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Obstacles Faced By Celiacs
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29 posts in this topic

Dear Members,

I am researching Celiac. I have been unable to discover three things through websites dedicated to Celiac and through journal articles pertaining to Celiac. I am hoping that you may take the time to post a response to my query or email me directly to fill in the blanks. The questions I have are:

What obstacles do people with Celiac disease face?

i.e. at work, at home, traveling etc.

What are the common complaints?

i.e. about Gluten Free products?

What social stigma and limitations?

Any help will be greatly appreciated.

Regards,

Michael

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Ads by Google:

What is this research for? Personal interest, product development, writing an article, informing the president? ha :lol: Need more info before I shell out info.

-Jessica :rolleyes:

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Dear All,

Sorry, I did not specify why I am researching. As you can tell from the questions I am not researching for medical purposes. I am trying to gather information for a freelance article and also for a marketing research project.

As I read about celiac, especially in medical journals, I find little concerning the psychological or societal ailments faced by suffers. Instead I have discovered a lot about physical ailments suffers face.

Again, I am sorry that did not specify why I was researching celiac.

I hope some of you can give me some insights into a life with celiac.

Regards,

Michael

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Your best bet is to just read through as many posts in this forum, the forums on delphi, and whatever other forums you can find. There's nothing like the information you'll get in those posts as people discuss their hurdles.

As for a woefully inadequate synopsis of my answers:

What obstacles do people with Celiac disease face?

At home - varies, depends on how gluten-free you keep your kitchen, and how you eat - for me, the biggest problem is not having as quick of foods, but that would be less problematic if I could eat dairy, or unlimited amounts of soy

Work - eating out with coworkers can be problematic, as well as simply having them understand

Travel - again, the eating out issue

Eating out - first there's the problem of restaurant staff being uninformed, then the problem of communicating the diet, then the problem of them being uncaring, then the problem of cross contamination

What are the common complaints?

The symptoms - the fact that you can lose a number of days out of your life if you accidentally (or on purpose) get gluten

Pre-made food - I haven't found a lot of it that's all that fabulous, particularly since I'm looking for things that aren't simple starches or sugar

Recipes - lots of ingredients, and expensive ingredients, for gluten-free baked items and then a lot of recipes have very high sugar content and low protein content

What social stigma and limitations?

Lack of understanding of the physical problem - people not getting that it's more serious than, say, lactose-intolerance, which does not cause physical harm, and people assuming that it's not serious because it's not immediately life-threatening upon a single incidence of exposure like an anaphylactic allergy

Lack of acceptant - people who won't accept the diet as it's presented to them, but encourage a celiac to "have just a little bit"

Lack of instant food - you take for granted, if you're not intolerant of a common food, that if you're out and about one weekend afternoon running errands and visiting friends that if you get REALLY hungry, you can just stop somewhere and pick something up. we don't have that same freedom.

Lack of understanding of the mental problem - pepole don't seem to understand that, given the types of foods most Americans eat, not being able to have gluten is a threat on your food supply, and any threat to a basic human need is psychologically tough. there are all sorts of ways to work around it and compensate, but when push comes to shove, things that other people think - or even ourselves - of as food are poison, and it's a threat to our health. it's scary, and can cause some level of anxiety in even very calm people in some situations, and it's very hard for people to relate to that.

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;) yup--tiffany is so correct--i would like to add one more thing--gluten free is hard enough and she is correct--people dont want to understand--we always hear--just one bite wont hurt--come on, one time----well, it does hurt and sometimes its almost unbearable the pain we feel---then when you add other intolerances to this formula--like soy and dairy--it gets even harder--people need to be educated and soon----deb--there's my 2 cents worth :lol:
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Well, I will try to add a bit, but I first want to say that I totally agree with these ladies!

