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I Am / I Have __________

zimmer

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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!

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jerseyangel Proficient
jerseyangel
Posted

I say I am gluten intolerant.

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

mushroom Proficient
mushroom
Posted

Another gluten intolerant here.

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.

sa1937 Community Regular
sa1937
Posted

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

I say the same thing.

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.

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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. :(

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....

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:

jerseyangel Proficient
jerseyangel
Posted

AMEN! So have I! :lol:

Yep--many times!! :P

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.

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.

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.

SaraKat Contributor
SaraKat
Posted

I say I have celiac disease.

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.

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.

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.

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    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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    • knitty kitty
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    • cristiana
      Concerning GP advice

      By cristiana · Posted

      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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