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 Celiac.com!
    eNewsletter
    Donate

I Am / I Have __________

zimmer

Recommended Posts

zimmer Rookie
zimmer
Posted

This post may sound kind of trivial, but for some reason I feel the need to settle on a label for "this that has re-directed my path" through life.

How should I / how do you refer to your gluten problem?

Do you say (or think), "I have celiac disease" or "I am celiac" or "I am gluten intolerant"?

I have not had a biopsy, but positive tTG. From lots of reading, my understanding is that tTG is an autoimmune something-or-other (antibody?) produced in the small intestine that is a strong indicator (90-95%) of villi damage, i.e. "disease".

Do I have the "disease"? In the absence of a positive biopsy, am I more correctly "gluten intolerant"? I hate the word "disease", but if that's what it is, then so be it.

Although my symptoms are minimal, I have noticed some changes for the better after changing my diet. That, too, is part of the diagnosis.

Right now I just say that I can't eat gluten and that has been a sufficient explanation. But, for myself, I need to settle the question in my own head.

Thanks for any responses... and for all that I've learned reading posts!

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

I say I am gluten intolerant.

Link to comment
Share on other sites
Lisa Mentor
Lisa
Posted

I say I am gluten intolerant.

Me too!

I really dislike it when people say "I am Celiac". I am a PERSON with Celiac Disease. Celiac does not define me. :D

Link to comment
Share on other sites
mushroom Proficient
mushroom
Posted

Another gluten intolerant here.

Link to comment
Share on other sites
Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

"I have Celiac disease." Then again, I had a positive biopsy and blood test.

still sinking in, to be honest... sometimes I say it over a couple times in my head before I believe it.

Link to comment
Share on other sites
sa1937 Community Regular
sa1937
Posted

"I have Celiac disease." Then again, I had a positive biopsy and blood test.

I say the same thing.

Link to comment
Share on other sites
ravenwoodglass Mentor
ravenwoodglass
Posted

I say I have celiac. If I get a blank look (which doesn't happen as much as it used to) I then will say I am gluten intolerant and can't have wheat, rye, barley or oats.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


love2travel Mentor
love2travel
Posted

The word "disease" bothers me, too, so I say "I have celiac" and then explain a little more if necessary. I do have celiac disease and it took awhile before I could say it without cringing. Like Lisa I do not allow it to define me because there is so much more to me than that. :D As I am asymptomatic, I have to keep reminding myself I truly do have it the odd time. :(

Link to comment
Share on other sites
Lisa Mentor
Lisa
Posted

The word "disease" bothers me, too, so I say "I have celiac" and then explain a little more if necessary. I do have celiac disease and it took awhile before I could say it without cringing. Like Lisa I do not allow it to define me because there is so much more to me than that. :D As I am asymptomatic, I have to keep reminding myself I truly do have it the odd time. :(

Oh yes, I agree with the "disease" part and I rather consider myself having a "disorder", but I have not analyzed that word too much. I would rather and have referred to it as as "pain in the ass". :rolleyes:

When dining, I usually say I have a gluten intolerance. When I get that "deer in the headlights stare", I go for "wheat makes me really sick".

THEN my husband chimes in... "Well, you know that if she gets the smallest bit of gluten in her meal, she'll be dead before she makes it out the door." Should they freak out, I calmly explain with a smile....and it does gain their attention when they have little experience, nor salary to care. B)

...sometimes it works....sometimes a little humor will help. But we always make it better by nights end.

EDIT: Only on rare occasions did we do this and never at the expense of uninformed staff. I STRONGLY believe that you need to be a good steward for those that come behind you....

Link to comment
Share on other sites
sa1937 Community Regular
sa1937
Posted

I would rather and have referred to it as as "pain in the ass". :rolleyes:

AMEN! So have I! :lol:

Link to comment
Share on other sites
jerseyangel Proficient
jerseyangel
Posted

AMEN! So have I! :lol:

Yep--many times!! :P

Link to comment
Share on other sites
Roda Rising Star
Roda
Posted

I usually say that I have celiac or celiac disease. If someone does not know what that is I tell them I can't eat anything with wheat, rye, barley and for me oats. My 6 year old son had a positve ttg but did not have a biopsy or a gi diagnosis but I still tell people the same thing for him. More than likely he has celiac anyway.

