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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.

gluten-free & Friends(?)
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21 posts in this topic

Since going gluten-free I have found that my opinions of some people I considered friends has changed based on their reaction to my choosing to be gluten-free. These are people who I thought were relatively intelligent and who I thought acted accordingly, but when confronted with my gluten-free choice it seems they are pretty mentally bankrupt. Some seemed so logical and in control, but that fell apart when confronted with my being gluten-free. One thing that affects my view of them is their total disinterest in trying to learn a little about gluten sensitivity even though some of them admit they have some symptoms that might be related. It's almost as if they are so terrified of this that they are unable to face it. Some of these are people who are normally very inquisitive about almost any other topic. I am pretty careful not to discuss my situation beyond what is necessary regarding eating with them. I try to avoid mentioning the medical stuff, and I know all the logical arguments about it being their choice, etc, etc, but I still find it's affecting our relationships.

I'm just wondering if anyone else has had this issue.

George

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George, it's too bad to hear your friends are not being terribly supportive. I have had a lot of support from my friends, but being a nurse, most of my buddies are also nurses or other health-care professionals, so they ask intelligent questions, are sincere about wanting to understand better, and definitely realize that eating gluten *will* make me ill. In fact, I have had boxes and packages at the ready for me at my friends houses and a thousand apologies if I can't eat any of their snacks. There is definitely a lack of awareness out there. At least I would rather think that than to think that some people just don't care...................

At any rate, ((hugs)) to you for what you have been through.

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George--Give them time. Sometimes it is very difficult for others to understand. As you get to feeling a lot better and your spirits lightens, they will see that too. But, never expect everyone to understand totally. Some people just dont grasp the concept. They will always ask, "So you cant have wheat bread, but is white bread ok?" Some will never realize that noodles have flour in them, never understand that cookies have flour, "I mean, ummmmmmmm ist not wheat bread, it's a cookie!" Then there is the famous, "One bite wont hurt!" I have heard them all, in 4 years, I have heard some good ones. Keep your chin up and feel free to email me. Deb

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Everyone has told me it just takes time for them to understand...I'm going through the same thing.

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Well, considering a lot of drs don't understand celiac disease - and you think that at least THEY would want to know more, I suppose the reactions of typical lay people shouldn't be surprising. But you would think that if they were more of the friends that you thought they were that they would be more caring or at least try to understand more. I don't bother with people when they have that attitude - The fact is I cannot have gluten and if they can't understand that and can't seem to get their minds around that fact, then there's nothing I can do about it. Can't teach someone who doesn't want to learn.

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Well said, Nettie! It just hurts sometimes when people you thought you were close to seem to not want to understand.. I'm really trying to come to terms with this in my own situation.

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George - I have posted elsewhere about similar issues but it was about family members. I think you are correct in saying that some people just can't face that something could be wrong with them. When my Mother found out what I was getting tested for, she asked me to wait while she found a pen. She wanted to ask her doctor to test her for it. Well once I explained about the gluten-free diet, she all of a sudden said not only that she couldn't have celiac disease but I probably don't either. Regardless of my test results none of my family members will get tested unless they get really sick and have no choice. I'm glad we have 5 hours between us. It will make my gluten-free jouney much more pleasant.

What I decided to do is focus on making myself feel better and realize I'm only in charge of my body - not anyone elses. If they put their head in a whole and ignore their own sypmtoms that's their problem. It's sad but true.

I feel like I lucked out having a very close friend who is pre-diabetic. No that didn't come out right. What I mean is she had to go on a strict diet to lose weight and keep from becoming diabetic. So she understands that it's stressful to go though all these medical tests and she knows what it's like to be told you have to go on a certain diet and stay on it for life.

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Hi Everyone,

Thanks for the responses. It feels better just to be reminded that I'm not the only one with these issues. Sometimes it gets to feeling a little isolated.

I think one contributing factor in my case may be that I had no readily observable symptoms before. Osteoporosis, mild anemia, restless leg syndrone, and peripheral neuropathy are invisible and not things I ever mentioned to most friends and acquaintances. The moderate gastro symtoms I also discovered to be related to gluten (bloat, gas, constipation) were also transparent (except for the occasional sound effects and smells :( ). So for the most part there is no obvious reason why I should be doing gluten-free from friends' point of view.

After reading some of you all's comments, I think the thing that causes some of the relationship problems isn't so much their lack of interest, but a very subtle indication that they don't believe what I'm doing is even worthwhile, much less necessary. To most of my friends any form of alternative medicine (i.e. not dx'ed and prescribed by a regular dr) is total rubbish, and those who go outside the system are considered to have lost some marbles. On the other hand another aspect I notice is almost a resentment that I'm doing something like this and they are not.

Regarding floridanative's comments about having similiar experiences with family - I've had that for years and never expected much understanding, or interest on that front even though their health conditions read like the GS/celiac disease symptoms list. I gave up on them long time ago. I'm very fortunate to have a very supportive wife. Even her relatives have been supportive and interested.

