Reflection on Celiac Disease

Warning: this post contains graphic descriptions of the symptoms of celiac disease.

I was recently asked for advice for someone recently diagnosed with celiac disease. It has now been about a decade since I found out that was the cause of a set of symptoms that were, frankly, quite gross. I had had a strange rash on my bum since my late teens; painful, itchy blisters that left scar after scar. Once that had been around for a while my belly started bloating up with gas that produced some interesting gurgling sounds as well as progressively fouler smells. Then came the diarrhea.

People often ask what happens if I eat gluten right in the middle of dinner in a restaurant. My answer is that I'll tell them if they really want to know, but it's in their best interest to wait till they're done eating. The diarrhea that I dealt with in my early 20's progressed from loose stools to straight liquid. It showed up after every meal. Then it got worse and I started passing food that clearly hadn't been digested. I don't mean the bits of corn or carrot you sometimes find mixed in there, I mean when I started a meal I would feel a rumble within a few bites and before I was halfway done I was running for the toilet where the food I had just chewed up in my mouth would come out the other end. At the height of my suffering this would be repeated several times throughout the meal.

It was also pretty painful. The cramps were violent spasms that made me want to double over.

Given the grossness of it all I didn't really tell anyone what was going on. I just excused myself whenever the pain or need for a toilet was too much.

I had a suspicion for a while that there was something wrong with my diet but because I was sick all the time I wasn't sure what the culprit was. The mystery was solved one day when I was visiting my parents and came across a brochure for celiac disease. My mom had it kicking around because she'd been eating gluten free for years. Even with a family history I didn't clue in the whole time I was sick. What really caught my eye in the brochure was the description of a rash that sounded a lot like mine, something I didn't realize was connected to the digestive issues.

When my mother made dinner I casually asked if I could have some of her gluten free pasta instead of the regular stuff everyone else was getting. She looked curious. "I just want to see if I feel better without wheat for a while," I said.

Doctor's appointments followed.

Since then I've had a lot of conversations with people who've been though similar things and exchanged a lot of tips. Some things keep coming up over and over again. Since I've recently summarized my most common pieces of advice I thought I'd post it here as well.

1. Go cold turkey. Once the gluten is out of your system you stop craving it as much but cheating keeps you wanting it. Some people report addiction-like feelings towards gluten even though it's not an addictive substance. I learned this lesson the hard way. For some people quitting gluten can be like quitting smoking. Let yourself go through "withdrawal" and be done with it.

 

2. Don't think that you have to buy all the products labeled "gluten free" in the store. I use them sometimes as a treat or when I know I'm going to be busy but for the most part companies have figured out they can jack up the price and make a lot of money off of celiacs. They charge more than they should and the food isn't very nourishing (or tasty). I refuse to think these products are some sort of requirement for my illness. Without them I can keep my food budget under $30.00 per week. If I was relying on them that would be impossible.

 

3. Breakfast: A lot of people are used to cereal. I don't like cold cereal so this wasn't a problem for me. Some GF cereals have improved in recent years but I still prefer bacon, eggs and fruit. It's more nutrisous, tastier and cheaper. Yogurt and fruit is another good option. However, another more economic option if someone really wants cereal is buying a brand of oats that is gluten free such as  "Only Oats". Where I live they sell it at Bulk Barn for about $6.50/kg. It can either be made into oatmeal or you can make your own cold cereal by mixing it with honey or brown sugar and baking it in a low temperature oven till it browns. Then you can add stuff to it like raisins, nuts, chocolate chips, marshmallows or whatever it is people like in cereal. 

 

4. Lunch: One of the most common dilemmas people face when they are first diagnosed is what to do about lunch. The concept of lunch being a sandwich is so pervasive in North American society that it's hard for a lot of people to think of anything else. Options really depend on if you're at home or at work when you need to eat. When I have to pack for work, something like a salad with grilled chicken works really well. Bean salads and tuna salads too. Hard boiled eggs. Veggies and humus. Leftover chili, if there's somewhere to heat it up. Keep in mind that anything that can go in a sandwich can also just go in a Tupperware container and be eaten with a fork. At home, making soup from scratch is really easy. Just google recipes and make sure they don't use flour.