My 5 year old daughter was diagnosed last March so I am still pretty new to this, but I can tell you how traumatic her being so sick and trying to absorb all this information has been. Realizing all the obsticles that she is facing now and will continue to face. Simple things that people take for granted, like finding easy food for her if we are out, having to turn down samples at the grocery store, not playing with play dough or silly putty or anything like that. I make most of her foods from scratch since it helps with both taste and cost, but people don't realize just how much easier it is to run to your local grocery store to pick up bread and crackers! People also don't realize how hard it is to find out what may be causing a reaction. My daughter has been having some symptoms and I am trying to rack my brain to find out what is causing it. Knowing that the tummy ache and diarrhea are just symptoms and that damage is being done to her body makes it very important to find out what the problem is and fix it. It is frustrating enough, but then to hear people say, "Oh, just wait and see what happens" is about too much! One last obsticle has to be dealing with Dr.s! I think the main problem is getting diagnosed initially, but since we all learn through this process just how little most Dr.s know about this disease, we realize we really can't trust them as much as we may have before. I have learned to trust the advice of other Celiac's more than the Dr.s.

As far as common complaints, I would have to include how hard it is to find out if something is safe for her to eat. Not only do I have to read the ingrediants, I then have to call and check on any that seem suspect and find out what they may have come into contact with while being produced. Once getting this information, we also have to decide if the company is really taking our needs seriously enough for us to trust their answer. For example, I was told that a certain store brand cereal was gluten free, and that all their lines went through a washing between products. I later found out that the washing is only after the 8 main allergens (which includes wheat, but not barley, oats or rye) and that the main area that the malt is in is washed, but the rest would be so minor it was not washed each time. That means it could be contaminated. And finding that information out took so many phone calls!

As far as social stigma and limitations, she is still pretty young, and since we homeschool we don't have many of the issues others would have about dealing with a school. (We didn't decide to homeschool because of celiac disease, but it is an added benefit to have complete control diet wise) We do try hard to make sure we stay postive about everything to our daughter. If we are explaining celiac disease to someone and they ask if she will always have it and say something like "you poor thing" we make sure to point out that how grateful we are that she is healthy and that we can stay healthy. It can be a hard balance at times.

After all this ranting and raving, I want to point out that no matter what the obticles are, Celiac Disease is something that you can live with. I am glad that my daughter can live a full and healthy life, and that she doesn't need medication every day and hospital stays. While it would be nice for other's to realize what we go through, and it would be wonderful for some things to be easier, I have to keep in mind how fortunate we are that Celiac Disease can be completely controlled through diet.

Michelle

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I can't speak for everyone b/c each person has different symptoms. However, with chronic diarrhea being my main one, I can tell you that going out in public has been a real challenge at times. Everyone in my family can tell you that I know where every restroom is between home and 50 miles in any direction. Once you have an "unpleasant" experience, it causes a mindset that makes you fearful of it happening again which in turn can lead to panic attacks. Thank goodness I have a job where I can go to the restroom whenever necessary. I would be unable to hold down an assembly line job, checkout cashier, etc. where I couldn't leave my post. Also feel the need when in a crowd to sit as close as possible to the door for a quick escape. In an auditorium, must have an aisle seat. Get claustrophic otherwise. If this weren't so frustrating, it would be almost funny.

As far as products are concerned, the perfect world would have everything labeled gluten free or contains gluten.

<_<

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:P cmom--i am you, you are me----that is exactly how i used to be--not so much anymore--i knew where every bathroom was in any local place and i still wont frequent places that dont have restrooms for the public------geez--everything, right down to the asile seats, claustophobia--wow-----deb
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I totally understand about the bathroom thing. It would just drive my family and friends crazy when I would have to stop every 100 ft. when I was having a reaction (this was before I found out about being Celiac). I think one of my worst experiences was when I went with my college dorm to Vancouver, Canada. I had such a bad reaction on the second day and my friend and I we're on the bus to Redland. Not fun. Also getting a reaction in the middle of class. . .

I think one of the hardest things now about being gluten-free is that not a lot of places on my college campus have food that I can eat. It's so frusterating when I have to go back to my dorm to eat after class and my friends want me to go eat with them in the campus cafe. You start to feel really isolated. Luckily, my friends are extremely understanding but I know I tend to drive them up the wall obsessing over what I can and can't eat. I am hoping the longer I am gluten-free, the less I will feel the lost of all the foods I used to be able to eat.

