Welcome to THURSDAY NIGHT IS HEALTH CARE CHANGE NIGHT, a weekly Daily Kos Health Care Series. I am your guest host for this evening.
It is often the case with many types of health problems that the actual condition is difficult to diagnose. Many diseases and conditions present a wide array of symptoms that can be confusing which often leads to the treatment of the symptoms rather than the causative ailment.
I have had many different health problems over the years that have been a sort of mystery, like that of a well worn novel. Often I have had to be my own detective and with the help of a few good doctors who were willing to listen, I have come to the source of most of my conditions.
Though I have had cancer and several other conditions, tonight I will focus largely on Celiac Disease and my journey both in discovering the condition and what I do to live with it. For many years I lived with the diagnoses of IBS, or Irritable Bowel Syndrome, and GERD, or Gastroesophageal reflux disease. Needless to say, my entire digestive system was in varying states of total discomfort and difficulty. I had to take medications to control the acid production in my stomach as well as anti-spasmodics to try to control the turbulent seas that were my bowels.
In the beginning the medications were very helpful and I was able to feel relatively comfortable much of the time. Over time, however, the medications began to fail to control the ever worsening tides of horrific heartburn which included severe stabbing pains in my chest and back, and the cramps that would seize my intestines, which would at times double me over and require Lamaze breathing to get through.
In the end of 2005, I started to notice the development of many strange symptoms that became rather alarming. These included parasthesia, or numbing and tingling of my feet and lower legs, hands, and face. I also started to have a lot of fatigue, and pain in much of my body. I did what most people would do and went to the doctor. I ended up with a Neurologist who discovered that I was extremely deficient in both Vitamin B1 and B12, both of which can cause nerve damage. They then did nerve tests and discovered that I do have nerve damage in my feet. This still did not explain the range of symptoms I was having, but I started injecting B12, and taking B1 and Folic Acid.
Just a note here—these type of vitamin deficiencies can be very serious and can lead to serious neuropathy and even dementia. The lack of B12 causes demyelination of the nerve cells, and serious B1 deficiency can eventually lead to heart failure. I had been having some very strong heart palpitations, so that explained that portion of my symptoms. Also to note—prolonged use of many of the medications that treat GERD can lead to pernicious anemia, or B12 deficiency.
They did some other tests and though they found a few things that were slightly off here and there, nothing explained the degree of the symptoms I was having. Thus I went to the Google.
I was no stranger to food intolerances. I learned years ago that I cannot have any dairy products or soy or nuts. The dairy and soy were intolerances, which can differ from allergies. The nuts seriously aggravated my IBS. That was OK, though. I still had my beloved breads and pastas which I ate with relish. After doing a lot of research on causes of many of my symptoms, I came across several that sent me back to the doctor with a long list of tests that I wanted done. I also stumbled upon something that I had never heard of before and that is Celiac Disease.
Celiac Disease is an intolerance for gluten—which includes wheat (including durum, semolina, spelt, kamut, einkorn and faro) and related grains rye, barley and triticale. Oats are also considered a potential source of gluten and should also be avoided. This is a very serious intolerance because it actually causes an autoimmune reaction in the intestines that leads to a killing off of cells in the wall of the intestines that then prevents adequate processing and intake of nutrients from food. My body had been having some odd reactions (or seemed odd to me at the time) which included a seeming inability to lose weight—I was not hugely overweight, but seemed to be stuck at the slightly overweight level that I had been for a while. It seems my body was very imbalanced by the fact that I was not able to get the nutrients I needed from the food I was eating.
After discovering Celiac Disease I immediately went on the Celiac Diet and also started taking a lot of supplements to try to raise my nutrient levels. I was doing this with the full knowledge of my doctors, and I had them do tests so that I could know which vitamins and minerals I was deficient in. One thing I found interesting was that despite the fact that I put a ton of salt on my food, my sodium was borderline low.
There are two ways to test for Celiac Disease, one of which involves having a Colonoscopy which I had done a couple of years prior, and one is a blood test, which is not always conclusive. I elected to have the blood test, but did so after I had already been on a gluten free diet for several weeks, so the conclusions were indeterminate.
What was extremely conclusive, however, was that after I gave up all forms of gluten, I began to not only feel a lot better in many ways, but my GERD and IBS disappeared. I began to have normal and regular bowel movements, which if you have IBS you know is unheard of, and I also began to have a lessening of certain food cravings. My energy also seemed to stabilize quite a bit.
This was not an end to all my symptoms because I discovered a couple of other chronic conditions that I have, but this was the beginning to the path that led me to their discovery and to a new kind of wellness. Celiac Disease is incurable and requires a lifelong commitment to a modified diet. To me, this is a small price to pay for a new sense of health free of the sometimes disabling symptoms such as GERD and IBS that I endured for years. I will post several links to some great information on Celiac Disease. We are fortunate that many food companies are now making gluten free food, which is largely available through small local CO-Ops and food specialty stores, though many major chains are not carrying some of them as well.
There is life after gluten, and it is a better life for those of us who suffer with the disease. Though Celiac Disease is still widely unrecognized in this country, many doctors are becoming aware of it. My recommendation to you if you feel you may have this disease after reading through the symptoms in these links is to try the diet. It can’t hurt you and it is an easy way to see if it can help you. There are many creative ingredients I have found to still make enjoyable food. Garbanzo Bean flour, for example, makes a wonderful breading for fried chicken or zucchini, and rice flour can be combined with coconut flour and tapioca flour to make pancakes. I mostly don’t eat those things, but rice tortillas are a good friend.
Thanks for stopping by, and have a wonderful gluten free day!