Disclaimer. This is not meant to be any sort of recommendation or anything of that nature. Go to a doctor for that kind of stuff. This is just my personal experiences.

For many years now I have been sick.  I have celiac disease.  In short when I eat gluten, my body attacks itself and damages my intestines. There is no cure.  This is largely self diagnosed with the help of a doctor.  I did not go through all the tests out there, but yes its rather certain I have Celiac Disease.  If it’s actually something else, well I don’t know that it matters, the story, symptoms, and results are the same.  I write this as a statement of what things are like for me, these are my experiences.

The Basics.

For people with celiac disease when gluten is eaten, the body overreacts to the protein gluten and attacks the villi of the small intestine.  This can lead to a host of symptoms and medical problems.

Gluten is a protein found in wheat, barley and rye.  Those are the most common sources, there are other less common sources.

If you are interested in finding out more about the medical definitions and specifics of celiac disease then you should check out https://celiac.org/ and https://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease#1

Treatment

There is no cure. The only treatment is to avoid gluten in diet. 

What Peak Sickness Was Like

For years I was sick on and off.  This started to become more noticeable in my early twenties.  I would get sick when eating at restaurants.  I was also more tired and sluggish than before.  This kept getting a little worse over time.  That’s what made celiac disease hard to catch, it got worse slowly and the patterns were hard to recognize.  This continued to progress until I reached a level of peak sickness.

For me peak sickness was like having food poisoning or stomach flu.  When I would eat I would get sick.  Sometimes this did not happen, but it happened a lot.  I was sick with your normal food poisoning symptoms almost every single day of my life.  There were a few days where I wasn’t super sick, but for the most part it was daily.  When this sickness would hit, it could last a few minutes, or all day.  This was the biggest struggle, there were also many other symptoms that manifested.

Brain Fog.  When my symptoms act up and I get sick, I often get brain fog.  When I was at peak sickness my brain was just fuzzy.  I was not as sharp about things as I had been in the past.  Some days it was hard to do much thinking at all.  This kind of hanged over me at all times, some days better, some days worse.

Trouble with Seasonal allergies.  Before I went gluten-free, I had lots of trouble with your normal seasonal allergies, things like pollen, mold, dust, flowering trees.  I took monthly shots for over 20 years to deal with these allergies.  As I got sicker from the celiac disease these got worse.  For example when I was at peak sickness I had a stretch where my eyes were burning so bad from allergies that my shirt was soaked in the front because I cried all day long.  This went on for several days.  I was miserable many days of the year because of the normal allergy symptoms all sorts of people get from seasonal type allergies.  These have all gotten far better after going gluten free.

Skin problems.  Before I went gluten free with things, I had nasty skin.  My skin was having so many problems that my forearms were starting to crack and bleed.  This really didn’t bother me much, because I am not a pretty man.  I ignored this mostly, because I was doing the tough guy thing.  It was still a sign that things were not right at all.

Abdominal pain.  At some points I was having sharp abdominal pain and cramping.  If this had continued it might have become debilitating to some degree.  There were a couple days where I had gotten to the point I was laying in bed in pain, just trying to ride it all out.  If I had not gone gluten free, I have no doubt things would have gotten worse. 

Fatigue.  When I was at the peak of my sickness, I was always tired.  If I did a lot of work on a given day, I would spend the next day laying around sleeping as much as possible.  After I went gluten free I quit laboring so much in in life.  This was very pronounced in the gym I could instantly hit the elliptical machine much longer and harder.  The gym was a good measuring stick because it wasn’t based on perception, it was based on real measurement.

ADHD.  They say celiac disease can be a cause or contributing factor of ADHD.  I have been diagnosed with ADHD.   I can’t speak to whether or not celiac disease is the cause of my attention issues.  It is there though so it’s included for the sake of being exhaustive. 

Bleeding.  Yup blood was showing up in the toilet.  That’s always fun!  Luckily that is no longer happening.  That is a new kind of scary, because if you look down in the toilet and see blood there is something really bad going on. 

There might have been more things going on due to the celiac disease.  Finding true causes to everything is a bit hard, so this is all my best guesses.

Note: Not everyone experiences the disease in the same way.  An individual’s symptoms may be lesser or greater in severity.  They could also experience other symptoms as well.  I personally never get headaches, but I know migraines are common with celiac disease.

