My Mother’s Struggle with Celiac Disease
Mother’s day is coming upon us, and this is the first Mother’s Day I will spend without my mother. I have tried to write about my mother’s and my struggle with celiac disease before, but it is a hard story to tell. I’m going to try again, in the hopes that someone out there who has been through what we have, will gain some nominal comfort in not feeling so alone with their experience.
My mother showed absolutely no symptoms of the disease until much later in life. That’s the crazy thing about celiac disease; you can carry it for years, and never show symptoms. Many things can trigger it. In my mother’s case, I don’t know what the triggers were, but I suspect major life changes when she gave up her oboe career to spend more time traveling with my Dad in his retirement. Music was her greatest love besides her family, and I think it created an emotional hole inside of her that couldn’t quite be filled by guitar, choral conducting and recorder.
In any event, my mother started suffering at the age of 56. It started slowly. She began to have problems with stomach aches and occasional unexplained vomiting. Then she got shingles. They worsened and her doctor could not find the source. Then the exhaustion started to set in. Then came mental confusion and memory loss. This went on for several years. Her condition worsened and worsened, and my father became more and more desperate for answers.
I still remember the panic call that came one night when they were on their way to the Symphony in Baltimore. My mom had started shaking and vomiting violently. I rushed there to a street in East Baltimore and we took my mom to Johns Hopkins. We checked her in and she was unconscious and non-responsive. It was terrifying, especially since my mother had always been the picture of health, very active, always happy and productive.
We then sat there as she was ignored for five hours, because someone had been stabbed and took greater priority. After five hours in an unconscious state with blankets wrapped around her in the waiting room, she slowly revived. As she came too, her famous broad smile beamed on her face, and she began slowly dancing around the waiting room with the blankets spread wide like wings. This was the first sign my father and I saw of her future with dementia as she gracefully danced around the waiting room with a beautiful smile.
We left with no explanation about the incident. She continued to decline. Finally one fateful day, my father called me some time after that alarmed because she could barely walk, and could no longer open her mouth to eat. I rushed to West Va, two hours away and found her passed out and barely able to speak. We rushed her to the hospital and they found that she had pneumonia. Her doctor had been telling my father to ‘wait out’ her fever of 104 degrees for over a week. That’s when I discovered how poor my mother’s care was. The doctors at the hospital where she recovered couldn’t believe her condition, and that she had been under the care of a doctor. They said she narrowly escaped death.
They then released her 24 hours later even though there were some very strange incidents of her defecating in a chair. I explained that that wasn’t normal for her, but they had noticed her mild dementia and made many assumptions. It didn’t matter how many times I said something else was wrong, they insisted on releasing her in very poor condition. Again, I noted how poor her care was to my great frustration and worry.
My father had a close relationship with her doctor because they lived in a small town on West VA where everyone knew everyone. He was blinded by their relationship and did not see what I saw, despite her near death at her doctor’s hands. He was eventually fired from the practice and the reasons remain away from the public eye to this day.
After my mother returned home, she went unconscious and her heart rate dropped to extremely dangerous rates. She was rushed back to the hospital with gangrene in her intestines, because her pneumonia had gone on so long, and she had become so dehydrated, that a piece of scar tissue from her childhood appendectomy had broken loose and become lodged in her intestine.
I think I was screaming ” I TOLD YOU SO!” inside of my head to all of the doctors and nurses who had insisted that she be discharged when I told them over and over that something wasn’t right about her condition. This taught me how many medical professionals disregard the information that those closest to patients have to offer. Later on, my family would do the same.
It was during this time that I saw my mother’s body semi-naked, since I had to help change her because she was so weak. I was shocked to see her skeletal form. She was literally starving to death. Her weight, on a 5’4″ frame, had gone down from 120 lbs to 85 lbs.
At this point, my father and I were afraid we were going to lose her. We took her to another doctor who erroneously diagnosed her as hypoglycemic. This actually helped stave off some of the progression of the disease because she stopped eating foods like cookies, cakes etc, which lowered the gluten in her diet incrementally.
