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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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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
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      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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