 

5. Dinner: Think of eating the way our great-grandparents ate. Meat, potatoes and veggies. There are also a lot of things that can go on rice like stir fry or curry. Sometimes I'll make a thick tomato sauce with lots of meat, mushrooms and veggies and serve it over rice instead of pasta. If you go for meals that are mostly meat, potato/rice and veggies you can cook it for everybody in the household and not have to make something separate.

 

6. Eating out: Tell people you can't have gluten. Servers in restaurants are getting better at advising people on what is safe if they know it's an issue, but they can't help if they don't know. A lot of  fast food and chain restaurants will also have a special allergy menu that tells you what's safe. For eating at friend's houses, just give them lots of notice until they get used to it. Offering to bring something like desert helps to make it less awkward. (Then show up with ice cream and chocolate and they'll love it.)

 

7. Probably the most important thing to remember is that it gets easier with time. Also, once the gluten is out of the system you start to feel better and that makes life a lot easier. I was in so much pain when I found out why I was sick but for some reason I would still go on the occasional gluten "bender" for a long time afterwards. It never worked out well. It's hard to picture going through life without glutenous foods at first but it won't feel like that forever. 

Visit to the Pumpkim Patch

Yesterday we went to visit a local pumpkin patch.

For more picture depicting what I've dubbed "The Great Pumpkin Battle" visit my other blog The Nerds and I.

Back to Ballet

Last week I stepped into a ballet class as a student, not a teacher. This was something I haven't done for quite a few years. Until this summer I had been teaching adult classes and working on small choreography projects but recent changes at that studio have resulted in an end to that arrangement. Since this summer has been filled with difficulties in my personal life I was somewhat relieved to give up the extra responsibility.

Since I still needed a way to stay in shape I instead signed up for a class at another studio. This will push me to work harder because teachers only have to demonstrate, whereas students have to do everything full out. Even when choreographing more difficult pieces I have noticed a tendency to favour movements that I'm comfortable with, avoid ones that are more challenging and not do things full out unless I need to.

It's quite different being back to the student role at this point. I gained a lot of weight over the summer so my body isn't moving the way it should be. Still, I'm back in a familiar environment and I think it will provide a nice balance to the rest of my life.

Visiting Parents

This week I am fortunate to be able to visit with my parents. This was a visit that had to be timed very carefully because of the various factors that need to be considered with my father's chemo therapy. For a certain amount of time after he receives a dose he excretes toxins through his skin and anyone around him is at risk of receiving second-hand chemo. It isn't good for anyone to be exposed to but there was extra concern for me because even low levels of exposure can result in infertility.

The other concern is his immune system. He is starting to have signs of improvement but that is only in relative terms and every treatment cycle will cause a fresh drop in resistance. We were very careful to plan our trip for the few days between when the toxins would begin to lessen and his immune system would begin to crash. Fortunately that happened to coincide with his birthday.

Even though we picked the optimal time, precautions still need to be taken. His immune system is still very, very weak so we are wearing masks anytime we are in the same room. I am also being careful to wear gloves anytime I need to handle anything he's touched to avoid exposure to second-hand chemo. It is possible that we are being overly cautious but the risks on both sides are so great that we feel it's better safe than sorry.

Long Hard Summer

This summer has been long and hard. Usually when I say that it means we've been through oppressive heat wave, smoggy air pollution and an overbooked schedule but not this time. This summer the weather has actually been kind of cold and we haven't been overwhelmed with an overly busy life. This year, however, we've had some unusual complications.

This started with a bang in late spring when we got a phone call from my dad saying some blood work had come back abnormal. Really abnormal. There was a long list of disturbingly low numbers but a lot of attention was being paid to the extremely low hemoglobin and the barely existent white blood cell count. The family doctor had called him in on a Sunday to explain that this indicated his bone marrow wasn't working, leaving him without an immune system to speak of, and that he needed to isolate himself from the general public immediately. A CAT scan and bone marrow biopsy later revealed cancer, specifically lymphoma that had spread into the bone marrow.

A few people initially wondered if this news would mean me making trips out of town to be with my parents but the answer to that is actually no. I work with the public and that means that even though I myself may not be sick I could easily be a carrier of a virus or bacteria that could unknowingly be passed on. A few friends who live closer have gone for short visits while wearing masks but I have opted to stay away for the time being. In the fall we will see where things are at and reevaluate the situation. For now I am just greateful that we had been able to spend some time together right before the diagnosis was made.

