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Thursday, March 18, 2010

Lupus and Celiac Disease

Wednesday, March 17, 2010

Lupus and Celiac Disease


In December 1994, I was discharged from the US Air Force. Before my departure, I failed to get the overall physical, because I assumed I was in good health. I was living in Papillion Nebraska at the time. Three years later, in March 1998, I moved to Beaverton Oregon. I got a job at a store, similar to that of Bed Bath and Beyond. In August of 1998, I called in sick, because I noticed both my arms and legs were swollen, and I felt sick on my stomach. I went to a nearby clinic, and they checked me for sickle cell anemia. Well, I didn’t have sickle cell. They did notice I was anemic. They didn’t arrive at a diagnosis, but suggested I go to the Veterans Administration Hospital for a full physical. I did.

My Doctor at the time was name, Campbell. He told me about an ANA test (Antinuclear Antibody Test). He said I am positive for Lupus. I really didn’t know how to respond, because I knew nothing of Lupus. He gave me two pamphlets to read. Of course, I threw them in a corner somewhere until I had a flare up. This was in 1998. Thereafter, I saw him every 4 to 6 months.

In September 1999, I began working with the Social Security Administration. For a time, I had no symptoms. Dr. Campbell even said, “I’m not sure if you have Lupus, because you’re the healthiest Lupus patient I’ve ever seen”. Every other year, I had  flare-ups. I had pleurisy, loss of teeth, ulcers on my body and in my mouth, weight loss, weight gain, countless amounts of drugs. In 2003, my feet swelled so much, I didn’t wear regular shoes until 2008. In 2004, Dr. Campbell had to place me on Prednisone and hydroxychloroquine sulfate, because I had problems walking and maintaining stamina and in constant fatigue. Around this time I began getting Raynaud’s Disease. Raynaud’s is a disorder in which the blood vessels spasms causing discoloration of the fingers and toes, and occasionally other extremities. In my case, it was my fingers, my breasts and my ankles. From 2005 on, I quite frequency took sick leave. I am sure my employer found it quite annoying, but I was honestly in miserable pain and maybe some depression. Around this time, I lost the will to continue.

I knew I had to go on, so I persevered. I continued to work daily for the next two years, occasionally taking Wednesdays in sick leave. This concerned my employer so much, that I was asked to limit my hours to 32 a week. The problem there, 32 hours a week, would have decreased my benefits. I struggled with this idea, still taking sick leave. I told Randy, my Branch Manager, that I was considering filing for disability in a couple of years. But that two years never arrived. One day in June of 2007, I called in sick. That day was the second day of my sick leave. Randy said, my phone message wasn’t clear, jumbled. My girlfriend, Avis, apparently had been trying to reach me. Now, Avis and I talked daily, sometimes two to three times a day. So, this particular day, I didn’t answer the phone. Avis called my Job, told them something was wrong, because I always answer the phone and she couldn’t reach me. A co-worker, Rebecca, overheard Avis speaking to another co-worker taking the call. She asked Randy, if she could go by my house. With a lot of begging, Randy allowed her to go to my place. When she arrived, she knocked, and knocked. I wouldn’t get up or answer. So, she called the Police Department and they entered my house. Rebecca convinced me to go the hospital. So, I showered and we drove to Providence St. Vincent Medical Center, in Beaverton Oregon.

After I was checked-in and examined, the Doctor told Rebecca, two more days at home, I would have died from dehydration and lack of blood flow. Of course, my medications increased to more than 30 pills daily. At this time, they noticed I had an ulcer on each ankle, and mostly all my fingers were inflamed with Raynaurd’s. My diagnosis was Lupus, Connective tissue disease and Septicemia. After they fixed me up and taught me to care for myself, I was released.

Approximately a month later, I awaken the next morning to find that I lost my right pinky finger to gangrene. After I got over the shock, I tried to make an appointment the next day to let the doctor know what had happened. I couldn’t get in within the week, so I took the MAX train to the N. Interstate Kaiser Permanente Clinic’s emergency room. They appeared more shocked than I when I showed them my finger. They told me to go back to Providence St. Vincent Medical Center. They were willing to send me by ambulance. I said no, I’ll find a way there myself. So, I called Randy and told him what had occurred. He said he would ask Brenda, one of my managers at the Social Security Administration office, to pick me up to drive me to Providence St. Vincent.

She picked me up and we arrived at the hospital. The Kaiser Clinic called ahead. So, they knew I was on my way. They saw the finger, checked me in to the same hospital room I had in June 2007. I believe I was only there a couple of days. The Doctors told me they couldn’t amputate the pinky, because my body wasn’t healing at the time. If they cut the pinky, then what if more of my finger or nub turned black and continued onto my arm. So, I had to wait until the finger fell off. I had that rotten finger attached to my hand for close to a year. I also lost the tips, just under the nail, of five other fingers.

This is how I finally lost the finger.  I was shopping at Walmart.  I wanted some ice cream.  So, I reached for the handle on the freezer,  too quickly, and the finger snapped. I yelled, cursed and cried.

