History Part 5 – You Thought Things Couldn’t Get Worse?!?!?

We’re now at 2004. I have a diagnosis of multiple food allergies. I have given up all milk products, even though my doctor suggested giving up all identified allergens plus gluten. My reactions and flare ups were stable at several per month.

As the years rolled by, my flare ups became more frequent and more severe. However, this was a very gradual change, so I didn’t really notice it until a lot of damage was done. It wasn’t until I hit 2009 – 2010 that I was getting so sick so often that I went back to the doctor to figure out what was wrong. We went over all the foods I was commonly eating and matched them to the old food allergy test from 2003. Lo and behold, we had lots of matches! I was literally eating myself sick by continuing to ingest food allergens.

My doctor said to remove all the foods that had every tested positive as allergens and see how I felt. After that, if I continued to have flare ups (I did), and thought it was related to a recent food, I needed to “challenge” that food. For example, I regularly ate rice and beans. Let’s say I think the beans are bothering me. So, give up rice and beans for two weeks, and then eat it in normal amounts for several days in a row. If I react, we have a new allergen.

I spent basically two years of my life, 2010 – 2012, chasing down food allergens in the manner described above. The problem was, every few weeks, I’d get sick, name a suspect food, perform a food challenge and find that it was a problem. The list of “bad” foods that caused reactions kept getting longer and longer. I felt like I was aiming for a moving target and never hitting anything.

Also note that my reactions were getting progressively worse. Instead of just having an upset stomach for a day or two, the symptoms had progressed to bad nausea and loose bowels for a few days and then lingering constipation, fatigue and body aches lasting up to two weeks after I ate the offending food.

By the Fall of 2012, this was just getting crazy. I was constantly chasing down food allergens and still getting really sick every couple of weeks from something. I couldn’t seem to find a safe, stable, baseline diet. Without my doctor’s help, I did my own research into hypoallergenic diets and decided to embark on my own experimentation with a radical dietary change. Allegedly, the most hypoallergenic foods used in some studies, are lamb, rice, apples and pears. Since I was still a vegetarian, I settled on mostly rice and apples, supplemented with olive oil, some pears and small amount of herbs.

My goal was to create a safe dietary platform from which to set up food challenges. It turns out the rice/apple/olive oil diet is about all I could tolerate. Virtually every food I tried to introduce caused a reaction, either immediately, or within a few weeks of semi-regular consumption. Clearly, something was still very wrong. I had only intended to use the rice and apple diet for a short period. I ended up on it for almost FOUR years! Near the end of that time, I was becoming allergic to different strains of rice. At first, brown rice started causing reactions, then black rice, then medium grain and short white rices. The last rice I could tolerate was ONLY Carolina brand Jasmine rice. Any other type made me sick.

I also suffered a bad episode of anemia from B12 deficiency in early 2016. I lost feeling in my lower legs and strength in my upper legs. Although I’ve recovered from a lot of the nerve damage, I still get occasional muscle cramps and I’m sure my legs are not as strong as they used to be.

Ugh, this was not a solution!

The good news is that things begin to turn around from here. In the next blog, I’ll tell you where I went after suffering through years of rice and apples.

History Part 4 – Finally, Progress, Sort of…

The year is 2003. Is was having one of my routine flare ups. In addition to the usual nausea, body aches and feverish feeling, I had a nagging slight pain in my lower left bowel area.

My family had moved into a new home in 2000 and we had selected a new primary care doctor, but I had not seen him yet. Since my father had suffered from a perforated bowel, and I had never had pain with my flare ups before, I thought it might be good to visit the doctor. He was able to see me in a few hours.

His diagnosis was a probable minor attack of diverticulitis. Given that the fever had broke by the time I got to the doctor’s office, he figured the worst was over and recommended a high fiber diet as follow up. I was surprised he didn’t suggest any “bowel rest” or antibiotic treatment – just right to high fiber.

