My Celiac Disease is not a choice: An essay from my personal archives

****Written in the Fall of 2012 when I noticed a lot of trend pieces about going gluten-free circulating and now edited and posted. No it isn’t about being a parent, but I look down at my 4 month old boy and hope and pray that he doesn’t have celiac disease.****

When I was 13 my mother found out she couldn’t eat gluten, it was then that she realized that I was probably in the same situation given my symptoms and the state of my health. I was given a clinical diagnosis (by a doctor) as having a gluten sensitivity. When I was 19 it became apparent that it was not just a sensitivity and I started undergoing various invasive tests for the doctors to finally confirm that at age 22 I in fact had Celiac Disease.

While I do welcome the fact that so many more people are aware of and understand what it means when I say cannot eat gluten, I have been torn for some time about how I feel about people who take on a gluten-free diet for what appears to be no medical reason at all. The good side of it is that the increased demand  has led to more products on the shelves and made it easier for me to find good gluten-free alternatives. The bad side of it the it means that I all too often encounter ignorant people who don’t understand that there are many of us who avoid gluten not out of choice, but out of necessity.

Today at my office something happened that really upset me and demonstrates this point all too well. Cupcakes were being given out to all the staff. A woman handing them out asked if I wanted one.

“No, not unless you have gluten-free ones. I can’t have gluten.” (Given that there are close to 1,000 people in my office, it is not inconceivable that the organizers would have actually made arrangements for people who can’t have gluten).

Her response was,”No we don’t have gluten-free, but what’s a little upset tummy for a cupcake?” She comically rubbed her stomach as she said this.

If looks could kill, that woman would have been dead on the floor at that moment, the audacity of her comment left me almost speechless for a second as I ran through what the appropriate response to such an ignorant comment was (given that I was in a professional building and these people are my coworkers I felt I had to maintain an appropriate demeanor).

My brain finally started functioning again and I responded in what was a rather icy tone: “Actually it wouldn’t be a ‘little upset stomach’ it would be a severe reaction.”

In the past people accepted it was an allergy when I said I couldn’t eat gluten. It was assumed to be a medical condition. Because who would give up delicious gluten for no reason? Now because so many people are doing Gluten Free diets by choice, I find myself encountering more roadblocks. Others assume I am just going along with the fad. I am not going along with a “fad”. Being gluten-free every day of my life is not a choice. It is a necessity and it is not always easy.

There are days when I wish I could eat anything because the constant stress and anxiety that I feel when I eat something not prepared in my own home gnaws away at me. You may not think that it is a big deal, but imagine if every time you had to eat somewhere you had to run through a mental check list: What is in this? How was this prepared? Is there a chance of cross-contamination? Does this person really know what gluten is and how it can be hidden in food? Will they be wrong and will I suffer immensely in a couple of hours? And then take all those questions and realize that you have now grill your waiter or host with them? It’s enough to make eating away from home seem like more of a pain than it is worth.

Every time I eat out at a restaurant, a family or friend’s house, a wedding or a party, I am riddled with anxiety about what I put in my mouth. I have been to professionally catered events where the chef didn’t even understand what gluten was. In such a case, how am I to feel confident that anything I put in my mouth is actually safe? I couldn’t and I ended up very, very sick.

There are times when I feel like an imposition on everyone in my life. I have to constantly ask people to tell me exactly what is in each dish at a potluck. Because of this, I have been known to only put things on my plate that I know are gluten-free because the effort to ask everyone what is in every dish is too much to go through. At those meals my plate ends up being cut up raw veggies from a veggie platter and whatever dish I brought.

If I don’t maintain a strict gluten-free diet I experience rather immediate symptoms including abdominal pain so extreme that I cannot stand up, nausea, heart burn, and the worst being hours of excessive/explosive diarrhea (just to name a few).