In August, I filed for Disability with Social Security Administration. The SSA office only assisted in helping with the paperwork. I didn’t receive any special attention or expedience in the approval. I still had to wait the 4 to 6 months just like everyone else. But, my situation was most different than anyone else with Lupus. I almost died and lost a part of a limb. I know you’re asking yourself, why didn’t I file with the Veterans Affairs Office? I did in 2006. I was denied. They felt my Disability was not military related. But, I fully believe it was. I didn’t appeal, because I was too weak and exhausted to deal with the process. I had to deal with a lot of PTSD feelings. I am still not emotionally over some of the things I went through in the military. I read it is possible the flu vaccine may have some involvement with the Lupus epidemic. I do not know, like everyone else, I wonder.

While at home waiting to see what happens, my sister called a few times, begging me to return to Alabama. She said, I’ll take you to the University of Alabama in Birmingham. She thought if I stayed in Portland, I would die. In the back of my mind, I believed I would die. After constant requests, I decided to visit Alabama. I still wasn’t sure I would move. My sister’s ex-husband, Ronald, arrived in late July to pick me up. We took a plane out on July 31, 2007 to Alabama. One week in Alabama, we went to the emergency room at the VA clinic. I didn’t know in the South, they go see the doctor in the late afternoon. All my life, I always went in the mornings or around noon.

They checked me in and took my vitals. The top part of my blood pressure was 185. I remember the doctor saying, “You don’t look sick”. Five minutes after she left, I vomited in a plastic bag. I had to take plastic bags everywhere, because I never could hold down my food . I went through one week, everything I ate came up, even water.

They admitted me. I had close to 5 or 6 doctors and more training physicians looking after me. I told my attending physician to do whatever they must do. I spoke to soon and openly. I had a couple of doctors who did not care how much pain they caused. They just performed their job.

I had nurses who every other day, changed my bandages. Remember, the ulcers on my legs (ankles). At one point, they weren’t sure they could save the left leg. I had one technician who came in to do a special cleanse of my left leg wound. She gave me morphine, and she dug inside the wound to clean it out. The pain was awful! All morphine does is makes me sick. It did nothing for pain. But, the process saved my leg.

Both my parents are deceased. On my mother’s side, my uncle and one aunt has survived. My uncle, Dave came to visit me at the VA Clinic. He asked the nurse, if my leg was in danger. I interrupted him, and said the leg is fine. I am not going to lose my leg. Can you imagine how I felt telling him I was not going to lose my leg? I told my sister Gail, if I lost my leg, I did not want to live. I am glad I did not have that choice.

So, they bandaged me, performed tests daily, cleaned my blood with fluids and antibiotics. After about 7-8 days, they released me.

My sister set me up in one of her bedrooms in her home. She awakened me every day at 7:00 am to ensure I took my medications, and she brought me coffee.

While recuperating at my sister’s house, I decided if I wanted to live, I should move to Alabama. Mostly, because UAB (University of Alabama in Birmingham) was willing to work at my survival. I didn’t really think Providence St. Vincent had a concern one way or the other. They kept asking me, "How old are you?"  As though my age and race was a factor in saving my life.

In September, I went back to Beaverton Oregon to prepare the move. My sister’s husband and ex-husband flew in to assist me in packing and moving. I think it took them 4 days to pack me up. They drove my household items and I flew back.

When I arrived at the Birmingham Airport, I noticed there were blisters on my left thigh. My sister came to pick me up. I asked her to drop me off at the VA Clinic. I was diagnosed with Shingles. This was my second bout with Shingles. I didn’t understand why this happened, because I didn’t feel stressed.

In October 2007, the butterfly rash appeared on my face. I have had Lupus since August 1998, and this is the first time I’ve had the butterfly rash to appear. I felt so scarred. I couldn’t understand why this happened, now! I had been taking my medicine religiously.

Well, I’m living with my sister. I knew that couldn’t go on for long. I had to wait until my disability came in before I could move into my own place. Also, I was still recuperating. Late December, the money came in. However, I didn’t realize this until early January 2008.

Through a disagreement with my sister, I moved out. Moved in and moved out again. Now I’m on my own.


My Lifestyle Change

One day, I was surfing the internet. Looking for thoughts on loosing weight. I came across an excel file,  http://www.brianmac.co.uk/nutrit.htm.  In this file, you can post your weight and it will tell you the amount of carbohydrates, fats and proteins you should eat daily. I put in my current weight. I didn’t like the amount of grams the site presented. So, I thought if I wanted to be 120 pounds, I should eat the amount of carbohydrates, fats and proteins for a 120 lb. person.

On February 3, 2010, I began charting my scale at 275 grams of carbohydrates, 65 grams of fats and 65 grams of proteins. Guess what, within one week, I began to lose inches. I don’t have a weight scale, so I don’t know how much weight I have lost. But the weight was coming off slowly. I wasn’t hungry and I ate what I wanted as long I stayed within my scale. Yes! The stomach went first.

