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

10 Things I Hate About Celiac

Mtndog

By Mtndog
in Coping with Celiac Disease

Recommended Posts

jerseyangel Proficient
jerseyangel
Posted
Honestly, the thing that bugs me the most is trying SO hard and being So careful and still getting sick and not knowing why :(:angry:

This is so true :angry:;)

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

Celiac.com Sponsor (A8-M):


  • Replies 107
  • Created
  • Last Reply
HannahHannah Apprentice
HannahHannah
Posted
This is so true :angry:;)

Absolutely! The hours you spend scouring your memory trying to figure out where you were glutened!

Kyalesyin Apprentice
Kyalesyin
Posted
Absolutely! The hours you spend scouring your memory trying to figure out where you were glutened!

And so many times, the answer here seems to be 'work'...

NoGluGirl Contributor
NoGluGirl
Posted
Honestly, the thing that bugs me the most is trying SO hard and being So careful and still getting sick and not knowing why :(:angry:

I think it's pretty valid to be darn angry when people don't ATTEMPT to understand OR they maliciously try to prove you're not sick. There's a thread on here about someone whose spouse put gluten in the food just to prove he/she wouldn't get sick. :(

Dear Mtndog,

I agree completely! It is terrible being obsessively careful, and still getting sick! I know the source of mine is usually my parents. They don't pay attention. Crumbs are everywhere! It freaks me out! :unsure: You never know what is going to hurt you.

I have been on that thread you spoke of. It is so irritating that people do such things. My parents just are not careful. They do not seem to accept the seriousness of this disease. They say, it is all I talk about! That is because it is what my life is about! They do not understand, nor do they care to! Even worse, these people try to tell us we are selfish for wanting to be well! :angry:

Sincerely,

NoGluGirl

TriticusToxicum Explorer
TriticusToxicum
Posted

-read the label

-decipher the label

-trust the label?

-trust the manufacturer?

Office mates "Donut anyone?"

me "no thanks"

Office mates "you still on that diet?"

<_<

No (real) pizza

No (good) beer

No (edible) burger buns/hot dog rolls

$13 for 4oz. of xanthan gum!! :blink:

eating out/traveling

licking the beaters...and then remembering you used bean flour ( :wacko: bleck!)

(i'm hard at work on the TP Dispenserator 3000XL hand bag attachment)

Guest GrimTribe
Guest GrimTribe
Posted

10. Soothing my little guy when he found out he can't eat donuts.

9. Soothing my little guy when he found out he can't eat pizza.

8. Soothing my little guy when he found out he can't eat toast.

7. Worrying about possible Celiac Disease in my other 3 kids and me, and my sisters, and my brothers....

6. Slowly convincing my girlfriend the WHOLE household needs to go gluten-free to protect Steele from CC at home.

5. The freakin cost of freakin gluten-free food!

4. Soothing my little guy when he has a crying jag because he misses donuts..

3. Soothing my little guy when he has a crying jag because he misses pizza...

2. Soothing my little guy when he has a crying jag because he misses toast...

1. Having to tell my little guy all the things he can't eat.

I'm new at this, and I hate way more, but I'll save that for another time. Off to get some Happy Vibes rolling....

:( Raven

Jo.R Contributor
Jo.R
Posted

How about the panic over every little twinge in the stomach area: "Have I been glutened, or is it a normal thing?".

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

Celiac.com Sponsor (A8-M):


kbtoyssni Contributor
kbtoyssni
Posted
5. Not being able to eat a blue box of Kraft Mac and Cheese.

This is one very long thread that I haven't had to time read all of so forgive me if this is a repeat. I buy the blue boxes of Kraft, take out the cheese powder and use that with my own noodles. You're right, there's something about boxed mac & cheese that you just can't replicate so thank goodness the cheese is gluten-free.

Archived

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

Go to topic listing

  • 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
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

      You're right, doctors usually only test Vitamin D and B12. Both are really important, but they're not good indicators of deficiencies in the other B vitamins. Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer. The other B vitamins can only be stored for much shorter periods of time. Pyridoxine B 6 can...
    2. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron. I wondered how it was possible that I had celiac disease...
    3. knitty kitty
      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment. The cow's body builds that Casein protein. It doesn't come from wheat. Casein can trigger the same reaction as being exposed to gluten in some people. This is not a dairy allergy (IGE mediated response). It is not lactose intolerance...
    4. trents
      - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the...
    5. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,367
    • Most Online (within 30 mins)
      7,748
    Pauline14
    Newest Member
    Pauline14
    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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      My only proof

      By NanceK · Posted

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
×
×
  • 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.