Hope this helps,

Caryn

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What obstacles do people with Celiac disease face?

i.e. at work, at home, traveling etc.

How about a top 10 list?????

1. Eating at other peoples' houses with "dirty" pans (i.e. pans that have had food contaminated with gluten in them before).

2. Hoping a Waiter understands what cross-contamination is.

3. Ordering a sald WITHOUT croutons and hoping the waiter does not go in the back and "remove" the croutons (crumbs hurt us too, bra)

4. Paying twice as much for "safe" bread, crackers, soup, waffles, etc

5. Thinking twice about kissing my girlfriend if she has been drinking beer.

6. Two words.........Constant Flatulation

7. Talking with a customer service rep and trying to remain calm as she tells me "I'm sorry sir, we don't have that information on our product.."

8. Having to explain to every person at a bar that I am "allergic" to beer, but thanks anyway. (This is immediately followed by "Oh man, are you really allergic to beer...if that was me, I would kill myself"

9. Not being able to have real bagels (although glutino bagel's are close

10. Always having to have special meals made for me at conferences, ailine flighs, work luncheons, dinner parties, weddings, banquets, etc)

What are the common complaints?

i.e. about Gluten Free products?

Pizza will never be the same.....I miss burritos (corn tortillas are not the same).

Gluten free products are expensive, they mold quicker, they are "chewier" and they are less convienent.

What social stigma and limitations?

We are forced to live a life that is a burden to everyone in the hospitality business. Whether it is a chef, a school cafeteria, people running conferences, restaurant managers, banquet supervisors, waiters, bartenders and even the high school kid at McDonalds.

Gad, was that depressing or what?????

I think all of the celiac disease, GI, and DH sufferers need to have an annual blow-out weekend in Vegas every year...we could take over the town and have a blast!!!!!

At least Wayne Newton and the Slot Machines are gluten free :P

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What obstacles do people with Celiac disease face?

i.e. at work, at home, traveling etc.

1) I believe one huge obstacle is information. There is so much conflicting information out there for us. So many things are still confused by many people (vinegar issue being a huge one). One group of people say one thing, another group says something different. No one pays for the research to be sure who is correct with their information because Celiac Disease isn't a "money maker".

2) Eating outside of my own home is an obstacle. If I eat at another person's home I worry about contamination and proper ingredients. If I eat out, I worry about the same thing.

3) A person with celiac disease can not be totally "carefree" when they leave their home. They must know where they are having lunch, who is making it, what is IN it, etc etc etc. It would be so nice to not have the "worry" element when I leave and know I have to eat a meal outside of my home.

What are the common complaints?

i.e. about Gluten Free products?

1) Products are very dense (double as paper weights)

2) Products have shorter shelf life

3) Products are very "crumbly"

4) Some things lack taste.

5) Celiac Disease isn't understood by the majority of the general public and even the medical community.

6) Wish we could get more "publicity" on the disease.

What social stigma and limitations?

People with Celiac Disease are limited in social outings. It is very difficult to go out to eat, go to a party, celebration, trip to the zoo etc. The reason being is that food is usually a center to these activities or at least has to be considered. It is hard to find things to eat in an everday situation without planning ahead.

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What obstacles do people with Celiac disease face?

i.e. at work, at home, traveling etc.

I don't face so many at work. A coworker's aunt is a celiac. It's not hard for me to say, "No thanks, no cookies, etc. for me." Traveling is only hard if you don't speak the language and can't ask about gluten-free foods in restaurants, etc. It is quite amazing tho how people don't "get" it... "There's no wheat or flour in the soup..." that's got pasta floating all in it. (Arrgghh!!)

I was with the "know where the bathrooms are" crowd, but since I've been gluten-free for several years, it's unusual for me to be running for a bathroom anymore... I'm THAT careful.

What are the common complaints?

i.e. about Gluten Free products?

