My Abdomen Hurt - Stomach Trouble

Written by JMS,Huntsville,AL

Stomach trouble, for years.  A major symptom was pain--my abdomen was sensitive even to touch. But I was also experiencing bloating and gas; a feeling of fullness from right up under my rib cage on down, every time I ate.  I was used to the diagnoses—gastritis, duodenitis, irritable bowel.  But the symptoms also were similar to what I read as symptoms for ovarian cancer, leading me more than once to a blood test for that.  

Over the years I’d been prescribed every “P” medicine I could think of for stomach problems – Pepsid, Prilosec, Protonix, etc.  The most recent visit to my family doctor resulted in an appointment with a gastroenterologist who scheduled an endoscopy, looking for evidence of ulcers. She set up an appointment immediately to discuss her findings.  No, it wasn’t an ulcer.

But when she didn’t find that, she looked further with the scope, into the small intestine.  There she found the telltale signs of celiac disease—flattened or atrophied villi, the small projections that line the small intestine.  A biopsy confirmed her suspicions, but she also had me go for a blood test.  I learned later that for many people, the blood test comes first, and then the biopsy is the “gold standard” for confirmation of the disease.  

The doctor explained that the disease, which is known by several names – celiac sprue, gluten intolerance, or gluten-sensitive enteropathy, is an autoimmune disorder where the immune system reacts to gluten contained in wheat, barley, rye, and oats.  Consuming foods that contain gluten caused damage to the villi.  These patches of damaged villi contribute to malabsorption of nutrients.

The symptoms differ in patients: the gas and bloating are common, but some experience diarrhea while others have constipation.  I always had more of a problem with constipation. But I have noticed that now that I am aware of having celiac and generally have eaten gluten-free meals, if I eat something questionable that probably had gluten in it, within hours my stomach is puffy and I may get diarrhea.

There are other symptoms too: celiac has been linked to a vast array of complaints that are not intestinal in nature including anemia, skin rashes, migraines, depression, osteoporosis, and attention deficit disorder.  When I thought back to my childhood, my small stature, as well as a failure to thrive, were suggestive of the disease.  I remember weighing the same amount in first grade as I had in kindergarten and my parents giving me something called “tonic” in an effort to help put some weight on me.  I remembered the diagnosis of duodenitis as a teenager, and struggling to eat toast in the morning before school while my stomach rebelled.

What was the cure?  While celiac cannot be “cured,” it can be controlled.  There is no medicine.  The patient must adhere to a gluten-free diet.  That means not eating anything containing wheat, barley, rye, and oats (the jury is out on the oats – some celiacs can tolerate oats while others can’t – and if we do eat oats, we need to ensure they are not cross-contaminated in the processing plant by the other grains we cannot eat).

What did this mean?  The first 2 weeks after the diagnosis I lost 10 pounds, trying to figure out what I could eat. No bread, cookies, pastries.  No pasta.  No sauces or soups that might be thickened with flour.  No fried foods coated with breadcrumbs or batter.  Gluten appeared to be in everything!   Reading every label in the grocery store took forever, and my shopping time doubled. I reverted to the basics – fruit, vegetables, and meat.  

What was the danger if I didn’t comply?  If I stuck to the gluten-free diet, there was a good chance the villi would heal and the intestinal lining would grow back healthy.  If I didn’t follow the diet, the doctor told me continued ingestion of gluten and the resulting villous atrophy could lead to lymphoma in the intestines.  That was scary. My father had lymphoma in his colon 15 years ago, and at the time, his doctor remarked that it was a strange place to find it.  But now my doctor was saying that was exactly the place it would occur.

In the 5 years from my initial diagnosis, I’ve learned that celiac, while originally called rare in the United States but somewhat more common in European countries, affects about 1 out of every 133 persons, with many being misdiagnosed for 10 years or more before it is determined that they have celiac.  It’s a genetic disorder, with some immediate family member also likely to be affected.  My dad’s been battling unexplained anemia, and his blood test came back indicative of celiac – he is finally going to have an endoscopy too to determine whether he also has the disease.

In the years since my diagnosis, major strides have been made in making gluten-free foods more easily available.  Several restaurant chains make a gluten-free menu available.  Gluten-free baking mixes containing alternate flours such as rice, corn, bean or nut flours, and potato starch or corn starch, are available not only in health food stores but mainstreamed in many grocery chains.  This means I can have bread, crackers, and other baked goods again—they’re just made with different ingredients.

Gluten is the binder in wheat-based foods; I’ve learned to use xanthan gum as a substitute binder in gluten-free dishes, turning into somewhat of a chemist in my kitchen.  I have an extensive collection of gluten-free recipes and cookbooks, and belong to a gluten-free support group.  We share recipes and information on where and how to safely eat out, and learn about the latest strides in efforts to diagnose or treat the disease.  Maybe someday there will be a pill that can be taken that will allow us to eat foods containing gluten again, like the lactose-intolerant folks have for drinking milk.  For now, it is enough that at least the celiac disease that I probably had my whole life has finally been diagnosed.