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kalanfan

Research On Celiacs

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Well im a nursing student and we have to do a research paper on a topic of our choice. Since ive been doing the gluten free thing for a couple of months now i decided to do mine on celiacs. For my primary research i need some questions answered by people with condition so i devised a survey...it would help me greatly if you guys could fill it out.....

What age were you diagnosed with celiac's/gluten intolerance?

What were your most common symptoms?

What are your symptoms when you eat gluten now?

Do you consider yourself more sensitive to gluten now that you try to avoid it?

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis?

Do you have any other food allergies/intolerances?

If yes what?

Does anyone else in your family have celiacs/gluten intolerance?

Do you consider the world celiac/gluten free friendly?

Explain.

Do you think we need better food labelling laws?

Explain.

Does the world in your opinion need to be more educated about celiacs and gluten?

thanx in advance for your time...

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Well im a nursing student and we have to do a research paper on a topic of our choice. Since ive been doing the gluten free thing for a couple of months now i decided to do mine on celiacs. For my primary research i need some questions answered by people with condition so i devised a survey...it would help me greatly if you guys could fill it out.....

What age were you diagnosed with celiac's/gluten intolerance?

52

What were your most common symptoms?

flatus, vague GI discomfort, occasional diarreha, fat/grease in stools. None of the symptoms were dramatic. Actually, the dx was not made because of symptoms but because of lab values, i.e., elevated liver enzymes that had no obvious cause.

What are your symptoms when you eat gluten now?

I haven't tested the waters with gluten since dx. I have consumed trace amounts on occasion by accident and have not noticed any symptoms.

Do you consider yourself more sensitive to gluten now that you try to avoid it?

No, but I really haven't had occasion to evaluate that issue because I've been compliant.

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis?

GP failed me with regard to explaining why my liver enzymes were always elevated. He didn't have a clue about celiac disease. I went to a gastroenterologist and he tested me right away for celiac antibodies (which were positive) and then confirmed the dx with an endoscopy/biopsy.

Do you have any other food allergies/intolerances?

Yes

If yes what?

Corn, rice, baker's yeast, peanuts, filberts, coffee, milk fat. None of these gave strong positives in the allergen testing and I'm not sure how they effect me. Maybe cause some nasal congestion. Some of them are probably even false positives. Since there are so many of them and most of them are ubiquitous food ingredients and since they do not affect me very strongly, I don't try to avoid them.

Does anyone else in your family have celiacs/gluten intolerance?

I suspect some on my mother's side were or are celiacs but none but me have been dianosed.

Do you consider the world celiac/gluten free friendly?

Explain.

No but getting more that way. It's a matter of education and awareness. Celiac disease has gotten a lot of press in the last 2 years and there is more awareness than there was. New food labeling laws are helping a lot and some restaraunts are publishing gluten free menus on the internet. The latest statistics are saying that about 1% of the population has some degree of gluten intolerence. That makes celiac disease a pretty common condition and society will have to begin addressing it seriously. I work in health care and I 'm aware that the medical community is beginning to catch on to celiac disease. At this point, dx rates are way behind true incidence of the disease but it is slowly catching up.

Do you think we need better food labelling laws?

Explain.

Food labeling laws are now adequate, I believe, but what is inadequate is the posting of allergen info by eating establishments.

Does the world in your opinion need to be more educated about celiacs and gluten?

Definitely.

thanx in advance for your time...

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What age were you diagnosed with celiac's/gluten intolerance? 28

What were your most common symptoms? diarrhea, food allergies, stomach pain, nausea, fatigue, depression

What are your symptoms when you eat gluten now? The same. If I eat even a small amount now it seems worse though, and I've developed new food allergies from just being glutened once.

Do you consider yourself more sensitive to gluten now that you try to avoid it? I think I just notice it more. Living with symptoms every day you get used to it. Sometimes even think that is the way everyone is. After being off gluten you come to realize that you don't have to live in pain and discomfort.

