• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I Hate The Word "disease"
0

11 posts in this topic

Recommended Posts

divamomma    7

I was very annoyed and disappointed yesterday at the library. I was looking for Dana Korn's book regarding children and celiac disease. The aisle where it was located had a big sign above it that said "DISEASES". I felt awful. It should not be labelled as a "disease" and I really hate the whole term "celiac disease". I usually just call it celiac but why can't they rename it?? I am glad my daughter who was with me can't read that well yet! Just needed to vent.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


jjchenoa    1

I was very annoyed and disappointed yesterday at the library. I was looking for Dana Korn's book regarding children and celiac disease. The aisle where it was located had a big sign above it that said "DISEASES". I felt awful. It should not be labelled as a "disease" and I really hate the whole term "celiac disease". I usually just call it celiac but why can't they rename it?? I am glad my daughter who was with me can't read that well yet! Just needed to vent.

In my book dis-ease is a perfect description! ;) I think the word has bad connotations that bring up all kinds of preconceived notions but it just means an organ that doesn't function properly or a condition that gets in the way of proper function. Our kids probably make less of a deal about the facts than how we as their parents react to the facts so if you explained the meaning to her she would probably shrug and accept what you tell her. I bet most people have or will have one disease or another.

  • Upvote 1

Share this post


Link to post
Share on other sites
bartfull    565

Back in the mid 80's when Mom was diagnosed, it was called Celiac SYNDROME. I'll have to look it up...

Share this post


Link to post
Share on other sites
Gemini    785

I was very annoyed and disappointed yesterday at the library. I was looking for Dana Korn's book regarding children and celiac disease. The aisle where it was located had a big sign above it that said "DISEASES". I felt awful. It should not be labelled as a "disease" and I really hate the whole term "celiac disease". I usually just call it celiac but why can't they rename it?? I am glad my daughter who was with me can't read that well yet! Just needed to vent.

I couldn't agree more! This is one disease that a person has control over and you can turn it around 100%,without meds. How many other issues can that be said about? I do not lump Celiac under the same category as cancer or other problems which you don't have as much control over and requires difficult treatment to survive. I think it's a more positive attitude towards the whole thing.

  • Upvote 1

Share this post


Link to post
Share on other sites
Sarah Alli    9

I had pretty severe asthma- unquestionably a disease- growing up. It never bothered me or made me feel inferior, it was almost a badge of pride for some reason. I had my special inhalers and breathing machines and could leave class to go to the nurse whenever I wanted!

I think you underestimate your daughter. She'll do just fine. After all, a disease is only abnormal functioning... and we're all a little abnormal.

  • Upvote 3

Share this post


Link to post
Share on other sites
Ads by Google:


Takala    413

It is an auto immune disease. There are trolls all over the media trying to pretend that it's a fad and a neurotic response to anxiety. They might be said to be having another sort of malfunction. I'd rather have this one than theirs.

  • Upvote 2

Share this post


Link to post
Share on other sites
Reba32    41

call it anything less than a disease and people will treat it as nothing more important than acne, or a sprained ankle. Say "disease" and people will take it a little more seriously when you say you can't eat gluten. Call it a "syndrome" and it's somehow not life threatening anymore. Celiac *is* life threatening, and very worthy of the moniker "disease".

  • Upvote 2

Share this post


Link to post
Share on other sites


Ads by Google:


soulsister    0

call it anything less than a disease and people will treat it as nothing more important than acne, or a sprained ankle. Say "disease" and people will take it a little more seriously when you say you can't eat gluten. Call it a "syndrome" and it's somehow not life threatening anymore. Celiac *is* life threatening, and very worthy of the moniker "disease".

I agree, when I recently told my friend that I had received the diagnosis of "Celiac" her response was .." oh, that's gluten sensitivity....that's no big deal". I told her hit is an auto immune disease, very serious and if I went much longer misdiagnosed, the result could have been potentially lethal. I only knew this because I immediately began researching Celiac once I got the biopsy results...I had never even heard of Celiac before.....come to find out, I have a first cousin with this condition! I am glad it is the ranks of "dis-ease"....and I would imagine with this particular "category", teachers will pay closer attention to the specific requirements for their students (when notified).

Share this post


Link to post
Share on other sites
Gemini    785

Back in the mid 80's when Mom was diagnosed, it was called Celiac SYNDROME. I'll have to look it up...

The reason some things are lumped as a syndrome and others are called diseases is because syndromes usually have symptom overlap so it can be hard to diagnose which problem you have. Many other autoimmune diseases, which are linked to Celiac, have the same symptoms as Celiac so that may be why it was once referred to as Celiac Syndrome. Sjogren's, Hashi's, Fibromyalgia, and Lupus all share symptoms and can be difficult to diagnose until symptoms become advanced. Maybe Celiac advanced to disease state when diagnostic tools made diagnosis easier and it could be defined better? I don't know but I still believe that classifying Celiac as a disease is overkill. I was deathly ill at diagnosis yet to think I completely turned things around after 3 years and all I did was go gluten free. No meds, surgery or prolonged treatment, except a dietary change. It never ceases to amaze me. I did develop other autoimmune problems along the way but they have gotten much better with each passing year gluten free.....not cured by any means but better symptom-wise.

