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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? - 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

This Weird Seeming Life
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Guest BellyTimber

In the family I grew up in (and left quite some years ago) we had several minor disabilities which we all have always got round in some excellent ways but perhaps denied a little (mainly for lack of information).

I recently explored how I tick & I think that's extremely valuable information as I decide how to face the next half of my life.

Having celiac disease (equivalent) finally overtake me was, at first, just another challenge to rise to.

Now I'm saying, hang on a minute, what's called for is to act completely "normal".

Even without other household members to cater for, I find that I am shopping, eating out (and in) in what seems a slightly too "odd" way, I feel it does not help me "fit in" (in my own mind definitely, and others' perhaps).

I am saying unusual things to shop and restaurant people, and to the doctor who thinks this a rather rare condition.

It's not a phase, it's becoming clear I'm going to be "stuck" like it.

For practical reasons I had to revert to the "simple" method of gluten-free shopping and eating, hence am not feeling too bright because of some kinds of malt, starch etc. hence the reminders in this forum are very valuable to me to see how to get my "ducks in a row".

Anyone else been through these emotions, what are the stages and how long does it last? Does the light at the end of the tunnel get bigger?

Best wishes,

Michael

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;) michael--the light changes--on some days its very bright and some days it seems so far away--cleiacs sounds simple to deal with, but its a job--a constant vigiliance over your food, always needing to read ingredients before u open your mouth----its always on your mind--it has to be on your mind----keep at it--deb

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"Normal" is subjective. What is normal for me might not be normal for someone else. Gluten Free is my normal, everyone else just eats weird stuff!! :lol:

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"Normal" is subjective.  What is normal for me might not be normal for someone else.  Gluten Free is my normal, everyone else just eats weird stuff!! :lol:

I agree with that...I don't consider myself not normal. I am normal, I eat normal foods too. Just because I can't have certain things does not by any means make me weird, I live a normal life. There is nobody on this earth that is the same...I wouldn't even want it that way the world would be so boring. Everyone has their own idea of what normal is to me being gluten free is normal.

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Guest BellyTimber

I suppose I was just yearning for the old, simple life.

I reckon I must have compassion on the doctor who is the odd one, and be patiently wary in avoiding the shop people, etc.

I also got afraid because the overly narrowly defined diagnoses (and their absence) have lots of legal consequences here.

Today I delved into the recipe section and printed off the batter & deep fried information. That would be more like it! :P Is this a sign of recovery?

I vaguely recall buying a fryer once. Must "dig out" the bread machine again.

Difficult to know where to put things here, it's so small. (Moved home too many times.)

Thanks for your viewpoints,

Michael

:)

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Yep...it's an interesting question that I keep thinking of all the time. And what is normal, anyway? Is it what seems right/normal to you? Or to society? And if it's only on your opinion, then is it your opinion yet that eating gluten-free is normal? Or does it seem...strange? I've decided that at this point eating gluten-free is...natural...but like Deb said, it requires you to be on top of things all the time...I think that's what makes it feel abnormal. After all, if everything was 100% gluten-free and you didn't even need to read the ingredients list to know that...didn't need to worry about contamination...that would seem normal...since you don't need to worry about it--and then, that's basically what normal is to everyone else--not worrying about what's in the foods they eat. :huh:

Ugg...I'm going around in circles and confusing myself :wacko: ...I don't know the answer to this, but it is a pretty deep question :D.

Perhaps it's normal when it becomes routine...and I think I've reached that stage now. Once you don't need to call 1,000 companies to make dinner...then it's normal.

-celiac3270

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Guest BellyTimber

Thanks celiac3270 I knew there must be a down to earth reason for it. The sheer hard work of the double take factor. I'm grateful for the others' opinions on the emotions too.

:D

I was doing better, before I moved home to a place one quarter (one fourth) the size).

:(

Michael

:lol:

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That is a philosophy question... What is normal.

I certainly don't feel normal... but I am still getting sick everyday, so that may have something to do with it... I am bitter today so bear with me. But with regards to the diet....

I do find that I have to put a lot more energy and effort into eating and planning meals than I used to... But it's a lifestyle now and I've learned to deal with it. When I get down about it I just think that I could have it a lot worse...