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis? It was just by chance when I went to get a blood test before a scope for my reflux and food allergy intestinal damage.

Do you have any other food allergies/intolerances? Lots. It's my very worst symptom by far.

If yes what? My worst is soy, and other beans and legumes. I'm also very allergic to milk, corn, yeast/molds, wheat, oats, eggs. And I'm mildly allergic to turkey, fish, tree nuts, and coffee.

Does anyone else in your family have celiacs/gluten intolerance? Not that I know of, but food allergies run in my family.

Do you consider the world celiac/gluten free friendly?

Explain. Gluten is such a weird sounding word. It sounds a lot like "glutton" which is kind of ironic. :)

Do you think we need better food labelling laws?

Explain. YES. Right not they are only required to put the top 8 on the labels. They should be required to put corn and gluten on labels too, since those are also very troublesome additives.

Does the world in your opinion need to be more educated about celiacs and gluten?

The world needs to be educated on food allergies and intolerances in general. They need to understand that we aren't just picky eaters. This is our lives.

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What age were you diagnosed with celiac's/gluten intolerance?

26

What were your most common symptoms?

diarreah, brain fog, severe stomach cramping

What are your symptoms when you eat gluten now?

brain fog, migraines, loose stools, minor stomach cramping

Do you consider yourself more sensitive to gluten now that you try to avoid it?

sometimes i appear to be much more sensitive, sometimes much less

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis?

my doctor diagnosed me with celiac. i had only read about it before in a magazine and had no clue what it was other than a "wheat allergy"

Do you have any other food allergies/intolerances?

thankfully, no. not at this point

Does anyone else in your family have celiacs/gluten intolerance?

we believe my daughter does, but she is gluten free already so testing would be inaccurate

Do you consider the world celiac/gluten free friendly?

no, not exactly celiac friendly. Actually, it's pretty far from it. i can't even enroll my daughter in mother/daughter classes for fear of cross contamination because of play-doh or snacks or something else equally as bad. thankfully, the word is getting out. hopefully things will get easier for us soon.

Do you think we need better food labelling laws?

absolutely. there are so many allergies out there, not just gluten or the top 8. i believe that all ingredients should have to be listed with nothing hidden under natural flavoring. it just seems to me that we should know what we're putting in our mouths. i can't imagine having an anaphylactic allergy to something that wasn't in the top 8. how would you manage? labeling laws definitely need to be much more strict and they also need to govern medications and personal care products.

Does the world in your opinion need to be more educated about celiacs and gluten?

yes, though word is slowly leaking out. there are more and more people getting diagnosed every day. i think the bigger problem is that there is such a stereotype with doctors as to what symptoms a Celiac patient should present. if we could break down those walls and get the people diagnosed that are actually seeking help, we could definitely spread the word much quicker.

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What age were you diagnosed with celiac? 37

What were your most common symptoms? Bloating, a burning sensation around my middle and alternating constipation/diarrhea.

What are your symptoms when you eat gluten now? Nausea, extreme fatigue, flu like symptoms, diarrhea.

Do you consider yourself more sensitive to gluten now that you try to avoid it? Yes.

Did you or your doctor come up with the celiac diagnosis? I brought it to GI docs twice, had blood tests done twice - both times they came back normal. My second endoscope they finally did the biopsy right and I got the dx.

Do you have any other food allergies/intolerances? No. I avoid corn, seeds, nuts and too much fruit because they disagree with me.

Does anyone else in your family have celiac? Yes, my mother.

Do you consider the world celiac/gluten free friendly? I think the world is gluten-free oblivious. We have to make our own way.

Do you think we need better food labelling laws? The 8-Allergen law is a start. We wouldn't have to keep making new laws if they simply insisted on the truth to begin with. Just tell us what's in the dang thing. :P

Does the world in your opinion need to be more educated about celiacs and gluten? Yes. And it is happening, slowly. . . . like waiting for gluten free bread to rise. ;)

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What age were you diagnosed with celiac's/gluten intolerance?--49.