As others have said, they are expensive and a poor substitute for yeasty wheat bread, an ice cold beer, and about 100 other tastes and sensations I could name. Altho, I've just ordered some Manna from Anna bread mixes that I'm keeping my fingers crossed for!

What social stigma and limitations?

I don't find a social stigma at all. I'm not a thin person, so if I refuse cookies or beer, it could easily be for any kind of diet. The limitations are in my own head. I miss bread and beer and cookies and lots of stuff like that.

But, know what? There are so many worse things to have than celiac disease.

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I have nothing more to add, but wanted to say that I strongly agree with just about everything that has been said :(

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What obstacles do people with Celiac disease face?

home-- My biggest problem is that two other people in the house are not celiac- so I see all their good stuff all the time..

Keeping my area gluten free is a challenge.

The expense

work- I work in sales so if i dont take something with me to eat in the car. I am out of luck, because stopping to pick up something fast is not gonna happen now

What are the common complaints?

Mine is finding food that is edible to me. I was a picky eater to start with and I havent found any pastas or breads I can eat at all.And, I thnk I have tried them all by now.

What social stigma and limitations?

Again I was a picky eater anyway-- most think this is just my way to eliminate even more food from my diet.So before being dxed with it- I heard all the time I was anerexic-- now it hasnt stopped because I cant eat so many things.

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Hi Michael,

Here are some of my answers, and I apologize if some of it sounds gross.....

What obstacles do people with Celiac disease face?

i.e. at work, at home, traveling etc.

At work, I have been pretty lucky, all my co-workers were really supportive. I printed out an article on celiac and distributed it to them so they had some knowledge about it. One thing I usually had to do right after lunch is go into our boardroom and lay down on the floor until the cramping and gas went away or else the pain would be a stabbing pain all afternoon.....

At home, very difficult. I am the only one who is celiac and I have a very busy household of four children including 3 yr old twins. Having to turn my head when one of my 3 yr old boys goes to give me a kiss when he has cookie crumbs all over his face, breaks my heart. He can't understand why Mommy doesn't want to be the recipient of one of his "smackers".... Also, trying to keep myself from being contaminated is a huge concern, i.e. preparing the kids' foods, snacks, dinner, sandwiches for school. During dinner is the worst, as I find myself rushing and sometimes "cut corners" to get everything on the table, i.e. not washing my hands after touching bread, etc.....

Travelling, extremely difficult. Like most others who have posted, I have to know the location of every bathroom wherever I go. I have maybe a one minute window where if I squeeze hard enough, I MIGHT be able to hold it until I get to a bathroom, if I don't VERY QUICKLY, then, pardon me if it gets gross here, but it explodes out of me.... Another thing to take into consideration is if I travel with my family and we stay at a hotel room overnight, my kids aren't too happy, as your research probably has already told you that a bowel movement of a celiac is rather "foul smelling". At home, I have my own "reserved" bathroom. I used to belong to a baseball team, and I dreaded when we went away on tournaments, finally, I just quit.

What are the common complaints?

i.e. about Gluten Free products?

Expense. The gluten free diet is an extremely expensive diet. In Canada, celiacs are allowed to claim the difference of the cost of a gluten free to a non gluten free product on our tax returns, but does not make up nearly enough of what you have to spend, i.e. $6.00 for bread, $5.99 for 6 muffins. If you are lucky to have the time to bake your own stuff, that makes it alot easier, but even with that, the ingredients (i.e. specialty flours, etc.), are still quite expensive.....

Availability. Unfortunately, I just recently moved out of the city (Toronto). I had two or three really good supermarkets (I had a Loblaws that had 1 1/2 aisles of gluten-free stuff, I was in heaven).. But now that I am in a smaller town, there is NOTHING

What social stigma and limitations?

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Oops, hit something by mistake....

Anyway, now there is nothing out here. I talked to the manager at A & P out here and he is very accomodating. He asked me to bring in the wrapper of the breads that I use and he will contact the company to get a list of things we can order. He even said that he is going to make about a 4 foot section in the store for gluten-free stuff as he has heard of celiac and wants to make things more available due to the recent reports that diagnosis is on the rise....