That's enough rambling for now. Again thanks to all for the responses.

George

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i just started being gluten-free and i have absolutely wonderful friends but i don't think they quite get it yet. the other day one of them had some wonderful looking pasta, and was like come on have a taste. and i was just like i can't. and i was shopping with another girl last week and she kept saying, well you can have a little but right? no i can't have a little bit unless you want me to be sick all the time and damage my body! they are still getting used to it and they really are trying to understand so i really can't get that mad at them yet! we'l see how it goes!

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Sounds like you have some good friends there! I'd give them the benifit of the doubt, too :)

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Hello all,

I was diagnosed about six months ago, and I found that my family and friends had a really hard time understanding the disease because I am still quite sick, still on a lot of medication, still dealing with how illness affects one's everday life. However, in September I moved to Michigan (from Georgia) to go to grad school and gained a whole new group of friends. Yes, I was still quite sick, still throwing up, etc, but these people just accepted the disease as a part of who I am. I am starting to feel a little better now, but I am continually surprised by how much new friends are interested and supportive of looking out for me. I think it is really hard for people who have known us as once healthy individuals or individuals who have been sick for a long time and are newly diagnosed to change their perspective of who they think we are. I think time will show existing friends and family that we do have Celiac and that it is the root of our illness, particularly when that glorious day comes when we are out of the "healing" stage and into the stag where we are into the "healthy person with a particular diet" stage.

I was eating a gluten free muffin the other day, and one of my studio mate came up and took it out of my hand, saying "I know mid-term critiques are next week, but I won't let you poison yourself" I had to laugh and promise that it was gluten free. My new friends make me feel like there might be hope for my old friends and my family to come to the same level of supportiveness.

Good luck to everyone

Heather

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Join the club, George. Our friends (and family) think we're freaks, like we've gone on a health food kick, or something. Even the nutritionist made me feel that I was taking this diet too seriously. She told me a little gluten wouldn't hurt my celiac disease son and that eventually he'd be able to eat gluten without being sick.

Just hang in there. It's really tough at first. Then you just kind of get used to it. I pray to see the day where every restaurant will have gluten-free menus, or even better - gluten-free restaurants worldwide, or the best thought yet...a cure. Until then, do what we do. Learn to cook really delicious gluten-free foods and have all your friends over. And don't discuss food or celiac disease on that night. It gives you a break from having to worry about what is safe to eat and a break on having to explain your situation. It makes you feel "normal" once again. But as the word gets out about celiac disease, life will get better for us, and our "friends" won't think we're just exaggerating about some little allergy thing.

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George--- I can understand your frustration, I have the same thing going on my mother says"that little bit won't hurt", my friends are trying to adjust. The ones who understand the best is my sister who has Celiac friends and was the one who encouraged me to go for this test and my older brothers diabetic wife. The rest are going to have a tough time of it my friends are trying desperately to adjust.

At work it is a different story as half the staff is diabetic and the rest of us have something wrong with us, they understand the importance of medically induced diets. Therefore when we have food day we all try to bring something everyone can eat. However, this is going to be a hard one for most of them to get around. But then one girl is vegan so we all try to be considerate of the others.

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My BF Parents used to have me over for dinner but ever since I was diagnosed havent heard from them it's kinda funny how impatient people are or how ignorant people can be. Having celiac has made me a much more understanding person. Now it's like there is a whole new world and I am not the only one living in it. It's pretty crazy to think of what I did not know a couple of years ago. The one thing I can tell you is it only gets better socially & physically.

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Hi George,

yup, what you're going through sounds just like my journey (and lots of others). The bad news is that you can't change other people. The good news is that there is a great message board to come to where you can spill your guts, cheer when you have a great day, complain, bellyache, report new gluten-free finds, and anything inbetween!

I think one of the big problems is the name of the disease (which nobody else has heard of), so it requires an explanation which usually goes something like "well, it is sort of like a bad allergy, but it is an autoimmune disease..." at which point everyone's eyes glaze over. So they think it is diet related, food related, and therefore not very serious and not a problem to 'cheat' on once in a while.

If they changed the name to something more descriptive like autoimmune intestinal destruction disease (help me here, I'm not that creative), then people would be less likely to say..."well, can't you just endure a little bit of intestinal destruction by tasting this pasta today?"

Hey, now there's an idea. Maybe we can campaign to have the name changed! What does 'celiac' mean anyway?

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My BF Parents used to have me over for dinner but ever since I was diagnosed havent heard from them it's kinda funny how impatient people are or how ignorant people can be. Having celiac has made me a much more understanding person.  Now it's like there is a whole new world and I am not the only one living in it. It's pretty crazy to think of what I did not know a couple of years ago. The one thing I can tell you is it only gets better socially & physically.

