What I want you to know about Celiac Disease

06:17

This is a very raw post about life with celiac disease that I wrote a couple months ago after being “glutened”.  I was frustrated and sad, and this is what poured out.  I haven’t posted it publicly before, but feel like today is a perfect day to do it because of the Disney and Chelsea Handler craziness of this week.
What I want you to know about celiac disease - inspiredrd.com
And really, it all comes down to this:
Choosing to eat gluten-free because it makes you feel better and having to eat gluten-free to save your life are two very different things.  <———ATTENTION MEDIA
(Edit: I wasn’t referring to gluten intolerance in the statement above.  I meant those who “try to eat gluten-free because it makes me feel better but then I cheat whenever I feel like it and I’m really doing it because it’s the fad of the moment”.  I hope that clears it up.)
So here they are, my raw feelings on
what I want you to know about celiac disease:
I want you to know that I’m not a picky eater, I’m not on a fad diet, I’m not a health freak.
I want you to know that I feel like the biggest pain in the butt when I sit down at your table and have to go through my spiel.  I want you to know that I see your eyes roll when I use the term gluten-free, and it makes me nervous for my health.
I want you to know that gluten exposure turns me into a different person.  Like a Dr. Jekyll and Mr. Hyde kind of a change.  I go from feeling like a normal happy human to, in an instant, feeling like I want to punch the world in the face.  I want you to know that I get anxious, depressed, frustrated, and short-tempered when gluten enters my body.  I try to stay away from my family as much as possible so I don’t say anything I will later regret, although it inevitably happens.
I want you to know that this isn’t an “upset tummy” disease.  All celiacs are different, and my symptoms affect my entire body.  First it feels like icy fingers are fiddling with my brain.  Then my stomach is a mess and fatigue hits me like a truck.  I get hot flashes, mood swings, bladder pain, aching joints, and headaches.  The worst part lasts 1-2 weeks, and I don’t feel like myself again for at least a month.  Sometimes I think I’m better then BAM, I’m driving with my kids in the car and I can’t focus my eyes or remember where I’m going.  I want you to know it’s scary.
I want you to know that I’m sick of talking about celiac disease.  But if we’re going to hang out, it’s going to come up.  Social interactions always seem to involve food, don’t they?
I want you to know that nothing about this is easy.  I thought being a dietitian would make the transition smoother.  It hasn’t.  I want all health care providers to hear this: Stop telling your newly diagnosed celiac patients that treating the disease is easy.  IT’S NOT.  And stop calling celiac disease “trendy”.  It’s like a slap in the face.
I want you to know that as much as it helps to have awareness and thousands of gluten-free options these days, those things hurt us too.  Food companies and restaurants are cranking out “gluten-free” items as fast as they can to cash in on the fad, and most of them aren’t doing it responsibly.  Then we get sick.
I want you to know that I have to think about celiac disease all the freaking time.  Every time I put food or drink in my mouth, lotion on my skin, gloss on my lips.  Every time I serve my kids pizza at a party and have to scrub my hands.  Every time someone asks if I want to meet for lunch.
I want you to know that as much as I hate this disease, I’m thankful to know the cause of my health problems.  I’m thankful to have a name for it.  I want you to know that there is an incredible celiac community out there full of beautiful humans who love and support each other.  I don’t know where I would be without them.
I want you to know that if you suspect you might have celiac disease, you need to get tested before going gluten-free.  Don’t let anyone tell you otherwise.
I want you to know that you know someone with celiac disease, and they need your love and understanding. This is harder than it looks.
Source :http://inspiredrd.com/2013/05/what-i-want-you-to-know-celiac-disease/

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  1. Well said! There has always been people with either a gluten intolerance or celiac disease but this condition has only been recognise by the medical profession in the last twenty to thirty years or so. Even as far back as World War II the condition was recognised. Go to my website GFfoodsforyou.com for more info.

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  2. Very well said I get up telling people its not a fad or people asking whats the effects gluten has on me while I'm trying to eat. I just say its not talk for the dinner table that shuts them up

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  3. My husband has been diagnosed celiac since like 7 years and we still need to argument with his parents each time we go ! It's devastating for both of us.. We have a son now of 1 years old and without him being tested, I'm pretty sure he's got it too. It's hereditary and my son throws up in the next 12 hours of eating gluten. And he gets bad temper and his night gets awful ! So for the sake of our family we all eat gluten free and we're happy with it !