During the exam he said, “do you have a history of digestive problems?” I said, “oh yeah, how much time do have?” I told him my story. He listened intently for about 15 minutes and then declared that I very likely had multiple food allergies causing the symptoms. Whoa, no one ever told me about food allergies before!

We started some diagnostics with a comprehensive stool parasitology test and a food allergy profile that looked at both IgE and IgG reactivity. Let me explain what that means. The stool test examines what bacteria strains are in your poop as well as any invasive parasites like giardia, cryptosporidium, worms, etc. Food allergy testing is a strange beast and there are different ways to do it. I’ll go into this more in a future blog post, but basically food allergies cause immunoglobulins (Ig) to circulate in your blood. These can be of IgE type more indicative of immediate, anaphylactic type reactions or IgG type generally causing delayed and more subtle reactions like I experience.

What were the results? No parasites in my poop, but very few beneficial bacteria either. It makes sense that years of antibiotics killed off a lot of gut bacteria. The food allergy test was positive for an IgG reaction to a large variety of foods including all milk products, some fruits, nuts, vegetables and even sucrose. My doctor ran a separate test for gluten tolerance and he said I was not wholly gluten intolerant but heading in that direction.

His suggestion: give up all the foods that showed an IgG reaction and go gluten free. At this point in my life I was still consuming almost anything I wanted, except that I was mostly a vegetarian. My dietary staples included wheat-based grains, cheese, yogurt, nuts, a few fruits and lots of vegetables. What the doctor was suggesting was a huge lifestyle change and I balked. Little did I know that my future would hold far stricter dietary limitations.

Since I had a long-standing anecdotal history of milk reactions (recall episodes I mentioned from my early teens?), my compromise was to give up all milk products and see if that helped. It took me a few weeks to understand how many things have milk in them and remove them from my diet. After a couple of months, the flare ups went from several per week down to several per month. Hey, improvement, right!

I kind of forgot about all those other things the tests showed. You know, the poor gut bacteria and all the other food allergies. I embraced a milk-free lifestyle and moved on.

Let’s pause here on an up note, because things went downhill from there. I’ll explain more in the next blog post

History Part 3 – Why Am I Sick?

We’re now in the early 1990’s. So, now I had medical insurance and could start down the path of a diagnosis and cure, or so I thought.

First stop, my first primary care physician. He was a younger doctor at the time, listed as an internal medicine specialist. I’d been having these digestive problems for about 5 years now – not getting better or worse – not sure of triggers. I explained my symptoms to the doctor. He noted my anxiety over a lack of conclusive diagnosis, treatment or lessening of symptoms. His first recommendation was to put me in therapy. I don’t mean physical therapy; I mean mental therapy. His deduction was that my digestive issues were either “in my head” or caused by anxiety (in retrospect, the illness was causing the anxiety).

So, I began seeing a therapist. That lasted for a couple of months, at which point it was abundantly clear that the therapist was doing nothing for my stomach and was genuinely reaching to try and treat something. I simply stopped going. It was a complete waste of time and money.

I went back to my primary doctor and told him how therapy went. His solution – he sent me to a psychiatrist. Okay, I went along with that and had a pleasant hour-long session with a psychiatrist. At the end of the hour the psychiatrist told me, “It would be unethical for me to treat you. Go back to your doctor and tell him you have a functional digestive disorder.” Back to the primary doctor I went. Finally, he agreed to refer me to a gastroenterologist. (This was back in the days when insurance required a referral from your primary to do virtually anything.)

My first consultation with a gastroenterologist was, not surprisingly, inconclusive. Based on symptoms, he felt it was not an ulcer, nor did I have evidence of a lower bowel disease. His generic pronouncement was “gastritis” and he offered to follow up with endoscopy. I declined the endoscopy because no one could tell me what good it would do beyond confirming the lack of ulcer which I had no symptoms of anyway.

