My battle actually began 20 years ago when I was 18 years old. I went to the doctor about the burning sensation in my stomach. They did a barium test to determine if there was an ulcer. I had no other symptoms at the time, so when the test was negative, I was told to take antacids. Years later I graduated to acid blockers.
By the time I turned 22, I started suffering from more than just a burning stomach. Other symptoms slowly began, one by one, and would come and go, such as exhaustion, malaise, diarrhea, constipation, and even nausea at times. Over the years I would weigh anywhere from 135 to 180 pounds. I would lose the weight quite suddenly when suffering from the periodic diarrhea. But I would gain the weight back gradually when the diarrhea would go away while suffering from constipation instead. This pattern went on for years. I then began to suffer from terrible edema, which was attributed to PMS.
Around 1992 I thought perhaps I was lactose intolerant because I noticed I was getting diarrhea after eating milk products. I started to take a lactase enzyme. This was a big mistake. Yes, it helped the lactose intolerance, but it also masked the burning sensation which could be caused by other intolerances. So although the burning was gone, the bowel trouble continued. Over the years the diarrhea and constipation came and went. It wasn't as frequent as it was prior to taking the lactase enzyme. But I realized I was going to have to remove other offending foods from my diet. I would get sick on potato dumplings, and I would remove potato from my diet. I would go out for Chinese and eat chicken and lettuce salad, cream cheese puffs, and sweet and sour chicken, and I would remove lettuce from my diet after finding undigested lettuce floating in the toilet. I thought it was always the fruits and vegetables which were making me sick. I was no longer eating lettuce, potatoes, cabbage, broccoli, cauliflower, mustard, ketchup, tomatoes, cantaloupe, honeydew, carrots, corn, apples, pears, and bananas. While my diet was in disarray, I continued to feel exhausted. I didn't get diarrhea as often, but I was getting weaker and weaker. I was so exhausted each day that it would wear me out just walking six blocks to work. My muscles were so sensitive that it hurt to carry my purse or lean up next to a sofa cushion.
At this point my doctor thought I had Fibromyalgia, and because there is no cure for FMS, he decided to treat my symptoms. I started taking a sleeping medication that would help dull the pain, and I started an aerobic exercise program. I tried the tread mill, but it caused severe hip pain. Then I tried the stair machine. If I kept it set at a lower stair height, I could use it without pain. It took months to get my energy back. I started out doing only five minutes a day on the machine. It wore me out. Eventually I was able to work up to 25 minutes, which was my doctor's goal. I would feel exhausted after the work out, but at least those six blocks to work didn't tire me out anymore.
I continued to eliminate almost all fruits and vegetables from my diet. And I cut out most breads for a while, because most of them contained high fructose corn syrup or dextrose which I thought where making my bowels act up. I finally found a good whole grain wheat bread which did not contain those ingredients. I also took up snacking on graham crackers. They were loaded with fiber. I thought this would help to control the constipation and diarrhea. I loved those graham crackers. I was eating almost a box a day until one day I got such horrible, painful, diarrhea I thought I would die. I was in the bathroom a good half hour in pain. I decided I better check the toilet this time to see what I was failing to digest. I found thousands of graham cracker crumbs floating in the water! At that moment it finally dawned on me that perhaps it was wheat flour all along that was making me so sick. Potato dumplings had flour, the Chinese food had flour, the lettuce I ate was in salads with croutons or on sandwiches. All of these contained wheat.
At this point I decided to look on the internet to try and find some answers. I did the following search in Excite: Wheat AND intolerance AND diarrhea. I found some websites which discussed celiac disease. I realized that I was suffering from almost all of the symptoms. I read that many people have just two or three of the symptoms. So I assumed I must have Celiac Disease since I had just about every symptom listed.
I phoned the consulting nurse at my HMO that same day. She rattled on about how rare Celiac disease is. She thought that only one in three thousand people have this disease. (However, recent studies show that perhaps from one in 90 to one in 260 people of European descent may have this disease and most of them don't even know it. And in the U.S. one study done by the American Red Cross showed an incidence of 1 in 300 with positive blood tests.) The nurse recommended that I just remove wheat from my diet for two weeks too see if I felt better. Celiacs cannot properly digest wheat, rye, barley, and oats, so I decided to do a test of my own to see if it might be Celiac Disease. I cut out wheat, but I added oats. The diarrhea was gone, but I got terrible flatulence from the oats. My stomach would be so distended every night when I got home from work, that I had to push on my stomach to get the gas to pass. So, after about four days of this, I cut out oats. Next, I decided to try eating rye products. I bought some pure rye crackers. The same flatulence occurred. I gave it a few days, but it just wouldn't go away, so I cut out rye. Next, I realized that I had unknowingly tried Barley, when eating my muesli with Rice Dream. Rice Dream is a milk substitute made from milled rice, which is processed using barley. I tried finishing off the rest of the bottle by drinking the stuff straight and it felt like it scorched my throat and stomach. It burned for nearly four hours!
