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

Driven Mad By Celiac


Guest cd&dhspruehead

Recommended Posts

Guest cd&dhspruehead

It still gets to me how people are ill informed about serten allergies.There are so many.Peanut allergy is the most herd about.Nuts this,nuts that.YES it is vary importent.But so is CELIAC/COELIAC''uk''and it shoud be known the world over without the strang looks from those you try to explane to.Gluten is toxic!We all have our stories on how we found out about ''THE SPRUE''and how doctors.famlies,friends thought we were crazy.DH just as hard to explane.Gets some fired to all because it looks like your not taking care of your self.Its all just mading!!!!!!!!!!!!!!!


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



Celiac.com Sponsor (A8-M):



plantime Contributor

A pill cannot cure it, so there is no incentive for pharmacy companies to educate people about it. No one has committed a horrific crime and blamed on celiac disease, so there is no publicity value in it. We just have to do our best ourselves!

midnightlullaby Apprentice

Yes, this bothers me too. Sometimes when I tell people or I ask if something is wheat free/gluten-free at a restaurant people don't understand. I feel like people sometimes think I'm on some new age diet, when really, if I eat that stuff I'll be sick for days and days.

debmidge Rising Star

You're right. Until I knew what it was I too thought it was a "new age" fad diet (really did). Like low carb. Now I call myself the Celiac Ambassador as I try to educate all who'll listen as to what it is, etc. I know I am boring some people, but maybe it'll stick in their heads & they'll recall the info later on if they hear about it again or if a relative comes down with it.

I pass out brochures from the Celiac Sprue Assn. I've even written up my own one page hand out and I leave copies of it at the supermarket.

I feel like an evangelist and celiac disease is my religion -- I will set you all gluten free!

plantime Contributor

I educated the local butcher about it this morning. He can get me beef and pork that is only grain-fed, with none of the hormones and other garbage, but I will have to buy 1/2 of the animal to get it. I am calling all of my family to see if they want in on it. Meat with no additives is such a blessing for me!

JsBaby-G Newbie

celiac disease,

I totally agree with you. It's very annoying (to say the least) to have to go through a detailed account of exactly what Celiac Disease is etc... I think it is getting better though 'cause now I run into people who say "oh yeah I know someone who has that." So time will tell I guess. :huh:

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,906
    • Most Online (within 30 mins)
      7,748

    wellthatsfun
    Newest Member
    wellthatsfun
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Shining My Light, Yes, celiac is spelled differently in Great Britain.  Yes, please do consider us as part of your support circle.   I had a serious Vitamin D deficiency, too.  I learned Vitamin D acts as a hormone when at levels between 78-100 nmol/L.  Mine was in the single digits.  I had been in declining health for years without answers.  I had developed hormone problems and clinical depression among other symptoms.  I corrected my Vitamin D deficiency with high doses to get my level up quickly.  Yes, it's safe.  Here's some studies done on high dose Vitamin D. https://pubmed.ncbi.nlm.nih.gov/34737019/ https://pubmed.ncbi.nlm.nih.gov/39125420/ https://pubmed.ncbi.nlm.nih.gov/35470105/ https://pubmed.ncbi.nlm.nih.gov/30611908/ My Vitamin D deficiency was just the tip of the deficiency iceberg.  I was deficient in the B vitamins, too.  Celiac Malabsorption affects all the vitamins and minerals, not just one.  Here are some articles about how the B vitamins and even Vitamin D help lower anxiety... https://pubmed.ncbi.nlm.nih.gov/33848753/ https://pubmed.ncbi.nlm.nih.gov/35156551/ https://pubmed.ncbi.nlm.nih.gov/35851507/ https://pubmed.ncbi.nlm.nih.gov/35851507/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
    • Shining My Light
      @trents I’m pretty sure what I’m left with when separating celiac to other causes is my 10% being a virus. The one I had about 3 weeks before taking this TTG test. Everything I’ve read says type 1 diabetes, rheumatoid arthritis, hepatitis and some viruses are what could cause the elevation. The other blood tests I had I can compare things against.  I’m going to give your article a thorough read. My support in my circle is very small at the moment.  @knitty kitty I think before EGD I would like to do the DNA test. I’m going to start keeping a better journal also.  I’ve read a crazy amount of these “articles” - these two I’ve not seen. Some articles spell celiac differently. Thank you for sharing! I’m gonna dive into those.   I started seeing the functional medicine doctors from fluctuations in my hormones and major anxiety. Recently I realize it’s mostly health anxiety also so this is more challenging to depict real from imaginary thus all the research and the back and forth. I know anxiety to be a common symptom in perimenopause. I’ve fought it my whole life however. Likely due to lots of different trauma but seeing her was my last ditch effort to try something to avoid SSRIs, HRT, etc. She told me not to blame everything on my hormones when there could be an underlying problem, so she ran some tests to see if anything stood out. The TGG tests stood out.  I do find it very interesting now that I think about it that I don’t desire bread, pasta and pizza. Sometimes yes, but mostly no. I guess I didn’t give that much thought. Also didn’t realize that those foods do contain more gluten than the tortillas and cake/baked goods. About 3 months ago I started ordering meal kits to make dinner easier. I went back over the menus that I picked. I have probably had bread and pasta a hand full of times over the last couple months prior to having that blood test. We used to get pizza every Friday and stopped doing that also. I’m all fairness about 2 months leading up to these blood tests I had less gluten containing foods than I thought.    I’ve been praying for wisdom. Thankful to find some counsel from people who I believe have dove harder into this than most doctors have. Thanks for all the advice. It’s appreciated more than you know. 💕
    • Alibu
      @knitty kitty My whole family has migraines and I started getting them at age 19, so I'm not sure mine are related to gluten, although I do feel like obviously the more inflamed my whole system is, the more likely I am to suffer from more of these things.
    • knitty kitty
      @Alibu, Just wanted to add... Migraines can be caused by thiamine insufficiency.  I used to have them, regularly, but haven't since supplementing with thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and Magnesium Threonate.  These forms get into the brain easily and really improve migraines.  I do still get Ophthalmic migraines which are triggered by computer screens.  It's permanent damage from nutritional deficiencies.  An Erythrocyte Transketolace test is a more accurate test for sufficient thiamine. Keep us posted on your progress!
    • Alibu
      @knitty kitty Thank you for those, I will definitely bring them up!  I did send a message to my doctor basically asking what they think so I'll go from there.  He may very well just decide that this was enough to diagnose celiac, but I have no clue what his thoughts are right now.  I also asked for a second opinion on the pathology.
×
×
  • Create New...