Going Gluten Free

In March 2013 I went completely gluten free with my diet.  A lot of the symptoms got better.  Some of them have still exist.  I do not have days off from the diet.  I do not take cheat days.  I have not eaten any gluten on purpose in 6 years (it can sneak in, more on that later).

Even though I am gluten free, things can still get triggered up.  I am not healthy, I am not cured, there are still problems from this disease.

Triggers

I can still get triggered up and be sick from the celiac disease.  This happens often, in fact there often more days in a week where I am sick than healthy even after 6 years of being on a gluten free diet.  So there are a few triggers that seem to cause problems.

Gluten is the main trigger I have to be careful about.  I don’t purposely eat gluten but gluten can sneak into food lots of ways.  I don’t know how much my body can handle.  Is one crumb too much? Or will that not cause a problem?  I don’t think there is any good answer to that.  Cross contamination is a constant worry.  Even using a wooden spoon that was used with gluten things can spread it to non-gluten foods.

There are times perfectly safe food can just make me sick.  I have developed some issues with dairy as well to the celiac disease.  I don’t know if they are related.  It seems as though anything I eat might make me sick, every meal is a roll of the dice.  Eating too much food makes me sick and stirs things up too.

Stress and fatigue also have an impact.  These things make me more susceptible to having problems.  I need to be careful about sleep, and just relaxing.  This means there is a price to be paid for staying up too late at night and other things.  That seems to be how things feel a lot of the time to me, there is just a higher price to be paid for things.

Where Things Stand Today 6 Years Later.

So six years into eating gluten free and trying to manage celiac disease best I can where do I stand?

The food poisoning feeling and symptoms is still there.  At the time of writing this, 3 of the last 4 nights I have been sick from the celiac symptoms.  I am sick often, and have to assume I may be sick at any given time.  This is not near as bad as it was before going gluten free.  I have “good days” now, and before there weren’t really any good health days.

I get hit with the brain fog pretty often too.  When the stomach and intestinal problems start, I usually get pretty fuzzy in the head for a little while. 

My attention span is not what it used to be.  I have trouble thinking like I used to as a teenager.  It seems like that horsepower just isn’t there anymore.  I don’t know if that is just perception or reality.  As a teen I used to play in all day competitive chess tournaments, I couldn’t dream of focusing like that anymore. 

Lastly there are other just weird problems that are probably not really problems at all.  For example alcohol really hits me hard now.  I am a super lightweight when it comes  to drinking.  Last time I drank I had 3 small glasses of wine, and that was enough to make me super drunk and silly.  I weigh 240 pounds, this has never been a problem before, but now it seems my body doesn’t process alcohol well.  It seems like the celiac disease might be to blame at least in part.  My body has become weird.  My body just does not react like it is supposed to in many situations.

One thing that has definitely gotten better since going gluten free is my response to seasonal allergies.  They barely affect me at all anymore.  I get a runny nose now and then, and things like that, but its not a bit deal.  I have gone off the allergy shots I was taking and have noticed no negatives to that.  I used to notice allergies a lot in the spring and fall, now I don’t have that problem to such an extreme.

Overall things are better, but not “good.”  I am still sick a lot.

Repercussions. 

So that is all the nuts and bolts of what is going on with my health at any given time.  There is the other side of how it complicates, changes, and impacts life.  My entire life revolves around managing the symptoms and handling being sick.  This governs every decision in my life at this point. 

Anywhere I am there is a good chance I end up being sick.  Anywhere I go I may end up camped out in the bathroom for some long period of time.  So do I want to be camped out there?  There is no waiting until later, the sickness comes up on me fast.  I can go from feeling fine to being in rough shape in a matter of minutes.  This impacts every area of my life.

Career.

Celiac disease has really hurt different aspects of my career as I try and establish it.  Being ill limits me.  It does not stop me from being able to do work, or from doing good work.  It does make things more complicated and convoluted.  I just do can’t or don’t feel comfortable doing things in the same ways other people might. 

I spend a lot time sick and in a state of impaired general performance.  At some jobs this can be a problem, at others it is something that is manageable.  A job where there is lots of time pressure and tight deadlines is not going to work for me.  I just cannot honestly commit that I will be able focus or perform at any given point in time.  Ask me to do something in the next 4 hours, and it just might not happen.  If I am having a flair up of illness, I can’t help it.  Delivering work in a timely fashion in most cases, I can do that. 

