This is the first in a series of posts where we are sharing the stories of each member of The Gluten Free Homestead team. Today John is sharing his journey to health story. See his other articles here and here.
Hi all! I have decided to write a history of my journey from poor health to finally having a sense of what it means to be well. Forgive me for its length, but I wanted to provide a comprehensive picture of what I went through over the last 29 years. Perhaps it may provide some hope for others that are my age and have experienced similar symptoms.
Please note that this is not intended or implied to be a substitute for professional medical advice, diagnosis, or treatment. I simply want to share my story and what has worked for me.
Journey To Health: The Day I Realized Something Was Wrong
It was a beautiful October day in 1986. The air was fresh, the leaves were turning colors, and the Mets were in the playoffs (the latter still doesn’t happen very often). In the late afternoon, I decided to go out for a run. I had been running about 2 – 3 miles a day for well over two years.
I enjoyed running; however, for some reason I could never seem to go farther than 3 miles without extreme difficulty. After the run I had a peculiar feeling in my chest. It was as if I was breathing in ice-cold air. It lasted for only about a minute and then went away. I forgot about it until the next day.
When I awoke the next morning, I could barely get out of bed. My legs and arms were extremely weak. I had no headache, no cough, no fever, and no GI discomfort. The only symptom I had was an essentially energy less body. I could barely walk. This was worse than when I had mononucleosis in my early 20s.
I had never been this sick before. And it was completely unexpected because I was not in bad shape. Though I was not making great progress, I did run and lift weights regularly. Somehow I knew that this was no ordinary illness.
Since I was in the medical profession, I sensed that without other associated symptoms something was really wrong.
Here I was at 29 years old, someone who had not missed a day of work for years, now barely able to summon up enough energy to go out the front door. I stayed home for two days and then forced myself to go to work. An M.D. examined me and found no overt symptoms except for my professed weakness.
He ordered a whole battery of blood tests and gave me some antibiotics. The blood tests all came back negative. The antibiotics had no effect whatsoever. My doctor had no answers for what had happened to me or what was going on.
For the next several weeks, I could stand for only 10 – 15 minutes at a time. I eventually was able to stand a little longer, but the feeling of fatigue was constantly with me.
Journey To Health: Warning Signs
Let me retrace a little to my teen and college years. As I’ve said, I’ve always tried to be somewhat active. In high school, I loved playing basketball, but I could never muster enough energy to play a continuous full court game. I tried out for the track team, but I couldn’t keep up with the rest of the team. I played JV baseball, as this did not require a lot of endurance I performed above average, but I lacked power.
Here was the reason why: I was 5’ 10” tall, but I weighed only 115 pounds. You heard that right. 115 pounds!!! What do you think my nickname was? It wasn’t that I didn’t eat much. I ate as much as everybody else. I even tried special drinks for gaining weight. Nothing worked.
Everybody said I just had a fast metabolism. The only other symptoms I had were poor gums, which the dentist said was from a lack of vitamin C (Doh! Did anyone consider maybe I wasn’t absorbing anything?), and very bad atopic dermatitis.
By the time I was a freshman in college, I was 6’ tall and had ballooned up to 129 pounds. I didn’t exhibit any of the classic signs of gluten sensitivity except that I couldn’t drink beer. On weekends, my friends and I would go out and order all kinds of pub food. All my friends would be filling up on beer, but not me.
I would get so bloated I had to stop after two bottles. If I had three beers or more, the hangover would be devastating and my stomach would be ruined for days. I have read that this is a common experience for those with non-celiac gluten sensitivity. (Yes, the drinking age was different back in the day, and we always had a designated driver.)
Nonetheless, in my junior year I decided to start lifting weights and also tried eating more. By senior year, I had gained 38 pounds and weighed in at 167 pounds. However, I still was unable to run more than a half of a mile.
Physically things were uneventful until the episode in 1986. After two days I went back to work, but physically I was never the same. I slowly felt well enough to maintain a work schedule, but I was constantly fatigued.
Eventually, I entered another less stressful profession where I could set my own hours. This was important because if there were days when I didn’t feel able to go to work, I could stay home and rest.
My Battle With Chronic Fatigue and Declining Health
For the next 7 years, the chronic fatigue continued. Sometimes I felt slightly better and could work about 4 hours a day. However, the fatigue and muscle aches never completely went away. Sometimes I would have a tolerable day, and sometimes I would be incapacitated for entire weekends.
Often just standing in church service for a few minutes was difficult. During this time I developed constant sinus problems and severe headaches. The headaches occurred every 2 to 3 weeks. I basically became addicted to ibuprofen.
Also my fingers joints began to hurt and the joints showed arthritic changes. I then began to have lower back issues. I saw several chiropractors, but there was no relief.
