5 Things Celiacs Wish We Knew…

How much do you know about Celiac Disease? Ever wanted to know what those who suffer from it would most like to tell you?


As you know from my last recipe post, May is Celiac Awareness Month (in the US) and I thought I’d share some yummy gluten-free recipes this month. But today I wanted to share something a little different about Celiac Disease, something that people who suffer from this disease wish that you knew.
I myself don’t have the disease, but both my siblings and mother do. While there is a lot of information about other chronic diseases like diabetes, there is a lot that is often not known about this disease. Celiac disease requires so much more than simply avoiding foods that contain gluten.

With the rise of the paleo diet, gluten-free eating has become a bit of a fad. While I do feel there is a significant health benefits to reducing the amount of gluten we are consuming as a whole, I don’t think it’s imperative to go completely gluten-free to be healthy, unless you have a specific condition or intolerance to it.

 

Here is a list of 5 things Celiacs wish we knew about their disease:

 

There is a big difference between someone who is gluten intolerant and someone with Celiac disease.

For someone with an intolerance or allergy it is sufficient enough to just avoid foods that contain gluten to feel good. Some people with gluten intolerance can even stand a bit of gluten every now and then without being affected too much.

When someone with celiac disease eats something that contains gluten (even a microscopic amount), it triggers an autoimmune response within their body that damages the intestines and prevents nutrients from being absorbed by their body. This response causes a whole host of health problems for them. Even ingesting a speck of gluten could cause a range of symptoms that could take anywhere from a few days to a few weeks to clear up.

Some of these symptoms include:

  • Severe and debilitating stomach pains
  • Diarrhoea
  • Bloating
  • Migraines
  • Rash
  • Mood swings
  • Intense fatigue
  • Pain and stiffness in muscles and tendons
  • Drop in blood pressure
  • Insomnia
  • Brain Fog
  • Nerve and Joint pain
  • Swelling/Inflammation

Because they are so sensitive to gluten in comparison to someone who is allergic or intolerant, they have to be extremely careful with cross-contamination to make sure they don’t get even a tiny crumb that contains gluten.

 

They hate how demanding and high maintenance they need to be with their food choices.

You may have seen someone with Celiac disease at a social gathering bring their own food or just not eat. You might have even offered to make something gluten-free for them and found that they have declined to eat it. It’s not because they are picky or don’t trust you, it’s just that there is so many precautions that go into to preparing a meal that is 100% gluten-free and free from the risk of cross-contamination.

Cross-Contamination happens if even a microscopic amount of gluten comes in contact with their gluten-free food. This can happen in a variety of ways:

  • a single crumb on a plate that falls from another dish containing gluten or if the plate wasn’t washed properly
  • the same cutting board is used for their food as food that contained gluten
  • a speck of flour on food manufacturing equipment or kitchen appliances or even in the air
  • hands that prepare/handle food with gluten handle their gluten-free food without properly washing them

Now you can see why they have no choice but to be really strict with the foods they eat. It has taken me a few years to fully understand the risk of cross-contamination myself and I am surrounded by Celiacs.

 

The real problem with gluten goes beyond the external symptoms, it causes long-term damage to their internal organs.

Even a small amount of gluten ingested into the body causes an autoimmune reaction that causes the immune system to attack healthy body tissues. This damage can cause long-term problems that someone who is gluten intolerant or allergic is not subject to.

Some of these long-term issues include:

  • osteoporosis
  • fertility issues
  • iron and other nutrient deficiencies
  • increased risk of various cancers
  • nerve problems
  • further food allergies/intolerances (corn, lactose, etc)

 

A lot of Gluten-Free options aren’t celiac-friendly.

Just because an item on a menu or a product in the store claims it’s gluten-free doesn’t mean it’s safe for a Celiac to eat. Also, many of the foods that are celiac-friendly are full of unhealthy ingredients. For example, many gluten-free breads contain sugar, preservatives, and other additives. Surprisingly, there are not as many healthy gluten-free processed foods as you would think.

While it is great that there are so many restaurants that cater to the gluten-free community, a majority of those restaurants aren’t gluten-free enough for a Celiac to eat there. Many of these restaurants have no idea about cross-contamination and as such can’t guarantee that their foods don’t have a speck of gluten somewhere in them.