Since I get sick without warning and at time.  I cannot really commit to being in a given place at a given time for any period of time.  I can for the most part be where I am saying I am going to be.  But things like being stuck at a machine in a factory, or a cash register in a store, that is just not possible.  It will not be long before I have to shut things down because I am sick.  This limits the kind of jobs I can just go get to pay the bills.  I can’t just go grab a random person type job.  It just won’t work for me.  Lots of jobs are not cool with you walking away from customers every single day because you are sick. 

With these problems and my rules around food and that kind of thing, I become the “weird guy.”  People do not accept the weird guy in general.  People act really weird when I am someplace and I don’t eat anything.  They can act like it’s some travesty I don’t eat their snacks.  This cannot help with a job.  Think about all the jobs that have meals as part of them.  I can’t do client lunches.  Meetings where you are given a box lunch, well I can’t eat then either.  This is more of a problem with everyone else than me.  I can skip a meal.  This kind of thing is just a disadvantage, in some ways that is what celiac disease is, a list of disadvantages.

Social

My social life has taken hits because of being sick.  If a social gathering revolves around food, I do not want to participate.  There is also the issue of getting sick, I don’t want to be sick in the wrong places.  Think of all the places you wouldn’t want to go if you had a stomach flu, I don’t want to go to those places either.  The thing is, I have this going on every day.  From a certain perspective, this makes me more distant, there are just things I don’t do that other people do.  It starts to add up over time, and make me feel as though I am a part of things, but not all the way a part.  I feel a bit separated from other people, it’s just not fun.  Time and time again I am presented with social situations, that I would rather just opt out of. 

I have been invited by friends to meals at their homes.  I have declined.  I have two options if I go show up.  The first is don’t eat anything that might make me sick, in many cases that means eat nothing.  Eating nothing at a dinner make me look like a weirdo.   I could also talk to them ahead of time and make the entire menu about me.  That makes me feel like a jerk.  They are planning to do something and I’m saying “hey do my thing instead” when they already had a menu in mind.  There is also the issue of their ability to pull off a truly gluten free meal.  It does take a little learning, and there are tricks.  So I have to trust them not to mess up the food preparation.  It is really hard to get right at the beginning, so is the risk really worth it?  I have to ask myself that.  The result is I just decline invitations.

You don’t realize how much food is everywhere, and how many social events have food as component.  I don’t feel like I get to participate in these.  Go to a conference or meeting where they serve meals? I don’t get to eat that day.  I have snuck outside at so many events, gone to the parking lot, and ate food from a cooler I packed by myself.  I did this at rehearsal dinner for a friend’s wedding, I still got sick and have to leave early.  It’s not a big deal, but its depressing.

Its depressing when I look at the affect being sick has on the ideas of dating and marriage.  How much of dating revolves around food?  Like I would have to be weird on a date and be like…. “Yeah but we can’t eat.”  And besides that, what reasonable lady would want to date a person that is sick all the time.  And even if they wanted to date me, why would I want to put this nonsense on another person.  As sick as I am, I can’t rationalize doing that to someone else.  I am also likely to get sick on a date.  So I would likely have to just leave and go home because I am too sick that night.  I ask myself if I can’t even make it through dates, how in the world could I think about things like marriage?  It feels as though there is no real path for dating to even make sense.  It feels as though even the possibility is eliminated for me.  I just choose to opt out at the moment of that entire part of life, that may change in the future, but I doubt it.

Opting out of all social events and things is what I want to do.  I know if I opt out then I know I lose friends, friendships become weaker.  I force myself to go do things, even though I know there is a price of discomfort to be paid.  Still despite efforts I become more isolated, and that is not any good.  The decisions of what to do are not fun or easy.  It is like I am constantly playing mind games with myself. 

Mind Games

There is no doubt I am sick, the real question is to what degree and that is where the mind games of celiac disease starts for me.  It can be hard to know when I am having a real problem and when I am just being a wimp.  These thoughts enter my head.  Maybe I am making a bigger deal of things than is reality.  When I am getting hit with being sick and getting brain fog, am I really that fuzzy mentally, or is it an excuse to not do work?  There is no way to know the answer, so in general I try and move forward best I can.  These thoughts are just where the mind games begin.

