I was sick for years. At first it was chronic fatigue and gastrointestinal trouble. Then there were also painful joints, frequent headaches, skin rashes, intestinal bleeding, and daily indigestion. There were miscarriages, and finally there was cancer.
The first diagnosis was Inflammatory Bowel Disease, specifically Ulcerative Colitis. As I understand it, my own immune system was attacking the lining of my large intestines, causing it to become inflamed, ulcerate and bleed. This was managed with daily medication, and occasional courses of steroids as needed when things got out of control. Not the steroids used by athletes to bulk up, but the kind used to knock down the body’s immune system so it will stop attacking its own body.
I asked my gastroenterologist about dietary changes, but he said that diet wasn’t really involved in treating this disorder.
Next, there was the diagnosis of Systemic Lupus Erythematosus. Apparently my immune system was attacking other areas of my body as well. I was so tired. My joints hurt. I was in my thirtys, but frequently moved like I was in my eightys. Imuran, an immune suppressant sometimes used to keep people with organ transplants from rejecting organs, was added and did help somewhat, until I was diagnosed with cancer.
I was 38 years old, the wife of a wonderful man and the mother of a precious eight year old daughter. I had been sick for nearly all of her life. I wanted so badly to be a healthy, energetic mother for her. I wanted to be able to care for my family and home. I hoped to be able to return to work someday to contribute financially to my family. And now I had cancer. How could this be? The Imuran was stopped to allow my immune system, such as it was, to help fight the cancer.
Surgery revealed there was metastasis and further treatment would be required. Metastasized endometrial cancer is most successfully treated with radiation, but radiation was deemed too risky because of my autoimmune disorders. There was a lower likelihood of remission with chemotherapy, but sometimes you just have to work with what’s available. And it was better than doing nothing at all.
I recovered from surgery and chemo, and the chemo had my immune system knocked down for awhile which made me feel better. But gradually my old symptoms returned. I was especially troubled by the fatigue, joint pain, and GI symptoms. My gastroenterologist suggested over-the-counter remedies for the stomach bloating and indigestion. He continued prescribing medications to reduce the inflammation in my colon, which helped as long as I kept taking them, but certainly were not providing a cure, or even a lasting remission.
My rheumatologist prescribed anti-inflammatory drugs and prescription pain meds to alleviate my pain at night so that I could sleep. I tried to regulate my activities so as not to aggravate my condition, while still taking care of my family and home as much as possible. Fortunately, my husband regularly helped out around the house in addition to working long hours to support our family. Housework and meal preparation frequently gave way to illness and the need to rest.
I learned to accept living in a home that was not as neat and clean as I would have liked. We ate more take-out food than was healthy because by late afternoon I was frequently too tired to prepare dinner. Most days, I needed an early afternoon nap just to make it through the day. There had to be something I could do to feel better. So I started doing research.
While reading a book on digestive disorders, I came across a set of symptoms that matched those I had experienced over the years. Celiac disease. No, the solution to my ills couldn’t be so simple as not eating gluten. Surely one of my various doctors would have known about this. The testing involved blood work and a biopsy of the small intestine to confirm celiac disease.
The only treatment was to stop eating foods containing gluten. So, I could go through all this testing, but there really wasn’t anything to be done as treatment except for me to stop eating foods containing gluten. Maybe I would just stop eating wheat for a few days to see what would happen.
Now, this was going to be really hard. I love crusty French bread, pasta, hearty whole grain bread, muffins, grilled cheese on soft white bread, crackers, toasted bread for breakfast, bagels, etc. Did I mention that I love bread? But what if giving up bread would help me feel better? It was worth a try, and besides, it was only for a few days. I could stop eating wheat for just a few days.
After three days I was no longer suffering from stomach bloating and indigestion, my colitis symptoms were reduced by at least 50%, I no longer needed prescription pain meds to alleviate my joint pain, and I felt so much better. I actually had the energy to get out and do things, and I no longer needed an afternoon nap. It was as if I had recovered in a few days from what felt like a case of the flu that had gone on for more than a decade.
I’ve been following a gluten-free diet now since 2004. I occasionally slip up and eat something I shouldn’t, and I always pay for it for a few days. I have found some enzymes that reduce my reaction to gluten, but not enough that I would want to eat gluten daily.
Unfortunately, I still have autoimmune problems, but much less severe than before. I still take daily prescriptions, but require much less treatment now. I still must pace myself each day. However, now I am able to live my life. I don't want to imply that eliminating gluten from my diet was a cure-all, it wasn't. But it made a significant difference in my overall health.
Why hadn’t my doctors figured this out? They appeared to be reasonably competant in all other respects. I felt that they each genuinely cared about helping their patients to be well, and did everything they knew to do towards that end.
Everything they knew to do... there lies the problem. Their medical school training had apparently not provided them with the knowledge required to recognize this disease. I’ve since read that the diagnostic criteria that are taught for gluten intolerance are extremely narrow and only serve to diagnose a small percentage of the actual cases.
Through my own research I now understand how to better take care of myself. I’ve always loved food and enjoyed cooking. In college, I majored in nutrition and food science, which led to a career doing product development in the food processing industry.
I began this blog to share what I'm learning about living without gluten. I'm sharing recipes I've developed and reviewing gluten free products on the market. And I'm learning so much from the comments I receive, which I greatly appreciate.