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Explaining Celiac Disease to Others

Explaining Celiac Disease to Others

So May 1 kicks off another celiac awareness month. I always get a little torn about this month. Too many in the community use it as a month to promote shitty gluten-free foods, which not only doesn’t help raise awareness, but also is not even beneficial to the community. I’ve said it before and I’ll say it over and over again…the ONLY way to heal from celiac is to eat mostly clean. I’ve done it and most of the time I don’t even feel like I have the disease anymore.

But I do want to do my part to continue to raise awareness. There was the year I blogged every day for the month of May. I got so desperate, I even wrote a celiac haiku. No…seriously…I did.

Then two years ago, I launched the Faces of Celiac Disease to promote awareness. That’s still going strong (and is one of the favorite parts of my blog!)

So I’ll kick this month off with some education. Sadly, our disease is still greatly misunderstood and under-diagnosed. The only way to change that is to continue to educate the masses as much as we can. Not about the food, but about the DISEASE.

Let’s say someone asks you “Hey, what the heck is celiac disease anyway??” Here is what I would tell them.

(Dude note: The following appears in the current issue of Simply Gluten-Free magazine. Please check them out.) Ok…here we go.

Celiac disease is brutal. Celiac disease is life-long. And celiac disease is greatly misunderstood. Why is it misunderstood so much? Well, I’ve got my theories. First is that there is no cure and no drug and no expensive treatment. It’s not a sexy disease, if that makes any sense. Hence, it’s not talked about much and when it is, it is almost always discussed in relationship to the gluten-free diet. Which leads me to my second theory. The focus is on the treatment, not the disease. It’s bizarre really. Name another disease where the treatment gets far more attention than the disease itself. It’s honestly all about the dang food.

Who do I blame for that? Pretty much everyone.

  • The media, for obsessing over the gluten-free diet, turning it into a complete fad and the butt of endless jokes, from late night TV hosts to greeting card companies. Everyone is in on the joke, except for the celiac community, who cringes every time another one is made at our expense.
  • The government, for having unbelievably lax label laws and basically rendering a “gluten-free” label meaningless (and yet we still look for the label and trust it.)
  • The food companies, who are more than happy to slap gluten-free on any product they deem safe, knowing full well that there is hardly any policing and the odds of them getting caught are slim to none. The gluten-free market has exploded and while I know many of my fellow celiacs don’t agree, I don’t think it’s a good thing. I don’t need 25 kinds of gluten-free bread and 33 kinds of gluten-free crackers. What I need is to be kept safe. Period.
  • And lastly, we, the celiac community, are to blame. We are all about the food. I quietly belong to a few celiac support groups online. 9 out of 10 posts are about food and more than half of those are about crappy food. Food that does not allow us to heal. Food that…well…isn’t really even food.

So with all of the attention on the food, how do we get across to others that celiac is an extremely serious condition? Good question. I’d like to think facts are a good place to start (although in today’s political climate, that is up for debate.) So let’s start with some basic celiac facts.

  • Fact: Celiac disease occurs from an interaction between genes, eating foods with gluten and other environmental factors, but the precise cause isn’t known. (
  • Fact: About three million Americans suffer from celiac. (And two million spouses suffer from all of the bitching and moaning).
  • Fact: There is no cure for celiac…only treatment via a STRICT gluten free diet.
  • Fact: Over 90% of celiacs are undiagnosed or misdiagnosed (costing our healthcare systems millions of dollars unnecessarily).
  • Fact: Half of all people with celiac disease do not show any symptoms.
  • Fact: Even something as small as a bread crumb can inflict intestinal damage for somebody with celiac (this is why cross contamination is so important).
  • Fact: You can test negative for celiac and still have the disease when it is “triggered” later on in life.
  • Fact: Once celiac is triggered, it is a life-long disease.
  • Fact: Some products, like lipstick, toothpaste and vitamins, use gluten for processing but because it is not food, does not need to be labeled.
  • Fact: Celiac disease sucks. Ok fine…technically that’s my opinion.

Then I would begin to dig in to the symptoms. Most people just assume that if we eat gluten, we’ll get a bit of a tummy ache and spend some time in the loo. It is so much more than that. Yeah, the stomach issues can be awful, but more than half of adults with celiac disease have signs and symptoms that are not related to the digestive system, including (credit to

  • Anemia
  • Osteoporosis
  • Dermatitis herpetiformis (DH)
  • Damage to dental enamel
  • Mouth ulcers
  • Fatigue (oh my…the FATIQUE)
  • Cognitive impairment
  • Joint pain
  • Reduced functioning of the spleen

I did a survey of the celiac community a few years ago asking for their most common celiac symptoms. The most commonly mentioned? Brain fog, short temper, frequent miscarriages, acne, brittle nails, hair loss, headaches, and a whole lot more. So yeah…I’d say our disease is more about a little belly ache.

