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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,019
    • Most Online (within 30 mins)
      7,748

    TryingHardToGoGlutenFree
    Newest Member
    TryingHardToGoGlutenFree
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      First off, I’m sorry to hear about the challenges you’ve been facing, both with your recent celiac concerns and the dermatitis you've been dealing with. It’s clear you’ve put in a lot of effort to figure this out, and it’s frustrating to still have lingering questions. Regarding your TTG-IgA result of 11.6 U/mL, you’re correct that many labs and celiac experts consider values above 10 to be indicative of possible celiac disease. However, interpretation can vary depending on the lab and the individual. It’s worth noting that slightly elevated levels can also sometimes occur with other autoimmune conditions, including Hashimoto’s thyroiditis. However, since you already have Hashimoto's and a strong family history of celiac (your daughter’s diagnosis), the most likely explanation is that you also have celiac disease. Here are a few steps you might consider to gain peace of mind: Consult a Gastroenterologist: They have more expertise in celiac diagnostics than a general PCP. They may recommend additional tests like an EMA (endomysial antibody) test or even genetic testing to confirm your predisposition further. Consider a Small Intestinal Biopsy: If there’s uncertainty, a biopsy remains the gold standard for celiac diagnosis. It can provide clarity, especially since your TTG-IgA is borderline. Monitor Symptoms on a Gluten-Free Diet: Since you already have another autoimmune condition and a chronic rash (which could resemble dermatitis herpetiformis, a skin manifestation of celiac disease), some doctors might suggest trying a strict gluten-free diet for a few months under supervision. If you notice a marked improvement, it might be telling. Keep in mind that if you go on a gluten-free diet before an endoscopy/biopsy, you will need to do a gluten challenge and eat lots of gluten daily for at least two weeks before the biopsy. As for your genetic results from 23andMe, having two copies of a celiac-associated gene (HLA-DQ2 or DQ8) does increase your risk of developing celiac disease considerably. However, about 30-40% of the general population carries these genes, and only a small percentage actually develop the disease. The genetic predisposition combined with your elevated TTG-IgA and symptoms could justify further investigation. Lastly, regarding your chronic "dermatitis," it might be worth bringing up the possibility of dermatitis herpetiformis to a dermatologist familiar with celiac disease. This condition is often misdiagnosed as eczema or another dermatitis type and may not respond well to typical creams. A skin biopsy taken near (not on) an affected area can help diagnose it.
    • BertoleAmur
      I’ve been gluten-free for a while too, and I know how frustrating it can be when your body reacts unexpectedly. I haven’t personally experienced what you’re describing with Ozempic, but I did have a situation where I took a break from certain supplements and noticed my body felt a lot better.
    • Scott Adams
      Two of our moderators @knitty kitty and @Wheatwacked know a lot more about nutrients and may be able to offer some more help, so hopefully they will chime in here.
    • aperlo34
      Hi Scott, thanks for the reply.    I’m currently taking  3000IU vitamin D3 centrum multivitamin  500mg vitamin C 1000mcg B12 naturemade softgel Omega 3 (for dry eyes) My latest labs for vitamins were D - 43.6 (range 30-100) B12 - 406 (range 232-1245) Folate - 11.4 (range >3.0) ferritin - 117 (30-400) magnesium - 2.3 (1.6-2.3) Calcium - 9.9 (8.7-10.2)   I am 29 and really struggling with this emotionally, I was caught by surprise 2.5months ago with this dx and pretty much no symptoms that I really knew of besides low ferritin. When I first met with the GI doctor in July and he ordered the endoscopy/colonoscopy, that was around when the twitching started. I’m unsure if it’s the anxiety of it all (I have been consistently freaking out since the scopes were ordered, losing sleep, obsessively googling etc.) or if it’s celiac related. I’m horrified that I might have something else wrong with me.  Additionally, I’ve been getting some mixed opinions - dietician told me to stop the additional b12 because my multi had b12, but I see online that some people think b12 levels should be well over 500.    Some other things that I’ve experienced since I went gluten free are more “sinus” headaches, facial pressure, some cramping in my left side (could be postural problems I’m dealing with) and dry eyes - my eye doctor has me on some eyes drops that really help and this is a work in progress. And no my mouth isn’t dry too 😅   I’m absolutely beside myself with fear of other AI diseases and have no one I can really turn to (besides online) that has dealt with this. I have no idea what’s in my mind and what is a real symptom anymore because I’m so hyper aware of every sensation in my body! Thank you so much in advance for any input/guidance.    
    • Yaya
      I never had muscle twitching that I would relate to Celiac Disease (celiac disease).  However, I now have Long Covid and muscle twitching, burning, and other issues cropped up with that.  Predating all was restless leg syndrome (RLS).  Are you talking about RLS?  I've had that since '99.  It gets progressively worse.  
×
×
  • Create New...