If I have prolonged exposure to gluten what happens to me affects almost every system in my body. Before I was diagnosed I was in near constant abdominal discomfort. I was being investigated for low iron, and nutritional deficiencies.

I had headaches. I had sleeping problems including night terrors. I was always tired.

I was constantly getting sick and contracting infections because my immune system was compromised as I was in a state of malnutrition. Even though I was eating, my intestines were so damaged that they didn’t absorb the nutrients in my food.

When I finally had a biopsy of my stomach and duodenum, the gastroenterologist said that my entire stomach lining was scar tissue.

I even had mental health problems and was prescribed powerful anti-psychotic medications to deal with a bi-polar disorder which I didn’t have.

When I stopped eating gluten, the change in my quality of life was so profound that I couldn’t  believe that it was as “simple” as a diet change. But of course, as you can see that diet change is not so simple. There are days when I long so much that to have a normal life that I have actually broken town and cried.

For me Celiac Disease is not a choice. It is not a fad. Eating gluten-free is the only way I can hope that this disease will not end my life early or cause any of the other long-term health effects that can occur with this disease – cancer of the digestive tract, osteoporosis, infertility, and mental and nervous system disorders to name a few.

I am lucky to have a good support network in my life. My mother and several family members also cannot eat gluten (which is not surprising given its genetic link). My husband who knew nothing about Celiac Disease when we first started dating can read any food label and know whether or not it is okay, and he could do this within about 6 months of us dating. My in-laws as well have been extremely supportive and have really learned how to prepare food that I can eat. The fact that they really take the effort to adjust recipes and try to make sure that I can eat most, if not all, the food they serve shows me how blessed I am to have them in my life. I have even had my father in law explain to a waiter on my behalf why you can’t place the gluten-free bread on the same plate as the regular bread – the waiter’s response illustrates my frustration perfectly. “Oh, people are actually allergic to gluten? I thought it was just a taste preference.”

Please understand that when I say I can’t have gluten, it is not a fad for me. And if you tell me you are ‘trying gluten free’ because you think it is the latest trick to lose weight or some celebrity is doing it, I will not be understanding because for me this is my disease.

You wouldn’t inject insulin if you didn’t have diabetes and that is how I view this new “fad” of going gluten-free. Maybe it isn’t the best comparison but it’s the closest I can come up with to describe how I feel. For me the stakes are too high for me to not maintain this diet.

So yes, I have a problem when the only treatment to my disease has become fashionable because I have to wonder what will happen to me and other people living with Celiac Disease when it is no longer fashionable?

I dropped a plant: another from my personal archives

***Here’s another personal essay I wrote back in the summer of 2011 when I was engaged and I didn’t have to worry about keeping a baby alive. Just Plants****

My fiancé and I had a little bet going about how long I could keep a particular plant alive; a pink gerbera daisy that I had received it as a thank you gift.  Since my track record for keeping plants alive is ridiculously poor, he likes to see how long I can go before a plant is dead. He likes to tell anyone who will listen about the summer when I wanted to start an herb garden. Within three weeks they had all died and I was forced to continue purchasing herbs at the store or using dried ones.

