Celiac Disease Awareness Month: In Closing

Well, today is the last day of May, making this my last CDAM post!

I may have strayed off topic, but all I wanted was to make a few more people a little more aware of Celiac Disease. I hope I accomplished that!

In closing, I just want to remind everyone that Celiac is a very real, very serious disease and the only treatment is a gluten-free diet. Any contamination of gluten can make a Celiac very sick.

Gluten-free is just a fad diet. For some of us, it's a medical necessity.

Thanks for tuning in!

Celiac Disease Awareness Month: 20ppm

Celiac fact of the day: It is estimated that any more than 20ppm (parts per million) of gluten can damage a Celiac's intestines.

That means if you have one million crumbs in something, and twenty of them are gluten, it will can make a Celiac sick. That is about 1/64th of a teaspoon!

I usually explain that if you can physically see a crumb of a gluten product, it will make me sick (crumbs in butter, mayonnaise, on a knife, on an unwashed plate, on the counter, in the toaster...). It doesn't take very much to make me very sick.

Celiac Disease Awareness Month: Blog Time

Check out this awesome blog from Erica Derner. She has lots of giveaways, reviews, and she always talks about new gluten-free products. I have her book and love it, and follow her blog religiously.

Celiac and the Beast

I also love Gluten Dude, who answers questions, complains about crappy Celiac things, and is also running the Faces of Celiac wall.

Gluten Dude

And then, of course, for any fellow Canadians, I like to follow somebody who actually talks about Canadian stores and products. I also love the brutal honesty of King Gluten Free, and how he talks about whatever is on his mind.

King Gluten Free

 Those are my top three Celiac blogs to follow. Do you have any favourites?

Celiac Disease Awareness Month: It's All Relative

Celiac fact of the day: People who have a close relative with Celiac Disease have a 10% chance of Celiac themselves, as compared to the <%1 the rest of the population has.

Celiac Disease Awareness Month: Allergic

You know when someone says something, and a few hours later you come up with the perfect response? Such a depressing moment.

And then you know when you manage to come up with the perfect response and say it, on the spot? Oh, such a satisfying moment.

I had one of those moments today. Once a month, my workplace serves cake to celebrate all the birthdays and new employees. Most of my coworkers know about my diet restrictions, so I hardly even notice cake days anymore. But one of my coworkers grabbed two slices of cake, and then found out the other person already had a slice. He walked past my desk and this took place:

"Well Robynne will eat it, won't she?"

"Nope!"

"Really? Why not?"

"I'm allergic."

"Bullshit!"

"Well, technically I have an autoimmune disorder that causes my body to react to it and make me sick, but you're right - it's not an allergy!"

He laughed and walked away. I don't know if he got the point, or if he'll keep pushing food on me (he's done it before!), but I was pretty proud of my quick reply. Haha.

Oh, and yes, I was insanely bothered by the rather rude "bullshit", but whatever. There will probably always be people who hate on gluten-free-eaters, just for the sake of it, but that's what I'm trying to do - Point out that we aren't all worthy of the hate.

Celiac Disease Awareness Month: Gluten Intolerance

Although celiacs only number less than 1% of the population, approximately 25% of people report choosing gluten-free products.

That much larger chunk of people make things both easier and more difficult for celiacs. Because there is a larger audience for gluten-free food, there are more products. It's simply supply & demand. There are plenty of brands that are creating gluten-free food, and most stores now have gluten-free areas (perhaps whole aisles) simply because it is a more popular choice. Restaurants are also offering more and more gluten-free dishes, often offering a gluten-free menu as well.

At the same time, however, that portion of the population makes life more difficult for celiacs. Because gluten intolerance is not as severe, people who choose to eat gluten-free are often unconcerned about cross-contamination, which often gives servers and cooks the idea that all people who eat gluten-free do not have to be concerned.

I've overheard someone announce that they were "allergic to gluten" and then I watched them pick the croutons off of a salad. If I were to do that, I would be violently ill for a week. I've also had to explain to people preparing my food that I need them to change their gloves, use a new spatula, etc, and I've watched them roll their eyes at me.