I created my own excel file to chart what I ate and the number of grams. I just printed the sheet and wrote down the items, for instance;

Name      Carbohydrates      Fats    Proteins
Grits         35.00                  0.05      4.00
Cream       0.00                  10.0      18.0
Coffee       0.00                    0.00      0.00
1 Egg         0.00                    5.00      3.00
Total ?

Today I am still on my diet.

One evening, I picked up my remote, scanning through the channels on the DVR. I came across a Live Concert with Daryl Hall & John Oates to appear in a future showing. I set the DVR to record the show.

Later, I went to play the recording and it was something else. I was about to delete it, but I decided to watch it for while. Some of what I heard interested me.

The show was called “Change Your Brain Change Your Body”, by Dr. Daniel Amen. You can buy his book, by the same title. His briefing focused on weight loss. He believes to have a healthy brain, requires a healthy body. To do this, you need to change the way you think about foods and your eating habits.

Dr. Amen said, fish oil and exercising simultaneously, results in substantial weight loss. According to him and Researchers from the Harvard School of Public Health, having low levels of Omega-3 fatty acids is one of the leading preventable causes of death. Also, low levels of Vitamin D, tells the brain you’re still hungry. To remedy this, take Vitamin D3, or SaMe and Fish oil. Just like the commercial about "High Fructose Corn Syrup". High Fructose Corn Syrup, contains an enzyme that tells the brain, you are still hungry, as well as, causes huge spikes and drops in your blood sugar.   "HFCS has been  linked to insulin resistance and elevated triglyceride levels (a heart disease marker)". (Sports Drinks - Are They Safe?' by Dr. William von Peters N.M.D. Ph.D, 2004).

The reason I decided to write this paper, because Dr. Amen discussed "Hidden Food Allergies,"  and this created some thoughts into Celiac Disease.

He said food allergies to milk (casein) and wheat gluten can lower the flow of blood to the brain and judgement. Not that I’ve ever been clear thinking, but I wondered about my immune system and Lupus. Food allergies and Celiac Disease affects the immune system.

Years ago, I remember telling Randy, my SSA Branch Manager, that for some reasons, the nutrients from my foods wasn’t getting to my body. He said, “Why do think that is?” I said, I do not know. Because of Dr. Amen's broadcast, my curiosity peaked.

Celiac and Lupus Commonalities

I went to the internet to find symptoms of celiac disease. I found a site, http://www.celiac.com.  Most of the symptoms named were gastrointestinal. Other symptoms were anemia, Crohns disease, neuropathy, skin rashes, joint pains, muscle aches, fatigue and vitamin deficiencies. One thing that prompted my amazement was that Celiac Disease can result in the malabsorption of nutrients in your blood stream. This is exactly what I was experiencing, exactly!

With Lupus, my symptoms are neuropathy, skin rashes, joint pain, muscle aches, fatigue, anemia,  and vitamin deficiencies.

I don’t think Lupus is Celiac Disease, but I do think Lupus is the result of Mercury Toxicity from dental fillings or mercury handling.

I have this girlfriend, named Rebecca. She worked with me at Social Security Administration. She purchased this book, “Eat Right For Your Blood Type”. She is also a health nut. She told me years ago, to stop eating Gluten. Of course, I did not listen.

I realize, in order to live with Lupus, I must alter my eating habits, my lifestyle.

So, a week ago, I decided to stop eating Gluten. Also, I have discontinued eating sugar, milk (casein), caffeinated coffee, soda (pop), and alcohol. I read red wine is good for you. I will continue to eat eggs and meats, but I will purchase meats without vaccines and hormones. I would also avoid foods with ingredients you cannot pronounce. In lieu of sugar, I will eat raw honey, maple syrup, homemade root syrups, ghee, decaffeinated coffees and I will make my own ginger ale. Did you noticed, I said ghee? Well ghee is butter, but clarified butter. In ghee, the casein proteins are boiled out. I now drink almond milk, almond cheeses and nut butters. Also, you can buy a bread maker and buy your Gluten Free flour mixes from “Bobs Red Mill,” in Portland Oregon.

I thought the change would be hard. It was not. I am happy and in a better mood than I’ve been in a while. Before, I didn’t have the stamina to sit down and write anything. I was too exhausted to make the effort. Dr. Amen says we should eat right to promote a healthy brain. If you have no other reason to eat right, other than weight, consider what your brain must look like. Think! If I can re-grow my hair, my skin is softer and less dry, I can walk straight without pain in my joints, I can walk one mile, Ace that exam, exercise and live! If my body was failing me, then my brain was getting toxic messages. I now know I must change my body to change my brain, to change my life.


"Bad Brain Foods

Alcohol
Artificial food colorings
Artificial sweeteners
Colas
Corn syrup
Frostings
High-sugar "drinks"
Hydrogenated fats
Junk sugars
Nicotine
Overeating
White bread" 
(http://www.increasebrainpower.com/brainfoods.html, 2009)


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