Celiac.com 12/04/2009 - It’s been ten months since my diagnosis of celiac disease. The foggy thinking is clearing. I remember more and more details of the misery of living a life with gluten poisoning. Can you imagine having leg cramps so severe that when they finally subsided your legs were bruised? That was by far the worst pain I have ever experienced. And I would have those cramps four or five times a week. I was prescribed quinine and it didn’t help a bit, however I did not contract malaria. People would say to me, “You just need to eat bananas. You have a potassium deficiency.” They didn’t know I ate bananas everyday to no avail. The dull pains in my gut I had learned to ignore even though they were constant. The leg cramps that would come in the middle of the night I could not ignore.
Other symptoms included extreme fatigue, lightheadedness, vision loss, anemia, and heart papaltations. Throw in depression, panic attacks, and a feeling of impending doom. My blood work was always a frightening revelation. It even scared my doctor and he’s not even me! You know it’s bad when the doctor is reading your lab results and both of his eyebrows arch up to the middle of his forehead. I also had vertigo and balance problems. The weight loss was extreme. Gluten had robbed me of nutrients necessary to live a normal life. I was suffering from malnutrition, although I ate constantly. Life wasn’t really working out like I had hoped.
Can you blame me when I say I really hate gluten? I hate gluten as much as I hate Adolph Hitler. It is insidious. All of that pain was caused by that little protein called gluten. It almost killed me. I won’t ever consciously eat gluten again no matter what drugs are developed to neutralize it. I feel like the classic jilted lover when it comes to gluten. I wouldn’t take gluten back for any amount of money. I would take the drugs only to insure myself in case of accidental ingestion when eating out at a restaurant or something to that effect. When I am at the grocery store I will not even walk down the bread aisle. I hate the smell of fresh bread. I really believe everyone would be better off if they went gluten free. However, it’s not going to happen.
The best thing about celiac disease is that once you eliminate gluten from your diet you start getting better in a hurry. What an exciting journey these past ten months have been! I have gained 58 pounds. I feel so strong that sometimes when I walk down the street I hope someone will take a swing at me! Unless he’s a professional fighter I don’t think he’ll knock me to the pavement on the first swing. Maybe I exaggerate a bit, but what I am trying to say is that I have a feeling of well-being that I never knew possible. I feel so good I want to shout out to the neighborhood, “I FEEL GOOD!” (cue the James Brown song here) “I KNEW THAT I WOULD NOW!”
What is exciting is that some of the research is very optimistic. I recommend reading some of Dr. Ron Hoggan’s articles on the cutting edge discoveries that could possibly neutralize the toxic effects of gluten in celiacs. Larazotide Acetate could be the miracle drug celiacs and other autoimmune sufferers are hoping for. I think you will be hearing a lot more about breakthroughs in the near future. I am so grateful for Dr. Hoggan, Scott Adams, Dr. Peter Green, the research team at the University of Maryland, Dr. Alessio Fasano and many others who are lending their brilliance to this puzzling malady. I marvel at the depth of their knowledge and passion for discovery. Unfortunately, I am not so gifted. I can only thank them and reap the benefits of their work. Reading Recommendations:
- If you aren’t already familiar with The Journal of Gluten Sensitivity you can subscribe through a link here at Celiac.com. You will find much information and you will be encouraged at the current work being done in this field.
- I highly recommend the following books for the newly diagnosed celiac:
-Celiac Disease and Living Gluten-Free – Jules E. Dowler Shepard (a great personal story honestly told by a smart author, and lots of recipes)
-Celiac Disease a Hidden Epidemic – Peter Green. M.D. and Rory Jones (lots of science and answers to your questions here)
-The G Free Diet – A Gluten Free Survival Guide – Elisabeth Hasselbeck (another honest personal testimony and lots of graphs, charts, and recipes)
All of the above have done much research and have exhaustive indexes. Well worth the investment.