It's hard, because I will not fault anyone for what they choose to eat. And I'm all for anyone eating gluten-free. However, I dearly wish that people who are not severe would not act as if they are. That's really all I ask. Unless you are allergic to gluten, or have Celiac Disease, please don't ever tell anyone that you have a gluten allergy.

Thanks.

Celiac Disease Awareness Month: Skin Care

I made a small mistake yesterday. I'm glad I caught it in time, but it still made me very sad.

I went shopping at The Body Shop today, for some new facial skin care. I conveniantly ran out of fash wash and moisturizer at the same time, so I popped in to pick up some new stuff. I looked at all of their facial lines, and picked the one best for my skin. I read a little bit about on their signs, and then picked out four products: facial wash, toner, moisturizer, and a BB cream. They had a really good deal on, so I was pretty excited.

When I got home and was getting ready for bed, I started to wash my face. Just before opening the bottle, I thought, maybe, just maybe I should read the ingredients, mostly to check for parabens.

And there it was, staring me in the face, wheat germ oil. My heart sunk. I couldn't put that on my face, on such sensitive skin, and so close to my mouth, in good conscious.

Well, I thought that if it was just the face wash, I'd be okay. So I check the toner. Wheat germ oil. Then the moisturizer. It was the very first ingredient. My heart sinking, I morosely picked up the BB cream. Nope, it had it too. There was no way I could put all four of these on my face every day. No way.

So I'm taking the products back today. I talked to them, and I'll get my money back, but the big sale isn't on anymore, so I won't get new products for the same price.

It's so strange. I usually neurotically check the ingredients on everything. I read several other products, including the two other things I bought (a foot lotion and soothing leg cream). But the one time I didn't think to, I mess up.

I'm partly posting this to complain, and partly to remind people that celiacs do need to read the ingredients on body products. You never know where gluten could be hiding.

Celiac Disease Awareness Month: Celiac and the Brain

When I tell people that I eat gluten-free, or that I have Celiac Disease, one thing that most people don't think of is cognitive decline. As this article finds, there is a link between untreated Celiac Disease and cognitive decline.

Every time I accidentally ingest gluten, I suffer from what I call brain fog, and I know I'm not alone in this.

Celiac Disease Awareness Month: Faces

Check out this page from Gluten Dude showing hundreds of people who have Celiac and what it means to them.

(Hint! Names are in alphabetical order, Recognize anyone?)

Celiac Disease Awareness Month: Please

A photo posted by Robynne (@adelajoy) on May 13, 2015 at 8:21pm PDT

Celiac Disease Awareness Month: Makeup

Have you ever read the ingredients on your makeup?

I do, every single time I buy some. There are a few makeup companies that only produce gluten-free makeup, and those are really the ones I trust anymore.

It may not seem like a big deal, but my skin reacts to even trace amounts of gluten, and any gluten in lip products can be downright dangerous. So I buy gluten-free lip balm, foundation, lipstick, mascara, everything. It's just safer that way.

Celiac Disease Awareness Month: Vitamins

Did you know that most celiacs, even once diagnosed and on a gluten-free diet, suffer from a vitamin B-12 deficiency?

Pre-diagnosis, most celiacs will have multiple vitamin deficiencies, because their villi have stopped absorbing vitamins, minerals, and nutrients.

Celiac Disease Awareness Month: CollegeHumour

I saw this video from College Humour the other day, and at first instinct, I winced. And then I scrolled past, thinking, "Nope, I'm not opening that can of worms. I don't need to be angry today."

But then my hubby watched it, and told me I need to see it. Although I trust him, I was still a little ready to be offended. Popular internet videos, memes, blogs and pictures about gluten-free usually just rile me up and make me hate people. And yet, this video was different.

Take a gander and watch it!

Youtube link here if that's not working!

Celiac Disease Awareness Month: BBQ

I was recently invited to a barbeque, and I said, "Well, I'd love to come, but I can't eat barbeque."

