CSA Library Series is a collection of articles that pertain to celiac disease and dermatitis herpetiformis. Most of these articles have appeared in CSA’s quarterly newsletter, Lifeline, which all CSA members receive. Historic articles included in these resources may or may not include updated notes. Updated information indicated in red type. Articles represent the work of the author.

Celiac Disease and Insulin-Dependent Diabetes Mellitus

Jean Guest, RD, CNSD, Doctoral Student, University of Nebraska-Lincoln
[The following article is an abridged version of a journal publication which appeared in Diabetes Forecast, August 1996, Vol 40, No 2]
Lifeline, Summer 1997, Vol XV, No 3, pp 12-13

You have the flu. Your doctor says you will take longer to recover because of your insulin-dependent diabetes mellitus (IDDM) is under poor control. He wants you to continue taking the iron supplement he prescribed for your anemia. You do, but you still feel tired and dragged out. The diarrhea you have had on and off for months isn't getting better. Your are making yourself eat more, but you are still losing weight. On top of that he tells you that the X-ray of your arm shows your bones are in the early stages of osteoporosis. You think this can't be, "I'm only 35."

Sound like bad luck? Maybe, maybe not. About 5% of people with IDDM have celiac disease (CD). Also known as sprue, non-tropical sprue, or gluten sensitive enteropathy. CD occurs when the body's immune system reacts to gliadin, a protein fraction of gluten. Gluten is found in wheat, but also in many other foods.

Celiac Disease - This reaction to gliadin/gluten occurs in the small bowel. Symptoms are present from the beginning, but may be ignored or attributed to other causes. Usually the first notice is taken when problems with food digestion become apparent.

In the early stages of untreated CD the small bowel becomes irritated and damaged, but remains functional. The onset of CD can occur after a viral illness so the symptoms are similar to having a flu that just seems to hang on. Over time, however, the repeated exposure to gluten/gliadin worsens the mucosal damage. Eventually irritation becomes inflammation, the villi flatten (appear to have been shaved off), and mild malabsorption becomes more severe. At this stage symptoms cannot be ignored, but unless a correct diagnosis is made the problem continues. It is a vicious cycle that can only be broken by starting treatment with a gluten/gliadin-free diet. Until this is done an individual with untreated CD can become very malnourished, and literally starve to death.

How long does if take from first symptoms of CD to severe small bowel damage causing malabsorption and malnutrition? No one really knows. The progression if the disease is individual. Some older people with CD have reported experiencing symptoms during their childhood or adolescence, and went 30 or 40 years before getting sicker. On the other hand infants and young children usually become quite sick over a matter of months. The range of experience is varied. Age at onset, genetic predisposition, and severity of symptoms along with other health problems are factors in how far and how fast CD progresses. Not everyone has all the symptoms. Symptoms can come and go. So physical decline is not a straight downhill course, but rather a roller coaster ride of ups and downs. This makes for an emotionally difficult trip as well.

Diarrhea - The adage "use it or lose it" applies here. If the body cannot absorb nutrients due to villi and mucosal damage, it cannot use them. They are then lost through the stool. Diarrhea may be chronic or intermittent. It can be watery and runny, or bulky and foul smelling. Sometimes fat droplets can even be seen in the stool. If mucosal damage is severe blood may be in the stool, or it may be present microscopically. An important note to make here is that although diarrhea is a common symptom not everyone with CD experiences it. And, some may have constipation.

Anorexia - "An" means no, and "Orexis" means appetite, so no appetite. The body has a built in self-preservation mode which kicks in whenever there is a problem. In this case, the body cannot digest food, so it sends out a message to not eat. This is not to be confused with a common problem in our society today where individuals for varying reasons purposely starve themselves called anorexia nervosa.

Weight loss - Malabsorption results not only in loss of nutrients, but also calories. The principle of weight loss is very simple. When energy needs exceed calorie intake weight is lost. This is a common symptom in adults.

