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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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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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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

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Another gluten intolerant here.

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"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.

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

I say the same thing.

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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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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. :(

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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....

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

AMEN! So have I! :lol:

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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.

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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.

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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.

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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.

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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.

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"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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    • One other thought to consider is other food allergies/intolerances you may have that you didn’t know of before that could be causing this change.  Is there any food that you may have added in or increased the frequency of eating since removing gluten from your diet?  I know this has happened with me where I took our gluten, started eating more rice and still getting sick till I figured out I have a rice allergy as well!
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