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  4. Would be nice if it were spelled correctly !

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  5. Thank you for sharing!

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  6. I have celiac. I am extremely careful about what I eat. One week ago today, I had pulled pork on gluten free bread and Cole slaw. I purchased the bread personally from a dedicated gluten free bakery. I assembled the sandwich myself. I got glutened like I never could have imagined. Three full hours on the throne, simultaneously and violently barfing into a plastic bag. My entire body still aches one week later. I am fearful of eating anything. Celiac is awful. I wish others who do not have it would take it more seriously. Everyone thinks you can just order food and scrape off the wheat! It is no big deal. Think again. When you have celiac and you get glutened, you have a monster in you that puts up a rather serious fight. It happens quickly. Within an hour or so, then the real serious convulsions last several hours. You can't leave the bathroom and you cry. But, you can't call for help because you can't breathe because it keeps coming up. When your stomach and your insides are completely empty, you feel drained. And you hurt terribly. Your entire body.

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  7. I made a connection after not feeling well for about 3 years. After years of thinking it was my gall bladder and bad digestion. After bouts of constipation and diarrhea. After bouts of urgent crap my pants type diarrhea having just eaten a 1/2 sandwich, a bowl of pasta, Twizzlers~! My GP thinks I should eat more fiber, more grains, more whole grain breads, whole grain pastas, meanwhile, when I got scoped, I had inflammation from from entry (throat) to exit (rectum). My biopsy for Celiac disease was negative. My blood work (though I disagree with 1 of the test results) was negative. The Gastro humored me, however, and said if I wanted to eliminate the gluten, go for it and get back to him.

    I developed henock schonlein purpura shortly after eliminating gluten. Coincidence, I know, but I was very sick. I had to worry about bleeding intestines and urinate on a stick to see if I was passing blood (I wasn't). I lost 10 pounds. The purpura ashes on my lower legs and lower arms were palpable. I had fever for 2 days.

    After this passed, and I began to feel better, I wasn't missing gluten at all, and perhaps another coincidence, I equated the feeling better with not eating the gluten. My bowel movements became more normal in consistency and regularity. My husband and daughter were supportive, but their diets changed too. We all ate more "whole" foods and convenience went out the window. After about 2 months, they apologized to me for ordering a pizza...they didn't need to apologize - trust, I didn't want their lousy pizza.

    About 6 months in, at the end of summer, hubby brought home a beautiful Jersey tomato, and a loaf of fresh soft white bread. I wanted a tomato/mayo sandwich so badly. I thought, ok, this is the test, and made one for myself. I relished the first bite, and the second. I hesitated, wondering if I was going to have a violent reaction, or no reaction, while the sandwich worked its way through my system. i kid you not - after eating half, I started feeling a little queazy in the stomach, so I decided to not eat the rest, and threw it out. Within the hour, I had urgent diarrhea and was sick for days. DAYS.

    Recently, I chose to eat at a friend's house (she makes the best meatballs) and I had not had her cooking in literally years. I cannot attest to how much breadcrumb/gluten her meatballs contain, and I brought my own GF pasta because, after all, I don't have celiac disease, and I ate 3 of her meatballs with my own pasta. This was 7pm. I thought through the remainder of the night "great, I'm home free." At 6 a.m., I was sick to my stomach like snakes were working their way through my intestines. Shortly after, I was on the toilet. By 1 p.m., I had been to the toilet 5 times. For dinner, I had vegetable broth, some veggies, and rice. It took me THREE DAYS to get over eating 3 meatballs. My husband no longer teases me, and felt quite sorry for me during this, but also blamed my bad choice saying I should, by now, know better. Well, that was the last "test" for me how my body reacts to gluten.

    So, no, I do not have a Celiac diagnosis, and no, I'm not "fad" dieting or trying to "eat healthy."

    I often resent the resentment of people with Celiac disease on the internet. A friend recently was diagnosed with Celiac disease, and I have been both helpful and sympathetic, and been a deep pool of knowledge for her - as a matter of fact, when she was getting sick, I told her she might have Celiac disease and I was right.

    So my 2 cents is, even though I don't have the diagnosis, and perhaps no damage is being done to my intestines, I avoid gluten because when I was eating it, I was sick - and not eating it makes me feel better - and eating it by choice, again, twice, has made me sick.

    I'm sorry for people with Celiac disease, but my decision to avoid gluten is just as valid, even though there is no diagnosis for gluten sensitivity.

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