I am a spiritual person and I do believe that there are those who watch over us and help us throughout life. Metaphysically-oriented people called them ‘guides’, Christians call them ‘angels’. Whatever the name is, someone stepped in and led me to buy a magazine that was then called Alternative Health. There was an article in there about celiac disease. On one page, it listed the common symptoms of celiac disease. My mother had all of them. I drove to my parents’ that same day house and showed the article to my father. I was convinced deep down inside that I had discovered what was wrong with my mother.
My father was not convinced, since he believed in her doctors and didn’t understand how they wouldn’t have diagnosed her with this disease already. This trust in the traditional medical establishment, is, in my opinion a chain that holds people down, afraid to believe in their own ability to research and find answers to their own illnesses, get second opinions, etc. But despite his feelings, he was desperate to try anything that might save her life. So, I began doing research online to find out what the cure was. I started teaching my father how to avoid gluten in my mother’s diet. I made mistakes along the way, for example, feeding her oatmeal. She told me it didn’t agree with her the second time I gave it to her, and pointed out that she had to run to the toilet after eating it. I found out that I had missed that grain in my research on gluten sources. Even so, within two weeks, my mother had gained five pounds, the first weight gain in several years.
Within a few months, her weight was back to normal, and she had regained her energy, ability to walk and most importantly, her happiness. The worst was over. But what stuck with her was the short term memory loss and some mild dementia. What happens when a celiac eats gluten consistently, is that they starve to death, because the villi in the intensive is destroyed by their own immune system which goes awry. So, vitamins and other beneficial ingredients in food are not absorbed, and the food literally passes right through their body.
Many cells in the body can heal, but not the cells in the brain. When brain cells die, they are gone forever in adults. So, parts of my mother’s brain had suffered, as the rest of her body had suffered. Her dementia progressed over the years. She still had some good years, but they were hard. My dad’s frustration did not lend well to being a sensitive caretaker, and it was very hard on both of them emotionally.
My father eventually lost his mind from the stress and exhaustion, started taking anti-anxiety pills (Adivan) at doses that are completely illegal, as it is a controlled, narcotic substance. His doctor at the VA who was prescribing this extremely dangerous medication was fired, (another one), so as a family, we had no way to file a malpractice suit or get answers to how he had medically encourage my father’s addiction. Adivan in high doses is very dangerous and addictive, especially for older people, and can cause stroke. My father , who had never had more than a glass of wine or sherry, and had never used drugs of any kind, became psychotic, bi-polar, depressed and had several mini-strokes. During this time, people in his town knew that he wasn’t mentally well and began to take advantage of him. I spent a lot of time driving back and forth to West VA to try to keep these issues at bay. Eventually a caretaker was arrested for stealing thousands of dollars as well as pills, which she sold in this small town. Small town America has many problems with addiction, especially to legally prescribed drugs. She only recently was paroled.
At this time, he became a danger to my mother and my family had to take her from his home. He had an altercation with a state trooper when a caregiver in the home called an ambulance for my mother against his will. While he was detained, we drove down, packed up her things, and took her to Baltimore to care for her in my home. Since my father was her legal guardian, we had to go court to take guardianship of her legally from my father. This was the most devastating event our family and my father has ever endured and the scars run very deep because the decision on who should take over guardianship created a Great Divide between two different camps.
Unbeknownst to me my brothers decided that I was not fit to be my mother’s guardian. The debate centered around only a few issues, one of which was whether my mother was a celiac. Since she had never been diagnosed by a doctor, they believed that she was not. This debate created a terrible divide between members of our family. For any of you who have struggled to get a conclusive test, you understand this issue. It’s a crazy disease to diagnose and eternally elusive for some.
As a result of this power struggle, I lost my relationship with both of my brothers and with my mother’s sister. My father and I were seen as somewhat deranged in following through on our belief that she was a celiac. It didn’t matter that her health had improved so dramatically on a gluten-free diet. It didn’t matter that her weight had gone back to normal, and her rashes had gone away. No one in the family had seen her skeletal her body except for my father and me. But no matter how much first-hand knowledge we had about her condition, no one would listen to us, or believe what we said.
