsden CA, Holmes GK, Spiller RC, Gowland PA. Gallbladder Contraction, Gastric Emptying And Antral Motility: Single Visit Assessment of Upper GI Function In Untreated celiac Disease Using Echo Planar MRI. J Magn Reson Imaging. 2005;22(5):634-8.

22. From Dr. Lewey’s article: Deprez P, Sempoux C, Van Beers BE, Jouret  A, Robert A, Rahier J, Geubel A, Pauwels S, Mainguet P. Persistant Decreased Plasma Cholecystokinin levels in Celiac patients Under Gluten Free Diet: Respective Roles of Histological Changes and Nutrient Hydrolysis.  Regul Pept. 2002;110(1):55-63.

23. From Dr. Lewey’s article: Rehfeld JF. Clinical Endocrinology and Metabolism. Cholecystokinin. Best Prac Res Clin Endocrinol Metab. 2004;18(4):569-86.

24. Gibney MJ, Marinos E, Olle L, Dowsett J. Clinical Nutrition. Blackwell Publishing 2005.

25.Carroccio A, Iacono G, Montalto G, Cavataio F, Marco C Di, Balsamo V, Notarbartolo A. Exocrine Pancreatic Function in Children With Coeliac Disease Before and After a Gluten-free Diet. Gut. Vol 32(7): 796-799, Jul 1991.

26. Iovino Paola, Ciacci Carolina, Sabbatini Francesco, Mota Acioli Dinete, D’Argenio Giuseppe, Mazzacca Gabriele. Esophageal Impairment In Adult Celiac Disease With steatorrhea. The American journal of Gastroenterology.(1998)93,1243-1249.

27. Lewey Scot, Heartburn and Celiac Disease: Gluten Sensitivity as a Reversible Cause of Gastroesophageal Reflux. http://www.ezinearticles.com

28. Bateson-Koch Carolee. How to Permanently Heal Your Allergic Condition Permanently and Naturally. Alive Books 1994.

29. Szodoray P, Barta Z, Lakos, Szakall S, Zeher M. Coeliac Disease In Sjogren’s Syndrome-A Study of 111 Hungarian Patients. Rheumatol Int 2004 Sep;24(5):278-82. Epub 2003 Sep 17.

30. Matz Jenilee. The Link Between Type 1 Diabetes and Celiac Disease. http:www.myoptumhealth.com

31. Gislason SJ. Core Diet For Kids. Stephan J Gislason & Environmed Research Inc. 1989.

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