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What To Call Myself

Joanne11

By Joanne11
in Coping with Celiac Disease

Recommended Posts

oceangirl Collaborator
oceangirl
Posted
Smart Girl ;)

Glad to have you amounst us!

Joanne,

If you're still reading this I have positive tTg and negative endoscopy both after being gluten-lite for 4 months. GI said I'm fine- IBS. I didn't listen after 25 years of that diagnosis. Went gluten-free and dietary response was pretty amazing- I'd been suffering with over 28 significant pretty wretched symptoms, one being lavish pain- they are either gone or greatly diminished. (Except when I happen to get nailed by inadvertant gluten or other intolerances...sigh...) It's been a year. I started by saying "gluten intolerant"- I now just say "celiac". It's easier. Wishing you health,

lisa

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oceangirl Collaborator
oceangirl
Posted
Joanne,

If you're still reading this I have positive tTg and negative endoscopy both after being gluten-lite for 4 months. GI said I'm fine- IBS. I didn't listen after 25 years of that diagnosis. Went gluten-free and dietary response was pretty amazing- I'd been suffering with over 28 significant pretty wretched symptoms, one being lavish pain- they are either gone or greatly diminished. (Except when I happen to get nailed by inadvertant gluten or other intolerances...sigh...) It's been a year. I started by saying "gluten intolerant"- I now just say "celiac". It's easier. Wishing you health,

lisa

Oh, yes and Enterolab says I have two genes for "gluten intolerance"- both DQ 1s. So, tra la...

lisa

chocolatelover Contributor
chocolatelover
Posted

I know I'm coming into this thread a little late in the game, but I'm so glad to have this addressed. It can be a huge issue for people--you don't want to feel like you're stretching the truth, but I have found that it is so much easier to say "celiac" than go through the whole gluten intolerance bit and explain to people how it feels, what the symptoms are, the consequences of ingesting gluten, etc...

I am one of those that was diagnosed celiac without positive blood work and a negative biopsy. My other risk factors (lymphocytic colitis), symptoms, genetics (DQ2 and DQ8) and dietary response was all my doctor needed to put the official diagnosis in my chart. I was floored when he said that! I guess it all depends on how informed your doctor is on the subject. Wouldn't it be nice if they all were so open minded?

I love that the people on this board are so open to everyone, regardless of the diagnosis, how the diagnosis was made, or what they are doing to keep themselves healthy. For most of us, it's been a long road more fighting with doctors than getting help from them. I think that's what keeps everyone together here.

Joanne, thanks for starting the thread and sparking a great discussion.

Corrine, did you know that there is another forum for people with mc? If you're interested, let me know and I'll send you the link. It's a great group of people--very well informed over there!

CL

kbtoyssni Contributor
kbtoyssni
Posted

I am dietary response diagnosed, and I call myself a celiac. It is easier to explain and I'm of the opinion that celiac is the advanced stages of gluten intolerance so it hardly matters when you draw the line. The treatment is the same for both. In fact, I cannot think of one thing in my life that would change by me "only" having gluten intolerance instead of celiac.

I also call myself a celiac rather than someone with celiac disease. I know the disease doesn't define me, but it is a huge part of my life and I have wonderful friends and family who don't define me by the disease either, so maybe that's why I don't feel the need to stress the difference when interacting with people.

Say whatever makes you comfortable. Say what makes your life easiest and keeps you safe.

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    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      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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      Bob red mill gluten free oats

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