Why Am I Not Getting Better?

If you have celiac disease and you think you have completely given up wheat and gluten, your symptoms should improve. If you are still having cramps, diarrhea, weight loss or similar symptoms, the most likely reason is that you have not eliminated absolutely all of the gluten in your diet.

Getting rid of every bit of gluten can be very difficult. You should avail yourself of all the resources online and in local stores selling gluten-free food. You may also need the help of a dietitian. You cannot just have a little gluten and think you will not feel the consequences.

While accidental gluten ingestion is the most likely reason for your symptoms to continue, you still need to let your doctor know. He or she needs to make sure there is no other reason why you are not feeling better.

The doctor needs to make sure that you have been diagnosed correctly. You might not be getting better if your diagnosis is wrong, or if you have more than one intestinal problem. For example, the symptoms of inflammatory bowel diseases such as Crohn’s disease are very similar to those of gluten intolerance. Crohn’s disease can even cause villous atrophy, the hallmark of celiac disease when the intestine is biopsied. Complicating this even further, some individuals have gluten intolerance as well as Crohn’s disease. Both have to be treated. There may be clues in your medical history that point to another diagnosis. Your doctor may need to do other tests.

Another possibility is that you have trouble digesting other substances such as lactose (milk sugar). People with lactose intolerance do not have the enzyme needed to break down milk sugar. They will have cramps, diarrhea and bloating after taking in milk and milk products. These are similar to the symptoms which occur with gluten intolerance, but they are not as severe. If you drink milk or eat a lot of milk products, you could consider a trial of avoiding them. You can also take the enzyme that breaks down lactose (Lactaid® and similar products), or you could drink lactose-free milk and find lactose-free cheese. These are available in most grocery stores. Other foods, including soy and fructose, can cause similar problems in some people.

If you and your doctor have eliminated other diseases and intolerances, you are both sure you are on a gluten-free diet and you still have significant symptoms, you may be one of the few people with what is known as “refractory celiac disease.” This means that avoiding gluten has not completely repaired the damage inside your intestine. Refractory celiac disease, which may occur in approximately 5% of people with gluten intolerance, is being studied to understand it better and learn how to treat it.

With refractory celiac disease, complete removal of gluten from the diet does not improve symptoms or reverse the changes seen on intestinal biopsy. Since the disease continues, affected individuals can experience problems due to caloric and vitamin deficiency, because nutrients are not being absorbed. There may be actual bleeding causing a low blood count.

There are two types of refractory celiac disease. In one, the appearance of the intestinal lining when a biopsy is examined is similar to its appearance in patients with celiac disease that responds to treatment. In the other, there are lots of abnormal white blood cells visible in the biopsied tissue. Finding these abnormal cells on biopsy is very important, because this is associated with inflammation in other parts of the small intestine as well as a certain kind of cancer.

The cancer associated with refractory celiac disease is a lymphoma derived from cells called T-cells. People with celiac disease can also develop adenocarcinoma in the intestinal tract.

If your symptoms have not improved on a gluten-free diet, or if you were feeling better for some time and then started to experience new or worsening symptoms, your doctor will have to evaluate you thoroughly to see if you might have type 2 refractory celiac disease and/or an associated cancer.

There is treatment for refractory celiac disease beyond a gluten-free diet. This includes finding ways to provide enough calories as well as needed vitamins and minerals. Corticosteroid medication like prednisone often improves symptoms. There is research at the current time looking for other ways to treat this disease. Medications that may help are those that suppress the immune system. This needs to be done without stimulating any precancerous cells.

Clearly there are a wide variety of reasons for symptoms to continue if you have celiac disease and believe you are on a gluten-free diet. You may simply need to learn how to adhere to the diet, or you may need to stop eating certain other foods. You may actually have a different illness instead of or in addition to celiac disease that needs treatment. Or you may be one of the small number of people with refractory disease. In that case, you will need other treatment and very close observation by your doctor. As more is learned about this condition, new ways to treat it are being tested. It is possible that medications may be developed that improve symptoms of refractory celiac disease as well as lower the risk of cancer.