I’m Angry

Yesterday, after sharing my most recent blog post, "A Day As A Celiac" I noticed some negative comments and I decided to address it loud and clear right here on the blog again today.  Basically, the commentator said that as a Celiac my story of a typical day was "extreme," represented "obsession," and that my life was probably a "sad, awful existence."  I was furious, but not because this person made those comments about my life.  Sharing myself so openly on a blog means I am gonna' get a little of that nonsense.  I was furious, because the comment came from a fellow Celiac.  

I am disheartened on the deepest levels to know that ignorance about this disease has to be battled in our own community!  If there are Celiacs actively undermining the serious nature of this disease and calling efforts to absolutely protect oneself from the very substance that makes one ill "obsession," how on earth will we ever get the non-Celiac population, let alone the medical establishment, to understand?  This person seemed to think an important step is learning to understand one's "limits of exposure."  I am a Celiac!  I can tolerate ZERO gluten.  I know my limit . . . it is ZERO.  

Here are a few important things to know about Celiac Disease:

-Symptoms & their severity vary widely.  I might have neuropathy, you might have diarrhea.  I might have anxiety so severe it requires medical attention, you might get mild indigestion.

-Regardless of symptoms or their severity, exposure to gluten in a Celiac causes damage to the small intestine.  That damage leads to other health problems, malnourishment all the way to intestinal lymphoma.  

-Celiac Disease is extremely under- and misdiagnosed.  Three million people in the US have it & 90% of them don't know it yet.  

-Delay in diagnosis is on average 8-11 years and leads to a VERY increased risk of developing addition autoimmune disorders.  The longer undiagnosed, the more autoimmunes.

I went undiagnosed for over 10 years, many more Celiacs have gone far beyond a decade.  The damage to multiple systems in my body has been serious and may never totally heal.  I developed additional autoimmune disorders and many other food/product sensitivities.  The way I am addressing it is not "obsession" and has not made my "existence awful and sad."  I feel incredibly lucky to have found a method of managing my illness and am extremely empowered by the healing I have achieved to this point.  That healing is a direct result of my steadfast, focused commitment on my personal health.  My story is not unusual for a Celiac.  Many others have been here too and many others take just as much care to protect themselves from gluten exposure.  

As Celiacs, we should all be in this together, raising awareness, not helping perpetuate the idea that vigilance in protecting ourselves from the pervasive gluten in our environment is an "extreme obsession." 

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6 thoughts on “I’m Angry

  1. Good for you. I didn't think your care in avoiding cross-contamination was extreme. There does seem to be a lot of anxiety about it for you, which I generally don't feel to the same extent, but I am not nearly so sensitive to gluten exposure (in that I get mild to moderate symptoms that last a day, rather than being down and out for several days, as MANY celiacs are). Also, I was luckily diagnosed after only 6 months of symptoms, so I don't have nearly the damage from gluten that you do. I also suspect that your anxiety will decrease over time, and that things like checking shared utensils/plates for old bits of food will become automatic rather than feeling like you're paranoid. You don't get any less vigilant, but it just starts to be a habit rather than having to think it through every time. "It's only effort until it's routine," you know. 😉 And once it's habit, it doesn't feel so fraught.

  2. JT

    Your story is so strikingly similar to my story as a Type I diabetic. I was diagnosed 5 years ago and still spend a startling amount of time thinking about sugar/fructose content of food. Recently, I have started thinking about grains too - for many reasons. One of which is, of course, to lower my total carb consumption (as a Type I, it doesn't really matter if the "sugar" is actually from white sugar, HFCS, flour, or a banana... it's all going to raise my blood glucose and wreak havoc on my body if I don't get my insulin dosage correct.) My second reason is the increased risk of having another auto-immune disease at some point since I already have Type-I. With celiac disease being so commonly under-diagnosed, I feel like that's the one I need to look out for and protect myself from (if that's even possible) the most. So, I am taking measures now to cut out the gluten (like I said earlier, it's sort of the next logical extension from watching out for hidden sugar). Your comments about cross-contamination and personal care products were extraordinarily helpful to me because I hadn't even thought about that yet. Still working to cut out all grains... but shampoo and makeup may have to be my next target.

    Don't let discouraging comments get you down. You have to do what you know is right to maintain your own health so you can be there for your family. Unfortunately, many people without health problems aren't going to "get it". I can say I used to be one of those people too. I didn't understand what the big deal was about Type I until I had to deal with it day-in and day-out myself. Trust me, now I get it! It's similar to having children. When you don't have any, you can't possibly understand the feeling of being a mother - it's something you can only feel and empathize with TRULY once you become one yourself. If nothing else, your care and vigilance with your health now that you ARE aware and educated about gluten and its harmful effects are going to make you healthier than that seemingly "healthy" person who thinks they can eat whatever they want and get away with it. It will likely catch up to them eventually, unfortunately, and then they will "get it" too. In the meantime, keep fighting the fight and being a great educator and inspiration 🙂

    - JT

  3. Ang, I thought your "day in the life" was very good! I know first hand what your life had become and the trips to hospitals and not knowing if you were going to make it or not. I also know first hand what it's like to eat something that is labeled correctly but somewhere somehow there was cross contamination and have a reaction. I'm going through that right now. Yesterday I bought some "gluten free" granola made right here in Montana. Label read great but today I look like I'm 9 months pregnant, it's painful and I want to throw up. I won't be eating that again! Another problem is that the reactions vary as much as all the different kinds of exposures,one Celiacs reaction may differ from anothers so it's hard to pin point. I think you are doing a wonderful job of getting the message out there.

  4. Anonymous

    I think you're very brave , not only to be taking on that vigilance but also posting about it. I'm diabetic, almost certainly Celiac ( gluten raises my blood sugar faster and farther than sugar does) and had endometriosis (if that's how it's spelled). I wish I had found out about the food connection 50 years ago. It would have saved me a lot of pain and wasted life.

  5. I liked reading your blog post on the day of a Celiac.when you have food sensitivities that are that dangerous to ones health there is a lot of anxiety and fear that comes a long with that. I am Celiac and for me it causes extreme intestinal discomfort, massive headaches, numbness and tingling through out my body and extremely painful joints. The fear is not of the food itself but of the pain and suffering that will follow from that food.Like you work for me is the worst as not only can I not eat anything with gluten but I am also allergic to nuts, mushrooms, and tomatoes. I have had so many attacks at work regardless of how careful I am as touching a door handle after someone who has eaten something I can't if they have not washed their hands is enough to make me sick.living a life filled with the feeling the entire world might kill you if you not careful does make someone overly cautios and may appear as obsessive to someone who knows not what we go through.Thank you for sharing you life with us.sometimes on a bad day you can feel really alone and knowing there are people who understand is comforting if nothing else


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