Because, what I needed was another diagnosis.
To be fair at least this diagnosis answers some questions in my life. I enjoy food. I’m food adventurous and might qualify as a foodie if I was inclined to use that term, but I’m not. Unfortunately, I’ve always existed with a certain amount of digestive problems. After 30+ years I had accepted that I was generally going to get mild to moderately and sometimes severely sick after eating.
After Sean passed I did a number on my digestive system by not eating for about two months and then discovering that you can’t simply start eating solid foods again after not having done so for a long time. Initially I was put on a the BRAT diet, and I reacted badly to it. Then I was put on a rather extreme version of an elimination diet which started off as clear liquids and after the first 12-weeks of working my way onto some solid foods basically became a paleo diet.
I should be very clear here that it was not prescribed as a paleo diet, however when I looked online for recipes that worked for the diet most of the recipes that fit in that category were from paleo blogs.
At the risk of sounding like the next prophet of paleo (which is not my goal), I felt much better on the paleo diet.
I initially decided this was because I was not eating dairy. In the past, even though I knew I had a mild milk allergy you would often hear me say but sometimes cheesecake is worth it! And, so for may years I attributed my digestive upset to cheating on my milk allergy. What always eluded me was why I would sometimes get very very sick after a meal with dairy and sometimes not at all.
Despite being fairly consistent with my new elimination diet I was still getting sick on a relatively frequent basis.
For hardcore paleo people this is where I’ll admit I was still eating things like soy sauce or using gravy because the diet I was put on wasn’t really paleo it was: no grains, no dairy, no soy, no refined sugars, yes vegetables, yes lean meats, yes fruits, yes nuts. I wasn’t really told anything about gluten or label reading at this point.
All of the food we had to bin after finding out that I had to read labels for gluten content.
After almost a year on this diet and seeing some improvements but still having some problems I came across the term celiac disease, which was also linked to infertility. I asked my doctor to be tested. She agreed, although she cautioned that I may not have a positive result since the recommendation for Celiac screening is to be tested prior to removing gluten from the diet and my elimination diet would have removed most gluten from my diet.
The good and bad news is I’m definitely Celiac, and a very sensitive Celiac at that.
What is Celiac disease?
Celiac disease is a medical condition in which the absorptive surface of the small intestine is damaged by a substance called gluten. This results in an inability of the body to absorb nutrients: protein, fat, carbohydrates, vitamins and minerals, which are necessary for good health.
– Canadian Celiac Association
This explains a lot about my digestive problems over the years. I currently have some limited information based on what my doctor had available, using the Celiac disease sites and speaking to others with the diagnosis. I’ll get more information in July which was the earliest available appointment for a GI specialist.
What are the risks of having Celiac disease?
For a long time I viewed my digestive discomfort as a irritation, but not a serious problem. If left untreated however it can lead to some very serious problems.
In the short term there is the gas, bloating, stomach cramps and pain that I thought was simply ‘normal’ after eating and might be attributed to over eating. The words ‘comfortably full’ were not in my vocabulary.
Eventually you start to do sever damage to you intestinal track and start exhibiting signs of malnutrition, despite consuming the ‘right’ foods and vitamins.
You may also develop auto-immune disorders. It’s important to note that allergies are auto-immune disorders (something I didn’t know until recently).
In the long run you may need to have a portion of your intestines removed, and are at a substantially higher risk for colorectal cancer.
Why did you think you had Celiac disease?
WARNING: Gross factor, if you don’t want to read about disgusting symptoms skip this part and move on to treatment.
One of the barriers to me getting tested for Celiac disease was not wanting to talk to anyone about my digestive problems. I already had established a habit of minimizing my food intolerances socially through things like but sometimes cheesecake is worth it! And, I felt like talking about what was going on with me digestively was definitely (TMI) too much personal information and would make me sound like a hypochondriac.
The first and most prominent sign is that I felt somewhat sick almost every time I ate. I felt my best between meals and when I had not eaten for some time. I almost always planned to be home shortly after dinner since I knew eating out would usually make me sick.
On the mild end there was gas. Lots of it. GasX and the like really didn’t work. It also didn’t seem to be related to beans (yes, I tried beano), and cutting my dairy intake didn’t really resolve the problem.
There’s also bloating and severe cramping. The cramping would sometimes be much worse than even my worst menstrual cramps (sorry guys, I don’t have a better analogy).
In recent years I’d started to get a lot of diarrhea, to the point that i was very worried about having an accident.
Then I started getting the bloody-diarrhea, and that’s when I called the doctor. I guess “blood down there” is my line for when to go to the doctor.
I really wish I had known a lot more about Celiac much earlier on. I wish I knew that it wasn’t normal to feel sick or that gassy, bloated or cramped after a meal. But I didn’t. At least now I know why I had these symptoms.
What is the treatment for Celiac disease?
There is no cure for Celiac disease but it can be controlled by a strict adherence to a gluten free diet. As I recently found out this means reading a lot of labels. Things I never expected to have wheat in them do. Like soy sauce, or more surprisingly broth.
Why the fu*k does broth have wheat? This one bothered me for a long time until a friend that’s been very helpful in accommodating this new dietary restriction discovered that wheat is used for colouring in broth. Personally, I’d prefer to have my broth a little less golden yellow and not have to pay the extra $1.50 for gluten-free broth. Yes, yes I can make my own.
What is a Gluten Free Diet?
Avoid the following things:
Nutrition labeling can help. However, nutrition labels do not need to list all of their ingredients, only the major ingredients. For people like me who seem to react to gluten levels that may be below 20 parts per million I’m likely to encounter foods that may have trace amounts of gluten but are not included on the label. If you can find food that are marked as being prepared in a gluten-free facility these would be best.
Does this mean you can now eat rice, corn, soy, beans etc?
This is probably the most common question I get from friends who have been seeing me through this process. The short answer is: not yet.
It’s likely that some of the allergies I’ve developed over the years (pets, milk, pork, maybe soy) are a result of the Celiac disease and may get better with time.
At the moment I need to wait until I am in the care of a GI specialist who can help me with re-introductions to some of the foods that have been excluded. I’m hoping I’ll get many of them back but realize it will be a long process. They will likely need to be introduced one at a time with wait periods in between. They were also excluded because they’re considered “hard to digest” foods so I may have trouble re-introducing them.
So, what can you eat?
Again, without sounding like an add for the paleo diet, almost everything paleo has worked out for me.
Here are some recipe blogs I love:
I’ve had some suggestions to return to a vegetarian / vegan diet. I will be the first to admit that when I did try to eat vegetarian / vegan for the better part of my life, I did it mostly wrong. I was more of a starch-a-tarian than a vegetarian. That being said, I find the heavy reliance on soy (which I don’t seem to react well to) and many grains including wheat to be difficult for me to navigate around. Although not impossible it’s just a lot more work to modify recipes.
Here is one great vegan-celiac blog I like ( recommend subscribing by RSS because the blog itself is sorta weird to navigate):
Hopefully this is it for medical curve balls this year. I’m glad I have a diagnosis and I’m learning to navigate a gluten-free lifestyle. I’m looking forward to getting a doctor that will hopefully have more information on Celiac disease and help me with the re-introduction of some foods.