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Will Celiac Ever Be A Trait And Not A Disease?


foodiegurl

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foodiegurl Collaborator

I just hate that Celiac is a disease, it is so depressing. If so many people have it, 1 in 133, and many people are being diagnosed as kids, it seems it would be more of a genetic trait than a disease.

I just hate saying "I have celiac disease", and always drop off the disease part. I don't want to be thought of as sick, especially if I am someone who sticks to being gluten-free 100%.


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foodiegurl Collaborator

no one else feels the same way?? :unsure:

psawyer Proficient

Weekends are quiet here, and Sundays more so.

I have heard of one person who refers to it as "the celiac difference."

I also know somebody who says that if you follow the gluten-free diet carefully, then you no longer have celiac disease--you are cured.

I guess that it is a matter of semantics and is open to discussion.

For those of us who know, it is a "choice" that enables us to lead a normal life.

hannahp57 Contributor

i totally agree.. i almost never say celiac disease if i dont have to. i leave it at "im gluten intolerant" usually

i think if it was ever a trait it would be like having a risk for heart disease..that's still a disease but noone is going to look at that like a trait either... either you're at risk (your family has a history of it) or you HAVE it... or you dont at all. i hope what i am saying makes sense...

lizard00 Enthusiast

I hate it, too, to say I'm 'diseased'.

On the other hand, the word disease catches people's attention. People took me seriously to begin with, but you throw the word disease at them... it's not just some diet that you're doing to lose weight or for attention.

I'm not sure it would ever change. It's an autoimmune reaction to a normal food substance. So, in that respect, I don't know if the medical community would change it's terminology. But, maybe as awareness continues to grow, another term will be coined. It's like having 'the sugar(s)', instead of diabetes. (At least in the south anyway. NO ONE has diabetes here. They all have 'the sugar(s)' :lol: )

GFinDC Veteran

You could try saying "I have non-tropical sprue" instead. That is kind of exotic sounding terminolgy by comparison.

OptimisticMom42 Apprentice

NO ONE has diabetes here. They all have 'the sugars' :lol: )


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pele Rookie

I absolutely agree with you. And I don't feel that celiac is a disease. I think of it as a natural reaction to poison. There are those who say that the whole disease thing is a precursor to medical "treatment' in the form of pills.

mushroom Proficient

Well, I never refer to it as a disease; I just say I am a celiac (don't know that for sure, but prove I'me not!!!haha) and that's that. If someone questions, it is gluten intolerance that makes me sick.

lizard00 Enthusiast
So we have "The Flours" :)

LOVE IT!!! :lol::lol:

ang1e0251 Contributor

In a restaurant or potluck dinner, I say I have some very serious food allergies. That gets peoples' attention and they can understand it. With my family or someone who may have the same condition, I do say celiac disease because they already don't understand it. They need to hear the seriousness of the word "disease" to take my limitations seriously. My sister just blows me off. I think she's secretly afraid she has it. She doesn't take her diabetis very seriously, IMO, so why should she follow what I'm trying to tell her? My Mom kind of understands but just now in discussing a restsurant she said that I'm kind of picky about my food. I said "picky?" you say that like I have a choice. I know she wants to understand but it's so complex it's just kind of too much for her.

Sorry, this got off to a rant. That phone call bugged me.

cmom Contributor

Yeah, I have a MIL that continually says that I "won't" eat certain things, but never I "can't" like she thinks I'm trying to get attention. She gets aggravated when we take her somewhere and don't stop to eat. My DH has said several times that I can't just anywhere and she always says, "Well, she can eat green beans and corn....blah blah blah". And sometimes I do take chances, just to keep down the peace. She just doesn't get the whole cross-contamination thing. She also usually watches every bite of food I put in my mouth... :angry:

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
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