What were your most common symptoms?--Diarreah, nausea, dizziness, anemia, anxiety, depression, neck pain, weight loss, hair loss, brain fog, cracking teeth, fatigue, fever, flu-like symptoms, eczema.

What are your symptoms when you eat gluten now?--Diarreah, gas, anxiety, watery eyes, fatigue.

Do you consider yourself more sensitive to gluten now that you try to avoid it?--Yes, very much.

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis?--I suspected it, he diagnosed me.

Do you have any other food allergies/intolerances?--Yes, intolerances.

If yes what?--Soy, corn, dairy, coconut, legumes.

Does anyone else in your family have celiacs/gluten intolerance?--Not diagnosed, but I suspect some do.

Do you consider the world celiac/gluten free friendly?--Not yet.

Explain.--Not many even know what gluten means. When told, most people I've dealt with are open to learning more.

Do you think we need better food labelling laws?--Yes.

Explain.--I think the companies need to fully disclose everything that they put in the foods-in plain English. The top 8 allergen listing is a good start.

Does the world in your opinion need to be more educated about celiacs and gluten?--Yes.

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What age were you diagnosed with celiac's/gluten intolerance? 28

What were your most common symptoms? Loose stool, heartburn, abdominal cramps, malabsorption, brainfog, irritability

What are your symptoms when you eat gluten now? Extreme irritability, brainfog, cramps, depression, loose stool, heartburn

Do you consider yourself more sensitive to gluten now that you try to avoid it? I haven't been avoiding it for very long. The damage to my gut hasn't resolved, so it's hard to tell symptoms from that from glutening symptoms.

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis? Me, and an independent lab confirmed senstivity, but I'm still in live for a biopsy, so my gastroenterologist hasn't weighed in yet.

Do you have any other food allergies/intolerances? Yes.

If yes what? Hazelnuts, apparently. That was the only thing that came up positive on a recent skin test. I don't think I really am though. Milk is hard to digest, but I think that's because of gut damage.

Does anyone else in your family have celiacs/gluten intolerance? Not diagnosed, but my mom has had symptoms all her life, which are resolving now that she's gone gluten-light. My dad suspects that the reason he feels so good on the Atkins diet is because of gluten. My grandma has had symptoms, along with lactose intolerance and osteoporosis, and other autoimmune disease run in my family on that side.

Do you consider the world celiac/gluten free friendly? Hardly.l

Explain. People don't seem educated on it. Wheat hides in many ingredients, as does barley, in places where it doesn't seem necessary. I dug into a lovely "wheat-free" cookie at Real Food Daily, only to learn (too late) that it was made with barley flour and barley malt syrup. So obviously, even where wheat-free stuff is being hocked, it's often not safe for gluten-intolerant people. (Aside: even from a health perspective, what on earth is the point of barley instead of wheat? Like it's healthier or something? Bah.)

Do you think we need better food labelling laws? Well, ours are pretty could but they could be better.

Explain. A person shouldn't have to guess whether the "vegetable starch" in a product is from wheat or corn or what. That should be marked. I'm glad that allergen information is now required. The problem is that the default for some companies may be to write that "This was processed in a facility that also processes wheat etc...." just to cover their butts, even where that facility might be just fine. And restaurants are still a problem, as are toiletries.

Does the world in your opinion need to be more educated about celiacs and gluten? Absolutely. First, because it would make the world easier for people who suffer from it. Second, because it's so woefully underdiagnosed. So many people live their whole lives with terrible symptoms and never know what causes them.

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What age were you diagnosed with celiac's/gluten intolerance?

I don't have an "official" diagnosis because I haven't had insurance and just didn't go to doctors much. Had begun to suspect Celiac disease early this year and had the Enterolab test. Two genes for gluten intolerance. Was 59 when diagnosed through Enterolab - symptoms probably began in my early 20s if not earlier.