In response, my friend said, "Right, you wouldn't know what's on the meat."

Well, that too, I guess. I meant everything, but yeah, sure.

If you're wondering why that is, let's walk through a regular BBQ. The kind of summer evening meal I grew up with.

Somebody is manning the BBQ. They have hamburgers (sometimes contains bread crums) and hot dogs (often contain wheat gluten in one form or another) cooking on the bottom, with a bunch of buns toasting on the top rack.

Hold up. As soon as those bread products touch the BBQ rack, I can't eat anything that comes off of it. So unless you've recently scrubbed the rack and saved a spot for my GF bun, I can't toast my bread.

Well, that's alright. It doesn't have to be toasted. What about the meat?

Well, if the meat does not contain gluten to begin with, and the rack it's cooking on has been cleaned, it is theoretically safe. Unless the buns are being toasted above it. Crumbs like to fall and get on everything.

Okay, so I've been to a barbeque where the chef set aside my meat and bun, making sure the rack was clean, the meat was safe, and there was no chance of crumbs. So now I have a hamburger! Yay!

Then everybody lines up, gets a bun and burger, and then files past a table filled with condiments, veggies, chips and sides.

If the condiments come out of a squeeze bottle and I'm fairly certain the tip is clean and hasn't been rammed into some careless person's bun, then I can douse my burger in ketchup and mustard. Any condiments served in a dish are just not okay, though (such relish and mayonnaise). The toppings are a gamble. If I think they were prepared without contamination and I'm the first person through the line, then my burger gets a little lettuce and pickle. Typically, I go without.

Now, here's the big one. As everyone goes through the line, they handle their burger and bun. They touch the bread, and then they reach into the big ol' chip bowl and dish out a handful of chips. They they're touching the raw veggies...

So if I'm the first person through the line, and the chips are a gluten-free brand, I grab some chips and veggies (although I skip the veggie dip). Then there's coleslaw, potato salad, macaroni salad. I usually just skip all of those, unless I have time to stand there and read the ingredients, and I'm confident no one has contaminated them.

Basically, if I have a BBQ with close friends or family, and the people preparing the food are conscious of my needs and go out of their way, I can eat several things. But if I just show up at a big BBQ, I'm not even eating the chips. Maybe I'll have a can of pop.

With this being May long weekend and summer officially being underway, I'm sure you can imagine how this has me in a fit of nerves. Erg, BBQ season.

Celiac Disease Awareness Month: Why Not Get Diagnosed?

Although I can't fathom a reason someone wouldn't want to know if they have Celiac Disease, there are valid reasons. To expand on yesterday's post, here is the follow-up article, 4 Reasons Not to Puruse a Diagnosis.

It covers the following four reasons:

1. Getting diagnosed can be a pricey — and frustrating! — process.
2. If you've already gone gluten-free, you'll need to undergo a gluten challenge to be tested.
3. An "official" diagnosis could make your insurance costs go up.
4. You don't need a diagnosis to eat gluten-free.   

Mind you, if you want to see your doctor about getting tested, don't let anything stop you!

Celiac Disease Awareness Month: Why Get Diagnosed?

If you haven't already figured it out, I am pro-diagnosis and pro-testing. Whenever I can, I tell people to get tested and/or diagnosed. If you are sitting on the fence, or don't think you should get tested, here is a lovely article with four reasons you should pursue a diagnosis.

It expands on the four reasons below, and goes over them in detail.

1. You'll know what you have, and understand your risks for other, related conditions.
2. If you're diagnosed, you may be able to persuade family members to be tested.
3. A diagnosis may help you obtain accommodations at school or at work.
4. When there's a drug approved for celiac disease, you can be among the first in line for treatment.  

Celiac Disease Awareness Month: Wait Time

Despite the fact that Celiac Disease is a genetic condition, doctors believe that it is "kicked into gear" at some point in your life. Studies show that a stressful situation may bring it on, although there is a number of people who have active Celiac Disease from birth.