A few years went by, my symptoms and illness not changing much. Insurance loosened up so I could see specialists without a referral. I went to a different gastroenterologist. His questions were along these lines – “Are you vomiting? No. Are you passing blood in stool? No. Are you losing weight uncontrollably? No. Okay, then there’s nothing seriously wrong with you. Why are you here?” He at least ran an upper GI series on me, which revealed an inflamed duodenum. His diagnosis, you guessed it, “gastritis” of unknown origin. His advice, “if you find a food that upsets your stomach, don’t eat it.” Ooookay. Big help there.

At this point, I’m almost ten years into the illness. Symptoms are stable and consistent, but still flare up several times per week and disable me for hours at a time.

Western medicine had disappointed me. Let’s try Eastern. I found a good acupuncturist and went for a number of sessions. It was a really fascinating experience and talking to the doctor was pleasant and enlightening. However, after months of treatments, there was still no fundamental change in my digestive woes, so I stopped seeing the acupuncturist. Apparently, moving my Qi around and unblocking channels didn’t do the trick.

Since I was basically getting by with whatever I had and not dying from some horrible illness, my anxiety eased up and I essentially just learned to live with my weird problem. My friends and coworkers knew about it and we just had to work around my flare ups. Whenever I switched to a new primary doctor and explained my medical history and symptoms, I got strange, puzzled looks. They could see from my files that several gastroenterologists had examined me and concluded I had nothing serious. I’m not quite sure what they thought of me.

This essentially brings us up to about 2003, at which point I’d been sick for 16 years. Stop and think what 16 years of bad nausea every few days would feel like. Not so good, huh?

It was then, through mostly random chance, and a little careful selection, that I found a new primary care doctor who had clue what was wrong with me. That will be the story for my next blog post.

History Part 2 – And So It Begins…

I ended the last post at the point where something weird was happening to my digestive system after more than two years of non-stop antibiotic use. Let me explain how that unfolded.

One evening, several hours after dinner, I gradually became very nauseous and felt feverish. Those symptoms lasted maybe one or two hours, then cleared up and I felt hungry and generally fine. The next day, I ate as I normally would and felt fine until after dinner. Then, the exact same thing happened again – feverish and nauseous for an hour or two several hours after dinner, then felt better. This pattern repeated for almost a week. I did not vomit and don’t recall any bowel disturbance at that point. I was eating different foods every day, so no constant there.

I was twenty years old, in college, working part time, and without any health insurance. So, I went to an emergency medical clinic. They declared “stomach virus” and dismissed me. Uh, okay, but a virus generally doesn’t only make you sick for a few hours per day and leave you otherwise feeling fine, does it?

Well, I had a nagging feeling that maybe the antibiotics were causing the stomach upset. It is a known side effect. I called my dermatologist and told him what was going on and asked about stopping the tetracycline. He said, fine, go ahead and try it. I stopped taking tetracycline. Over successive weeks, the pattern of symptoms lessened from every day to several episodes per week. It seemed like the antibiotics had some connection but simply removing them wasn’t an immediate cure.

Even though I was getting a bit old to see my pediatrician, I trusted her medical wisdom, so I paid her a visit to consult on the problem. She had no definitive conclusion other than, yes, the antibiotics probably caused the illness.

Let’s fast forward a few years. I graduated from college and started on my career. The digestive issues continued to plague me. They hit at different times during the day – always about an hour or several hours after eating. The nausea was physically draining and I recall more than a few occasions driving to college after breakfast when I thought I’d have to pull over and be sick. The restroom at my first office was another refuge where I spent a lot of time. The episodes also sometimes induced chills (feeling feverish and chills often go together). My coworkers probably thought I was a little weird shivering in my office huddled in front of a space heater.

My employer after college was the New Jersey Department of Environmental Protection (where I’m still working!). As a state government employee, I now had good medical insurance and could start working with doctors to get to the bottom of my problem. Well, that’s easier said than done and will be the subject of my next blog entry. I will take you on a tour of how the medical profession of the 1990’s viewed an illness like mine and how it affected my growing distrust of doctors. My wife and I have a running joke that doctors are only “practicing” medicine and haven’t quite got it right yet.