What were your most common symptoms? diahrea, fatigue, nausea. Would begin mid morning and continue until early afternoon and just wipe me out physically. Had some cramping and lots of fatigue. Then it would start up again several hours later or the next morning - usually continuing for about a week.

What are your symptoms when you eat gluten now?

diarrhea and mild cramping with fatigue, irritability and occasionally headaches. Symptoms are mild compared to pre gluten-free days, lasting only about 24 hours.

Do you consider yourself more sensitive to gluten now that you try to avoid it?

Don't seem to be more sensitive. Haev been on gluten-free diet for four months and perhaps glutened three times - each time symptoms have been more mild and of shorter duration.

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis?

I did - via Enterolab (and reading on this forum).

Do you have any other food allergies/intolerances?

yes - mostly sensitivities

If yes what?

sensitivities/intolerances to corn, casein, egg, soy, potato, coffee, asparagus, alfalfa, green bell pepper

full allergy to catfish

Does anyone else in your family have celiacs/gluten intolerance?

not diagnosed, but possibly my father had it, at least he had loose stools all the time.

Do you consider the world celiac/gluten free friendly? no

Explain.

There's not enough awareness of the possibility of gluten contamination. Heck, most people, including restaurant staff, don't even know that white bread and wheat bread all come from wheat flour. Unless someone has food allergies themselves or their children/spouse, they just don't think about it and don't understand how something as small as a little crumb can be a problem.

Do you think we need better food labelling laws?

yes

Explain.

The list of major allergens is not inclusive enough. A manufacturer can dust the packaging with flour/cornstarch and not need to declare it on the label. The term gluten-free needs to be standardized.

Does the world in your opinion need to be more educated about celiacs and gluten?

Most definitely. Many people suffer their entire lives and die from complecations of ingesting gluten and never knew what the problem was - and that they could have gotten well by simply changing their diet. Doctors are not taught about celiac as they should be and are so resistent to thinking of diet being directly related to disease. The news media could do a good job of educating the general public about this if they were better educated themselves and wanted to tackle this issue.

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Well im a nursing student and we have to do a research paper on a topic of our choice. Since ive been doing the gluten free thing for a couple of months now i decided to do mine on celiacs. For my primary research i need some questions answered by people with condition so i devised a survey...it would help me greatly if you guys could fill it out.....

What age were you diagnosed with celiac's/gluten intolerance? 29

What were your most common symptoms? I had mucus on my stool and really loose stools. Also I would get weird stomach aches in the middle of the night and I noticed a lot of weird muscle twitches.

What are your symptoms when you eat gluten now? I get diarrhea for a few days.

Do you consider yourself more sensitive to gluten now that you try to avoid it? Not sure. Sometimes I'm sensitive, sometimes I'm not.

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis? My doc; they thought at first I might have IBS, Crohn's or Colitis. None of those were right. I had a minimally elevated TTG and then they did the endoscoping and found moderate villi damage.

Do you have any other food allergies/intolerances? Not sure yet.

If yes what? I think I still have an issue with milk.

Does anyone else in your family have celiacs/gluten intolerance? My 80-yr-old great aunt has it.

Do you consider the world celiac/gluten free friendly? More so now.

Explain. More companies answer phone calls and seem knowledgeable about it.

Do you think we need better food labelling laws?

Explain. ABSolutely - it should say gluten free or not gluten free on labels.

Does the world in your opinion need to be more educated about celiacs and gluten? yes.

thanx in advance for your time...

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What age were you diagnosed with celiac's/gluten intolerance? 40

What were your most common symptomsnone at diagnosis. Had biopsy due to bleeding. Looking back, had many clues over a lifetime that I just didn't know were associated such as autoimmune diseases, kidney problems, lung problems, liver problems, vitamin deficiencies, thyroid disease, scoliosis, broken bones, osteoporosis, skin problems/rashes, GERD, abdominal pain that was attributed to IBS, endocrine problems, dental problems, mouth sores in corners of lips, strange marks on tongue, dry eye, bone pain, etc. . .