So basically, I spent my whole life living with Celiac Disease, and sometime in my mid-late teens, it kicked into gear. From that point on, my immune system started attacking my intestines when it encountered gluten, even though I was healthy before then.

It is estimated that most people wait 6-10 years between Celiac Disease acting up, and it being diagnosed.

This is another reason that so many people may be undiagnosed.

Celiac Disease Awareness Month: Misdiagnosed - Symptoms

A large number of people may have Celiac Disease and not even know. Another reason for this is the large and varied list of symptoms.

At the beginning of the month, I posted a fun little infographic about symptoms, but I didn't talk about it very much.

Because there are so many different possible symptoms, Celiac Disease often looks a little different in everybody. Some people present with typical symptoms: bloating, gas, stomach pains, constipation, diarrhea, weight loss. And some people present with rather atypical symptoms: headaches, mouth sores, joint pain, infertility, or hair loss. And there's another group of people who don't present with any symptoms at all! Imagine finding out you have a disease like this without ever experiencing a symptom!

Celiac Central has a lovely web page about all of this, and they even have a checklist for you if you've wondered if you may have Celiac disease.

Celiac Disease Awareness Month: Undiagnosed - Awareness

As I mentioned yesterday, a large number of people may be running around with Celiac Disease and not even know. Why is this?

There are a few reasons, and I'm going to cover them this week.

The first is that despite the fact that the gluten-free diet runs rampant, Celiac remains a widely unknown disease. Most people don't know what it is, or what it means, even if they have heard of the gluten-free diet.

The only way to combat this is to keep talking about Celiac Disease, and encourage people to get tested for it. As I've already mentioned at the beginning of the month, Celiac disease is relatively easy to test for. Every time someone talks about wanting to try eating gluten-free, I encourage them to get tested for Celiac Disease first. Better safe than sorry, right?

Celiac Disease Awareness Month: Low Diagnosis

It is estimated that about 83% of Americans who have Celiac Disease are undiagnosed or misdiagnosed with other conditions.

That's a pretty high number...

Celiac Disease Awareness Month - Think About It

Are there any things that you think about on a daily basis?

Well, sure. Lots of simple things like the weather, getting dressed, food, water, maybe coffee, or your job.

Any bigger things? Is there anything that you are guaranteed to think about at least once every single day, while people around you think of it very rarely if at all?

For me, it's Celiac Disease. The words "celiac", "gluten-free", "gluten", "contamination", and "wheat" all cross my mind at least once every single day. It's not something I can stop thinking about.

I have to think about it every time I buy groceries or decide which restaurant to go to. I have to think about it every time I'm invited to any social outing (let's face it - all social events interact with food). I have to think about it when I'm meal-planning, or checking out new recipes online.

I also think about it anytime that my stomach starts to hurt, or I get a headache. Even if I haven't been glutened, and it's nothing more than a headache, my mind instantly jumps to "what did you eat" whenever I start to feel sick.

There have been times that I liked to pretend I was normal, and not talk about it or do anything weird, but ultimately, I will never be normal.

Celiac Disease Awareness Month - Things I've Heard

Having a disease that isn't really talked about much leads to a lot of strange and silly questions. I have no judgement for anyone asking an honest question, no matter how silly it may seem, as long as they are not rude about it. Below are several of the things I've heard when I tell someone about my disease for the first time, and the answers I'd give if I sometimes wish I could give.

"So do you eat those rice cake things?"

 Probably. Rice is gluten-free. But I promise you, I eat a lot more than one thing.

"Potatoes aren't gluten-free."

Please, please, please just trust me to know what I can and can't eat. I've been doing this for awhile, and it's actually pretty serious. I've done a lot of research, and I've made a lot of mistakes. So please just stop telling me basic things like this, especially when you're wrong. (Potatoes are perfectly gluten-free, I basically live off of them.)

"Ugh, is this because it's trendy?"

First of all, no. Second of all, if the answer were yes, this is still an inappropriate question. Do I ask you if you're wearing skinny jeans just because it's trendy? No, because I'm not an ass.