So if we can get the accurate FACTS and complete list of SYMPTOMS out to the world, I think it would not only be educational, allowing others to understand what we go through, but also the more people knew, the greater the diagnosis rate would be. They’d be asking to get tested for celiac disease at a much higher rate. Talking about the latest gluten-free bagel doesn’t quite the same effect (are you listening my fellow gluten-free bloggers?)

Lastly, I love sharing content that comes from my readers. If I was the only voice that you heard on my articles, I’d be cheating you because the community has some awesome things to say. The following goes a few years back but speaks volumes regarding WHAT IT’S LIKE TO HAVE CELIAC DISEASE. She nails it.

So many times we look okay on the outside and no one can see the bone-weary tiredness, the aching joints, the fuzzy brain, and/or the war going on inside our bodies. We go to work when we don’t feel well because we have to. Our sick leave is reserved for times when we simply can’t function at all or for the multitude of doctor visits that are sure to arise from other complications caused by the disease.

Our “tired” when we’re glutened is not the same “tired” that you feel. There should really be a new word invented for the “gluten tired” that makes it a Herculean task just to walk through the house.

We often smile and chat with people because we feel we have to. Sometimes our jobs depend on it. Sometimes we have social occasions that we must attend and don’t want to be the guest that dampens the entire occasion. (i.e. weddings, business dinners, family holiday celebrations).
When we come home we are spent physically and emotionally. It takes a toll on everyone, but especially loved ones who get the short end of the physical and emotional stick. In other words, know that we become good at smiling through the pain for others because we have to, but appreciate NOT having to do that with the ones we love.

Don’t take offense if she doesn’t want to be touched at all. Know that sometimes a gentle hug or caress can hurt. My husband loves to put his arm around my waist, but if I’ve been “glutened” I will flinch and draw away as a reflex. What he can’t see is that I feel like my abdomen is an overflated balloon. I have even looked in the mirror sometimes thinking I must look six months pregnant and am surprised to see that I look no different.

Know that advance plans are scary for us because we never know from day-to-day how we’re are going to feel. That event scheduled two months from now can’t be fully appreciated until the day before.

Sometimes things that are exciting for most people like cruises, resorts, and multiple destinations are scary for us. Buzzwords like “all-inclusive” are particularly horrifying because we’re locked in to where and what we eat . Part of the fun for any trip is sharing meals. Unfortunately, for us that becomes the biggest stress and fear. Throw in a trip where we don’t speak their language and the fear is magnified.

That is celiac disease.

Pretty powerful stuff, huh?

What are you gonna do to spread awareness? The ball is in your court.


Click Here For Original Source Of The Article

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Just how important is a mattress to a good night’s sleep?

Just how important is a mattress to a good night’s sleep?

Tomorrow Sleep hybrid Mattress

It's that time of year again, the weather is getting cooler, the days are growing shorter, the leaves are falling and the fireplace is going strong. That means it's time to stay in and get cozy. I love nothing more than sleep and cuddle time, but I have a confession to make, I'm not great at relaxing and not a good sleeper. I've never been someone whose head just hits the pillow and bam, I'm out.

tomorrow sleep hybrid mattress and memory foam pillowNo, that would be my husband (so jealous). I lay there for awhile thinking. Sometimes I'm planning, thinking about what needs to get done, sometimes I'm replaying a conversation, sometimes I'm thinking about work, or stressing about a problem. You name it. And sometimes, I'm just uncomfortable, tossing and turning, trying to find just the right position.

I'm also a particular sleeper, I have to have a box fan on high and I wear an eyemask from Brookstone that I can't sleep without. I know this makes me sound high maintenance (not going to deny it!) but nobody likes me when I'm tired and cranky. And don't even get me started on snoring. Thank god my husband isn't a snorer, we would have never worked out ;-)

I know how important sleep is, I stress it all the time. Sleep is your time to rejuvenate and repair. Chronically not sleeping enough will lead to weight gain, and many health issues including a higher risk of heart disease and stroke. Sleep isn't something to skimp on.

To help me sleep better and wake up more refreshed, instead of hitting my alarm 3 times, (so not a morning person, see above) my husband and I have been thinking about getting a new mattress for awhile. We've looked around and the cost always seemed so prohibitive. We also weren't sure which to get, there are so many options. I've had the same mattress since before college, and it was my parents before that, so fancy mattresses were not something we knew anything about.

