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Will Celiac Ever Be A Trait And Not A Disease?

foodiegurl

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foodiegurl Collaborator
foodiegurl
Posted

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
foodiegurl
Posted
  • Author

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

psawyer Proficient
psawyer
Posted

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
hannahp57
Posted

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
lizard00
Posted

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
GFinDC
Posted

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

OptimisticMom42 Apprentice
OptimisticMom42
Posted

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

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pele Rookie
pele
Posted

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
mushroom
Posted

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
lizard00
Posted
So we have "The Flours" :)

LOVE IT!!! :lol::lol:

ang1e0251 Contributor
ang1e0251
Posted

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
cmom
Posted

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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    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

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    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
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