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10 Things I Hate About Celiac


Mtndog

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jerseyangel Proficient
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
This is so true :angry:;)

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

Kyalesyin Apprentice
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
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

-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

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

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
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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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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