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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • 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.