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How Do You All Explain It?


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9 replies to this topic

#1 Firegirl43

 
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Posted 10 October 2005 - 01:45 PM

I have been gluten-free for about alittle over a month. I have tried to explain it to people( friends , relatives) why I cant eat all the samethngs they do. They tell me it is a wheat allergy. But its not right? I am really confused and frustrated with the whole dang thing. So if anyone could help that would be really really cool :)
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SARAH

Celiac since 05
egg allergy since 08

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#2 tarnalberry

 
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Posted 10 October 2005 - 01:51 PM

I have been gluten-free for about alittle over a month. I have tried to explain it to people( friends , relatives) why I cant eat all the samethngs they do. They tell me it is a wheat allergy. But its not right? I am really confused and frustrated with the whole dang thing. So if anyone could help that would be really really cool :)

<{POST_SNAPBACK}>


An easy way to explain it is to say "It's not an allergy - that's one type of immune response. It's an intolerance, which is a different type of immune response. This one happens to be an autoimmune response, which means that consuming gluten will cause the body to damage itself. That doesn't happen in an allergic response."
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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#3 KaitiUSA

 
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Posted 10 October 2005 - 01:56 PM

I sometimes will say that it is an autoimmune disorder and my body will damage itself if I have any gluten.
It is NOT an allergy..that produces a different reaction.
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Kaiti
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#4 skoki_mom

 
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Posted 10 October 2005 - 03:17 PM

Right, it's not an allergy! Just as the others said, I say it's an autoimmune disease, my body detects gluten as poison and destroys itself. I get odd looks sometimes, but oh well!
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LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

#5 MySuicidalTurtle

 
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Posted 10 October 2005 - 03:20 PM

Sometimes there isn't time to go into details so I say "Yes, it is sort of like an allergy but it is much worse!" If there is more time and people want to know more I talk about it being genetic, an auto-immune disorder, and the villi in my intestines gets detroyed. As long as they understand it's serious then that's good.
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#6 tiredofdoctors!!!

 
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Posted 10 October 2005 - 04:58 PM

To those people in my family who will understand, I tell them that it is an autoimmune disease. To those who don't, I tell them that "compounds" (sounds better) that are in wheat, oats, barley & rye, and anything MADE from them produce a substance that destroys cells in my brain and retinas. I still don't think they understand, but it sounds bad enough that they just say "Oh . . . . ." To people in restaurants, quite frankly, my daughter is the one who is more vocal. She tells them about my condition, that it is a derivative of Celiac, and that it is CRUCIAL that none of my food comes into contact with . . . . . So far, it's been pretty easy. Of course, I've only been gluten-free for 3 weeks.
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Lynne

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#7 quantumsugar

 
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Posted 10 October 2005 - 05:59 PM

When people ask if me if it's an allergy, I usually say something along the lines of...

"it's like an allergy, in that even a little bit is harmful, but instead of an allergic response (releasing histamine into my body), my body actually has an auto-immune response and attacks itself; the response causes a variety of symptoms and lasts for a lot longer than an allergic one"

This tends to work pretty well for explaining the differences and some of the severity. People are usually pretty interested and ask more questions, if they don't, at least they've got some idea of what happens. The short way I do this is: "I have an auto-immune disease that causes my body to attack itself when I eat gluten"
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HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,5)
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#8 nettiebeads

 
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Posted 11 October 2005 - 05:07 AM

I have been gluten-free for about alittle over a month. I have tried to explain it to people( friends , relatives) why I cant eat all the samethngs they do. They tell me it is a wheat allergy. But its not right? I am really confused and frustrated with the whole dang thing. So if anyone could help that would be really really cool :)

<{POST_SNAPBACK}>

One of the ladies at work refers to celiac disease as an allergy. I don't bother to correct her as at least she understands that I cannot have gluten products. I usually explain it as an autoimmune disorder. If they want details I tell them that they probably don't want to hear what happens as the subject comes up when we're eating. If people insist, I tell them in about 24 hours after eating gluten I get really bad D and severe painful gas. That usually shuts them up as it is not a dinner table subject. If the people don't understand, don't dwell on it too much. They are lay people and lots of drs. don't get it! You just keep on educating yourself so you can be as healthy as possible!
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#9 gabby

 
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Posted 13 October 2005 - 08:00 AM

For people who are just curious (but don't really want to know the whole story) I tell them that it is like a peanut allergy. Everyone knows someone who is, or who has a child who is allergic to peanuts. Then I tell them that having just a tiny bit of gluten is just like having one tiny peanut. This usually satisfies their curiosity and they then understand the matter.

Now for those people who do not 'believe' in celiac disease (and there are many out there) and who think you are trying to be eccentric....the best way to deal with them is to just politely give them the peanut story. If they have the nerve to question you further about what they've read or heard....just say 'that's very interesting' and then change the subject.

Remember, just because people ask questions...it doesn't mean they always deserve an answer.
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#10 LLCoolJD

 
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Posted 13 October 2005 - 01:29 PM

I just tell friends and acquaintances that "I'm *essentially* allergic to wheat, barley, rye, and oats." Sure, it's not a truly correct way to put it, but it gets the point across. I rarely feel the need to say something like "I have an autoimmune condition where the complement cascade inflames my intestines whenever my immune system detects a peptide chain found in wheat, barley, rye, etc....."

Bringing up the whole autoimmunity & inflammation thing raises a lot more eyebrows and, quite frankly, I prefer downplaying the extent of the condition. I don't want to be seen as someone with a serious disability/someone who isn't "healthy".
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