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 Know I Am Being Waaaaay Oversensitive Here


skoki-mom

Recommended Posts

Billygoat Apprentice

LOL@"Old Lady" That's creative! :P

I don't understand why people are so insensitive. Maybe it's because I'm overly sensitive? I dunno. I don't think I am. I wouldn't like anyone calling me "a celiac", just as my friend suffering from breast cancer doesn't want to be called "a cancer".

Just don't get it...

<_<


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



Celiac.com Sponsor (A8-M):



Lima Newbie

An interesting question. When talking about coeliac disease a while ago I was gently corrected by someone who doesn't want to label herself as 'diseased' but always refers to herself as 'coeliac', or 'a coeliac'. I can see her point. At a work function a staff member asked me why I had a special meal (not all that special: a hard boiled egg and some lettuce) and I explained. She asked some questions and when I told her it was an immune disease she moved as far away from me as possible and hasn't let herself be in the same room as me since. I now prefer not to use the D word, too. I certainly don't feel diseased!

I don't mind being defined by my condition, if it promotes understanding. I've had quite a few people asking me thoughtful questions lately, at times as if that's the only topic of conversation with me they can find. Of course I hope they don't see me entirely in terms of my diet, but I'm touched they're thinking about it.

On the other hand, there's still a handful of people who wonder why I don't just get over it and stop making a fuss about my food. With such people I tend to mention the D word from time to time just to let them know it's a serious condition, not just a fad. But the people who really matter see me for what I am, dietary requirements and all.

Cheers, Lindy in Australia

tarnalberry Community Regular
She asked some questions and when I told her it was an immune disease she moved as far away from me as possible and hasn't let herself be in the same room as me since.

<{POST_SNAPBACK}>

I wonder if, by calling it an "immune disease" instead of an "autoimmune disease, like type 1 diabetes", she thought you had HIV. Many people mistakenly, and mis-informedly, make the assumption that HIV is the obvious immune disease, and then further mis-informedly, avoid that person.

jenvan Collaborator

I think I use the term celiac or celiacs b/c it is more concise when I am speaking...rather than saying "the other celiacs i know, or since i have celiac diease", i say "other celiacs or i'm a celiac...." so it doesn't bother me. i guess it would if someone was using it in a negative way, like...."those damn celiacs!" :P

skoki-mom Explorer

Your replies have been all been very interesting and honest! I'm glad to see I am not the only one bugged by it, but also realize I shouldn't be thin-skinned about it. I found a thread about "do you consider yourself sick", which I had to answer with a resounding "no"! I am not in denial that I have celiac disease, the bloodwork and endoscopy don't lie about that, and I am diligently following the gluten-free diet (I have even had gluten-free "food" related dreams.....can't I eat toast even in my dreams?? lol), but honestly, celiac disease has never made me sick a day in my life. In fact, I am more shocked that I could have as much damage as I do and *not* have any symptoms. Makes me wonder what else could be going on inside me I'm not aware of. Just calling myself "a celiac" in my mind makes me sound defective or something. OK, so maybe we *are* defective, but only a little bit, lol! As well, as long as I stick to the diet, I am a completely healthy person. I don't consider a person who has a nut allergy as sick, so why think of myself that way? I have a friend on a low-oxylate diet (she eats less than I do!), and I don't think of her as sick, I don't think of her as "a kidney stone" either. As well, like some of the rest of you have said, I would hope there are more interesting things about me than the fact I have celiac disease! And then my mother saying "since you became a Celiac", like I had some sort of choice in the matter, I feel like responding with "since you and dad gave me a s**t gene", lol!

Ultimately, I'm lucky I don't have worse things to worry about, and many of you are right, at least they aren't calling me stupid! LOL

Rachel--24 Collaborator
i guess it would if someone was using it in a negative way, like...."those damn celiacs!"  :P

<{POST_SNAPBACK}>

Yeah...that would bother me too!!! :lol::lol:

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. - 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.

    2. - 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.

    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. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams 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
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • 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?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.