Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac Disease Or Difference?

ravenwoodglass

Recommended Posts

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,027
    • Most Online (within 30 mins)
      7,748
    toyatang
    Newest Member
    toyatang
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Celiac pain relief

      By cristiana · Posted

      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
    • Bebygirl01
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

      Perhaps you would still like to answer the questions I posed on this topic, because that is all I asked. I am curious to know the answers to those questions, I do not care about the background of Dr. Osborne as I am more aware of the situation than you are, and he is also one of the best known authors out there on Celiac disease. But did you even bother to read the three Research Papers I posted by NIH? You must be one of those who are only gluten intolerant and not yet reacting to all glutens aka grains, but I AM one of those who react to ALL the glutens, and again, that is one of the two questions I originally posted on this matter. NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing. I started with the failed FDA explanation of what Gluten Free is and I stayed sick and got even sicker. It wasn't until I came across NIH's papers and went off all grains that I realized that in fact, I am Celiac and reacting to all the glutens. IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. Those who are just getting started with learning about grains etc., can take it easy by just being "grain free' and eating a lot of meat, vegetables, etc. or whole foods as God has intended, without buying so called gluten free garbage out there that is making them sick and the whole reason they are not better. I tried the stupid gluten free garbage and it didn't work, and that will make anyone want to give up, it is better to teach the entire truth and let the patient decide, rather than give them misinformation and lies.
    • Nicola McGuire
      My son newly diagnosed

      By Nicola McGuire · Posted

      Thank you so much I will speak to the doctor for dietician apt . Thank you for your advice Beth much appreciated 
    • Scott Adams
      Celiac pain relief

      By Scott Adams · Posted

      Oh no, I'm sorry to hear about the accidental gluten! This article, and the comments below it, may be helpful:    
×
×
  • Create New...