Around 1993 my stomach started to bother me. I would have non-specific pain traveling all over my gastric area. At the suggestion of an internist, I had an endoscopy performed. After the test he said he had seen no ulcers. At this time, I had not yet heard of gluten sensitivity, but the internist made no mention of it.
After a few months the stomach pain went away; however, my fatigue continued unabated. I visited doctor after doctor looking for an answer but found none. Every blood test came back normal except that now some liver enzymes were slightly above normal. I was sent for a liver scan, but it came back normal.
They say that people with Chronic Fatigue Syndrome should reduce the amount of stress they allow into their lives. Well, I did the opposite. By 2001, Barbara and I were homeschooling four children. I was teaching and serving at church and running my own business of 10 employees.
My family had also just moved into a new house. I was a little nervous with the move because I did not think I had the energy to physically do it. But with help from my friends we managed it.
I remember reading something Jennifer Esposito over at Jennifer’s Way wrote on her site a while back. She mentioned how she was an extremely motivated person who accomplished a lot but felt sick all the time she was doing it. That’s exactly how I felt too.
Journey To Health: Discovering Gluten Sensitivity
Flash forward to 2003. I am now 46 years old. Our oldest is now 14. We have continued to homeschool all of our children. I am a big believer that the husband should be just as involved in the homeschool process as the mom. So I made a commitment to teach our teenagers math and history and to coach their debate league.
Fortunately, I was able to control my own work schedule so I had the time to teach, but it was a constant struggle. The hardest part was taking them on field trips. Often I couldn’t go. However I was learning how to pace myself. I was discovering what I could and could not do.
Sometimes I would do too much and be ruined for days. But I was learning to live with my situation. I accepted it and pressed on, praying for answers.
By the fall of 2003, some significant things took place. Our second son, Michael, was 7 years old. He had had a particularly difficult time with vaccines when he was younger and following that time he was not a particularly active child. But now I noticed he wasn’t gaining weight. He was not as tall as I was at that age, but he weighed a lot less.
Also he seemed to lack energy. It was difficult for him to walk 50 yards without tiring. I was extremely concerned, but all the medical professionals said there was nothing wrong with him. Who knows our children better than ourselves? Something was wrong. I didn’t know where to turn.
Then at Thanksgiving, I was talking to my cousin who mentioned that his father (not a blood relation of mine) had just been diagnosed with celiac disease (CD). That was a new one for me. I had never heard of it. When he described some of the symptoms, my ears perked up. A lot of what he described pertained to me.
Coincidently, my father had also been severely underweight as a youth (5’9”, 119lbs in the army) and was never really 100% healthy. Like me, he often had fatigue. Though not as bad as mine, he said he always felt “fluey”.
My grandfather was also very underweight. My dad recalls that his father was always looking to take a nap. He died of lymphoma in his fifties.
Adopting the Gluten-Free Diet On My Journey To Health
The day after Thanksgiving, I spent hours on the Internet researching everything I could find on CD. Not only did the symptoms (except diarrhea) fit me, but they fit Michael as well.
I decided right then to go on a gluten free (GF) diet. I know I should have had the blood test first. I missed that part. But we had been to numerous doctors without help, so I decided to try it.
Within 1 month, Michael’s physical turnaround was astonishing. His energy levels, concentration, and coordination improved dramatically. Physically he could compete with his brothers and peers. He was still underweight, but he was gaining.
That was all the confirmation I needed for him. He has been on a strict GF diet since. He lifts weights, runs and boxes for exercise. I didn’t have the heart to have him eat gluten and then do a blood test, as I didn’t want to risk the possibility of reversing all the progress he had made. Also, since the GF diet works so well, he will be on it for life anyway.
If he chooses one day to do a gluten challenge, that will be up to him, but with his understanding of what gluten can do to the gut, I doubt he’ll do it.
Our entire family except Barbara was subsequently tested for the DQ2/DQ8 gene. My oldest son John, Michael, Nicole, and myself all tested positive. Peter was negative. John ended up having a positive blood test. Nicole’s blood test was negative, but she tested positive for sensitivity.
John has been GF since the blood test. He says he now knows why he felt sick every time he ate wheat. We always thought it was just gas.
However, unlike Michael, three months into my GF diet, I didn’t feel better. So one day just to see what would happen I stupidly decided to eat a wheat hard roll. Later that night I developed an extremely itchy vesicular rash about 3” in diameter on my inner thigh. I had never had anything like it before. It wasn’t eczema, it wasn’t hives, and it wasn’t a fungus.
I remembered that some people with gluten sensitivity could develop a certain type of rash. The rash matched exactly a picture of dermatitis herpetiformis. That was the last time I knowingly ate gluten. The rash healed within two weeks.
