The Most Annoying Thing About Celiac Is...

[GFreeMO]

The most annoying thing about celiac is...

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

[Strawberry-Jam]

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

[mushroom]

The extra planning that eating takes

[thegirlsmom]

Not having accurate testing for your kids.

[captaincrab55]

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

[Diane-in-FL]

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

[samie]

Always having to find out what we can eat at restarants

[saintmaybe]

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

[DonnaMM]

Feeling like the whole world is against me

[beebs]

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]

  On 11/17/2011 at 10:18 PM, beebs said:

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]

  On 11/17/2011 at 10:38 PM, pricklypear1971 said:

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]

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

[Gfreeatx]

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]

  On 11/17/2011 at 10:46 PM, beebs said:

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]

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

[lucky28]

That I have to be on guard all the time!

[Googles]

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

[ThatGuy]

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]

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]

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]

Pseudo-Celiacs

[beebs]

  On 11/19/2011 at 11:21 PM, Katrala said:

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 I would never tell anyone not to get tested. What if its something else? Something worse that is making the kids sick???

[mushroom]

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]

  On 11/20/2011 at 1:20 AM, mushroom said:

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.