It still brings crocodile tears to my eyes even now, years later, to wonder why neither of us was seen as intelligent enough to have deduced from research and evidence, a cause for her disease. Time and time again, I read about people that have taken their health into their hands, and had miraculous recoveries. In the alternative world, this is expected and accepted. Some of us feel that we are seen as cracks and loonies by main-stream America. This can be very isolating, since there is often a sense of fear that there will be repercussions if we act on our beliefs.
Our trust in the power of self-discovery and treatment for health issues, can lead a modern day witch hunt if you will. I just read a very recent story about a couple that had their five month old forcibly removed from their home because they decided to get a second opinion on a major surgery that they didn’t believe their baby should have, or even needed.
In our case, my family felt that an unnecessarily restrictive diet shouldn’t be imposed on someone who clearly didn’t have celiac disease, since doctors were saying there was no such disease and the health freaks were making it up. I , on the other side of the fence, was terrified at the thought of what would happen to my mother if my family were to take over her medical care instead of my father and me. They were prepared to do what’s called a ‘challenge test’, even though the premier Celiac disease specialist in the world (right here in Baltimore) had told them that it could trigger a devastating auto immune response that she might never recover from at her age, and in her weak condition. But since they truly believed she was not a celiac, they didn’t see themselves as possibly risking her health by requesting a challenge test. They believed they were righting a wrong caused by my father’s and my erroneous belief that she was a celiac.
This ended us all up in court, and after a contentious and bitter effort to paint a bad picture of me in court, which, thankfully, the judge didn’t buy for one second, it was decided that I would share custody of my mother with my eldest brother. Again, an angel had stepped in and led me to a lawyer who would essentially, help me save my mother’s life. Unbeknownst to me, her toddler was a celiac. I still remember the chills that I got when after I had tearfully explained everything that had been going on and the pending court trial, she quietly said, ‘my son is a celiac’ She told me that he had gone through many medical procedures to trying to prove it’. She also explained how hard it is determine whether someone is a celiac, because even the ‘gold standard’ , which is an invasive medical biopsy, can offer negative results when all evidence points to the contrary. She said, ‘I can help you’. At this time, many doctors were not familiar with the disease, so for me to have found the only lawyer in a small town whose son was a celiac was a miracle.
Before the trial even began, I knew that they would be offering us dual guardianship. From the very beginning, after I learned my brothers’ position, I requested co-guardianship. I first asked my brothers if they would like to share guardianship. They refused, and also believed that that was impossible. Sometimes, a great lawyer can really help you. Mine knew that co-guardianship was a possibility, and the judge saw that as a viable option to work within the discord that my family displayed concerning my mother’s care before we ever got to trail. The circus that transpired afterward in the courtroom, which has led to so much heartbreak for me, had no impact on the results. This made it all the more tragic. The judge was a very wise man. One result from his decisions was that the family was remanded to obtain a genetic test that would prove once and for all whether she was a celiac (up to a point, since even that test is only an indicator as I was explaining before).
The test came up positive. When we met Dr Faraso to receive the results of the test, he carefully explained my mother’s condition, and also informed me that I was a celiac. My father and I never received any acknowledgment that we had been correct all long, or that we had saved her life. I never received an apology from my family for that terrible day in court meant to keep me from being guadrian of my mother. I don’t know if we will ever be able to heal. Things are still extremely strained even after attempts to regain some closeness after a few years of silence and distance.
My father’s depression and psychosis reached new levels after he received the news that my mother would not live with him anymore. The emptiness in his heart from her absence, and the devastating betrayal he faced when his children conspired to remove her from his care, combined with the psychosis from the Adivan accelerated his mental illness. Eventually his condition worsened to such a degree that he began having hallucinations that were so real that he became terrified. These daymares drove him away from his home, and he had a terrible car accident at four in the morning on a dark road in the mountains, trying to escape what he thought was a monster bear that was chasing him.
