Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,428
    • Most Online (within 30 mins)
      7,748
    Vicki Roberts
    Newest Member
    Vicki Roberts
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • breadbreadbaby
      Test Results

      By breadbreadbaby · Posted

      Hi everyone! Thanks so much for your feedback on my post. Here’s the updated information: IgA 0.98 (Range 0.80 - 4.90) Tissue transglutaminase IgA Ab 45.4 (<=14.99 U/mL, Positive >=15.0 U/mL)
    • trents
      Labs

      By trents · Posted

      Chronic mildly elevated liver enzymes was what eventually led to my celiac diagnosis but it took thirteen years to ferret that out and by that time I had developed osteopenia.  Yes, you've got a lot going on there in the way of autoimmune disorders and all of them we now know have a connection with celiac disease. It is true that autoimmune disorders tend to cluster. But it sounds like you are getting medical attention and keeping an eye on things. 
    • Lburnett
      Labs

      By Lburnett · Posted

      Thank you! Yes, I have celiac disease, lupus and Sjögrens. My ALT and AST have been chronically slightly elevated for a couple years and recently had an acute kidney injury (thinking it was from an antibiotic) with increased Lipase. So my primary doctor referred me to a kidney specialist. Other kidney labs are normal. 
    • ChrisSeth
      Waiting on Blood test results…

      By ChrisSeth · Posted

      My test results for TissueTransglutaminase IgA Antibody test came back normal. Like spot on normal. I do not have celiac! My problems are stemming from this H Pylori infection. I think I’ve had it for years. We’ll see if the doctor wants to do an endoscopy to see how extensive the damage is. Otherwise just a regimen of antibiotics will do the trick. The thanks for your guys’s help! 
    • Beck1430
      Reaction to gluten or gastro bug?

      By Beck1430 · Posted

      Thank you both so much for taking the time to reply.    Cristiana - yes the rashes seemed to resolve when he came off gluten too. I haven’t seen those pictures before, thanks for pointing me to them. I’d say his rash isn’t like the more severe photos which are scabbed and very bumpy. His rash is more like lots and lots of patches of eczema than spots. No we have no celiac in the family to my knowledge, though my mum and sister both have autoimmune diseases and wheat sensitivity. I think you’re right and I’ll have to do another trial to confirm if it was the wheat. I’ve been hoping all day that I come down with the bug to rule out the wheat reaction! But the rest of the family are absolutely fine.    Trents - thank you for the info regarding the genes. That’s very interesting and I’d definitely consider doing that as a way to rule it out without putting him back on wheat. I also didn’t know celiacs were commonly intolerant to dairy and soy. I think you’re right and there is definitely enough factors to show something is going on. I think I’ll do a repeat trial of the wheat challenge and if he reacts again I shall look into the genetic testing.    Thank you both so much for your time. Becky          
×
×
  • Create New...