"Couldn't you eat a little?"

No. Just no. For goodness sake, no. I get sick for a week when someone else accidentally contaminates my food. So no, I will not "just eat a little" of that cake. And don't take it personal. I don't take it personal that you're trying to poison me.

"So are you a vegan?"

Wanna hear something crazy? Wheat is vegan. So is barley, and rye. In fact, all original forms of gluten are vegan. Meanwhile, no animal products naturally contain gluten. So yes, I could be a vegan with celiac disease, but that doesn't seem like a natural progression to me. Would you ask someone with diabetes if they're vegan?

"What do you even eat?"

Here it is. The big one. Man, I almost don't know how to answer this. Well, I eat food. Just like you. I eat meat, milk, bread, cheese, eggs, fruit and vegetables. Yeah, I buy expensive bread and I have to read the ingredients on everything I buy, but I promise you that your meals don't look that different from mine.

"So what can't you eat?"

Gluten. If you expect me list specific foods, we're going to be here for awhile. It's in a lot of things including wheat flour, soy sauce, licorice, barbeque sauce, ham, beef & barley soup, pretty much most soups, actually, and a lot of other stuff. No, it's not in everything, but it's in a lot of things you wouldn't expect it to be, and I have to be very diligent to avoid it.

 "Oh my gosh, I didn't know!"

That's okay. It obviously hasn't come up. It isn't like I'm dying or anything. The fact that it's coming up now means I don't have anything against telling you, either. But I also don't want to prance around telling everyone I meet, because there's more to me than that.

"How long have you had it?"

 No judgement for asking this question. It's kind of a complicated one. The disease is genetic, so technically I've had it my whole life. However, scientists believe that something will happen to 'kick it into gear' and you'll become symptomatic. I believe that my celiac 'kicked in' somewhere during high school, because I remember being sick a lot and missing a lot of school. I went to a lot of doctors, and had a lot of tests done, but no one could find anything, so I believed it was just in my head. When I was 21, I had another series of tests done, and this time they found the celiac disease. So I've known about it for a little over 2 years, and that's how long I've been eating gluten-free, if that's what you're asking.

 
Although I may answer these questions a little snarky and sarcastically, that's only to make light of the situation. I promise that I am always open to questions, and if you ask me any question, I promise to answer with grace and kindness, unless you're just being rude.

Celiac Disease Awareness Month - One Hour Window

Have you ever checked the time right before you start eating?

I do, every time I'm at a new restaurant. If there's even a concern that they might contaminate my food, I want to know as soon as it hits me. It usually hits ~1 hour later, so I check the time. Then, when my stomach hurts or I can't focus, I check the time again. And when I see that it's almost exactly an hour later, I get a sinking feeling in my stomach. A "here we go again" as I prep for another awful, terrible, no-good week where I struggle to function.

I also use this tiny window to get home as soon as possible. Before the symptoms really kick in, and it's still safe for me to drive. (In case you're wondering, imagine staring at a traffic light and taking a couple seconds to figure out if the light is green or red. If you're stopped dead and you don't realize the light is green, that's fine. When you're going 60 and it takes 3 solid seconds to realize you're approaching a red light? Yeah, not fun. I've also experienced several moments where I forget which pedal is the gas and which is the brake.)

Paying attention to what time I eat uncertain foods is just one more unexpected side effect of having Celiac Disease.

Celiac Disease Awareness Month - Skin Contact

Let's talk about one of the odder topics, shall we?

I avoid touching any food containing gluten as much as I can, and if I do touch it, I make sure to wash my hands well as soon I can. I have a few reasons for this, I promise.

