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10 Things I Hate About Celiac

Mtndog

By Mtndog
in Coping with Celiac Disease

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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:;)

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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?".

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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.

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    • 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.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • NanceK
      My only proof

      By NanceK · Posted

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
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