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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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71 posts in this topic

As a relatively new celiac sufferer (one year), I'm adjusting to have to explain my new set of dietary regulations over and over. This is a light-hearted review of some of my favorite commentary from others. List some of the funny ones you have heard!

Upon turning down a food item with a brief explanation of my condition, I hear

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Waiter: You can have the white bread, but not the whole wheat.

Me: Oh, really? What is the white bread made from?

Waiter: Flour.

Me: And what is the flour made from?

Waiter: Well you know it's just flour, like you get at the store. :lol:

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My neighbor A NURSE said...Oh, I could never do that, I love bread too much. :rolleyes: :rolleyes: :rolleyes:

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One of these days I'm going to find one of those flour trees that people seem to think grow somewhere. I'm curious whether the brand name is already printed on the bags that hang from the branches.

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My favorites:

Me: No muffin for me--I can't have wheat.

Server: Oh, then you can have the blueberry muffins--they're only made of blueberries!

Me to yet another server: Do you know what kind of flour is used in your ______?

Server: It's white flour.

Yes, apparently, flour is made of only one thing: flour.

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I have rolled my eyes and put my face in my hand at people who are like "there's wheat in flour?" as if they didn't know. HOW DO YOU NOT KNOW THAT?!?! Where do people think flour comes from? Bashing my head against my desk until I bleed would be less painful than some of the conversations I've had with some people.

My favorite will still always be "well isn't there a way you can knead the bread to like... beat the gluten out of it?"

I'm surprised I didn't bleed out of my ears trying not to laugh right in her face and tell her that was by far the most stupid thing I've ever heard in my life. (And I spend a LOT of time on the internet.)

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WEll, I'm 2 plus years in and have heard all of those over and over.

We were traveling this past week (in New Orleans, 9 year old and me gluten free) and in one restaurant I asked for the gluten free menu. I knew they had one because we had eaten there the day before (server was AWESOME that day). This girl, however, was so confused. She brought the vegan menu. I said, "Well, we're sort of the opposite of vegan." It was very hard to explain to her what gluten free was. In her defense she was very young and heck...I would not have known at her age. But I seriously considered leaving.

Good news: First trip ever without getting one bit sick. New Orleans did right by us.

I also love the one when you tell people you're gluten free and they will say, "Hey, did you know Cub has a gluten free section?"

Pretty much. People want to help. Gotta' love 'em.

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The ones that get to me are things like, "Oh yes, I've gone gluten-free too!", as they stuff a breaded and deep fried mushroom or something similar in their mouths.

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I have a bunch of friends who are EXTREMELY food aware and really splurge with only organic foods (which is great but expensive) so I had almost no sympathies from any friends. I had quite a few "At least there's lots you can still eat" to even a "welcome to our world" from a friend who has chosen to eat this way, and can afford to without batting an eye.

I'm only one week into this so I'm dying for someone, anyone, to say "oh, that's got to be tough," when I tell them of my recent diagnosis. Anyone!

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I have a bunch of friends who are EXTREMELY food aware and really splurge with only organic foods (which is great but expensive) so I had almost no sympathies from any friends. I had quite a few "At least there's lots you can still eat" to even a "welcome to our world" from a friend who has chosen to eat this way, and can afford to without batting an eye.

I'm only one week into this so I'm dying for someone, anyone, to say "oh, that's got to be tough," when I tell them of my recent diagnosis. Anyone!

I have just the opposite, they all are very concerned, especially when we eat out. To the point where they will badger the waiter, leaving me saying" wait! That's my job!" Lol gotta love their enthusiasm. My best friend in particular did that exact scenario one day, to the point that I didn't even need to explain how to keep my meal seperate cooking wise. She then, mid conversation, offers me a roll heehee...really? Gotta love her! She's got my best interest at heart, but still talks to me like nothing ever changed haha 😜

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I have a bunch of friends who are EXTREMELY food aware and really splurge with only organic foods (which is great but expensive) so I had almost no sympathies from any friends. I had quite a few "At least there's lots you can still eat" to even a "welcome to our world" from a friend who has chosen to eat this way, and can afford to without batting an eye.

I'm only one week into this so I'm dying for someone, anyone, to say "oh, that's got to be tough," when I tell them of my recent diagnosis. Anyone!

Lots you can still eat? A week in I thought I was going to starve to death. It isn't like you can go eat organic wheat bread, how insensitive of them. It's one thing to make a choice to eat a certain way, it is entirely another to have dietary needs thrust upon you. Some people just... grrrrrr, at least we understand it's tough.

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I got comments from people about how they could never stick to that diet or how they would kill themselves if they couldn't eat _____. Now I am not a celiac but I do have food intolerances. And for me all it takes is the pain and/or stomach or other symptoms those foods give me to know that I will never willingly or knowningly eat them again. I am even so cautious that if I don't know what is in something, I won't eat it.

The thing that still gets me is to go to a place with a gluten-free menu, order off of it and then still get croutons on your salad.

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I did laugh at the woman who exclaimed that she had gone "gluten free" because it was a very healthy diet. So much so that she was trying to put her 13-year old son on it also. He was resisting ..

Was she coeliac/intoleran/allergic or even sensitive ? No, but she knew all about it due to her line-of-work .. which was ? she worked in a Health Food Store for one-day each week ..

Again, I laughed .. My boss was not happy with me laughing at her, but I was amused ..

