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Obstacles Faced By Celiacs


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28 replies to this topic

#1 ResearcheringCeliac

 
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Posted 19 January 2005 - 12:54 PM

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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#2 angel_jd1

 
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Posted 19 January 2005 - 01:23 PM

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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Jessica
Gluten Free since 12-31-2002!!
Kansas

#3 ResearcheringCeliac

 
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Posted 19 January 2005 - 01:36 PM

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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#4 tarnalberry

 
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Posted 19 January 2005 - 02:31 PM

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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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#5 darlindeb25

 
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Posted 19 January 2005 - 02:45 PM

;) 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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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#6 ashlee's mom

 
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Posted 20 January 2005 - 05:33 AM

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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#7 cmom

 
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Posted 20 January 2005 - 06:33 PM

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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Robin from Indiana

#8 darlindeb25

 
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Posted 20 January 2005 - 06:46 PM

: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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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#9 irishchick04

 
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Posted 20 January 2005 - 09:22 PM

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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#10 VegasCeliacBuckeye

 
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Posted 20 January 2005 - 09:30 PM

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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#11 angel_jd1

 
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Posted 20 January 2005 - 09:48 PM

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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Jessica
Gluten Free since 12-31-2002!!
Kansas

#12 luvs2eat

 
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Posted 21 January 2005 - 12:40 PM

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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luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#13 celiac3270

 
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Posted 21 January 2005 - 01:34 PM

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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#14 JUDI42MIL

 
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Posted 21 January 2005 - 02:38 PM

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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#15 Canadian Karen

 
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Posted 21 January 2005 - 08:47 PM

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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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

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