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I guess it depends on who's perspective we're talking about.....

My diet to me is normal, certainly to my family, I'm normal, but anyone else not familiar with me and my celiac disease, I would be "different"..... As long as I am "normal" in the eyes of the people I care about and the people who count, that's all I need. Although lately my pre-teen daughter whose hormones are all in a tizzy certainly doesn't think her mother is normal, but then again, every girl goes through that stage where they think their mom is "weird". I have been informed today that I am not "cool". Oh well, I guess I better go get my June Cleaver outfit out.......

This too shall pass........

Karen

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All I can say is that I was so sick for so long that I never want to be "normal" again. The gluten-free lifestyle has just simply become a habit but one that I eagerly embrace. Yes I have setbacks but if it wasn't gluten it would just be something else, maybe something even worse. To me the gluten-free way is the healthy way. I can't eat processed crap anymore so how can that be a bad thing? I can be physically active now when I couldn't before. It's just a matter of perspective.

Ianm

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Guest nini

I have to agree that I'd rather be "not normal" than sick all the time like I was. If asking "annoying or odd" questions can save me days, even weeks of being ill, than I will willingly be weird!

Just today I received more confirmation that what I am doing is the healthy thing for my body. I found some photos of me pre dx where I was grossly overweight and bloated like a big ol balloon. Then I compared them with a photo of me taken last week, and I look like half the person I used to be. And I'm feeling soooooo much better! I have so much more energy now and I don't have to take the pain meds for fibromyalgia anymore!

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Have to admit I've been a little resentful about having to expend so much effort to feel normal, but it's getting easier and I'm feeling so much better. I like to be a little "unconscious" at times, and this is forcing me to pay attention and make changes...not at all a bad thing.

I've learned so much here; can't imagine how I would have coped without all the great information from the true experts.

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I'd rather feel normal and look normal (not all pale and thin) than eat normal. Gluten-free is the way to be! :D

And Karen, we think you're cool :P

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What is the expectation of normal ? I consider myself lucky that celiac is all it was..my friends 16 yr old friend died of cancer last week....I mean it could be worse for us...so what we have to check some labels and no its not the most convenient but we were able to get better and we can keep this under control and still live our lives and experience things.

I don't know if you guys ever heard this song but a bit of it goes....I'm in a hurry to get things done, I rush and rush until lifes no fun, all I really gotta do is live and die but I'm in a hurry and don't know why.

I think this is so true...what's really so bad about reading labels? It takes time? Does it really matter if your in the grocery store a few extra minutes? I consider that a normal part of my life.

Did you know in some 3rd world countries there has not been one single report of heart disease, high blood pressure, cancer, etc. because of the way they eat is so good(fruits and veggies) So maybe there are "not normal" foods here :unsure:

Ok just my perspective on things :D

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Like foods extrememly high in saturated fats like fast food burgers and gressy pizza's.

exactly...and things with MSG, hydrogenated oils, and so forth too.

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It is good to read others feel, out of the box, or question normal. I thought I was doing pretty good with my family and explaining to them what I can/cannot eat. Then my son brings over a pice of Birthday Cake and is put out because I told him I could not eat any of it ....even a taste.

My other son is planning a wedding and wants me to do the rehersal dinner (He is 25 and 2nd marriage) We just had a big row because they want me to make sandwiches, chips and make pasta salad. (Last time I make a cake I got sick I believe from the flour being mixed into the air from the mixer) I asked him to find someone else to be in-charge of it and now he is put out with me! Then my husband and I went to a restaurant and he got embarrassed when I was asking about the food! JEEZ! They make me feel like I am too focused on myself. It is so difficult just starting out and trying to not accidently injest gluten! I thought I was doing pretty well but when I went to the Specialist and he asked me if I was gluten-free he said that if I "thought" I was then I probably wasn't. If I could say I am gluten free then I have educated myself enought to know. Thought that was kind of a rotten thing to say at the time but as I read all the posts here on the site ...I believe him. When I go back I will be able to say "Yes, I am gluten-free"

Maybe this is "more than you all need to know"

Frustrated day I guess..........