What are your symptoms when you eat gluten now? within 15 minutes, stomach gurgles, then rumbling intestines, then pain in Left Lower Quadrant/Abdomen, then loose stools. Feels like a flu for about three weeks (gradually feeling better each day away from original gluten episode). Also, get tingling fingers, RLS, dizziness, rash on cheeks and chest.

Do you consider yourself more sensitive to gluten now that you try to avoid it?absolutely. Never thought I had a problem prior. Never had diarrhea in my life prior to giving up gluten. After healing the villi, I get the "classic" reaction.

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis Family history of celiac sprue led to request by me to check for it during endoscopy.

Do you have any other food allergies/intolerances?casein based on enterolab test. have not checked on other food allergies. Always got sick on milk products since a little kid.

If yes what?

Does anyone else in your family have celiacs/gluten intolerance? Yes, everyone that has been tested so far to date: Mother, her parents, father, his parents, sister, my husband, his parents, his siblings, my four children. Not to mention, every single one of my girlfriends. All were given diagnoses of Crohn's or IBS before giving up gluten and finally getting better.

Do you consider the world celiac/gluten free friendly? Not yet, but it's getting there.

Explain. Celiacs "get it." Unless you live this gluten-free lifestyle, you really don't understand the importance of a speck of bread in a salad or the effects this disease has on so many vital functions. I believe more physicians need to test themselves and then we will have effective medicine where the physician can relate to the patient and is concerned enough to help them get well through gluten-free diet.

Do you think we need better food labelling laws? Yes.

Explain. For example, this year, labels were listing the 8? common allergens. I have noticed a change back to not listing allergens separately and completely. A chocolate chip bag had ingredients listed such as cocoa, sugar, soy lecithin, milk fat, vanilla. There was not a separate allergen line on the bag. Just spoke with a customer service rep who actually told me that there were no known allergens in the bag. "Milk fat is not milk so therefore it does not need mentioned." Also had someone (a major company executive) tell me that the food industry does not consider gluten a big deal because "it doesn't kill you." "It occasionally causes stomach upset and that's no big deal." If manufacturers don't believe it is important, they don't care about labels. Many just see it as an inconvenience or expense to change the label. Have also been told by companies (in writing) that they don't want involved in the gluten free labeling process because they cannot control their ingredients. If they make yogurt, they know it is gluten free, but if they put flavoring or other ingredients they don't know what that supplier has in that particular ingredient and they don't have time or resources to confirm every ingredient that goes into their products. That doesn't help us.

Does the world in your opinion need to be more educated about celiacs and gluten? Yes. Perhaps if everyone were tested at birth for both celiac disease and gluten intolerance genes, we could learn from the beginning how to eat properly and perhaps prevent many associate diseases and disorders in the meanwhile. It would eventually trickle down to schools, restaurants, medical facilities, and so forth because there's power in numbers.

thanx in advance for your time You're welcome and good luck!

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Guest marshlakemom

What age were you diagnosed with celiac's/gluten intolerance?

Age 32

What were your most common symptoms?

foul smelling diarreah, extreme stomach pains with bloating, brain fog, bone pain, insomnia, depression,anxiety, vitilego

What are your symptoms when you eat gluten now?

All of the above symptoms

Do you consider yourself more sensitive to gluten now that you try to avoid it?

No I don't consider "more" sensitive, I get the same symptons after ingeesting gluten, sometimes it may take a few days for me to react

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis?

After seeing several doctors, one doctor finally decided to have me see a gastronologist for testing for Celiac

Do you have any other food allergies/intolerances?

Lactose Intolerant

If yes what?

Does anyone else in your family have celiacs/gluten intolerance?