I look at what people who are diagnosed with cancer have to go through and they still may not survive....that is far more daunting than Celiac.

Share this post


Link to post
Share on other sites
Reba32    41

undiagnosed and untreated Celiac is most certainly deadly. It can kill you, just like cancer can. It's a slow and painful death for sure.

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,875
    • Total Posts
      938,438
  • Member Statistics

    • Total Members
      65,779
    • Most Online
      3,093

    Newest Member
    Roll Tide
    Joined
  • Popular Now

  • Topics

  • Posts

    • I'm sorry you're feeling poorly. As I read the good advice you already got and your message, I was wondering a couple of things. 1. You mention your very strict schedule that keeps you on track but it says eating decently well but it doesn't say cooking. If you are eating out a lot, that is clearly a place where you could be getting cross contaminated. 2. Do you have a roommate?  Maybe he/she is not aware of some of your issues (cooking with flour in the house etc) 3. How do you live on only 6 hours of sleep per night?  Maybe for a couple of nights that's enough, but generally speaking people need more sleep than that. Maybe long term sleep deprivation is playing into some of your illness? Good luck!
    • Thank you everyone for your replies. ravenwoodglass: Your advice was helpful  I’ll try to avoid items like this which have so many unnecessary and artificial ingredients – they make me feel out of control. A food and symptom diary is a great idea - especially when trying out new brands of foods. artistsl: Thanks for the tip – I don’t live in the US/UK unfortunately so I won’t be able to purchase this specific brand of kefir. However, I agree that it’s a good idea to try and find another brand which isn’t full of additives. It won’t be a problem.. I’m NCGS as well and I’m very familiar with brain fog and dizziness.. very unpleasant. As for the locust bean gum, I’ll definitely try to avoid it. I don’t think I have an issue with dairy but know that many celiacs/ncgs people do so it’s a good suggestion. cyclinglady: No, I don’t have an intolerance to corn in general.. but maybe I do have some kind of intolerance to the glucose fructose syrup.. it’s a very artificial and processed ingredient and this is not the first time I’ve found myself reacting in a bad way to an item that includes it. Jmg: Yes, the unflavoured ones would be safer, I think. I’m almost sure my reaction wasn’t to dairy as such but to one (or more) of the additives. The reason is that I’ve been eating lots of dairy products since I went off gluten and have been ok. The pattern is this (I guess): if it’s a normal dairy product such as a yogurt made of milk/cream + yogurt cultures (+ fruit + sugar), it’s ok. And unflavoured milk and all kinds of ‘real’ cheese are fine, too: mozzarella, cheddar, cottage cheese etc. Once a yogurt/kefir or another milk product includes additives or unnatural ingredients, there seems to be a problem. You’re right - there are other possible sources of cc.. I try to think about them one by one because it really gets very confusing when there are many possible sources of a glutening/cc.. it’s almost like an investigation. It’s a very good point though, thanks     Feeneyja: Thanks for the suggestion. As I said, for now I’ll probably assume I’m not dairy intolerant but will definitely be wary of it and bear it in mind because many of you guys have pointed it out.    
    • Hi, I’m sorry you’re not feeling well and sympathize with the lack of answers. It’s not usually normal to have reduced WBC, no. If I had reduced WBC I would want to make sure it’s not a rheumatoid autoimmune condition, so I might get an ANA and a urinalysis. Are you taking any medications? Do you have a rash? Family history of autoimmunity? On the other hand, the joint pain - how active are you every day? With me, though I am older, I find that if I don’t use my muscles, I will feel pain eventually. I know we tend to report what we’ve been eating on these boards, but I also think how much we move is important. I guess I would be most concerned about the WBC and the shortness of breath. The SOB could be anxiety, but the anxiety could be physiologically based. Or it could be something else. Is there a breakdown of your white blood cells by type? Plumbago
    • One of my daughters is milk intolerant. She had a history of mucus and phlegm and I didn't connect it right away. One day while drinking kefir she got a weird sensation in her throat and almost threw up. That happened twice. We cut milk and it has never happened again. The mucus is gone as well as an eye twitch/tick she developed.  So, it may be the casein in milk. 
    • Interesting- thank you for sharing. I saw my ND yesterday and she also suggested that after having been completely cleaned out for my procedures, my body could be trying to adjust. She is having me take a rest from the strong probiotics I was taking, and I'm focusing on eating foods that are more gentle (I tend to eat a lot of raw, very fibrous foods). 
  • Upcoming Events