What social stigma and limitations?

This one is quite difficult to answer. When you suffer from chronic diarrhea, the social and emotional aspect can be very demoralizing. The fact that I am 41 years old and have to wear Depends to bed most nights absolutely embarrasses me. Not exactly what you would call sexy for my husband...... Having accidents is traumatic, both at work, at home, or out in public. Waking up to realize that you have had an accident through the night and hope you can clean up and get the smell under control before your husband wakes up.... Worrying about if my husband is going to lose his attraction to me and the paranoia that accompanies that, i.e. is he going to cheat on me? (even though I know he loves me with his whole heart.....), it still is in the back of your mind "Why does he put up with this?"

Another aspect of celiac is the variety of other symptoms, and there are many. For me, the worst is joint pain. Going out on outings are not only difficult bathroom wise, but walking (i.e. at a fair, etc.), I have a hard time keeping up with my family, and they look behind like I'm some kind of an "old woman" or something... Waking up on the morning, for the first 5 to 10 minutes, I am walking around like I was run over by a Mack truck the night before. Not being able to do the more "physical" things with my kids, having to leave that up to my husband (i.e. playing ball, running after the ball, teaching them to ride their bikes, etc.). Another thing to note also is the accompanying variety of other autoimmune diseases we get hit with. For me, it is both hypothyroidism and collagenous colitis. But there is also diabetes, DH (rashes), there is also a link to MS and a multitude of other diseases.

One thing that I must note is the amount of time it takes to finally get a proper diagnosis. Most of us have suffered many years before some bright doctor finally clued into what was wrong with us. Celiac has to be brought to the forefront in the medical establishment. Doctors have got to be educated to spot the signs of celiac. Most people on this site actually found out for themselves through their own research and had it confirmed afterward.

One last thing that I have to say is that, from the time I found out I had celiac (many years ago, and also have had the symptoms since childhood), I know feel pretty sure that I know how I am going to die eventually. I literally am convinced that bowel cancer will be my ticket to heaven. Since I have had the symptoms since toddlerhood, and wasn't diagnosed till my 20's, and the fact that I seem to have symptoms that don't respond to the gluten-free diet, although I have been confirmed to be celiac with both blood tests and scope, I know that my digestive system has suffered years upon years of damage.... That is why I am convinced of my fate.

I am so terribly sorry that I have rambled on and on. I usually am not so long-winded (flatulence wise, yes, but verbally, no, lol!!!!)

Hope this helps you in your endeavors.....

Have a great day!

Karen

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I'd have to agree that eating outside of your own home is the greatest obstacle. The pitfalls of this are, but I am sure I will be missing some type of instance:

1) Kids at school who are celiac can't eat snacks brought in by others , in general unless they are fruit or prepackaged made by a company that are considered gluten-free. Little ones might not have the whole gluten-free thing down pat and eat things they should not have.

2) Eating at friends' and relatives' places is unknown territory. Friends and relatives may mean well, but unless they know the ins and outs they could be inadevertently using ingredients that were cross contaminated (like mayo jar) or the egg beaters used to whip the mashed potatoes were last used to mix a gluteny cake and were not cleaned of gluten debris very well. Then you start to get anxiety and even question if there's old gluten between the tines of the forks!

3) Restaurants: do they really understand why cross contamination has to be avoided? What control methods do they use to prevent this? Has this restaurant ever made food for a celiac before today?

4) Caterers and restaurants that host parties: many do not want to prepare gluten-free foods (that has been my experience), so do you go and not eat? do you eat before you go 'cause you know there won't be anything there to eat? do you decline the invite? Do you bring your own food (after you clear it with the caterer ---I don't know how the bride will take it -- will special handling of food be an added cost that the host won't be aware of until they pay the bill?) ? We decline 9 out of 10 catered and restaurant parties; depending on how far away they are and what is the time of the affair.