Laura :(

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Laura,

It sounds like your son is looking at your diet as being some kind of an "Atkins Diet" fad that you are going through. It sounds like he doesn't know or refuses to believe the seriousness of the situation and that celiac is not "just an allergy" but an auto-immune disease. What I think you should do is print off an article about refractory celiac disease and insist he read it (I used the one that is on this site, just search "refractory"). That is what did the trick for my family and co-workers.

Good Luck!

Karen

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You say this is your sons second marriage. If it was the first I could understand his point of view a little. For the second one I would say he's on his own with planning and food especially if he isn't willing to understand your condition.

Ianm

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You are not alone, Michael (and Laura!). It can be very depressing, always planning your diet so strictly, not being able to buy impuse foods like all your friends, and especially the business of having to put every waiter through something like the Spanish Inquisition over simple things like soups and salad dressings. It really gets me down sometimes.

In fact, the thing that eventually convinced me that I really was celiac and not just imagining it happened because I was tired of being "the weird one". I went to visit some old friends, and was having a great time when they decided they had to have some hamburgers. I hadn't had a regular sandwich in months, and I didn't want to start explaining celiac disease to the guys, and thought "how bad could one sandwich be?" because I had never had severe celiac disease symptoms before.

Needless to say, I found out pretty quickly how bad one sandwich can be after not eating gluten for a few months. I spent most of the night on the toilet with vicious pains, felt utterly terrible for a few days afterwards, and you could hear my stomach rumbling a block away. I was miserable, and realised for the first time that celiac disease could be an honest-to-god, full-blown, dangerous disease and not just an odd feeling in the stomach. That was when I knew that I had to start taking my gluten-free policy seriously.

All this is just to illustrate that, yes, I fully understand your feelings. This life often seems weird and tediously abnormal. It can be a chore, and it continually makes you feel like a freak. My daughter, who is three, constantly asks me why I can't eat bread and other things. She "gets it", and I know she doesn't really think I am weird in a bad way, but at this age everything that is out of the ordinary gets thorough investigation and repeated quizzing, just to make sure I'm not making it up.

Still, she is a lot easier to deal with than the adults who constantly ask me can you eat this? Can you eat that? What's wrong with this stuff? What happens if you eat it? For some reason, they always think they want to know what my symptoms are, and when I finally break down and tell them my symptoms (you know the things I'm talking about) they make faces and tell me how disgusting I am for "sharing".

(Tell me I'm not the only one this happens to, please!)

On the other hand, what Kaiti said is very true. The eating habits of our society as a whole are not exactly healthy, and arguably "abnormal". I don't mean to get all preachy here, but if "the celiac experience" has taught me one thing, it's that a lot of very weird, and often sickening, things hide in the food we eat. For about five years before I discovered I was celiac, I was "mostly" vegetarian (didn't eat red meat or poultry, for a bunch of reasons, including ethical, ecological and psychological ones). Even then, I did a lot of label reading, and tried to eat relatively healthy things. I often broke down because junk food is just so tempting, but the thought of all those processed ingredients and unhealthy additives always disgusted me and kept me "clean" for the most part. My friends and family thought that was abnormal, too, but to me it was a logical and informed choice.

Now that I am gluten free (mostly - I'm still learning the ins and outs of a gluten-free lifestyle), I frequently get the chance to surprise those same friends with interesting facts about the things they eat, and I like to think they've sometimes had their doubts about exactly who is normal and who isn't. Most people don't realise, for example, just how much corn syrup they drink and eat in their processed foods, or how much we use wheat as filler in things that really have no need for it whatsoever, or what kinds of things can hide in processed meat. When I point these things out to them, they are almost always shocked. Hopefully I've caused a few people to think twice about the junky drinks and foods that they buy on impulse, and maybe try for a slightly healthier, "purer" lifestyle.

I like to think about that when I'm feeling especially depressed about always having to plan ahead, check the labels, and ask servers detailed questions about the food they give me. There's nothing wrong with eating a banana instead of a candy bar, or a salad instead of a hamburger. It's better for me and it just might be better for our society and our planet.

(Yes, that was me being not preachy... B) . I'm terrible at it, aren't I?)

-- Jeremiah

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