You've been to your family doctor so often you both have your litany of symptoms memorized. You've made the round of specialists. Still, you can't find what ails you.
Maybe the cause of all your problems is lurking in your kitchen -- in your breadbox, in your pasta cabinet, and on your cookie shelf.
Foods made from wheat and certain other grains contain a protein called gluten. If you have a condition called celiac disease, every time you eat something with gluten, a reaction damages the lining of your small intestine. Nutrients aren't absorbed properly, and this leads to a host of problems.
Many people with celiac disease (also called celiac sprue, nontropical sprue, or gluten-sensitive enteropathy) go a long time without being diagnosed.
There are many possible symptoms. They may start in childhood or adulthood. They may come and go.
A classic symptom is diarrhea, but not everyone has this. Stools may be foul-smelling and bulky, and they may float.
Other signs and symptoms
- loss of appetite
- weight loss
- in children, failure to grow
- irritability (sometimes the only symptom in children)
- skin rash
- and for people with diabetes, unexplained low blood sugar (hypoglycemia)
There seems to be a link between type 1 diabetes and celiac disease. About 1 in 20 people with type 1 diabetes has celiac disease. Even in the general population, including people with type 2 diabetes, the rate could be as high as 1 in 250.
If you think you might have celiac disease, discuss the possibility with your doctor. Blood tests and a biopsy of your small intestine -- the gold standard for diagnosing celiac disease -- can reveal whether you have the disease.
Celiac disease is not the only cause of chronic diarrhea. Other possibilities:
- Lactose intolerance
- Gastroparesis, a complication of diabetes
- Irritable bowel syndrome
- Crohn's disease
- Viral infection
- Parasitic infection
Maybe you have symptoms that aren't typical, or a doctor who isn't familiar with celiac disease, or you can't get a referral to a specialist. If you feel you've done all you can with your health care professionals and you want to get more evidence to present to them, you might consider going gluten-free.
It's not going to be easy. Gluten is found in wheat, rye, barley, possibly oats, and some other grains. That means all the common flours found in mainstream breads, cookies, crackers, and pasta are now off-limits.
You can't just reduce your gluten intake; your diet has to be 100 percent gluten-free. And you can't "cheat." The damage to your intestine from a meal with gluten takes time to heal. It's this damage that leads to symptoms, so symptoms continue long after that one meal containing gluten is out of your system. If you diligently follow a gluten-free diet for five days and then have one cookie at an office party, your intestine will suffer.
Hidden gluten is a problem. If you unknowingly consume some gluten (many brands of soy sauce, for example, contain gluten) and don't see much improvement in your symptoms after two weeks of your diet, you might think, "Well, I guess it wasn't celiac." Then you might go additional months or years before getting diagnosed.
Some medications contain gluten as part of their inactive ingredients. Glucotrol, for example, may contain gluten. Check with your pharmacist or call the manufacturer of each of the drugs you take to see if the drug may contain gluten. If it does contain gluten, do not stop taking the drug. Talk to your doctor about what to do.
People with diabetes have additional challenges in going gluten-free. You'll be changing many of your usual sources of carbohydrate. This will very likely affect your blood sugar levels.
So again, if you do have celiac disease, it would be much, much better to get a real diagnosis. You'll have more reason to be committed to the diet, and you can get professional guidance as you make the required diet changes.
That said, if you're determined to try a gluten-free diet on your own, we have some suggestions.
One way to go gluten-free that is easy on your wallet and easy on your brain is to eat as if you're living in the 19th century. That is, eat no packaged food and don't eat at restaurants. Eat only whole foods that are cooked in your home. Eat plain vegetables, fruits, meat, fish, eggs, and rice. These foods are naturally gluten-free. Ideally, no gluten-containing foods would be prepared in your home during this time to avoid contamination of the food you eat.
If you can't see going without packaged foods, you've got a lot of reading ahead of you. You'll need to scrutinize lists of ingredients for any of the taboo grains or flours. You'll often find wheat or flour listed.
