Jump to content
  • 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

I Hate The Word "disease"


divamomma

Recommended Posts

divamomma Enthusiast

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.


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



Celiac.com Sponsor (A8-M):



jjchenoa Rookie

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.

bartfull Rising Star

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

Gemini Experienced

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.

Sarah Alli Apprentice

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.

Takala Enthusiast

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.

Reba32 Rookie

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".


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



Celiac.com Sponsor (A8-M):



soulsister Newbie

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).

Gemini Experienced

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.

Reba32 Rookie

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.

shadowicewolf Proficient

it is a disease after all (such things that can be deadly are classified as diseases).

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      32

      Does anyone here also have Afib

    2. - knitty kitty replied to lehum's topic in Super Sensitive People
      9

      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

    3. - Scott Adams replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    4. - Theresa2407 replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    5. - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748

    Michelle C.
    Newest Member
    Michelle C.
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
    • knitty kitty
      Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel.  Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).   Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.   The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.   Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.   Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here. Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.   The AIP diet has helped me.
    • Scott Adams
      The reaction one gets when they get glutened varies a lot from person to person.  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Theresa2407
      A gluten ingestion can last for many months.  Many years ago there was a celiac conference in Fl.  Everyone there got contaminated with some having difficulty 6 months to recover.  It will hit your Lympatic system and spread  through the body and effect your nevous system as well. Most times when I get glutened it is from a prescription med that wasn't checked close enough.  the Pharmacuticals change vendors all the time.
    • Hmart
      Thank you so much for the responses. Every piece of information helps.  I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday.  I haven’t had either breath test. I did ask about additional testing but the PA recommended me to a celiac specialist. Unfortunately the first available is mid-December.  As far as diet, I am a pescatarian (have been for 25+ years) and I stopped eating dairy mid-last week as my stomach discomfort continued. Right now, I’m having trouble eating anything. Have mostly been focused on bananas, grapes, nut butters, DF yogurt, eggs, veggie broth.   I ordered some gluten-free meal replacements to help.  But I’ll get all the items (thank goodness for Instacart) and try the diet you recommended to get me past this period of feeling completely awful.  Yes, my doctor diagnosed celiac. I was concerned it wasn’t right based on the negative blood test and my continued symptoms.  Even if you are ‘glutened’ it shouldn’t last forever, right? Is four days too long?   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.