<{POST_SNAPBACK}>

That is sad that your BF's parents haven't had you over. The probably don't know what to do or handle it and figure if they stick their head in the sand it will go away. I hope they can come around for you. Because I just had a huge surprise.

I just had the most amazing conversation with the hardest person in my family to get to come around. My mother called me about Yule dinner and said that I had best make the gravy so I don't get contaminated. I told her I would also make the stuffing with gluten free bread because that would be a killer, I will bring my own spices to do it with so I won't get any contamination. She agreed that would be the best idea.

I practically fell off my chair.

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I definitely agree with you about this, George. I think for me part of the problem was my own attitude, since this was pretty much what I believed, before finding myself, much to my surprise, having landed outside mainstream medicine. So I didn't present things very well at all at first.

I've changed my views considerably, and now consider myself in the world of advanced medicine, not alternative medicine. One day I expect conventional medicine will catch up with us.

<{POST_SNAPBACK}>

Matilda,

I think you have explained a lot. Now that I think about it, I was one of "them" (mainstream medicine users) until this gluten-free thing came along. I used to detest people who did the "fad" diets (particularly their high-maintenance restaurant ordering) and that included just about any diet except basic healthy, fresh, non-processed food(at least I had that part right :) ). I've never had anything I considered a food sensitivity, ate just about anything. Now I find myself on the other side of the fence, the side "we" used to consider for the lunies. I can see how friends from "their" side would react the way they do, but it's still not comfortable - It's more of a (probably) unconsious dismissive judgemental process on their part - I think that's what really bothers me.

It's possible that this attitude is more of guy thing as well.

I, too, hope someday conventional medicine will catch up with us.

Thanks for the response.

George

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I know what you mean. Growing up with this I had a 'friend' tell me it was all in my head and I could build up an immunity to it if I just ate it all the time. :blink: I don't understand why people are not more open minded sometimes. My mom' s only full blood sister has all of the symptoms they both inherited from their dad and yet she refuses to believe it. She acts like my mom is just nuts. I am just glad I married a supportive spouse. He is the one that helps me through it all.

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I think one of the big problems is the name of the disease (which nobody else has heard of), so it requires an explanation which usually goes something like "well, it is sort of like a bad allergy, but it is an autoimmune disease..." at which point everyone's eyes glaze over.  So they think it is diet related, food related, and therefore not very serious and not a problem to 'cheat' on once in a while.

If they changed the name to something more descriptive like autoimmune intestinal destruction disease (help me here, I'm not that creative), then people would be less likely to say..."well, can't you just endure a little bit of intestinal destruction by tasting this pasta today?"

Hey, now there's an idea.  Maybe we can campaign to have the name changed!  What does 'celiac' mean anyway?

<{POST_SNAPBACK}>

Hi Gabby,

Since you asked :D

"

The first description of childhood and adult coeliac disease was written in the second half of the second century A.D. by a contemporary of the ancient Roman Physician, Galen. He is known as Aretaeus of Cappadocia and his writings which have survived to more recent times were edited and translated by Francis Adams and printed for the Sydenham Society in 1856. The original Greek Text of the sections on "The Coeliac Affection" suggests that Aretaeus may possibly have understood a remarkable amount about the coeliac condition.

The chapter on "The Coeliac Diathesis" describes fatty diarrhoea (steatorrhoea) for the first time in European literature and then proceeds to give an account of several other features of the condition including loss of weight, pallor, chronic relapsing and the way in which it affects children as well as adults. The chapter on "The Cure of Coeliacs" opens with the first passage in which these patients are specifically called coeliacs: "If the stomach be irretentive of the food and if it pass through undigested and crude, and nothing ascends into the body, we call such persons coeliacs". While some people with disorders which may mimic the coeliac condition were doubtless unwittingly included in this description, the same is true for subsequent descriptions until the second half of this present century. The Greek work "koiliakos" used by Aretaeus had originally meant "suffering in the bowels" when used to describe people. Passing through Latin, 'k' became 'c' and 'oi' became 'oe'. Dropping the Greek adjectival ending 'os' gave us the word coeliac.

"

Probably more than you wanted to know, but I couldn't resist. Maybe you're right in that we need a new name with a good sound-bite ring - as one can see from this reference, "coeliac", aka "celiac", has been around for a loong time - could be time for a change.

Thanks for your response.

George

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George, I've had the same thoughts, but keep telling myself that even intelligent people often respond accordingly to our eons perfected conditioning. Ever since the era of modern farming began, we've [all] been told wheat/bread is an essential and health promoting staple... then us 'odd-balls' come along with this crazy notion that our favorite American past-time is actually making people sick....... My family thinks I'm some kinda nut, especially being an older rural southern male. You wanna talk about un-acceptance; tell your mother you don't want to eat the biscuits 'n' gravy she just made you from scratch!

:-)

GC

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