Monday, April 30, 2007

Having A Hard Time Bouncing Back

After I left the hospital last week I really expected to return home and resume my normal activities. Wrong! I didn't realize how sick I was. I not only did not resume my normal activities, I am also not bouncing back. No Bouncing! But, I am counting my blessings because I'm still here for one thing, and my strength is returning for a second thing, albeit, slowly.

I have discovered a few things along the way that is helpful in understanding my condition. I was tested a few years ago for a disease called celiac sprew. The blood test was inconclusive, and the biopsy also showed negative.

Doctor McBride (John Lowe's personal physician) told me that I would have to eat a normal intake of wheat everyday for at least two months in order for the test to show positive. I told him that there was no way I could do that without getting sick, and having diarrhea everyday.

He did the test anyway and as we expected it didn't show positive, but Dr. McBride said that it didn't matter what name we put on this problem, the symptoms are the same, so obviously, my body won't tolerate wheat and many other foods.

Kenny and my sister Sharon have the same symptoms. They also took the same tests I took which also came out negative. Kenny has been on a gluten-free diet for about 13 years. He had a very strange problem in that his feet hurt. They were hurting so badly that he was literally forced into crawling, or walking on his knees, anything to stay off his feet.

He worked at Boeing in Seattle, and had gone to every doctor he could think of that dealt with the problems he was experiencing. Finally, I believe it was his boss who suggested he see a doctor who deals in alternative medical practices. Finally! Someone understood what was going on. He had an infection in his intestines!

He was put on medicine to kill the candida yeast infection, and was told to go off wheat, milk, sugar, caffeine, and avoid all foods that could have mold on the skins, such as: carrots at a salad bar. He was amazing! He ate exactly what he was told to eat, even eating unleavened (yeast-free) bread! I tried it, and hated it! Bread has to be really good for me to enjoy it.

He got better! He isn't as strict with his diet as he was then, but still does well.

One thing we've both noticed is that when we eat wheat: we want to cry. That sounds funny but, we both feel anxious, jittery, emotional, and we can't cope with the smallest problem.

Wheat also causes me to have diarrhea, sinus infection, (this happens because wheat and milk cause congestion, then becomes infected) my ears go temporarily deaf. I also get patekia, (spelled wrong. It means blood spots appear on the skin because the blood vessels have burst.)

My tongue can also bleed. I was told by a nurse that there are thousands of capillaries in the tongue and naturally they bleed also. I had asked several doctors why my tongue bleeds, not one of them had an answer, but my friend and nurse Carolyn Mathis knew immediately.

My left ear is pretty deaf from the infections. I hear 80 decibels below normal in my left ear, and 40 decibals below normal in my right ear. I have meiner's disease, and could go permanently deaf in both ears if I continue to eat wheat!

My uncle Jim had Meiner's disease most of his life, and he spent at least 20 years totally deaf in both ears. I don't want to go there!!

The reason I believe celiac sprew is the answer is because of an experience that Robyn had. She was in relief society at church when a lady began telling about a health problem she was experiencing. Robyn was impressed by the spirit that she should listen and pay attention, because this problem is in her family. As she listened she thought to herself, "This sounds like my grandmother, my mother, and my aunt Peggy." Sharon related the incident to me, and I took it to heart. That's when we all got tested.

I've read a lot about celiac sprew and one thing I learned is that if the condition goes untreated (treated would mean avoiding wheat) that the body would develop intolerance's to other foods.

That is exactly what has happened to me. Rice is the only grain I can eat. There are a few berries that are ground into flour that I use to substitute for wheat. Such as: teff, quinea, and buckwheat. Buckwheat is a berry not a grain.

I have been getting along well by adding these to my diet. I make banana and zucchini bread with teff and rice flour, I use buckwheat for pancakes, and I use quinea in making a salad.

You boil the whole quinea grain, rinse it in cold water, and add it to lots of fresh vegetables, herbs, and an olive oil dressing. If anyone is interested in the recipe, I would be happy to share it.

Quinea and teff are very nutritious and we should be using them along with wheat in our diets in order to get all the nutrition that is offered.

Because I went so many years with this disease undetected I now have food indolence's to wheat, barley, corn, soy, oats, (actually, an intolerance to oats was discovered when I was a baby.) I can't tolerate milk, chocolate, caffeine, or all simple sugars.

People always ask me what I do eat. Many good foods that our creator put on the earth, that's what!

I eat meat, fish, eggs, all fruits and vegetables, and the few grains or berries I mentioned earlier.

It just means I can't ever have cookies, pie, cake, donuts, pudding, chocolate, pizza, bread, and
many other foods. That is the discouraging part!

I love the foods I can eat though and tell people that I eat like a queen. But it's a very restrictive diet! A friend said years ago, "If I knew I would get sick eating certain foods, I would never put them in my mouth!) I shot this response back, "Those are the words coming from a mouth that is able to eat anything)!

People who can eat everything are very smug about it, and have absolutely no idea what they're talking about when they think they can easily go without foods that a part of the normal American diet. It's just plain hard!

One thing I learned on the web concerning cheating on a celiac sprew diet is that it can cause colon cancer.

My sister Jeri died of colon cancer a year and a half ago. I can't help but wonder if she had celiac sprew and didn't know it. She had unexplained diarrhea for it seems to me 10 years. She just wrote it off as colitis.