Failure to Thrive - Failure to gain weight and/or grow taller. These are important symptoms in infants and children. Lack of weight gain or actual weight loss occurs in children for the same reason it does in adults (inadequate calorie intake). Lack of height growth occurs when malnutrition is present, but there may be other reasons.

Weight gain and height growth improve as malnutrition resolves with treatment of CD.

Muscle Wasting - Occurs after energy stored in the body (as fat) has been depleted. When more energy is needed muscle tissue (protein stores) is broken down and used. Once this supply is exhausted the body is literally left with skin and bones. There is a visible change in the body when this happens.

Abdominal Distention - Fluid retention occurs when circulating levels of protein (albumin) in the blood become too low. Fluid leaks out of the blood vessels and capillaries into the abdominal cavity. This happens as a result of malnutrition. It happens gradually as malnutrition worsens. Once treatment starts it improves right along with improved nutrition.

Weakness - Lessening of strength when energy needs are not met, and/or as muscle mass decreases.

Muscle Cramping - May occur from electrolyte imbalance, or nutrient deficiency such as low blood levels of potassium, calcium or magnesium.

Rash or Eczema - General terms for all types of skin irritations. A special type called Dermatitis Herpetiformis is seen in CD. It is another way the body reacts to gliadin/gluten. A dermatologist can tell it from other types. Occasionally, this will be the only symptom. Vitamin A or Zinc deficiencies can also cause rashes or sometimes blood tests are necessary.

Irritability or Personality Changes - Can occur when malabsorption results in chronic diarrhea, loss of energy, appetite changes, abdominal discomfort, and overall feeling that something is wrong, but you don't know what. Frustration can also play into this when your doctor is unable to diagnose the problem so you are told that your illness is all in your head. Feelings of well-being can be restored when health is restored.

Malnutrition - Carbohydrate, protein, fat, vitamin, mineral, trace element, and fluid imbalances or deficiencies resulting from poor intake, anorexia malabsorption, or diarrhea.

Symptoms Associated with IDDM - Adults with IDDM and undiagnosed CD have been reported to experience problems with hypoglycemia. Children may by hypo- or hyperglycemic. Blood glucose regulation depends on a balance of food intake, insulin, and energy expenditure. In the early stages of CD the body can draw on stored nutrients to provide energy of there is a short fall due to decreased food intake or malabsorption. Blood glucose levels remain steady. Malabsorption gets worse as mucosal damage progresses. The more the body calls upon energy (nutrients) reserves to maintain blood glucose levels the quicker the energy (nutrients) reserves are used up. Eventually there is more insulin available than energy to use it, and hypoglycemia becomes a problem. This imbalance between too much insulin, and not enough dietary energy gets better when CD is treated because the malabsorption gets better. Another symptom of untreated CD is a problem with prolonged recovery from other illnesses. Young children may also be sicker, and take longer to recover from normal childhood illnesses. Hypothyroidism and inflammatory bowel disease are autoimmune diseases associated with CD. Symptoms of these diseases can be seen in individuals with IDDM and undiagnosed CD.

Diagnosis of CD should be based on the small bowel biopsy, response to diet therapy, and blood levels of immunoglobulin antibodies. These antibodies include antigliadin (measures response to ingested gluten), and anti-reticulin and anti-endomysial (measures response of intestinal tissue). Use of the diet challenge or antibody blood levels without small bowel biopsy for diagnostic purposes is not recommended. There are conditions and diseases other than CD which respond favorably to a gluten-free diet. The blood tests are valuable for screening and monitoring purposes. Once a diagnosis is made, the gluten-free diet results in healing of the small bowel. The level of antibodies should decrease significantly in the blood, and the villi in the small bowel should return to their normal size, shape and function.

