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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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    • trents
      Should I get a second opinion?

      By trents · Posted

      I would ask the GI doc about the elevated IGA score of 401. That one is what we commonly refer to as "total IGA" and also known as "Immunoglobulin A (IgA)". It could be nothing but it can also indicate some other health issues, some of them serious in nature. I would google potential causes for that if I were you. Also, if there is a chance the GI doc will want to do more testing for celiac disease, either antibody testing or an endoscopy with biopsy, you should not cut back on gluten consumption until all celiac disease testing is done. Otherwise, you will invalidate the testing.
    • shell504
      Should I get a second opinion?

      By shell504 · Posted

      Hello. I apologize. I didn't know there wasn't a standard.  The standard listed  for the IGA is normal range 47-310.  The others were all listed as <15.0 u/l is antibody not detected and 15> antibody is detected.  And the negative one the standard is negative.  It is a normal PCP dr. I do have a second opinion appt scheduled with a GI specialist in 2 weeks. Honestly, I haven't cut out gluten at all. I just switched to whole fibers and everything has been getting better. She wanted to do the test just to check, which I was fine with. We'll see what the GI dr says. Thank you for commenting. 
    • trents
      Mistakenly eating gluten

      By trents · Posted

      It is also possible that since eating the fries you have been glutened again during the week. I would double check the food in your cupboard and reread the ingredient lists. Food companies can and do change their formulations from time to time such that something that used to be gluten free is no more. What I am saying is, don't assume the distress you are experiencing comes from one incident of glutening. There could, coincidentally, be another one on it's heels. 
    • trents
      Should I get a second opinion?

      By trents · Posted

      Welcome to the forum, @shell504! The IGA 401mg/dl is not a test for celiac disease per se but a check to see if you are IGA deficient. People who are IGA deficient will produce celiac blood test antibody scores that are artificially low which can result in false negatives for the individual antibody tests such as the TTG IGA. You did not include reference ranges along with the test scores and since each laboratory uses custom reference range scales, we cannot comment with certainty, but from the sheer magnitude of the IGA score (401) it does not look like you are IGA deficient. And since there are no annotations indicating that the other test scores are out of range, it does not appear there is any antibody evidence that you have celiac disease. So, I think you are warranted in questioning your physician's dx of celiac disease. And it is also true that a colonoscopy cannot be used to dx celiac disease. The endoscopy with biopsy of the small bowel is the appropriate procedure for diagnosing celiac disease. But unless there is a positive in the antibody testing, there is usually no justification for doing the endoscopy/biopsy. Is this physician a PCP or a GI doc? I think I would ask for a second opinion. It seems as though this physician is not very knowledgeable about celiac disease diagnositcs. Having said all that, it may be that you suffer from NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease. The two gluten disorders share many of the same GI symptoms. The difference is that NCGS does not damage the villous lining of the small bowel as does celiac disease. NCGS is 10x more common than celiac disease. The antidote for both is complete abstinence from gluten. Some experts believe NCGS can be a precursor to the development of celiac disease. There is not test for NCGS. Celiac disease must first be ruled out. So, if it becomes apparent that gluten is causing distress and testing rules out celiac disease, then the diagnosis would be NCGS. Hope this helps. 
    • shell504
      Should I get a second opinion?

      By shell504 · Posted

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