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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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    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
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