History Part 1 – From Good Health to Bad

I’m not planning to write an autobiography here. I’ll try and stick to the details and milestones as they relate to my lifelong health conditions – most notably leak gut.

Growing up as a child, I don’t recall having many digestive problems. Like most kids, I had a few “stomach aches” and a few stomach viruses. Our family had food poisoning once from a family reunion. That was not pleasant. I had an ear infection at the same time and was on antibiotics for that. I’m not sure if the antibiotics helped or not, but my poisoning was not quite as bad as other family members. Perhaps I simply ate less of the offending food.

Although relatively free of childhood digestive issues, I did have a lot of respiratory infections. My parents told me that I had pneumonia several times as an infant and coughed so much that I required surgery for a hernia by the age of four. I have a very dim memory of the surgery and recovery. More memorable were frequent colds and ear infections. Since my family didn’t have health insurance, we weren’t constantly running to the doctor for antibiotics, but I certainly still took quite a few doses.

My childhood diet was not good. I ate too many carbs and too much sugar. Though we lived on a small farm and always had a slaughtered cow in the freezer, I was not much of a meat eater. I was overweight. My mom had to buy “husky” size clothes for me. Remember those?

Heading into my teen years, the combination of a puberty-accelerated metabolism and a desire to lose weight caused me to finally slim down. The quality of my diet didn’t improve too much – I just ate less. I developed an interest in practicing yoga, a lifelong habit that has served me well over the years. In my later teens, I also started some weight lifting and strength training, a practice that I also maintain to this day.

I should mention milk, because it holds a special place among my food issues. As a child, I never really liked the flavor of milk, but I used it on cold cereal or mixed it with chocolate to make it palatable. On a few isolated occasions during my teens, I felt really sick (nausea, irritated stomach, dry heaves) after consuming meals with significant amounts of milk or cheese. It didn’t happen all the time. These were just random blips and I didn’t pull the incidences together until years later. Set the milk issue aside for later discussion – back to the story…

As is not unusual, I had teenage acne. My case was fairly chronic and stubborn. My dermatologist tried various topical treatments ranging from the usual benzoyl peroxide, scrubs, washes, creams, all the way up to Retin A that caused my skin to redden and peel off. He also prescribed topical antibiotics. Nothing helped much. In my later teen years, my dermatologist prescribed an oral dose of 1000 mg per day of tetracycline (a broad spectrum antibiotic). I was on this dose of tetracycline for more than two years when something weird started to happen. Little did I know that this was the very beginning of a lifetime of digestive problems!

In the next blog post, I’ll explain what happened after I took antibiotics for several years and where I went from there.

First things first – introductions

My name is Rob. I’m currently 51. I experienced a few related digestive blips during my teen years and then developed full blown food allergies and major digestive problems at the age of twenty. Of course, we’re talking 1986, when virtually no one had heard of food allergies and there was certainly no discussion of leaky gut. I suffered for many years with worsening symptoms, and no treatment, until medical science caught up and could give me a reasonable diagnosis. Treatment options are still a bit iffy, but I’ll get to that part later.

So, why a blog? Several reasons:

  1. I need an outlet to write about my thoughts, feelings and all the weirdness in my body;
  2. Maybe my experience can help others who are undiagnosed or uncertain as to their illness;
  3. Perhaps other people can share their experiences, with me and others who read the blog;
  4. I want to document my past history and continue to chronicle my current experiences – in short, I want to tell my story – get it down on paper (electrons in this case).

Where do I go from here? In subsequent posts, I’ll start at the beginning and explain how I ended up where I am today. You don’t get as sick as I’ve been overnight – it takes time. I did a lot of things wrong and ate foods and used medications that made the situation worse because I didn’t know any better. Hopefully, you can learn from my mistakes.