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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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    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
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