Yet even though I continued on the GF diet, I wasn’t really feeling better. The chronic fatigue, muscle aches, headaches, and sinus issues continued. Now all my fingers began to ache. Also my blood pressure began to become erratic. Sometimes it would be normal, and then unexplainably, it would spike higher.
In 2006, I saw another MD for my blood pressure. I gave him my history. He took some blood, and he gave me meds for my BP. Again the only abnormal blood result was elevated liver enzymes. My blood pressure stabilized, but I still had all the prior symptoms.
Later in 2006, three and a half years after going on a GF diet, I decided to research natural options. I tried liver, colon and candida cleanses. None really helped.
I eventually began seeing a naturopath. He did some physical testing, looked at my wife, and said, “He’s not joking when he says he is weak.” The naturopath loaded me up with a lot of supplements, gave me oxygen therapy, massage therapy, etc.
He said my GF diet was fine and suggested I continue with it. After a year, I felt a little better. I was able to come off the BP meds.
Gluten-Free Helped But Was Not Enough
By 2008, I was again experiencing considerable fatigue and muscle aches. The pain in my fingers was worse, the headaches continued, my upper back and neck were now hurting and now I was having paresthesias in my hands, my BP began to spike again, and now my heart rate began to be erratic. It would be fine during the day, and then in the evening it would jump for no reason to over 100 BPM.
I saw another M.D. for my BP. He gave me an exam, took blood, gave me BP meds, and suggested I have a halter monitor test for my heart. Again the blood test only showed slightly elevated liver enzymes.
The halter test, however, showed that my heart rate did increase dramatically in the evening but decreased dramatically to about 45 bpm while I was asleep. The cardiologist’s report suggested that I had some type of dysautonomia. My doctor didn’t know what to do.
He said I could see a neurologist, but we both knew that there is no cure for these disorders, only management. Wasn’t that great news though? My autonomic nervous system was now failing! I didn’t bother seeing a neurologist.
Many may wonder how I endured the chronic fatigue, pain, and basically miserable health. Fortunately, I had tremendous support from my wife. She bore with me from the beginning.
She didn’t complain when I didn’t feel well enough to take her on a “date”. She didn’t complain at all when she converted her entire kitchen to GF. (Yes, everybody in our family is now GF). She didn’t complain when my health problems put a strain on family activities.
She may not always have understood how much pain I was enduring, but she was always there to listen and help when possible. What a blessing she is.
To help from getting depressed, I threw myself into my work, homeschooling, serving at church, and teaching. I felt terrible, but I didn’t allow myself to dwell on it for any extended time. I also prayed, knowing that God must be using this for some purpose. If it were only to keep me humble, that was enough consolation.
While I was reading up on autonomic disorders, I found an article that suggested that light exercise was effective in helping relieve symptoms. Barbara and I decided to start walking. We started doing about 1.5 miles a day around the neighborhood.
I found I could do it with no problem. Once home, however, I had to rest for about an hour. After about 6 months though, I noticed I was feeling slightly better. The headaches occurred with less frequency, my sinus condition was a little better, and the extreme fatigue would sometimes abate for a week.
I still had muscle aches and the back aches though. Fortunately, I was able to work two days a week from home, and this took a lot of stress off of me. I don’t think I would have been able to work a regular 40-hour workweek.
Over the next few years, I made slow progress but I would often relapse into periods of severe fatigue. I told my GP that sometimes I didn’t always feel terrible, but other times I felt like I was right back where I had started. I remember one time bringing my children to a debate tournament where I spent the greater part of the first two days lying in bed back at the hotel.
Was there no end to this? Would I ever feel completely healthy? The funny thing was that on the outside I looked fine. People said I looked good. If they had known what I felt like inside, they would have been shocked.
As to the GF diet, I would have to say it worked somewhat. After 8 years, I was not as sick as I was when I started the diet. However, I was still only slightly better part of the time.
Journey To Health: The Paleo Diet & Juicing
In the fall of 2012, I was again not feeling well. The chronic fatigue was back, the gastric pain was still there, the paresthesias were worse, and my neck and fingers were painful. I was also now having thyroid and sleep issues.
In December, I had another bout of painful mouth sores but this time with a nasty oral bacteria infection. It turned my tongue brown. No kidding. My dentist looked at it and said, “What is that?” Yeah, right. I was there for him to tell me what it was!
He sent me to my periodontist who had treated me for mouth sores and gum problems in the past. I asked him what it was, and he replied, “Some kind of bacterial infection.” Since I had taken so many antibiotics in the past, I didn’t want to take anymore so he told me to come back in a week.
I decided to treat it myself with a solution of grapefruit seed extract. It helped a little but stained my teeth brown.
At about the same time, a friend at church, who had just had bypass surgery, mentioned that he was starting a new diet. He had just purchased a Vitamix and was starting a program of juicing (the vitamix is actually not a juicer but a blender, but works well for making vegetable drinks).
