I know lots of people hate big pharmaceutical companies. There is a lot to hate. Big pharma make drugs that are super expensive that can put many American’s in the poor house for live saving drugs. The worst example is drug companies raising the price of insulin or epi pens over the course of the last 5-10 years. Insulin and epi pens have been around for a long time with no major advancements in technology. Yet pharmaceutical companies saw a way to make money off the backs of sick people who cannot live without these drugs and jacked up the prices just because they could. Horrific.
Now we come to celiac disease. Lots of drugs from lots of companies are under development. Many are entering clinical trials. Soon something – good, bad, or indifferent will be on the market for celiac disease.
Some argue that celiac disease can be cured through diet. I agree, many people are able to navigate this gluten covered world gluten free pretty easily. I’m totally glad for them and wish I was more like them.
I can be like them but for me it is restrictive. I would have to eat 100% of my meals at home. My family and kitchen would have to be 100% gluten free. I could never eat at friend’s houses. I could never go on vacation unless I rented a place with a kitchen. I would have to bring food everywhere. While I do this about 90% of the time, I get bored, lonely, and exhausted. Sometimes, I need a break. Sometimes, I want someone else to cook for me and bring me a safe meal on occasion. I don’t always want to be the odd one out saying that I already ate at a dinner party.
I was at a private event last week. I told the event coordinators that I had celiac and needed gluten free meals. While everyone else went through the buffet, I got a salad with lettuce, tomatoes, and cucumbers without a dressing because they didn’t have a gluten free dressing. Then I got gluten free pasta and grilled chicken without any sauce. Even when I do get safe meals – I am different. I am an outcast. Everyone noticed. Everyone asked about it. That is the problem. I’m always different.
I feel like this disease took away my freedom. My freedom to eat like a “regular” person. My freedom to not be a pain in the arse every time we go somewhere to eat. Before I go on a long rant about what we cannot do and how I feel different and restricted. We need to discuss that other side. What we can do to get our lives back to normal.
As a side note, why do we not shame big food companies that have jumped on the gluten free bandwagon the same way we do big pharma? These are the people that mis-label their gluten containing items. Cheerios and Primo Italian Sausage are the perfect example of this. Or my favorite – label their naturally gluten free items with gluten free labels so they can raise the price. Like, gluten free apples are a joy to purchase!!
So, I think I appreciate that Big Pharma is trying to help. The burden of this disease is so great that we need some help. When studies show the burden of this disease is similar to end stage renal or heart disease, we need some help. Those people die within a year – we live on with those burdens for 30 or 40 years.
I don’t even mind them making money off of our disease. I say that assuming that the drugs they provide will be reasonably priced, with few side effects, and truly help our cause. Depending on what actually transpires, that point of view may change but I can certainly expect the best.
I’m advocating for a medicine because I think we need the help. I think a gluten free diet alone is woefully inadequate for the treatment of Celiac disease. I think we are all still pretty sick even though we try really hard to eliminate 100% of the gluten in our lives. Unless the world changes, I don’t see any other option.