A note to my friends about Celiac

I wrote this as an article you can share with your friends regarding Celiac and what it is like. Hopefully it is a good basic description and general primer on the disease for our friends.

I have Celiac disease. It is an autoimmune disease, like Multiple Sclerosis or Type 1 Diabetes, that affects my small intestine. Celiac affects the way my body absorbs food. Currently there is no drug or medicine I can take to cure me or alleviate the symptoms – the only cure is a lifelong gluten free diet.

Dietary changes, should be easy, right? Just cut out bread and pasta and I will be fine. Not quite. Gluten is the protein in wheat, oats, rye, and barley that causes problems for me. Anything without wheat, oats, rye, and barley should be fine – except wheat, oats, rye, and barley are in everything. They are in beer, bread, pretzels, puddings, sauces, salad dressing, frozen vegetables, ice cream, pizza, soy sauce, etc. and the list goes on and on.

Well, I see lots of things labeled gluten free in the grocery story and on menus – do you have lots of things to eat? Sort of, the FDA has rules about what can be labelled gluten free. The FDA has said that 20 parts per million of gluten can be in anything labelled gluten free. That is less than 1/64th of a teaspoon of bread, in essence, a crumb of a crumb. The problem is that many companies use that label inaccurately. I’ve seen many companies put a gluten free label on the front while on the back say that the item contains wheat. So, it is tricky to buy processed foods in the grocery store. So those with Celiac try to stick to the perimeter of the grocery store – fresh produce, fresh proteins, and dairy products.

Is eating out hard? It is even more tricky to eat out where many places don’t offer a gluten free menu and even the ones that do have shared kitchens. Shared kitchens means that gluten foods and non-gluten foods are prepared in the same area. So imagine, someone orders a gluten pasta dish and then I order gluten free pasta. Many times, my gluten free pasta is cooked in the same water as the gluten pasta. Now, we’ve all cooked pasta and when you remove the gluten pasta from the water it looks cloudy. That cloudy is gluten proteins remaining in the water. Then you cook my gluten free pasta in that water and viola – I’ve now consumed more than the 1/64th of a teaspoon suggested by the FDA. This cross contamination risk is the same for shared pans, cutting boards, knives, and anything that comes into contact with gluten food and gluten free food.

Also, the description of shared kitchen applies to your kitchen as well, which is why I ask a million questions and always offer to bring my own food when coming to your house for dinner. It is too much to ask that you rearrange your kitchen for me and even though you tried, it is safer for everyone for me to bring my own.

So, what happens when I consume gluten? That depends. Many people are different. Celiac does not involve the type of anaphalixis type reaction you see from people with say a peanut allergy where their lips and tongue swell. Celiac is more of a slow burn and can affect the entire body. Celiac has over 300 symptoms ranging from brain fog and fatigue to diahrrea or even constipation. Some people get a rash on their skin, some people get dizzy and nauseous. All of them are Celiac reactions and can make us very sick.

The other thing to think about is when I consume gluten, I’m doing damage to my small intestine. That damage can take months or years to heal, especially if I’m getting accidental gluten on a regular basis. All of that damage adds up and I get really, really sick.

Are you trying a gluten free diet and you feel a lot better? Congratulations! But you probably are still getting a lot of gluten in your diet, because even those of us who have Celiac and are very careful, still get a lot of accidental gluten exposure. We try and still fail most of the time. Also, recent studies have shown that many times gluten isn’t the problem but FODMAPs are.

Do you have Celiac because you feel better on a gluten free diet? That is unclear. There are two steps to being tested for Celiac – a blood test and an upper endoscopy. Both tests must be completed while consuming gluten, otherwise the tests are invalid. The blood tests tests your immune response to gluten. Then the upper endoscopy is a medical procedure that they put you to sleep and stick a tube down your throat, through your stomach, and into the small intestine. Then they take a biopsy of the small intestine. The small intestine biopsy is looked at under a microscope for damage to the small finger like projections called villi. If those villi are short or even gone, you have Celiac disease. Sometimes the biopsy results and blood test results don’t match and you should talk to your doctor about those results.

Here’s the bottom line – Celiac is a serious auto immune disease that can affect every system in the body. It’s only cure, for now, is a gluten free diet. I’m crazy about protecting myself against accidental gluten exposure because it hurts me. I can be put out of commission for days from a simple mistake. So, please, when I ask if we can go to the same safe restaurant for the 1 millionth time, know that I’m trying to keep myself safe from harm. As my friend or family, I would hope you would want me to be safe too.

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