So I decided no more wheat, rye, barley, or oats for me. I also decided to remove milk from my diet as well. After about two weeks off these foods I noticed that my stool no longer floated in the toilet, and I no longer needed to use my nasal inhaler. My postnasal drip was gone and so was my congestion. After a month, I found out that I no longer needed to use my two chest inhalers. Later, I realized that my water retention was completely gone. My wedding ring kept falling off, so I discontinued using my water pill. The diet was like a miracle cure. After four weeks off gluten and milk, I saw my internist for my annual physical and shared with him my discovery. He told me he knew nothing about Celiac Disease, but gave me a referral to see a Gastroenterologist.
As I read more about Celiac Disease on the internet, I discovered that because I had started a gluten free diet already, most likely my blood test results would be negative when I finally saw my gastroenterologist. I decided to call down and arrange to have the blood test for Celiac Disease while I was waiting for my GI consult. I had been on the gluten free diet for about four weeks. The test came back negative. I was devastated. I had read that these tests were almost 100% accurate. I thought I had found my answer. Through checking on the internet, I discovered that others had negative blood tests, yet had positive biopsies. I later discovered that only positive blood test results are reliable. This was a relief to me. I needed to know why the diet was helping me. It had to be Celiac Disease. I know it seems strange that I would want to have this illness. Because my illness had spanned over a number of years, I had to finally know what had been causing such pain and distress in my life. It would be a relief to have someone give the condition a name. And it was equally important that someone explain to me that the condition is real--it is not in my head. I finally had my biopsy taken on 8/25/97. My GI doctor assured me that if it is Celiac Disease, there will still be damage present in the intestine which will be detectable. I asked him to make sure that the pathologist was aware of the fact that I had been gluten free for 4 months already. He said he would take care of it.
The following week my gastroentrologist called me with my biopsy test results. He said they were negative. I asked him to read off what the pathologist wrote on his report. The pathologist wrote that the villi appear fully formed and are unremarkable for Celiac Disease. I was discouraged. This didn't make sense to me. I decided that I wanted to see the biopsy slides myself. I called my HMO and spoke with the pathologist. He was very nice. He arranged a time for us to meet in his office. I told him in our meeting that I had been gluten free for four months. He told me he was not aware of that fact. In fact, he said that he has no knowledge of how to read a biopsy that would show signs of Celiac Disease healing. He apologized for the miscommunication which occurred. He recommended that I appeal the diagnosis (HMO rules...) and ask to have the biopsy sent out to specialists in reading Celiac Disease biopsies after being on a gluten free diet. I asked him what criteria he used for determining that it wasn't CD. He told me that if he could find at least 3 villi in each sample which appeared normal in shape, that he concluded it was not CD. Of course, this was assuming that I was still eating gluten. I looked at the tissue samples under the microscope. I noticed that although the villi appeared fully formed, they were all clumped together, with no spaces between them. This could prevent digestive enzymes from working properly on food in the digestive tract. The pathologist said he had no idea what it meant. He wondered if it was just the "cuts" of tissue. However, all of the them looked this way--all stuck to together like sardines in a can. Healthy villi look kind of like your fingers when you spread them a part. There should be space between them.
The first week of October 1997 I filed the HMO appeal papers on my diagnosis. In mid-February 1998, my biopsy samples were finally sent to Mayo Clinic to be reviewed by a specialist. They were reviewed by a Dr Kenneth Batts who said in his written report that they cannot be certain from the samples whether I have Celiac Disease or not. He recommended a gluten challange. I will not do this because I get extremely ill when I ingest gluten. It could takes months for the damage to occur because my body just spits the food right out in about 24 hours after eating it. I am not willing to put myself and my spouse through such an ordeal. I put a call out to Dr Batts. After about one month he returned my call. Apparently the phone message got barried on his desk. His was quite apologetic. He was very supportive. I told him about my medical history, including symptoms when I eat gluten by mistake. At the end of our conversation he told me to assume that I have Celiac Disease. My symptoms are classic and only occur when gluten is consumed. The villi, he said, could definitely been healing due to the timing of the biopsy. If I want a follow up biopsy a few years from now, they would do a comparison to see if the villi are no longer clumped together.