Celiacs have to be extremely careful and ask tons of questions each time they go out to eat. More and more restaurants though are offering truly gluten-free options that are safe for Celiacs.

If you are a Celiac and are looking eating out options, my sister highlights various restaurants she finds that are safe as she travels around the US. Check out her Instagram account @traveling.glutenfree.mom here for ideas.

 

Having Celiac disease significantly affects their social and family life.

Since most social activities in our society revolve around food, someone suffering from Celiac Disease faces many struggles engaging in this type of activity. At a dinner party, they either have to bring their own food or not eat at the party. Often they get questions about why they aren’t eating or why they brought their own food and they either have to explain the disease again and again or change the subject somehow. They worry about offending the host when they decline food or that people may think they have some kind of eating disorder because they aren’t eating. Depending on your personality, you may be able to deal with this awkwardness just fine, but others may just avoid social events all together due to this aspect.

Moms of Celiac children often have to educate everyone around their child–grandparents, teachers, friends parents, etc. And unfortunately, many people stop listening after they say gluten-free because they just assume it’s a health choice not a necessity. These children have to be educated at a very young age to avoid foods. Attending a kid’s birthday party can be quite difficult to negotiate and plan for.

Going out to eat for dates or other social outings becomes a hassle. If you are lucky enough to live in an area that caters well to the Celiac crowd you may have a handful of safe restaurants, but most places are lucky to have one or two safe places. Luckily, more and more Celiac safe restaurants are opening up and this may not be as big of an issue in a few years time as more and more people learn about the disease.

Trying to avoid gluten while traveling is probably one of the biggest struggles, especially when flying. Airplane food is generally not celiac-friendly and it can be quite an ordeal to convince airport security of the reason you need to take all of this food with you (especially for a long haul flight where you need to bring a days worth of food).

Often having a member of your family with Celiac disease means that the whole house goes gluten-free. Other family members can eat gluten outside of the house, but it cannot come into the kitchen. This may not be the case with all Celiacs, but even if they allow some gluten into the house, they must keep it contained in an area completely separate from the other food and be extremely careful when handling it and cleaning up after it. Staying in other peoples homes is often not possible or becomes incredibly difficult.

I know when my mom comes to visit me, she feels like she is a burden because we all go gluten-free when she is here and I need to clean my kitchen thouroughly before she gets here to get rid of all the flour and gluten crumbs. I don’t mind doing it because I know the problems it could cause her and its worth the time we get to spend with her, but no one enjoys other people having to go out of their way for them.

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Like I said before, I myself do not have Celiac Disease but most of my immediate family members do have it, so its something that is close to my heart. I did not write this post to make anyone feel bad in any way, but just to highlight some common misconceptions that Celiacs face caused by lack of awareness of the disease. So please share this post with others to help spread the awareness of Celiac Disease. With more awareness comes a slightly easier life for those that suffer from this condition.

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7 thoughts on “5 Things Celiacs Wish We Knew…

  1. Great list. I was just talking to my GI doctor about the celiac GF diet yesterday and we agreed it is the hardest to follow. I have followed a lot of other diets in the past (vegan, clean eating, etc) and GF is by far the most difficult. I just basically don’t eat out unless forced to. No longer find it a pleasant experience. I don’t like being That Person an I really don’t like feeling like servers are either irritated with me or placating me.

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    1. I can only imagine how hard it is having to worry so much about cross contamination. The good thing is that celiac friendly restaurants are getting more common and you won’t have to feel like you are pestering the staff. But don’t feel bad about it. Your health is worth it!!

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      1. Yeah, it’s a roll of the dice every time you eat out, except for dedicated GF restaurants. I only do it when I have to. I think it’s probably a mistake for celiac patients to eat out a lot, though I understand why it’s hard to stop.

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  2. Thanks for sharing this. Like you, I’m not celiac myself, just intolerant, but I do have close family members that are diagnosed celiacs and see the pain they go through. Sharing information like this is helpful for everyone, staring with people that work in restaurants and hospitality and don’t even know what’s in the food they are selling or how to talk to someone that asks for a gluten free option in the menu!

    http://notanotherhealthblog.com

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