If I tell you 20,30,40,50 times I can’t eat gluten, and you keep bringing up eating pizza or some other thing, then you really don’t listen to me do you?  This kind of thing makes me question friendship, or the quality of a friendship we might have.  At the same time it’s also hard to remember who all I have told about being sick.  I don’t react or get nasty with anyone I think is ignoring the words coming out of my mouth, since I might be wrong about this.  But it sits there in my mind, and I know some of these people should know, but they just don’t pay attention.  Thinking about this makes me question who actually cares, and what friends are actually worthwhile friends.  I think the real takeaway is we all need to listen closer to our friends, because have we all been told things by our friends 30 times and we keep ignoring them?

A more vague concern and problem is that on one level I have no desire to ever leave the house.  I really am content not to go places.  This is all due to the celiac disease.  I used to like going places and doing things, I don’t like it as much anymore.  If the situations are right and I am comfortable then yes I like going places still.  Over time though I am more and more content to just be at home, and I don’t see that changing.

Outside of social worries there are some very legitimate worries and concerns about my health.  I wonder if my health plateaued or will things keep declining?  Long term nutrient malabsorption has to have some penalties.  Maybe Celiac Disease won’t put me down, but could it wear me down and make me more susceptible to other things?  I don’t have an answer. 

Many signs point to the fact that I have reached the peak of my life and am on a pretty fast downhill slide.  Am I going to be dead from this in the next year?  No, but I could be in really rough shape at 50 years old.  I can see that being true.  The general health decline I have faced from age 24 to age 34 is not a positive sign at all.  The damage accumulates.

I don’t know what damage is being done, but I know that it is happening.  There are all sorts of neurological diseases that may be related to celiac disease.  I may have brain damage because of this condition.  It’s a scary thought, to have a condition that may rob me of my mind.

I have spent around five years working as a web developer and coder.  In those five years I never got good at it.  I can do some useful things, and build some cool stuff with code.  I have never gotten good.  I wonder often if being sick has diminished my mental abilities to the point where learning complex things like computer programming is just something I won’t be able to do.  I can do good work, but at the same time, it feels like it’s a lot harder than it should be, and harder than it was before I had as many sickness issues.  This might be all perception, but the thoughts and questions remain.

The Celiac Disease Foundation says children of people with Celiac Disease have a 10 percent chance of having the disease.  That doesn’t sound like a big chance, but it’s also a pretty big chance when you’re talking about giving a child a rather not fun medical issue.  I really don’t know the moral implications of giving a kid a good chance of having all these problems.  I wonder what percentage chance of passing this on to my offspring makes me an asshole for having children at all.  I am in no way in a place right now where I want to have kids, but this sits in my head.  I have to really think about it.

Barring new research that finds some cure, I am stuck with this sickness, every single day the rest of my life.  That isn’t fun, but its real.  This fact adds a weight to life.  I don’t know that being sick makes things impossible.  But it is making every situation harder.

Conclusions

These are my experiences and how life is for me dealing with celiac disease.  It is one thing to read a disease description on a website, its another to hear a real story. 

I know I wrote this to show that celiac disease is a serious thing.  I try not to complain and talk about being sick.  There is no real benefit to it in most cases.  I suppose if you want some takeaways from all this then I can give you a few.

If you know someone with celiac disease I know they will appreciate you acknowledging or respecting how bad things can be for them.  There are minor medical conditions, for many of us with celiac disease, it is not a minor thing.  There is a real burden to having this disease, it causes real problems. 

Try and catch this stuff early if you or someone you know has this kind of problem.  The older and longer this goes on the more the damage seems to be.  If you are the type to “tough it out” you need to know there is probably damage being done.  Go to doctors, be smart.

Lastly just be cool about a sick person acting weird.  We likely make up a bunch of rules about how to stay as healthy as possible.  This might make us weird in some situations, but we are probably doing it for a real reason.  So in short, just be cool, let us do our thing, so if that means bringing along our cooler of safe foods, just be cool whatever it is. 

I paint a bleak picture.  There are good days where I don’t feel sick.  I just don’t know when those days will be.  This makes planning hard, because I must plan as though every day may be horrible, because enough of them are.  Overall life is harder, I feel ill often.  I approach this all with whatever perspective I can.  There are far worse conditions I could have.  The facts of how being ill are simply the facts, I cannot change them.  I can only react as best I can.  That is how celiac disease is for me, it can be worse for some, better for others, but that’s how it is for me.