The symptoms I have when I consume gluten are as follows:
Research in Switzerland and Germany has been done to develop an invitro (culturing tissue in an artificial environment) test for diagnosing Celiac Disease for people who have been gluten free. The process will have to be tested on a larger population before it will become accepted practice. The test would involve taking a small intestine biopsy, and culturing the biopsy tissue in the protein gliadin (gluten) to see if there is an increase in lymphocytes in the tissue. The studies and Switzerland and Germany have shown that this only happens in people who have been treated for Celiac Disease--not for people who have never had the disease. So, there is hope for me. Even though the HMO says they cannot diagnosis it now, ten years from now it may become common practice to diagnose using this process if a person has been gluten free. I want to find out if Mayo would do this invitro procedure on fresh biopsy samples. If so, I will make a request to my HMO to be referred to Mayo. If all else fails, when the procedure does become common, you can be sure I will request it then.
It is important to find out if it is FMS, CFS, or Celiac Disease. If it is Celiac Disease, and a gluten free diet is not followed for the rest of one's life, research has shown that there is a high risk of developing intestinal lymphomas. Celiac Disease is a hereditary disease. If someone has this, there is greater chance that their mother, father, sisters, or brothers might have it also. My mother and two of her sisters died of such lymphomas. If only we had known then about Celiac Disease. My mother had every symptom in the book, and was never diagnosed. She was in pain for years. I have a sister who was diagnosed about 10 years ago with a wheat intolerance. She tested negative in 1998 but had been gf for 10 years prior to going on gluten again for the last year. Both my sister and I fear getting the cancer that killed our mother and our aunts. They were terribly painful, drawn out deaths.
I am grateful that research has been done to show the connection between Celiac and Lymphoma. This means that I can lower my risk of developing this lymphoma by eating a gluten free diet. The risk for Celiacs developing intestinal lymphomas is one in seven if a gluten free diet is not strictly adhered to. That is like playing Russian roulette with my life. If a gluten free diet is followed, the risks are about one in 3000 of developing intestinal lymphoma--which is the same ratio for people who do not have Celiac Disease. I take this very seriously since lymphomas have taken half of my grandmother's children thus far. I have read that cheating on the diet is not recommended, because even accidental ingestion of gluten, even just once monthly, can be enough to sustain intestinal damage.
If you too are suffering from such symptoms and have been told it is FMS or CFS, please ask your doctor to refer you to a competent Gastroenterologist. It is important to see one that is aware of current research, not one that believes that the disease is rare. They must believe that one can develop latent Celiac Disease. There are many doctors out there who are not informed. They are not in touch with current research which can mean that people with Celiac Disease may continue to eat gluten, which could lead to cancer. I have read comments by two Gastroenterologists which have shown in their personal practices that anywhere from 30 - 60% of patients have negative blood tests but positive biopsies. So do not stop with just a blood test. If the test is negative, have the biopsy.
There is some risk involved in having the biopsy, but my doctor assured me that the risk is less than that of having the tonsils removed or having a tubuligation. During the biopsy I was not under general anesthesia. I was completely a wake. An endoscope was put down my throat and into the duodenum. They took biopsies from several sections of my duodenum. It did not hurt because they numbed my throat prior to having me swallow the scope. The doctor recommends patients not swallow during the rest of the procedure; this reduces the chances of pain occurring from the procedure. Since I wouldn't swallow, he gave me a towel to drool on. (The saliva has got to go somewhere!) I had no pain or discomfort after the procedure. These tissue samples will show the doctor whether damage typical of celiac disease has occurred. If it has, you must begin a gluten free diet which is a hard cross to bear. See the links on my homepage to learn more about Celiac Disease and the gluten free diet and to view sample biopsy slides.
Unfortunately, there are growing number of people who have negative biopsies in addition to negative blood tests. These patients have started the gluten free diet prior to testing. Most doctors assert that these people do not have Celiac Disease. Some people with the symptoms of Celiac Disease with no apparent intestinal damage assert that the illness came on quite suddenly and believe that there wasn't time to do such damage to the system. We hope that someday, someone will find the answer as to why these people test negative and yet are completely cured after starting a gluten free diet. Hopefully, with these new tests coming out in Europe testing for Celiac Disease while being on a gluten free diet, we will finally get some answers. I would also like to mention that some people who consider themselves "gluten intolerant" but not celiac believe that gluten causes them no great harm. However, there have been no long term studies on the effects of a gluten diet on someone with gluten intolerance without apparent villi damage. It is quite possible that eventually villi damage would occur and the patient eventually given the Celiac diagnosis.
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copyright by Abigail Neuman, March 1998
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Disclaimer: The author of this document is not a physician, nurse, registered dietician, or a health care professional of any kind and assumes no liability for death or injury as a direct or indirect result of reading this document.