I told myself this plant was going to be different. I had been following the instructions that came with it: keep soil moist, give it indirect sunlight and fertilize every 2 weeks. But still it seemed to be having trouble staying robust. The plant was getting worse as each day passed. The leaves were drooping and while the flowers were starting to wilt the new buds were not replacing them. But still I was persevering and one evening I thought that my plant might like to sit outside on the balcony for a short time.
Our balcony doesn’t get a lot of sunlight in the evening so I put the plant out there thinking it would be good for it. In the morning when I went to check on it I found to my dismay the flowers were now severely wilted. Although I had already surpassed the time period specified to keep the plant alive for the purposes of the wager, it was now a matter of personal pride to keep the plant alive. (At least for another four days as that is when I would see the woman who gave me the plant again and I could tell her how well it was doing). I decided to bring it inside as it was to be especially hot and sunny that day and I knew that my plant did not like direct sunlight. I would give it some water and hopefully it would perk up and some of the little buds would start to replace the flowers that were now almost completely gone.
Alas, fate had another plan. One that would not only bring my dreams of keeping this plant alive crashing down, but also leave me in a rather awkward predicament at work. Walking into the living room from the balcony, plant in hand, I dropped it. I don’t know how. I didn’t trip or stumble. The plant just fell out of the pot. As if it had its own will, it leapt from the pot hurling itself toward the white couch. It missed and landed on the coffee table.  I don’t know if this was better as it came into contact with the PS3 controller. Not something my fiancé was going to be happy about when he found out.
Shocked, I stood there for a second contemplating if this had really happened. Was I really seeing dirt everywhere? Was it really on the carpet, the table, in the decorative bowl, all over the remote control and PS3 controller? Yes it was; this really just happened. This plant didn’t even give me the chance to destroy it; it decided to end its own life before the suffering at my hands became too much. Maybe it wanted to go on its own terms, I am not sure, but it seemed that it felt I was not capable of caring for it any longer. And so as I looked at the clock and looked at the surrounding mess, I came to the sad realization that I would now be late for work.
I scooped up my plant to the best of my ability and put it back in its pot as I deliriously thought, “Maybe I can save t”. I gave it some water after trying to build its soil base back up and set it on the counter coaxing it to recover for me. Then back to the living room I ventured with my trusty vacuum cleaner at the ready and to work I went, and work it was. Painstakingly, I vacuumed up every bit of evidence that would tell of the accident that occurred there. I used every vacuum cleaner attachment, getting all around the table legs and in front of the couch. I even vacuumed soil out of the PS3 controller and a bamboo placemat. I vacuumed until there was no indication on the white carpeting that any dirt had ever been near it.
It was then as I sat their vacuuming that I came to the sad realization that plants and I are enemies. Despite my best efforts they do not want to stay alive for me and will even kamikaze their very existence in an effort to escape from my care. I have tried keeping every plant imaginable alive, even cacti do not last long in my home.
Later as I walked to work, without my morning coffee, wearing no make-up, hair still damp from my shower and a hastily made lunch, (all things sacrificed as I vacuumed) I realized that not only had I killed yet another plant but my explanation for coming to work late was “I dropped a plant.”
Such a simple and benign sentence it is, only four words long, but it produced utter confusion and disbelief among all who heard it at the office that day. Forcing me to explain and relive what happened that morning.
I was determined to have a green thumb but with this final experience, and having been heartbroken again and again by my sordid relationships with plants, I finally resigned myself to living without plants and instead seek out art to fill my home.
Just no art of plants, it feels like its mocking me.

Humans and Animals are Different; An essay from my personal journals

From my personal journals
****Before I started this blog, I used to write personal “essays” and send them to my family just for fun. This is one I did in March of 2012 on what I thought I would like my child birth to be in relation to what to do with the placenta. And guess what, though I have edited it for flow and grammar it’s amazing how little my thoughts have changed on the topic now that I am 8 months pregnant****

 

There is a lot of wonder and magic and amazing things that come with child birth. There are rituals and traditions that every culture and family holds dear, and these traditions vary from family to family, and person to person. This essay is not meant to offend anyone but just to offer my opinions on how I think I want my childbirth to proceed with regards to the placenta.

It seems that use of placenta post birth is becoming more common. It seems that more people are cooking it, preserving it in various ways and it appears that there is a growing market to have it turned into supplement pills to take post-natally, or to use it in various DIY art projects.

Here’s what I would like to say on this…”No. This does not appeal to me.”

I understand this is a personal choice every woman must make for herself, but I see the placenta as an organ that is used to nourish the baby, providing a safe site for nutrient and waste exchange between the mother and fetus’ tissue during gestation. Safe because if the mother and fetus’ blood where to mix directly it could cause immune reactions due to different blood types. The placenta allows the exchange to occur through diffusion and active transport (yup, whip out that 9th grade bio text if you don’t remember what this means) thus eliminating reactions that could occur due to differing blood types.

