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Celiac Disease Or Difference?

ravenwoodglass

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ravenwoodglass Mentor
ravenwoodglass
Posted

Hi All, I have a question. I was diagnosed after 40 years of severe illness. I have a bit of a problem with calling myself diseased at this point. I am healthier than I have been since I was 5 and my symptoms began. I feel strongly that I simply have a genetic difference, I am NOT diseased now but I sure was before I went gluten-free. Does anyone other than me feel this way?

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nettiebeads Apprentice
nettiebeads
Posted
Hi All, I have a question. I was diagnosed after 40 years of severe illness.  I have a bit of a problem with calling myself diseased at this point. I am healthier than I have been since I was 5 and my symptoms began. I feel strongly that I simply have a genetic difference, I am NOT diseased now but I sure was before I went gluten-free. Does anyone other than me feel this way?

<{POST_SNAPBACK}>

I prefer the term disorder :P:P:P

In all seriousness, it is not a disease in the sense of a virus attacking you. In this case disease is an archaic term - there are better terms for celiac disease but the label has been assigned and so I'm sure it will stay.

FaithInScienceToo Contributor
FaithInScienceToo
Posted

Unfortunately, yes, I do see this as 'a disease' ...

For the following reasons:

1) My body HAS been damaged...and in ways that will not go back 'to normal'...ADD, and a very poor memory for details, for instance...not to mention the lack of muscles over my lifetime...yes, I can put some muscle back on, but I will never reach my full potential, had I not been damaged by gluten.

2) I know, unfortunately, that I WILL continue to be damaged...as it is IMPOSSIBLE to live 'a normal life' and not end up getting 'poisoned' again...I cannot be a hermit...I HAVE to take chances, yet I rarely do...

I also think it is best for US to keep the label 'disease,' and to not be uncomfortable about it, because it highlights the severity of this...celiac disease cannot be minimized BY US - others need to know it IS a serious problem.

IF there is a drug one day that can be given to children who are genetically tested at birth, to prevent the damage, then 'disorder' would fit.

But, this is just my perspective...

I am 48, had been BADLY sick for at least 20 years before being properly diagnosed, and am gluten-free now since 1/1/05 - perhaps I have years to go before I'll feel 'normal'...yes, I do feel MUCH better...but, I still have lingering symptoms, and I KNOW m brain has been damaged...it is not fun to have to admit to it, but it's what it is...I have a disease, and it's ok. I can deal with it, I am dealing with it.

I live in a disease state when I have gluten in my body...

Just life someone who is in a disease state when they have flu...

BUT, I am damaged...permanently...from gluten.

So, I feel that I 'have' this disease...just like someone has herpes...it doesn't go away...it stay in my body...waiting for gluten...they have a veneral disease...I have an auto-immune disease...

OK...so...that was a bunch of 'free flow thought"...I am tempted to go back and edit...

But, I won't.

I have Celiac Disease....not celiac disorder...

just like a diabetic has diabetes - an endocrine disease...

OK...enough of my 22 cents...

I respect your thoughts about this 'label' of disease...those were mine, based on what I have lived with, and live with now...'disease' seems appropriate, to me -

Gina

VydorScope Proficient
VydorScope
Posted

I perfer the term disease becuase it has a "serious" tone to it that fits. If called it "different" then otehr ppl would tend to think less of it, and treat it more like a choice then a very real, and very serious disease.

Its all about preception.

celiac3270 Collaborator
celiac3270
Posted

Technically, it is a disease--it doesn't need to have a virus involved--for example, take an autoimmune DISEASE like juvenile diabetes--no virus involved, but it's still an autoimmune disease--likewise is celiac.

Do I think of it as a disease, though? Yes and no, more on the no side. I think so because it is technically and because it damages me. In terms of how I handle it in everyday life--no. I'm normal in every other way except that I eat slightly different food. I think of diseases as being more debilitating (as untreated celiac can be) but in a healthy state I don't think of it as being like a disease. I basically view it as being like an allergy, but with less dangerous short-term consequences.

Guest BERNESES
Guest BERNESES
Posted

I think of myself as a person WITH celiac disease as opposed to a celiac. Being a celiac, to me is like the difference between being learning disabled and a person WITH a learning disability. I dislike it when someone refers to us as celiacs. We are PEOPLE! :P

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
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    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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