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There's a lady like that where I work as well, lol. We have talked many times about how it's not to be a diet fad, that just because it's gluten free doesnt mean it's healthy, theres junk food gluten free too! Haha she didn't listen to me, I tried to explain that even though I'm celiac I don't even eat a lot of the processed things, I eat rather cleanly. She recently said to me, that gluten frees stuff can be just as unhealthy as the regular version...HELLOOO!?!? Haha I refrained from pointing out the obvious, but come on!! Oh common sense, where have you gone....I still chuckle about that when I see her.....

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I volunteer at a place where we have a table full of different baked goods that people can have. Every once in a while we get potato bread or rolls in. Can't count the number of times someone has plopped down a package and said 'Look we have some bread you can eat today'. Yea right cause that potato bread is made with just mashed taters.

Also frequently hear people say they wish they had celiac so they could be as thin as I am. Oh really you want bone pain, brain fog and constant D so you can get diagnosed and have to change your whole life around, yea right.

My boss gets it though and is always finding or bringing in stuff that is actually safe for me. She keeps me well supplied in chocolate. :)

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So a very dear friend of mine from boarding school (who happens to have a peanut allergy) and I were joking around one day at dinner. I had my special food and I was telling the others at my table that you can actually buy powdered gluten in the store. The kid goes, "I'm gonna buy that and put it in your food." I looked right at him and said, "The peanut butter is right over there."

Of course, we were joking, so I wasn't offended at all, and neither was he, but still.

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Oh, I forgot one! How about:

"So, have you lost weight? Since you started 'doing that'?"

Like it's an arbitrary lifestyle or fitness choice, like I decided to take up roller-blading or try Atkins! No, I haven't lost weight, or maybe I have. It doesn't matter. This is about a serious health condition, not about being thin!

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I got comments from people about how they could never stick to that diet or how they would kill themselves if they couldn't eat _____. Now I am not a celiac but I do have food intolerances. And for me all it takes is the pain and/or stomach or other symptoms those foods give me to know that I will never willingly or knowningly eat them again. I am even so cautious that if I don't know what is in something, I won't eat it.

The thing that still gets me is to go to a place with a gluten-free menu, order off of it and then still get croutons on your salad.

Now when people say something like "I would die without bread/gluten", I point out that for me I knew I'd die if I KEPT eating it...so really when faced with this dilemma it's not too hard to choose a life without bread.

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I am celiac (gluten-free) AND vegetarian. Imagine all of the fun stuff (not) I get to listen to. Double whammy. :blink:

Laura

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You can have this wheat, it's organic!

And my favorite:

I cooked it...Doesn't the gluten just cook out?

Makes me want to stab myself in my ears... Over and over again.

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Waiter: You can have the white bread, but not the whole wheat.

Me: Oh, really? What is the white bread made from?

Waiter: Flour.

Me: And what is the flour made from?

Waiter: Well you know it's just flour, like you get at the store. :lol:

Hahahaha
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I volunteer at a place where we have a table full of different baked goods that people can have. Every once in a while we get potato bread or rolls in. Can't count the number of times someone has plopped down a package and said 'Look we have some bread you can eat today'. Yea right cause that potato bread is made with just mashed taters.

Also frequently hear people say they wish they had celiac so they could be as thin as I am. Oh really you want bone pain, brain fog and constant D so you can get diagnosed and have to change your whole life around, yea right.

My boss gets it though and is always finding or bringing in stuff that is actually safe for me. She keeps me well supplied in chocolate. :)

Only week one for me....with another month or so of "figuring what's really going on with me".

Have heard the most amazing diagnoses so far:

"It's just your gallbladder you know?"

"It's just your thyroid"

"It's your hormones"

"It's just stress"

"It's fatty liver disease"

"It's just because you stopped taking the pill"

"It's just your ____".

Nope. It is exactly what I have figured it out to be.

You know...because I live inside my body and feel the things I feel and the log the reactions I log. And puke and poop and have gas lots when I eat the things I eat (tis tha wheat).

The GI doctor discredited all my complaints and high levels of everything as:

"it's just IBS. Eat some yogurt. I recommend Activia"....AFTER I told him how much yogurt I eat to try and settle my stomach, along with double strength probiotics.

*forehead smack*

The only person who understands it all is my mom. My husband too.

Mom said it best "You know your body best. If you need to stop eating something. Then stop."

My husband said "Awesome. I can live semi-gluten-free with you. It will be a lot easier than when you were a vegetarian." Bless his heart....he must love me to want to join me. :)

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I did laugh at the woman who exclaimed that she had gone "gluten free" because it was a very healthy diet. So much so that she was trying to put her 13-year old son on it also. He was resisting ..

Was she coeliac/intoleran/allergic or even sensitive ? No, but she knew all about it due to her line-of-work .. which was ? she worked in a Health Food Store for one-day each week ..

This sounds a bit like one of my friends who "welcomed me to thier world". She was telling me how she had eaten something with gluten the other day, and because she has it so infrequently now, how it caused her knuckle on her little finger to get sore and swell for a day... I nodded as politely and sympathetically as I could. LOL She's a bit of a princess. :rolleyes:

I volunteer at a place where we have a table full of different baked goods that people can have.

Oh, that would be hard for me too! I'm still in the habit of grabbing what I want, or starting to nibble of my kids' mostly finished dinners... I do seem to catch myself before it gets to my mouth. LOL

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I often get some form of "Well, that's a healthy diet to follow." and the smarta$$ in me always responds . . . "yep, cheetos and skittles are gluten free."

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I often get some form of "Well, that's a healthy diet to follow." and the smarta$$ in me always responds . . . "yep, cheetos and skittles are gluten free."

My smarta$$ reply to "how do you have anything to eat?" is "Truffles, caviar, and champagne are gluten-free. I do just fine."

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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