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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.

What Did You Find Most Difficult About The Gf Diet
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What have you found most difficult about Celiac Disease   53 members have voted

  1. 1. What have you found most difficult about Celiac Disease

    • Difficulty of the Diet -- it's difficult to stay gluten-free
      10
    • Restrictions of the Diet -- there's so much less I can eat
      10
    • Symptoms -- I hate being sick all the time
      13
    • Dealing With People -- friends/family/chefs/doctors don't get it
      10
    • Emotions -- dealing with the emotions of a new lifestyle/diet
      7
    • Nothing -- I was a natural from the start!
      3

Please sign in or register to vote in this poll.

17 posts in this topic

Just interested what everyone found most difficult -- there isn't any question that I need answered, but I was just interested. Thanks for voting!

-celiac3270

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I was a "nothing." I do not like being sick, and learning that I can feel good like others made it very easy to avoid gluten!

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Beer!

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I was a 'symptoms'. Even after I learned my 'symptoms' were celiac related and began to avoid gluten, I had many gluten 'slips' which kept the symptoms recurring. I LOVE following the gluten free diet so I can finally heal and resolve those pesky 'symptoms'. However, I've learned the hard way about cross-contamination in 'deli's, in restaurants, and in my own kitchen! :o I've also learned not to assume health products like vitamins or toothpaste are safe. Both my vitamin C supplement and my own toothpaste contained gluten. I just recently learned about the toothpaste. :angry: So maybe the most difficult part about the gluten-free diet for me was the steep learning curve of discerning which foods and products are gluten based and/or contaminated. Hopefully, I can soon go from a 'symptoms' to a 'nothing'. Since I substituted a safe brand of toothpaste, I have been feeling better and better every day. I just experienced my first dinner after which I had NO bloating or cramping pain. So this is what 'normal' feels like ... :P

BURDEE

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Oops.. I put down restrictions, but I really am hating the symptons, kinda read it fast and thought it was asking just about the diet, lol.

And if it was just about the diet, I'd say everything!! But.. I'm new, I'll learn. Like all you ol' timers have, LOL. :D

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Loss of spontaneity. Every trip has to be planned out.

richard

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This was kind of a tough one for me. Initially it was the emotions, I was devastated and cried a lot. Then my best friend said..."hey, you can still have steak, seafood, chocolate and wine! What else could you ask for?" :D I guess she had a good point. Then I bought the book Wheat Free Worry Free by Danna Korn, and it was AMAZING..really helped me with the emotions, and still does at times.

Right now I would have to say that the hardest thing is lack of spontaneity. Working full time (and then some), shuffling 2 kids to afterschool activities and sports, etc...I can't just pick up a pizza on rushed nights. Often I will for them, and then skip the meal for myself or make a salad or a yogurt. There are still times that I wish I did not have to plan every ounce of food in the house.

Eileen

gluten-free since 5/10/04 (Mother's day! LOL)

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I have two that sort of tied, but in the end I voted for symptoms.....that's the worst and is the source of my second problem: anxiety and emotions....thanks for replying so quickly...I realize that most Celiacs hate the symptoms, and many also have anxiety or great emotions....I was just wondering which outweighed which...etc....and I got my answer....thank you again.

-celiac3270

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I voted EMOTIONS.

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I voted for difficulty staying on the diet.. and by that I mean the more unintentional ingestions. I have been trying to be gluten-free since last thanksgiving. But I am still symptomatic much of the time, I think eggs may be the culprit there... It was about 6 years that I was having the symptoms all the time, and the depression was unbearable. I figure it will take some time to heal the extensive damage that has been wrought but sometimes it's really hard staying patient. I am sure you are all familiar with struggling to resit beloved glutenous temptations only to have some other gluten source blind-side you later on. Sometimes it seems a wasted effort.. But I know it's really not because I feel worlds better emotionally. And in time I am sure I will physically too.

Well, this was a cathartic vote...Thank you.

It's nice to whine to people who can actually commiserate!! :lol:

~ S

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I'm with Richard -- definitely loss of spontana..spontanaei....spontananeity....grrr...

I have to plan everything now, and long road trips are a challenge. On the bright side, we've found who our truest friends are. My son's friends got on the web, bought a bunch of stuff from Ms. Roben's and stocked their cupboards with it. Isn't that cool?

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I'm with Richard, too--both my daughter, age 11, and I have celiac disease, and our family outings are still about as stress-filled as they were when we had a newborn in the family! I've been dx'd a while, and had things pretty well covered for myself, but it's a whole other ballgame when you have to be prepared for "food emergencies" away from home with a child. We just take a full cooler everywhere we go these days, no more popping in to this restaurant or that. Definately takes a lot of forethought!

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I thought dealing with people was the most difficult thing. I am a college student and my friends and dining services were so hard to deal with sometimes. They wanted to help, but I usually ended up left out or feeling so different and alienated from everyone else. Traveling with sports teams was a nightmare as well. It just made the adjustment that much harder and take that much longer.

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It's really difficult to eat in a restaurant unless you pick Mexican or Chinese or Japanese. They seem to put wheat starch and flour in everything. Cybergran10

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It's really difficult to eat in a restaurant unless you pick Mexican or Chinese or Japanese. They seem to put wheat starch and flour in everything. Cybergran10

It is difficult....and all you can eat is the boring stuff that you eat all the time: it's not any different when I eat out: it's the same steak or chicken or potato that I'd have had at home, anyway....and like Richard (lovegrov) said, nothing is spontaneous or new or different......it seems to be the same: I don't find that the hardest part, but it can get rather annoying....then again, I'm 13....so if I live a LONG time, I could have another 80 years of meat, potatoes, and gluten-free noodles...with no new sauces or toppings....ugg. I agree with Richard, and I think he, and everyone else (dana_g, ryebaby0) explained it pretty well....you can't just say "that restaurant looks interesting, let's go there." I guess the positive thing is that I never really ate out much even before the diet.

I thought dealing with people was the most difficult thing. I am a college student and my friends and dining services were so hard to deal with sometimes. They wanted to help, but I usually ended up left out or feeling so different and alienated from everyone else. Traveling with sports teams was a nightmare as well. It just made the adjustment that much harder and take that much longer.

Again, I don't find dealing with people the hardest, but I really dislike explaining to everyone. Anywhere what I eat with other people I feel like the oddball....the different one....the weird one....not so much at restaurants (cause I can meat and potatoes and a vegetable....w/o any sauces or contaminants...and look like everyone else), but if everyone else is eating pizza and I'm eating something else, I feel somewhat self-conscious.....sounds like what you said, Melody... :) ...I dislike talking about it with other people or explaining unless I have to...and when I have to, I try to keep it short and to the point.

Thanks for replying...and voting...even though the votes were spread out, it seems like everyone thinks the same way about things....like eating out and symptoms.

-celiac3270

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it's interesting, the thing with dealing with other people about it... I haven't had that problem, and I don't know how much is the people I've known, or the area I've grown up in, but everyone has some allergy or some dislike... "I can't have nuts", or "I destest tomatoes", or "I'm vegetarian (or vegan)", or "I can't have cheese", or "I can't stand fish", or "I don't like spicey foods", or something. Everyone has very different tastes, maybe I've been around a wider variety of that, though. ;-)

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Yep.....I think it just depends on the person, as well...for example, some people are more self-conscious about things, some people have understanding people around them, etc....I think it depends partially on environment and partially on the person....

In many cases, it's not that I have problems with other people, but that I feel different...when I'm eating with others who aren't really aware of celiac disease...

-celiac3270

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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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