Assume nothing! Read all ingredient lists. One would think that Rice Chex cereal would be safe. But when you read the ingredients, you find it contains barley malt extract -- not safe.
Beware of hidden gluten. Flavorings, colorings, and other additives may contain gluten. When checking ingredients, follow the rule: "Don't know? Don't eat."
Gluten that is part of the packaging isn't listed in the ingredients. For example, chewing gum wrappers may be dusted with flour.
For long lists of foods you can and can't eat, get books about celiac disease, or check out the Web sites listed below (search the keywords "celiac," "gluten," or "gastrointestinal"). You'll be surprised and perhaps overwhelmed at the number of foods and additives that you can't eat (caramel color, communion wafers, curry powder). You might then decide to go back to the 19th century, or skip down to the ...
Go to a specialty foods store and start cruising the aisles. You'll find many foods labeled gluten-free. Some gluten-free foods have even found their way to mainstream grocery store shelves. (Foods from outside the United States labeled gluten-free may contain a small amount of gluten, so stick with foods made in America.)
If you eat a lot of pasta, you're in luck. Rice pasta tastes very much like wheat pasta. Potato-rice pasta is passable, though a bit mushy. Don't get quinoa-corn pasta; quinoa may not be entirely safe for someone with celiac disease.
Bread lovers don't have it as easy. Gluten is an elastic protein that gives bread its structure. Gluten-free breads are dense and heavy. Our advice: Don't eat bread for the first week or so. Then the beans-on-a-camping-trip phenomenon will set in. By the second or third week, you'll be craving any bread, and gluten-free breads might not seem so bad. Actually, Ener-G Tapioca Loaf makes good French toast.
If you're a nut for cookies and start to feel deprived, try Pamela's Chunky Chocolate Chip Cookies. They have so much chocolate you'll barely notice they're gluten- and dairy-free.
No Matter Which Century
Keep lactose low. The damage to the intestine in celiac disease often leads to lactose intolerance, which means you aren't able to digest the type of sugar found in milk and other dairy products. The symptoms are diarrhea and gas.
Keep your lactose consumption low or nonexistent during this trial. If you want to keep consuming milk and milk products, you can buy lactose-reduced milk (in the dairy case next to all the other milk), lactase drops (add the drops to regular milk), or over-the-counter lactase caplets or chews (in your grocery store or pharmacy, near other digestive aids).
Consider less variety. Consider eating the same thing frequently, for example, gluten-free pancakes every morning. (Arrowhead Mills makes a good gluten-free pancake mix.) One, you'll soon learn how your blood sugar levels are going to be affected by the new foods. (Check your blood sugars often during your gluten-free trial.) Two, if it turns out you are not sensitive to gluten, you won't have a bunch of partially-used gluten-free foods left over at the end of your experiment.
Pay attention to carb counts. Read the Nutrition Facts labels to get carb counts. Don't assume a sandwich made with gluten-free bread has the same amount of carbohydrate as one made with your usual bread.
Avoid alcohol. Alcohol made from grain (beer, for example) contains gluten. Consider avoiding alcohol during this trial. Alcohol can have unexpected effects on your blood sugar levels, and you'll have enough going on during this trial as it is.
It may take two to four weeks of a strict gluten-free diet before you start to feel better, though some people feel better within days. After you feel better, don't "challenge" your body by eating a large amount of wheat to see what happens. If you do have celiac disease, you could end up sicker than you were before.
As soon as you start to feel better, see your doctor and get a referral to a gastroenterologist. Blood tests that show whether you react to gluten may now be negative, because you've been off gluten. If you wait too long and your small intestine starts to heal, a biopsy may not be as clear cut as if you had seen a doctor while you were still eating gluten, so don't delay seeing a doctor.
Taken from the October 2001 issue of Diabetes Forecast. Written by Marie McCarren, a writer and editor in Arnold, Md. Jean Guest, MS, RD, a graduate research assistant at the University of Nebraska at Lincoln, provided invaluable assistance with this article