That is, until Tomorrow Sleep contacted me. WOW. They sent me a king size hybrid mattress, medium firm, with organic cotton sheets and memory foam pillows. I'm obsessed. I get into bed every night and just sigh, "OMG this is so comfortable". I don't know how I've gone so long without a mattress like this.

And, it inspired us to redo our room. We not only got a new (king size vs queen) mattress but a new bed and headboard, a new rug and new comforter set (organic cotton and fair trade from West Elm). Our room is seriously nice now. I call this our cloud bed, the mattress, comforter, and pillows are like falling into a cloud. Tomorrow Sleep hybrid Mattress

Tomorrow Sleep Mattress: What You Should Know

What is a hybrid mattress?

According to "hybrid mattresses combine two or more support systems, usually memory foam layers along with an innerspring system. Hybrid mattresses are a great way to experience the pressure relieving benefits of memory foam while retaining the classic feel of an innerspring mattress. Hybrid mattresses combine an innerspring system with memory foam (or latex) to deliver the benefits of both technologies. Hybrids allow sleepers to enjoy the perfect blend of sturdy support and contouring comfort."

Tomorrow Sleep's mattresses are American made (love that) and constructed by craftsman right in Charlotte, NC.

Tomorrow Sleep Holistic Sleep System

What I love so much about what Tomorrow Sleep offers, is that it's not just about their Tomorrow Sleep Mattress, it's about so much more. As you read above, sleeping is not easy for everyone, so they've taken into account many things that contribute to a better night's sleep. They offer:

  1. A Hybrid Mattress (got it, love it!)
  2. Memory Foam Pillows (got them, so comfy!)
  3. Plush (hypoallergenic) Pillows
  4. A Sleep Tracker Monitor (high-tech sleep support!)
  5. 500 Thread Count Sheet Set (got them, soooo soft!)
  6. Comforter
  7. Mattress Protector
  8. Drapes (want these!)

10 Tips to Help you Sleep Better

In addition to the wonderful things Tomorrow Sleep offers to help you sleep, I've found a few behaviors that really help me personally:

  • Turn off all your devices and TV at least a half hour before you go to sleep.
  • Do not, I repeat, do not check your email before sleep.
  • Journal your thoughts from the day, get it out so your mind doesn't keep you awake.
  • Focus on gratitude, either write down, or say 3 things you are grateful for right now - it puts things into perspective and lowers your stress levels so you can fall asleep easier.
  • Don't drink anything 1.5 hours before bed to avoid waking up in the middle of the night to use the bathroom.
  • Practice legs up the wall for 10 minutes (it's so relaxing and probably the single best yoga pose for you).
  • Pick a mantra to focus on, inhaling one thing, exhaling another - for example, inhale "I am relaxed", exhale "everything is as it should be".
  • Have an orgasm (or several), nothing else leaves you feeling quite so satisfied and relaxed.
  • If you're in a relationship, avoid waiting until you get into bed to start problem solving major life events, save that conversation for when you are rested.
  • Don't consume caffeinated beverages after 1pm (depending on how sensitive you are, you may want to cut out the caffeine or stop after your morning cup).
  • Bonus Tip: I've learned a mattress makes a BIG difference, so invest in a good one.

My Overall Review of Tomorrow Sleep's Hybrid MattressTomorrow Sleep Hybrid Mattress

Pros: This bed is heavenly. It's so comfortable and just the right balance of soft and firm. It's comfortable and supportive. I love the memory foam pillows and the sheets are so soft, they are the nicest I've ever owned, and keep me nice and cool. I've been waking up aches and pains free, and actually feeling rested. When one of us moves, the other doesn't get woken up because we don't feel it. It's awesome. Falling asleep has also gotten easier, and my husband loves the bed too. The first time he got in, he had the biggest smile on his face. We feel spoiled.

Cons: I've found myself kicking off the covers in the middle of the night. It could just be the duvet itself, we have had a heat wave in New York the last few weeks. I think we are going to purchase Tomorrow Sleep's mattress protector to keep our mattress nice and also because of its cooling technology. The memory foam pillow is awesome (see pic of Przemek above), but maybe a little bit high if you are a stomach sleeper (like me). I adjusted in about a week though. I have no cons for the sheets, they are perfect, 500 thread-count doesn't stink.

Special Offer to my Readers from Tomorrow Sleep

If you are looking for a mattress, I have $100 savings to offer my readers on any Tomorrow Sleep purchase over $500. The best part? The mattresses ship for free and there's a 100 day trial so you can make sure you choose the best mattress for you.

To take advantage of this offer, use the code: FOODIE100.

Offer expires 12.31.17.

The post Just how important is a mattress to a good night’s sleep? appeared first on Whole Foodie Booty.

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