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The Most Annoying Thing About Celiac Is...

GFreeMO

By GFreeMO
in Coping with Celiac Disease

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GFreeMO Proficient
GFreeMO
Posted

The most annoying thing about celiac is...

Being glutened and having NO CLUE as to what zapped me this time!

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  • Replies 59
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Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

never reaching a point where you feel good enough to start testing any foods, or know what your "glutened" symptoms are :(

mushroom Proficient
mushroom
Posted

The extra planning that eating takes :rolleyes:

thegirlsmom Apprentice
thegirlsmom
Posted

Not having accurate testing for your kids.

captaincrab55 Collaborator
captaincrab55
Posted

Knowing that my Mom was never Diagnosed with Celiac...

Diane-in-FL Explorer
Diane-in-FL
Posted

Finally living in a place with lots of fabulous restaurants and not being able to eat at most of them. :(

samie Contributor
samie
Posted

Always having to find out what we can eat at restarants

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saintmaybe Collaborator
saintmaybe
Posted

The absolutely astounding lack of knowledge and coordination among practitioners in the medical community.

DonnaMM Explorer
DonnaMM
Posted

Feeling like the whole world is against me

beebs Enthusiast
beebs
Posted

Getting a diagnosis. All my specialists, my kids GI (who is a world renowned celiac specialist) and my GP all agree that I couldn't not have celiac, but because of the stupid rules on diag here I can't be diagnosed!! I hate that, drives me insane. Because when I'm in hospital and stuff its all like "I need gluten free" blah blah "haven't got an official diag...blah blah" and then their faces glaze over and they get that look in their eyes like a "we are dealing with one of *them* " looks and then I have to worry about wether they are going to take my gluten-free request seriously and am scared to eat the whole time. Arrrghhhh!

pricklypear1971 Community Regular
pricklypear1971
Posted

Getting a diagnosis. All my specialists, my kids GI (who is a world renowned celiac specialist) and my GP all agree that I couldn't not have celiac, but because of the stupid rules on diag here I can't be diagnosed!! I hate that, drives me insane. Because when I'm in hospital and stuff its all like "I need gluten free" blah blah "haven't got an official diag...blah blah" and then their faces glaze over and they get that look in their eyes like a "we are dealing with one of *them* " looks and then I have to worry about wether they are going to take my gluten-free request seriously and am scared to eat the whole time. Arrrghhhh!

Ever considered lyIng at the hospital? I would. Geez, that's a lot of stress.

beebs Enthusiast
beebs
Posted

Ever considered lyIng at the hospital? I would. Geez, that's a lot of stress.

I have a really bad affliction, I can't lie...or even fib ever, my mother thought it was the best thing ever when I was a teenager - she knew about everything at all times!!

Chad Sines Rising Star
Chad Sines
Posted

That you cannot eat gluten...c'mon...this was obvious. :)

Gfreeatx Apprentice
Gfreeatx
Posted

Chad, your last comment made me chuckle. :) For me, it is the lack of spontaneity. I am a real foodie and I miss walking through the city I live in exploring new restaurants without having a care.

pricklypear1971 Community Regular
pricklypear1971
Posted

I have a really bad affliction, I can't lie...or even fib ever, my mother thought it was the best thing ever when I was a teenager - she knew about everything at all times!!

Hon, you're never too old to learn :).

GuyC Newbie
GuyC
Posted

having to pick up regular pizza for my family and knowing I can't have any.

lucky28 Explorer
lucky28
Posted

That I have to be on guard all the time! :(

Googles Community Regular
Googles
Posted

The crushing depression(physical and mental)that comes when I get glutened (even from CC).

ThatGuy Newbie
ThatGuy
Posted

The smell of Wetzel's Pretzels. I've never eaten there but I like to stand in front of them for a few minutes and imagine tasting whatever that scent is.

lovesaceliac Newbie
lovesaceliac
Posted

That we can't even trust the "gluten free" options at most restaurants. Well meaning friends say, "such and such a place has gluten free pizza now!" Not a chance my super-sensitive celiac husband could eat it safely. Stupid cross-contamination.

TTNOGluten Explorer
TTNOGluten
Posted

Feeling helpless, depressed, and tired of being in constant pain, enough so, that I have a hard time even enjoying my own beautiful children and not being the father I should be

Katrala Contributor
Katrala
Posted

Pseudo-Celiacs

beebs Enthusiast
beebs
Posted

Pseudo-Celiacs

Hate that! I just had an argument with someone today who says that her whole family has coeliac but none of them has been tested (along with a myriad of other medical complaints)- then she tells people on the internet just to go gluten free without testing. Drives me mad. Its like she wants her family to be coeliac. Whereas my family have been in sickness hell for years with two sick children in and out of hospitals and heaps of tests, borderline results. A) I would never dream of just deciding its Coeliac (although I think it is) and B) I would never tell anyone not to get tested. What if its something else? Something worse that is making the kids sick???

mushroom Proficient
mushroom
Posted

But what if it is gluten intolerance and you can make them better just by not giving them gluten? I would never tell someone not to get tested, but I would never tell someone to poison their child just for the sake of a stupid test which might not be accurate and which may not mean that it is not gluten that is the problem either. Adults can make up their own minds whether or not to poison themselves, for testing, but forcing your kids to be ill is a different question in my book. There are no accurate tests (yet) for ncgi.

beebs Enthusiast
beebs
Posted

But what if it is gluten intolerance and you can make them better just by not giving them gluten? I would never tell someone not to get tested, but I would never tell someone to poison their child just for the sake of a stupid test which might not be accurate and which may not mean that it is not gluten that is the problem either. Adults can make up their own minds whether or not to poison themselves, for testing, but forcing your kids to be ill is a different question in my book. There are no accurate tests (yet) for ncgi.

No, she was telling people even before going gluten free to not get the blood test. No one is saying do a challenge. We are talking about chronically ill children as well - so what if it isn't even anything to do with celiac - or what if its celiac and something else? My son had a borderline celiac tests - he is much much better gluten free - but it has become clear that there is also something else going on. How would you ever know any of that with no testing. All I was saying is do the blood test and if its neg then go gluten free - but do the test first. Also - she keeps going on about how Celiac is an allergy etc. She doesn't know anything about it and yet she is giving advice on it? There is nothing worse than people talking about anything medical when they know nothing about it.

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      My only proof

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

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      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
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