When the body gets rid of it after giving birth, I believe that is the body’s way of saying “I am done with this.” I believe that if we were meant to re-ingest placenta then our bodies would have been designed to have our reproductive system reabsorb the placenta cells and return the nutrients to our body through some sort of post-natal circulation system.

This is clearly not what happens and thus I want my placenta to be disposed of according to hospital policies. I have no problem with delaying cord cutting to allow the new born to take up some more nutrients from the placenta and in fact do plan on doing this, but again, that is the placenta nourishing the baby for a short time immediately after giving birth; it is not me saving it and ingesting it at some point in the future.

Now, one counter-argument I have heard to mine says that many animals immediately eat their placenta after giving birth so why not humans?

Here’s my response to that: There are a lot of things that animals do that I don’t do and I feel placenta eating is one of those things.

Here’s my logic on the issue, based on 2 reasons animals may eat their placenta:

1) It smells. It smells like blood, and vulnerability to predators. So by ingesting the placenta immediately animals are attempting to remove the evidence of a vulnerable baby animal near by. This makes sense so that the predators don’t come looking for an easy meal.

If there was the risk that immediately upon giving birth, birds of prey would start swarming the hospital to eat my baby and immediate ingestion of my placenta would keep them at bay, I would probably eat my placenta. But barring any immediate threats to my baby’s life that stem from me not eating the placenta this is not something I will do.

2) Nutrients: yes I will not there is protein, vitamins and iron in the placenta. Animals are taking this back into their body. But animals live in the wild. They are not in a hospital or a developed area where as an alternative to eating their placenta they can take vitamins and supplements or easily have a nutritious meal. Also when a human gives birth even if they are really exhausted they can have food brought to them. If an animal gives birth they may be really exhausted and hungry but they would have to hunt, or forage for food. I am guessing they don’t want to do that immediately after giving birth so naturally they eat their placenta to get a quick meal into them so they can take care of the baby.

I guess if I were in a situation where I might starve and be unable to care for my baby because there was no other food source available then I might eat my placenta to give me energy. But I live in Canada, a developed country with grocery stores and restaurants and ways to eat healthy food after giving birth without having to eat my body’s own organs. I also have a husband who can help and bring me food, as well as family and friends. Yes there are some pack animals that “help” raise the young, but in most of the animal (mammal) kingdom the mother raises the baby herself. .

Now with all that said, after I give birth, please don’t suggest various placenta preservation ideas. If I have low iron, I will take Iron Supplements. Not eat placenta tablets. If I have low protein I can have a protein shake. Not a placenta smoothie.

Another placenta option that seems to be also growing in practice is the “placenta as art” movement.

People think it is beautiful. And yes I believe that placenta is beautiful in the metaphysical, spiritual sense of “Oh this is the thing that allowed my baby to come into the world healthy and nourished” NOT in a “Let’s take artistic vintage photos of the placenta and post to instagram” or “let’s make a print of it on canvas” or “let’s turn it into a teddy bear.”

It’s an organ. If I am going to see pictures of placenta they better be in a medical text book or journal. Not, in the newsfeed for Facebook.

I don’t mean to offend anyone who does plan to incorporate their placenta into their lives in some way, this is just how I choose to give birth. It is between me, my husband and the medical practitioners working with us. Humans have come a long way in medical advancements and science. We have a much better understanding of how the body works. In primitive societies maybe eating the placenta made sense because of lack of medical therapies to help a woman recover and because if you live in tribal society animal predators may be attracted to the placenta and attack your baby, but for me with all the knowledge we have I believe there are other options to recover after birth so yah, I don’t plan on ingesting the placenta, or doing anything with it other than letting the hospital dispose of it in what ever way they see fit.