No one has been tested for Celiac, but I suspect my gene was picked up from my father, I suspect also that a couple of my adult children are Celiacs, but they will not get tested, some are showing symptoms

Do you consider the world celiac/gluten free friendly? Yes too some extent

Explain. I find this past few years (5 or so) that when I mentioned to someone that I have Celiac Disease they know what I am talking about, as compared to earlier, no one seemed to know what I was talking about, I had to explain to them. I find that restaurant waitresses and cooks still don't know what Gluten is, I have to go through a big speel when I order.

I certainly don't find the world to be gluten friendly..esp. when it comes to eating out. I think all major restaurants/chains should have a gluten free section in their menu.

Do you think we need better food labelling laws? Yes

Explain. I would like to see labels on all food products indicating wether they have gluten or not, so we didn't have to read the ingredients and make a decision as to wether or not I can have it. Just a simple label stating "gluten free", or "contains gluten" I would like to see more gluten free foods available in our grocery stores, and at a reasonable price. We seem to have to pay soooo much more for gluten free foods.

Does the world in your opinion need to be more educated about celiacs and gluten?

I think with the percentage of people in the world who have been diagnosed with Celiac, that absolutely the world needs to be more educated about celiacs and gluten.

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What age were you diagnosed with celiac's/gluten intolerance?

53

What were your most common symptoms?

DH, cramping, nausea, gas, diarreah, brain fog, extreme fatigue, bloating.pains in lower abdomin.

What are your symptoms when you eat gluten now?

DH, cramping, nausea, gas, diarreah, brain fog, extreme fatigue, bloating, pains in the back, sides and lower abdomin.

Do you consider yourself more sensitive to gluten now that you try to avoid it?

It take a very minute amount of gluten to make me very ill.

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis?

Me, my dentist and an allergy specialist 25 years ago and no one listened to any of us. I had to force them by having a tantrum of sorts to do a skin biopsy.

Do you have any other food allergies/intolerances?

Yes

If yes what?

Dyes and hormones injected into red meat, casein, dairy, no organic poultry

Does anyone else in your family have celiacs/gluten intolerance?

Do you consider the world celiac/gluten free friendly? No!

Explain.

People don't take it seriously unless you tell them it is a severe allergy to which you can die. Doctors don't look outside the box and think you are neurotic. You have to drive all over the place to get food that costs double and triple of normal foods. You have to go to health food stores to get morst of your foods. You are afraid to eat out at a friends place in case you are glutened, many restaurants are not very accomodating. It is getting slightly better by the fact there are becoming more good tasting Celiac foods out there but still not enough.

Do you think we need better food labelling laws?Yes!

Explain. First; all countries need to bring in a "full disclosure law," meaning that that they have to disclose the smallest amount of anything that is used in their product. Including the facility and machines they are made with, in case they use the equipment for other things.

Does the world in your opinion need to be more educated about celiacs and gluten?

Yes.

1) The governments should cut the comedy by saying stupid things like 1/200th is safe. What is safe for one is not safe for all.

2) governments should make this a disability because when we are glutened some of us are severly disabled by it for days or even weeks. Not only that but it makes it hard for many to work when you fear that you may get glutened every day of your life at your job.

3) The cost of our food should come down to a reasonable level.

4) The public, government and doctors should be taught to look past the end of their nose.

5) Doctors should be taught that not every answer lies in a test, thinking is important and to quit treating us like difficult neurotic children.

6) There should be be classes and information to the public and politicians on what Celiac and gluten intolerance are and what they can do to your life.

Everyone gets to thinking that it is serious if you are allergic to peanuts but we are just being "picky and difficult" because we don't drop dead on the spot from gluten.

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What age were you diagnosed with celiac's/gluten intolerance?

24, though I believe that it started 3 years earlier with a nine-month battle with lung infections (and the anti-biotic induced yeast infections that went along with it).