5) Work - keep lunch at work refrigerator or go home for lunch if possible.

6) mall shopping - can't grab a burger on the run unless you know for certain that that a bun never touched the beef. Since some of us don't trust restaurants at all, your shopping trip is very short so that you can go home and prepare your home cooked dinner from scratch. This is especially true if you are a new celiac and your doctor told you not to eat at restaurants until you are in a "maintenance" phase. Since every celiac is different that phase has no specific time period. Can't run from mall to mall in one afternoon like you used to.

Complaints:

OTC drugs and Packaged foods should have label stating that it's either GLUTEN FREE or not. Hate having to keep checking new formulas, etc. Some times the manufacturers help desks to ask if something is gluten-free is open 8-4 PM M-F in my area and well, I'm at work during those hours and days. I already had a manager bother me about using work time to call (this happended because during my lunch hour the number was busy!).

Not only is the food expensive, but sometimes it's old - been sitting on the shelf right up to the expiration date, if you can figure out what the code/date is.

Some items are not available even at the bigger stores, like Whole Foods and much has to be ordered over mail/internet.

Many doctors still don't know what this disease encompasses and still try to diagnose it as IBS.

The food takes time to prepare, like home made gluten-free breads, cookies. You can buy gluten-free cookies, etc. but sometimes the celiac might be sensitive to an additional ingredient in the premade ones, like soy flour. That would be a reason the celiac would not/could not purchase pre-made breads and snacks.

Social stigma:

Some people don't understand the depth of problem and try to pass it off as a minor health condition. Or say it's all in your head.

Teens probably cheat on diet more so that they an hang out with their friends.

All in all, if you can deal with the negatives (as stated above) you're better off.

If the negatives are true obstacles then you do have to adjust your life that much more.

The one social thing that's bafflling to me is the "super celiac." That's the person who claims that they can handle any situation and they know just what to do in each situation and criticize other celiacs who don't do just like they do.

They pontificate and berate and belittle other celiacs who do it differently (or have other limitations) than they do. This is done without understanding what is going on in the world of the other person. Yes, there's celiac competition within celiac world. That I believe is the worst of it all because you don't see it coming from that direction, then POW!

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What obstacles do people with Celiac disease face?

i.e. at work, at home, traveling etc.

WORK: Let's just say this is just one of the difficult factors in my life. I have struggled for most of my life feeling ashamed with the fact that I have job hopped due to the embarrassment of my problems as well as the lack of understanding when I have been comfortable enough to discuss my issues.

HOME: I also have two others in my household that can eat anything they wish and feel it is rude of me to make them do as I have to. I find it very difficult not to cheat when there are so many of our shared "Fave's" that are at my fingertips, self-control comes a little weak to me at times, and yes I pay for that dearly.

Traveling: We recently went to my husbands christmas party which was being held at a nice hotel. We arrived a little late and were surprised to find that it was a "Mystery Dinner" (you know where you solve the murder.) we were seated by one of the actors who also happened to be our server. Mind you, my husband let his work know in advance that I was gluten intolerant and had celiacs diseaase, however, their was either a mis-communication or it was forgetten altogether. At any rate, I wasn't able to inform our server that I was could not eat my meal due to my condition and she looked at me as though I was a leper! She seemed inconvenienced and it made for a very uncomfortable situation at our table since it was my husband first year at this company and we knew hardly anyone.

What are the common complaints?

i.e. about Gluten Free products?

The expense is just part of my problem. The other is that I live in a small town and must drive an hour to purchase such things and the things that I can find our minimal. I must order order the majority of these items online, which I am afraid to do because I have never shopped online before and the safety issues are unclear to me.

The food is sometimes very terrible and I have wasted allot of money on food that just does not work well for me (however, my dog seems to love it, the bread especially).

What social stigma and limitations?

I am truly bothered with people as well as even some of my own family who feel that if we just eat gluten-free that everything will be fine and that you will feel NORMAL again. It does not just bother me it makes me ANGRY!

