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Feeling Dismissed

Googles

By Googles
in Coping with Celiac Disease

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Googles Community Regular
Googles
Posted

I'm not sure if dismissed is the right word. Sometimes when talking about Celiac with people (especially one person) they will bring up that the rate of Celiac (or it's diagnosis) has been increasing over the last 20-30 years. He will then say that it must have something to do with the environment (changes in wheat etc). I'm not challenging whether or not that is an accurate reason (beyond more knowledge about it) for the amount of diagnosis. However, when people say this it makes me feel like they are dismissing my illness. That because it is a change in the "environment" that is causing it, it is somewhat my fault for having it. That it isn't as legitimate of a diagnosis of illness as other people's illnesses. I know this isn't what they are trying to imply, but this is what it makes me feel. Does anyone else experience this or anything similar?

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mamaw Community Regular
mamaw
Posted

I think people are becoming more educated about celiac & doctors ( a few) are understanding the disease more & are more willing to do testing...

I also truly believe that wheat today is not the same wheat our great grandparents ate...as with almost the whole chain .....it has become altered in some form.. I seen today where soon we will be able to buy beef that is grown in a dish rather than from an animal.not for me, any of it..

Millions of people , not enough food so they alter the food to make more faster not better & healthier.....the worlds food chain is tainted for sure....

A few months back rice from overseas was to contain ground plastic & sent to the US for sale...

I don't think your friend was making light of your celiac but trying to figure out or thinking why many have this disease....

just my two cents......

mamaw

kwylee Apprentice
kwylee
Posted

I agree with Mamaw. I would have wondered about your friend's comment about so many people having celiac these days, if it would have been delivered in the vein as, "I see, another one of those gluten avoiders I see in the news". But since it was followed up with a clear and understandable reason for the upswing in diagnoses, I just gathered from your post that the friend was just being logical and almost caring. Of course, I wasn't there and maybe there is much more to it. But no sense being stressed over a comment that meant nothing.

melikamaui Explorer
melikamaui
Posted

I had a similar situation happen awhile ago. I posted an article about celiac disease to my facebook page and a friend wrote back questioning why so many people seemed to have the "disease of the day" now. At first I took great offense to her comment, but after thinking about it I decided it's actually a legitimate question and went in search of the answer. Why are so many people being diagnosed now? Why, after nearly 40 years of suffering, did I finally get diagnosed? I came to the conclusion that it is simply because more doctors are aware of it. They used to think it was an extremely rare disease and would therefore not know to look for it. Thanks to the great strides celiac disease has made in Europe I believe that American doctors are finally recognizing that celiac disease is much more common than first thought. This is what I explained to my friend. She genuinely thanked me, and agreed that my theory makes sense. :)

Googles Community Regular
Googles
Posted
  • Author

It isn't that I think he is wrong. I understand that he processes his thoughts out loud. And he wasn't trying to be dismissive. It is just the emotional reaction that I was having. I guess since so many people are "gluten light" and are like it is just the "diagnosis of the time" (I work in a field where there are diagnosis that go in cycles and so over diagnosis or misdiagnosis is a problem). I know that my emotional response to his comments are out of proportion to what he said and what he meant. But I still seem to be having an emotional reaction to his comments. I guess that is what I am more talking about. It is my emotional reaction to what he had to say, not what he had to say specifically. I grew up in an abusive family and my feelings and experiences were often discounted as me being over emotional or having unrealistic expectations (to not be abused). So I know I'm really sensitive to feeling like my experience is being discounted.

sharilee Rookie
sharilee
Posted

I was recently diagnosed myself and I have encountered a lot of the same comments. I think most people mean well and are just trying to understand celiac but at the same time it does feel like they are downplaying what we have.

dani nero Community Regular
dani nero
Posted

Seems to me your friend was trying to explain or discuss why "you" are feeling poorly and what is making "you" feel that way because he cares.

We always interpret people's intentions based on the way we are feeling. It's normal to feel that way and have these misinterpretations.. and it's a good thing that you are reminding yourself that your illness is responsible for these feelings and that they are not caused by reality :-)

When I'm feeling down because I got glutened I usually always have negative and dark feelings like no one is on my side and no one understands me when in fact it is the opposite. If I'm having a really bad reaction to gluten, I can isolate myself and stop contacting friends because I see myself as an ugly loser who has no place in this life.

Life would be brighter and easier to enjoy if you keep reminding yourself that your psychology is not so stable when you're off the gluten-free wagon lol :-)

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kwylee Apprentice
kwylee
Posted

Life would be brighter and easier to enjoy if you keep reminding yourself that your psychology is not so stable when you're off the gluten-free wagon lol :-)

This is so true. I don't have a similar background as you, Googles. I grew up in a pretty well balanced family (as families go, haha), so that wasn't it for me, but I lived with an undercurrent of "dread" for a number of years before I finally found the gluten connection. Now I always gauge my level of health by my feeling of well being, and have found that, although it's never as bad as before, I can sense that same feeling when I do come into contact with CC.

It's so much easier to see people for what they are (or aren't) if you yourself are feeling what I now call "giddy good".

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