1. The first reason is that it's really easy for me to touch my mouth or face and contaminate myself. I have become sick in the past from touching a donut box and then chewing on my fingernails. If I make sure not to touch my face until I wash my hands, this chance of contamination is reduced.
2. The second reason is that I have developed a rash on my hand from handling dough. The last time I made regular gluten bread, I suddenly had a red rash on the backs of my hands, which I can only presume came from handling gluten. Since Celiac Disease is an autoimmune disorder, it's not unreasonable that my immune system may react in unexpected ways.
3. I'm also careful not to touch any of my own food or dishes with contaminted hands, because that's another easy way to make myself sick.
4. On top of all of that, I also exclusively buy gluten-free body products. All of my shampoo, body wash, body lotion, lip gloss, and anything else that goes on my skin says gluten-free right on the label. My reason for this is two-fold. First of all, I have reducted the dandruff, eczema and dry skin since I switched to gluten-free body products. The second reason is that these products aren't hard to find, and I would rather be safe than sorry.

So that was a little long-winded, but I hope now you understand why I avoid touching any source of gluten if I can.

Celiac Disease Awareness Month - Undiagnosed

Celiac fact of the day:

Undiagnosed and untreated Celiac Disease can lead to fatal complications such as iron deficiency, osteoporosis, and several types of cancer. It's very important that anyone with Celiac Disease follows strict treatment.

More from WebMD.

Celiac Disease Awareness Month - Gluten Free

The only effective treatment for confirmed Celiac Disease is a strict gluten-free diet. But what does that mean?

Gluten is a protein found in all forms of wheat, barley and rye. A strict gluten-free diet means avoiding any amount of:

• Barley
• Bulgur
• Durum
• Farina
• Graham flour
• Malt
• Rye
• Semolina
• Spelt (a form of wheat)
• Triticalee
• Wheat

To maintain a healthy lifestyle with Celiac Disease, you must read the ingredients on every product you eat to check for these things. Even trace amounts of gluten can cause a reaction, so you have to be very careful to avoid any cross-contamination.

These ingredients can be found in a lot of unexpected food products, so you have to be very diligent, but that doesn't mean you don't have options. There are lots of safe, gluten-free foods out there.

For more information, check out Celiac.ca!

Celiac Disease Awareness Month - Symptoms

One of the most common questions I hear is - What are the symptoms of Celiac Disease? Symptoms vary for each person affected with Celiac Disease, but there tends to be common ones amongst most of us.

Check out this awesome graphic from Gluten Dude that covers pretty much everything:

Celiac Disease Awareness Month - A Cure

Is there a cure?

Short answer: No. Celiac Disease is a lifelong, incurable disease.

Long answer: I'm sure there are scientists and foundations researching this right now. But to be perfectly honest, I'm not longing for one. Celiac Disease sucks, but it could be a lot worse, and I would rather brain power and funding went into more serious, lethal diseases. I will die with Celiac Disease, but I won't die of it.

Celiac Disease Awareness Month - Diagnosis

A lot of people have asked me how I was diagnosed. The first test for Celiac is a simple blood test, and then after that, you may be sent for an endoscopy. Personally, I was only sent for a blood test. My doctor didn't suggest an endoscopy, and by the time I had done enough research to ask for one, I'd been eating gluten-free for awhile. Ah well.

If you think you or a loved one may have Celiac Disease, just ask your regular doctor to send you for a blood test. However, you have to be eating a regular amount of gluten at the time of the test.

For any other questions about diagnosis, check out this FAQ from Celiac.ca.

Celiac Disease Awareness Month - What is it?

Celiac disease is a genetic, autoimmune disorder, which means the problem starts in the person's immune system. There is no cure, and the only effective treatment is a strict gluten-free diet.

According to the Mayo Clinic:

Celiac disease is an immune reaction to eating gluten, a protein found in wheat, barley and rye.

If you have celiac disease, eating gluten triggers an immune response in your small intestine. Over time, this reaction produces inflammation that damages the small intestine's lining and prevents absorption of some nutrients (malabsorption).

The intestinal damage can cause weight loss, bloating and sometimes diarrhea. Eventually, your brain, nervous system, bones, liver and other organs can be deprived of vital nourishment.

In children, malabsorption can affect growth and development. The intestinal irritation can cause stomach pain, especially after eating.

There's no cure for celiac disease — but following a strict gluten-free diet can help manage symptoms and promote intestinal healing