Link to comment
Share on other sites
Noomers Rookie
Noomers
Posted

I say 'I have celiac' (diagnosed by blood test) to help distinguish it from all the other intolerances/allergies in our family, which can be outgrown and I don't have to be hyper-diligent about avoiding. I've had to figure out food allergies in my kids by trial and error and I think some people assume I'm just making up their symptoms.

Link to comment
Share on other sites
glutenfr3309 Rookie
glutenfr3309
Posted

This post may sound kind of trivial, but for some reason I feel the need to settle on a label for "this that has re-directed my path" through life.

How should I / how do you refer to your gluten problem?

Do you say (or think), "I have celiac disease" or "I am celiac" or "I am gluten intolerant"?

I have not had a biopsy, but positive tTG. From lots of reading, my understanding is that tTG is an autoimmune something-or-other (antibody?) produced in the small intestine that is a strong indicator (90-95%) of villi damage, i.e. "disease".

Do I have the "disease"? In the absence of a positive biopsy, am I more correctly "gluten intolerant"? I hate the word "disease", but if that's what it is, then so be it.

Although my symptoms are minimal, I have noticed some changes for the better after changing my diet. That, too, is part of the diagnosis.

Right now I just say that I can't eat gluten and that has been a sufficient explanation. But, for myself, I need to settle the question in my own head.

Thanks for any responses... and for all that I've learned reading posts!

i usually say i am gluten intolerant.

when i eat out in restaurants i say that i have a gluten allergy because i think if they hear the word 'allergy' they are more likely to take me seriously.

Link to comment
Share on other sites
SaraKat Contributor
SaraKat
Posted

I say I have celiac disease.

Link to comment
Share on other sites
2Boys4Me Enthusiast
2Boys4Me
Posted

My son usually says he has celiac. Once, though, an adult he didn't know very well asked him (snidely) if he was too good to eat the pizza being served at the party. My son had been eating a bunless hamburger and a baked potato. His response, and in a somewhat rude tone of voice, was "I have a disease". I admit I was proud of him, even though he used a snotty tone of voice it was exactly what that adult needed to hear...put him in his place a bit.

Link to comment
Share on other sites
gf-soph Apprentice
gf-soph
Posted

I had positive blood work but a negative biopsy. In my own mind it is gluten intolerance, but one that is a subset of celiac as it resulted in severe illness and nutritional malabsorption. I also consider it possible that I would have ended up with a positive biopsy if I had left it a couple of years.

When the topic comes up with someone, I say 'have you heard of celiac disease?'

If they haven't, I just say that I get very sick if I eat gluten, which is the protein in wheat, rye and barley.

If they do know what celiac is, or are very interested, I might go in to more detail. Often they mention someone else they know with a gluten problem, and if they're interested I will explain that technically I have gluten intolerance, but that it makes me just as sick as a person with celiac. I've even gone so far as to discuss the state of research etc with some people, it just depends on the person.

I've had a lot of positive discussions with people by approaching it in this way, you can make it as brief or as detailed as you like and tailor it to their understanding.

Link to comment
Share on other sites
sb2178 Enthusiast
sb2178
Posted

"gluten sensitivity"

same boat of negative biopsy, so I can't claim full-blown celiac although blood work pointed in that direction and the diet solved lotsa problems. gluten challenged brought 'em back.

Link to comment
Share on other sites

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    2. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    3. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    4. Smith-Ronald
      - Smith-Ronald replied to Soleihey's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lymph nodes

      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    5. Bayb
      - Bayb replied to Bayb's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Trying to read my lab results

      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748
    Suzi374
    Newest Member
    Suzi374
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    • Smith-Ronald
      Lymph nodes

      By Smith-Ronald · Posted

      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    • Bayb
      Trying to read my lab results

      By Bayb · Posted

      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
×
×
  • Create New...