Once an accurate diagnosis of CD is made a gluten-free diet must be started. It is possible to use a gluten-free diet to meet current recommendations for adults with IDDM. 10-20% of calories should be from protein, 50-60% as carbohydrate, and 20-30% as fat with only 10% of total calories in the form of saturated fat (infants and very young children need more fat for growth). Gluten is the ingredient in flour that gives foods elasticity and makes the texture smooth. When gluten is removed foods tend to be flat and heavier. This takes some adjustment, but is an easy trade-off to feeling better. Gluten-free means just that. Even very small amounts of gluten can cause a reaction. Wheat, oats, barley and rye make up the majority of flours used in the diets of the United States and important in the IDDM diet which emphasizes use of complex carbohydrates and fiber. This makes the incorporation of these two diets more of a challenge. If you use an exchange system gluten-free products can be used the same as the gluten-containing products as long as you adjust for any calorie difference.

Begin the new diet by identifying all of the foods in your kitchen and in your diet (if you eat out) that contain gluten. Stop eating them. Substitute gluten-free products made to replace bread, crackers, pasta, pizza crust, cereals, pancakes/waffles are some examples. Most of these items do not contain sugar, but you need to check the labels. If you do not "cook from scratch" you may want to consider learning. This is the best way to assure that the foods you eat are safe. Breadmakers make it much easier to bake bread with the allowed grains. However, gluten-free flours act differently so you cannot just substitute them in regular recipes. Remember that you need to substitute artificial sweeteners for sugar in recipes. Sometimes you need to adjust the amounts of these recipes to suit your taste. If you are not an experienced cook or baker this can be frustrating in the beginning. You may find help by networking with local support groups to get tips, and keep practicing and adjusting.

You will need to keep all labels of any food items that you intend to consume. It takes a lot of time to shop when you first start reading labels at the grocery stores. Reports of taking up to 1 1/2 - 2 hours to do the weekly shopping are not uncommon in the beginning. After awhile though the time decreases when you learn which brands, products, etc. you can use. Even though you may read labels very carefully you may sometimes find that you have been exposed to gluten without your knowledge. These hidden sources of gluten happen when a label tells you the product contains vinegar or soy sauce, but does not tell you the source of the grain used to make it. Another example is a commonly found ingredient on labels - hydrolyzed or textured vegetable protein (HVP) - unless the source of the protein is noted you do not where it came from - corn or soybean which is ok or from wheat which is not. Another hidden source is on wrappers or in packaging. Ingredient(s) used as part of packaging need not be listed. A rule many individuals with CD use is if you are not sure it is gluten-free than do not eat it. Hidden sources may come from the preparation of the food as well as from ingredients. Many individuals with CD eat out because of work or lifestyle demands. Food prepared on grills or in fryers with breaded (usually contains wheat flour) items. French Fries prepared in the same fryer as breaded shrimp is an example. When eating out you should tell your waiter of your special dietary needs just as when you fly you should let the airlines know ahead of time to order a special meal. Even though you do this there is no guarantee, but most restaurants and airlines try to please the customer. Relying on these food items is helpful.

Newly-diagnosed individuals who have experienced weight loss or malnutrition may need to eat more calories than usual, and may need some vitamin and mineral supplements. Insulin requirements increase as absorption of food and nutrients improves as the bowel heals. This may be noticed right after starting the diet or it may weeks (usually within 1-2 months).

Diagnosis - Referral to a gastroenterologist for adults and a pediatric gastroenterologist for children is recommended if an individual has one or more of the symptoms listed above, and has not gotten better despite treatment. Gastroenterologists are specialists in diagnosing and treating diseases of the bowel. A small bowel biopsy should only be performed by a specialist trained to do them. They are also experts in assessing and monitoring blood tests which can reveal the extent of nutrition or vitamin/mineral supplementation needed. Other types of specialists such as dermatologists can sometimes recognize CD from the skin rash (dermatitis herpetiformis). However, they are not trained to treat the gastrointestinal symptoms of CD. For diet information and counseling you should be referred to a registered dietitian.