In the meantime I have been occupied with infertility. The desire to have children took on a fresh poignancy after finding out my father had cancer. It's a reminder that my own biology is not the only clock that's ticking. Even though we've been told to be very hopeful for a good outcome in my dad's case we don't know how long any of our parents will be with us. Both my grandfathers had died before I was born so it had always been very important to me for my children to meet theirs.

Unfortunately everything we have tried so far has failed to make that happen. We have spent the summer going to and from the fertility clinic trying increasingly aggressive treatments. None of it has worked. The current suspect is endometriosis but that needs to be diagnosed - and hopefully treated - with surgery. The fertility clinic doesn't do that surgery so they've been trying to find an OBGYN to refer me to but quite a few of them are either full or have stopped doing that surgery. Currently it looks like we've found someone but wait times are so long that it's going to be many months before it will actually happen.

First Kiss

 

Lately there's been a video going around of strangers kissing each other for the first (and probably last) time that has made the internet gush with words like "sweet" and "beautiful". 

 

Then everyone realized it was actually an advertisement and the people involved were all models, musicians or actors. People seemed to love it anyway so a number of other videos - like this one from Vice - have popped up doing the exact same thing but with kissers who are far less attractive. 

People seem to like that too because now it's supposedly real. 

I have to say that I am not impressed by any of it and am, in fact, quite repulsed. Kissing is a profoundly intimate act that has been cheapened to greater and greater degrees. Before I got married it seemed like kissing was expected shortly after shaking hands. The older I got the greater the expectation seemed to be but at the same time there was less meaning that went with it. It had been reduced to a somewhat fun activity that people seemed to expect while waiting around for me to agree to full blown sex. I was not impressed. For me, these videos just sum up the downward spiral that kissing has continued to take. 

I suspect that for quite a few people the appeal here is being given a glimpse of the first kiss between people who have never kissed before since that is generally something that's assumed to not be observed very often. However it may not actually be the first time you've seen a first kiss. If you attended my wedding you might be among the 120 or so people who witnessed the first kiss I shared with my husband. While I certainly don't expect everyone to do what we did it does make me extremely sad that so few people will even give themselves the chance to try anything as meaningful. To kiss someone for the first time who they have shared a long friendship with, who they don't feel awkward or shy around, who they have confidence in, who they know has feelings of attraction equal to their own, who they know they will be kissing thousands of times again and who will likely be the only person they kiss for the rest of their life. 

Maybe that isn't desirable to everyone but has kissing really sunk so low that we think watching people get paid to kiss strangers is sweet?

Learning About Courtship

Last night I had the pleasure of hosting a deepening on the topic of Baha'i courtship. It was something that evolved out of a couple of conversations I had with friends who are getting into romantic relationships. They are finding the same thing I found when I was single, which is that the Baha'i community in general doesn't spend enough time having meaningful discussions about finding a mate. We have abundant guidance marriage but talking about finding someone to marry? Not so much.

We desperately need to change that. We're at a point where the way that the rest of society goes about these things is so at odds with the Teachings and so disfunctional that we can't afford to just let single Baha'is flounder on their own without support or education. People want it and they want to do things right. When the subject comes up people look desperate to talk about it. Given how much importantance marriage and family are given in the Faith it boggles my mind that more attention isn't given to the subject.

Doctors, Tests and Drugs

The think about infertility is that it's painful, very painful. The result is that I don't update this blog very often.

We spent the last part of the summer recovering from the miscarriage and busy with activities surrounding friends and family. Oddly enough once we found out the pregnancy was over we both made peace with it very quickly but for me there was getting to be a lot of frustration at the general difficulty of conceiving.

In the fall I got a referral to a fertility clinic. Much testing was done but very little was uncovered. We appear to be fairly healthy. As a first step I was offered medication as it is the most affordable and least invasive. A choice was offered between Clomid (the classic drug known for producing multiples) and Femara (the newer option). What I appreciated very much about the doctor was that he presented me with a bunch of information, backed it up with numbers from studies and then left the decision entirely in my hands. I'd heard horror stories about other people getting fertility treatment and being treated with a totally lack of respect so the attitude that I was a thinking adult who could make decisions about my body when given the proper information was a welcome reassurance.

I went with the Femara because seemed to have less side effects and a low risk of multiples. It was a good choice in that I tolerated it very well, and my progesterone test show that I'm ovulating like a champ, but it hasn't really worked. No baby. Now it's been a few months so soon I'll be going back for more testing.