I had always heard about juicing but had never done it. I guess I thought my GF diet was healthy enough (I was wrong about that). Also, I had recently watched a video by Dr. Terry Whals on how she overcame MS by adhering to a special diet. I was blown away.
So I read up on juicing and started using a Vitamix. I started with a drink that amounted to about 42 ounces. This drink included kale, Swiss chard or romaine lettuce, a green apple, some carrots, celery, half of an avocado, strawberries, and 3 cups of water.
I usually drank about 30-32 ounces during the day, and Barbara drank the rest. I also decided to limit my meat intake and eat mostly fruits and vegetables. Additionally, I cut out most GF bread because of its high sugar content and also pasta because I felt it had caused me to gain too much weight.
About a month later while brushing my teeth, the brown on my tongue just fell off. That’s right. Plaques of brown material fell into the sink and washed away. My tongue had suddenly become a beautiful pink. It had not been that color in years.
At the end of February, I sought out a holistic dentist to clean the brown off my teeth. He confirmed that the infection was gone. He was also certified in amalgam removal. I was thinking about having this done for a while. Why not? It was probably one of the only things I had not tried.
I related to him my health history and he suggested before I have the amalgams removed, I see a doctor who was a specialist in chronic fatigue, autoimmune diseases, and autism. He was supposed to be one of the best in the country. I decided to make an appointment with the M.D. I was going through one of those relapses again.
Again the doctor ran a more in-depth battery of blood tests. Again my liver enzymes were slightly elevated, and he concluded that I had some type of inflammation going on in my body. He gave me a whole bunch of supplements, some of which I was already taking, and wanted to see me in 3 weeks.
He did make two important suggestions though. First he recommended that I eat more meat. While juicing, my weight dropped from 193 lbs. to 160 lbs. Second he said that I should seriously consider some kind of stress management. My body, he suggested, just couldn’t handle the stress I put on it.
Coincidently, at the same time another friend, who had just had a heart attack, suggested I take a look at Mark Sisson’s site, Mark’s Daily Apple. I found the paleo diet intriguing and the testimonials encouraging. I would not have to do too much to alter my current diet except to add in more grass fed meats and wild caught fish.
I continued to eliminate all of the “bad” grains and legumes. I also eliminated all lactose, except a little 80% chocolate and aged cheese. It was pretty much a moderate paleo diet.
By April, I was feeling much better. I would say about 50% on whole. There were days when I actually no longer felt sick. I was not ready to run a marathon. But I was definitely improved. I didn’t need the BP meds, and I haven’t needed them since. By May, I was doing even better. There were days when I actually felt pretty good.
A year later, I was feeling the best that I had in almost 30 years. Many days went by when I actually felt healthy. I would still have a relapse every several weeks or so, but it would not last as long. The good days were getting so much better.
My Continuing Journey to Health
Today, if I were to estimate, I would say that I am about 80% better from the bad days. I even commented to Barbara once, “Now I know what healthy feels like.” Those kinds of days are not always with me. But they are getting more frequent.
I no longer have a sinus condition. That’s amazing considering the winter we have had. I walk/run 2 miles, 5 days a week, and lift weights 3 times a week with my boys and daughter. My weight stays around 169 lbs. I haven’t taken ibuprofen for a migraine in months. I also rarely snore, which was a big issue.
Most of the arthritic pain in my fingers has gone. I still get some fatigue and muscle pain. But what can one expect after 48 years of damage? Oh, I also have not had any gastric issues for over 6 months (no need for Zantac anymore!). I have also learned things to do to relieve stress.
Here was a big problem however. I felt so good that I went out and cleared the snow from the driveway. The boys were yelling, “Dad, what are you doing? We can do that!” I ended up with bursitis in both shoulders. Boy, was that stupid. After all, I am 58 years old. But I feel 20 years younger!
Besides that, I’m continuing to go forward and feel I am making progress day by day. With God’s grace, I am learning more about my body and trying to do more of the things that help me and less of the things that hurt me.
Do I know if I definitively have CD? There were enough symptoms present to convince me that I’m sensitive to gluten. I tested positive for the gene and my son John had a positive blood test. We have a family history of severe malabsorption problems, and my grandfather died of lymphoma. There is a saying: if you’re in Central Park and you hear hoof beats, think horses not zebras.
There is an excellent article here about CD showing up in many forms at all ages. The great concern is when one discovers they have CD and they are in their later 30s or older, what do they do? For me, I don’t believe a GF diet alone was sufficient. Without it, I probably would never have gotten better. However, I also believe the other steps I took helped immensely.
I hope my story helps many who have felt the hopelessness of feeling ill all the time with no answers. I am currently writing up a detailed list of my diet and the things I believe have helped me regain some sense of wellbeing. I plan to share that soon!
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