The accident, though terrifying, did not prove fatal and gave my family the opportunity to have him committed to the mental ward of the VA. He is fully healed after a long long recovery that included a year of black, black depression that he couldn’t shake. The care during his withdrawal lasted a month. Every day, the VA tried to set him loose, and there were five of us calling insisting that they keep him for at least a month (against his will) until he could fully withdraw from the Adivan. From there he spent several years going through protocol after protocol to try to find a medical way to treat his depression.
Some part of me believes that after everything he went through, it is simply normal to be depressed and feel somewhat crazy, and that in the end, only time really heals those wounds. My father’s concept of how his life was going to go, never included what happened to my mom. He envisioned a beautiful retirement spent traveling around the world, fishing, camping, biking, attending concerts, parties with friends and enjoying the mountain home that they had built together. You can’t get those years back and you can’t start over. My father is in his eighties now, and is holding his own. He was healthy and vibrant when my mother’s disease started to take over. After those awful years, he is doing fabulously well, is taking Tai Chi, drumming his djembe again, attending lectures at his retirement village and visiting with my sons and me regularly. He’s now a joy to be around and has regained his sense of humor and ability to connect with other people.
I know that medications also played a part in his recovery and I’m very grateful for his health and well being, but if my mom hadn’t had Lorazipan to calm her down when her condition made her agitated, my father may never have ended up taking Adivan and doubling up with her Lorazipan, then getting hooked and getting more from his doctor. They are identical drugs with different names and are narcotic in nature, similar to Valium. Lots of maybes in there but my opinion of the medical establishment in their town couldn’t have been worse. What was evident, is that there were some great doctors and nurses, and then some really awful ones. Had I simply ‘followed doctor’s orders’, I guarantee my mother would have perished ten years ago. Luckily, something in me has never wholly trusted my health to a professional. I have met amazing doctors and nurses, but I don’t believe our care should end in anyone’s hands but our own. I applied that mistrust to my mother’s care and this helped me to stay vigilant and look for alternative answers and opinions.
One benefit to this experience was that I learned that I was a celiac. In my thirties I started suffering very badly from this disease and had no answers, or insurance to find them. I was able to work for, at the most, two to three hours a day. With two children and a business to take care of, my life had become miserable. I faced incredible exhaustion, mental confusion, memory loss, constant itching all over my body, severe, and chronic respiratory problems, and other issues. The exhaustion was the worst. I had experienced it as a teenager, and had been mid-diagnosed a hypoglycemic. A holistic doctor in Baltimore finally recognized that it was a food allergy and said, very simply, to start removing the top four allergens from my diet, one by one, for two weeks each, until I saw a change for the better. The ones she mentioned were soy, dairy, corn, and wheat. I quickly figured out that wheat was the most prevalent of those four in my diet, and removed it completely for two weeks. I was overjoyed to get my health back. For the most part, this ‘cured’ me because the other gluten-containing grains (rye, barley and oats) weren’t ones that I cooked with or ate very often.
It wasn’t until the meeting to receive my mother’s genetic test that I was told by Doctor Farano, that I was a celiac. We then realized which of my mother’s relatives had had the disease; my great Aunt. She had always been excessively thin, died fairly young, and had constant shingles (painful rashes all over her abdomen). I now wonder how many people throughout history and even now are suffering from a completely curable disease.
I don’t know if other families have experienced anything quite so horrific as this story. I hope not, but I do hear people tell stories of families becoming divided when a parent becomes ill and needs decisions to be made. My mother passed away this January 2013. I had watched her decline, yet still enjoyed her lovely presence throughout the years, so it was not devastating to me when she passed on. Her love and her joyous spirit are still with me every day. On my first mother’s day without my mother, I will say thank you to God, for the life saving information that was shared with us by the powers that be. For the courage that my mother taught me, which carried me through a battle I didn’t know I was prepared to fight. And for the many years we shared, albeit in a less glamorous, nursing home environment.
I will say, to anyone that is suffering from any illness, do your own research. Don’t stop with what one person, one doctor, one family member tells you is true. Find Truth yourself. It may make sense, it may not, but just don’t be afraid to try something different. Never stop learning and researching. It may one day save your life.