This is not just like a cold people, this is our life! We have good days and we have bad, and in my case mostly bad days (I hope just because I am newly diag. and still need to work out the kinks) in my case.

limitations: At this point to many to list.

I just can't beleive how much of this is so understood and that yes, even allot of the Doctors out there are not even educated on this disease. Why is that? This dates back centuries. It is not uncommon. My goodness, it has been around longer than AIDS.

On a good note:

I have to say that I am very glad to have finally found a site where there are people who understand how I feel. It is of great reassurance to me that I am not alone.

And for those of you who have emailed me and responded to my posts and to all of you who share your stories and put up advise as well as important info. I thank you from the bottom of my heart!!!!!! :D

-Sarah

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I agree with everything said!!!! Well put...I will add my 2 cents though...

We buy regular food and gluten-free food, however all baking is done gluten-free which tastes a little different, a little chewy, etc. My kids miss "real pancakes" or "real brownies" - however, when I was making gluten-free food and keeping it for just me (I am the only one in the house), that would bother them too. Everyone is still adjusting...

The strange looks when we go to a family gathering at a buffett (ICK) and the strange looks from the cashier when I just order water. They have a hard time understanding that I am not eating their food. I bring a snack and chat.

Going out to eat during a busy time - not really the best idea which means no Friday or Saturday night meals out...even if all the wait staff has been very helpful and friendly (for the places I have called to see if they will cook for me).

We are preparing for our annual big vacation (this year we are going southern) and plan on taking our camp stove and a big cooler so we can cook each breakfast and other meals on the road so I won't get sick. Traveling will never be the same.

Ordering a plain hamberger, no fries, a plain salad without croutons, cheese or dressing and a little guacamole (sp) on the side and paying $2 more for the privelage.

One sick little game I play is: if I were to pick one food that I miss, which one food is worth it enough to eat that I would be willing to get sick...so far, nothing but I still play.

-Kate

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I too agree with all the responses so far. Hopefully I won't be repeating too much with my gripes.

What obstacles do people with Celiac disease face?

i.e. at work, at home, traveling etc.

I work at a group home for developmentally disabled individuals. I frequently have to grind bread in a food processor (part of the texturization of food). I realized about 3 months ago that this was making me sick (breathing it in). I went to my wonderful doctor about it and got a letter for my employer stating that I need to wear a mask when making food at work. Well, I guess my supervisor's sister is a Celiac as well, but never sticks to her diet, so my supervisor now thinks I'm totally crazy.

Home poses no real problems. My boyfriend is very careful with his gluten-y foods. I just wish I didn't have to cook every dang meal from scratch.

I just went to Germany for 2 weeks. I didn't trust my airline to provide me with a meal that I could eat, so I called the airline and they said I could bring my own and heat it in their microwave. Well, after I boarded the plane, I asked the stewardess about it and she looked at me like I was nuts and said they didn't have a microwave on board. She later offered to heat it up in one of their ovens. I was nervous, but asked her to clean the pan first and make sure it wasn't touching anything else. 2 hours after I ate, I had one of the worst reactions I've had since diagnosis. Next time I'll bring dried fruit.

What are the common complaints?

i.e. about Gluten Free products?

I have yet to find a "gluten free" product I can tolerate. My diet is very simple (almost boring), but all I eat are naturally gluten free foods. When I ate the "gluten free" products, not only was I disappointed in the taste, but I gained weight, was sick all the time, and broke.

What social stigma and limitations?

I race on a mountain bike team in Colorado and my teammates know I'm a Celiac, but it took almost a year for them to understand why I refuse to ride when I've had a reaction. I think they thought I was crazy for a long time.

My close friends think I'm paranoid. I am still somewhat ashamed to explain celiac disease to new people, as it's an embarrassing but major part of my life. I don't get sick too often anymore, usually only when I'm trying something new, but I think to myself sometimes that I would have more friends if I was "normal".

Hope this helps. Sorry for the rambling.

Nadia

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"They pontificate and berate and belittle other celiacs who do it differently (or have other limitations) than they do. This is done without understanding what is going on in the world of the other person. Yes, there's celiac competition within celiac world. That I believe is the worst of it all because you don't see it coming from that direction, then POW!"

I have yet to see this part of the Celiac world.

I must admit, I have a hard time feeling sorry for anyone who knows that a cookie or pasta has gluten in it and then goes ahead and eats it. This absence of "logic" is troubling to me.

I have a few "accidents" a year -- but they are accidents. I have not eaten something I knew had gluten in it since the 1st year of my diagnosis -- maybe it takes folks awhile to learn the hard way.

Everyone I have met have always been supportive and understanding. I suppose I am lucky that I do not have extreme symptoms like some of you. My joint pain and digestive disorders cleared up after being on the diet for 6mos - 1 year.

I suppose I responded because I have never heard other Celiacs belittle or berate other Celiacs. Is this common?

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Everyone I have met have always been supportive and understanding. I suppose I am lucky that I do not have extreme symptoms like some of you. My joint pain and digestive disorders cleared up after being on the diet for 6mos - 1 year.

I suppose I responded because I have never heard other Celiacs belittle or berate other Celiacs. Is this common?

I've been around supportive/understanding people too--for the most part. Everyone in my family has been supportive and understanding--trying to learn a bit about celiac disease, etc.--my 80-year-old grandparents started bringing in gluten-free foods from a healthfood store in CT that we couldn't find in NYC and mainstream gluten-free products--in GREAT BULK. Even at school kids have been really nice--of course, there's the occasional: "I'd kill myself if I couldn't eat pizza." Or, "You can't have this either? That sucks!" But they've been nice about everything.

At camp, I encountered some less nice people who would make fun of it (and a lot behind my back, I heard) or wouldn't take it seriously. They were really cold-hearted, but many teens can be that way if they don't understand it or don't care to. I doubt that many adults are like that, though.

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Obstacles:Eating anywhere else but home is a big one that was already mentioned. I learn not to trust anyone who says o yeah it's gluten-free. Even going to a friends house to eat it's hard because they try to make stuff you can have but they could have easily cross contaminated. Everywhere you go you pretty much have to bring something because you can't eat just anything.

Complaints: Well I will always miss bread and pizza. I have found some pretty good pizzas and bread but still nothing I have tried beats that taste. Also the gluten-free food is sooo expensive. A bag a glutino pretzels I can have(I mean a litte bag) is about 6.00! The price is ridiculous but I have to have something to eat.

The symptoms I had before going gluten free were the biggest thing for me. I felt like crap on and off all the time.

Social limitations: Lack of acceptance. People don't get how serious it can be and think I make a big deal out of nothing. My parents have been very supportive and in this house it is completely gluten-free with everything we eat. My dad has to eat anything with gluten in it at work and my mom has a wheat allergy so is pretty much on my diet. My friends are very helpful and encourage me but i occasionally get " you should try this...o i forgot you can't " and then laugh from some people I meet. I'm only 17 but this has truly been a life changing experience.

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Hi Michael,

While you,re doing your research why don't you find out why manufacturers of gluten-free products charge so much :angry: . Rice is a relatively inexpensive item yet they charge $5.00 for a very tiny loaf of bread that tastes like balsa wood or something. It isn't good at all. You can buy a 25lb. bag of rice for about 5.00 and make lots of things with it. It is bad enough to have to live this way, let alone be ripped of and overcharged for things we have no choice but to buy, or try to make ourselves,like anyone has that kind of time. Same as sugar free products. I also am a diabetic thanks to celiac disease and when you go buy SF Jello they charge you double the price and the only thing that is different is they leave out the sugar. Just doesn't make sense to me. It S/B illegal. I am sure that the response would be that they don't sell as much, but that is nonsense, or they wouldn't sell it to begin with. WELL, now that I have that off my chest, good luck with your research :) .

Mark

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I entirely agree with Mark. The manufacturers completely take advantage of the fact that we have no choice but to make it ourselves, buy their product, or buy the equally overcharged product of the competitors.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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