What were your most common symptoms?

intestinal pain, bloating, fatigue, brain fog, and constipation - those are the ones I most directly attribute to gluten

What are your symptoms when you eat gluten now?

intestinal pain, brain fog, diahreah

Do you consider yourself more sensitive to gluten now that you try to avoid it?

yes

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis?

I suggested it, after someone else said "oh, you have vulvar vestibulitis, you must have celiac" and I just wanted to prove them wrong. My doc was very willing to do the tests based on my symptoms and how I responded to two weeks on the diet.

Do you have any other food allergies/intolerances?

Dairy (casein intolerance), as determined by an elimination diet. It causes diahreah and intestinal pain as well.

Does anyone else in your family have celiacs/gluten intolerance?

Not that I know of, but the symptoms would be easy to ignore and I'm not sure that I'd know if it were in my family.

Do you consider the world celiac/gluten free friendly?

Nope. People don't know what celiac is, they don't know how to look for it, and don't respect that if you have to avoid it, you have to avoid it. People say "oh, you can't have anything" if you say you can't have gluten - though that primarily is a symptom of the world not being food-knowledgable. Food companies, pharmaceutical companies, and restaurants can't even answer questions reliably about their own products when it comes to gluten containing ingredients. Hopefully, this will change over time, however, as awareness increases.

Do you think we need better food labelling laws?

Yes. In the US, gluten-free still isn't defined, though the definition will be required soon. Additionally, it appears that companies aren't always compliant about adhering to the food labeling law, but that may be partially due to the recent addition of the regulations.

Does the world in your opinion need to be more educated about celiacs and gluten?

Yes. As stated above.

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Well im a nursing student and we have to do a research paper on a topic of our choice. Since ive been doing the gluten free thing for a couple of months now i decided to do mine on celiacs. For my primary research i need some questions answered by people with condition so i devised a survey...it would help me greatly if you guys could fill it out.....

What age were you diagnosed with celiac's/gluten intolerance?

25

What were your most common symptoms?

nausea, vomiting, VERY bloated, diarrhea/constipation, gas

What are your symptoms when you eat gluten now?

I've only been gluten free for about 2 months, but was recently glutened on accident by cc. I had the same sympotoms but slightly less severe.

Do you consider yourself more sensitive to gluten now that you try to avoid it?

not sure

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis?

My doctor

Do you have any other food allergies/intolerances?

No

If yes what?

Does anyone else in your family have celiacs/gluten intolerance?

No, but I suspect my brother and cousin have it.

Do you consider the world celiac/gluten free friendly?

Explain.

I would have to say NO considering the fact that most people I come in contact with have never heard of it and the medical field doesn't seem to be up to date on it!

Do you think we need better food labelling laws?

Explain.

Yes. For someone with celiac disease, listing wheat on a product just isn't gonna cut it. Not to mention all the other people with other food allergies/intolerances.

Does the world in your opinion need to be more educated about celiacs and gluten?

Without a doubt.

thanx in advance for your time...

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Yes, I know this sounds completely anal, picky, whatever. As a nursing student you should mention that it is Celiac NOT Celiacs.

That drives me batty. Along with the word signage. Signage is not a real word. The word is signs. We don't need better signage at the intersection, we need better signs.

Yes, I know I'm wierd and freaky. :ph34r:

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Well im a nursing student and we have to do a research paper on a topic of our choice. Since ive been doing the gluten free thing for a couple of months now i decided to do mine on celiacs. For my primary research i need some questions answered by people with condition so i devised a survey...it would help me greatly if you guys could fill it out.....

What age were you diagnosed with celiac's/gluten intolerance? 21

What were your most common symptoms? none

What are your symptoms when you eat gluten now? headache and bloating

Do you consider yourself more sensitive to gluten now that you try to avoid it? yes

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis? yes

Do you have any other food allergies/intolerances? no

If yes what?

Does anyone else in your family have celiacs/gluten intolerance? not that i know of as of yet (still getting tested)

Do you consider the world celiac/gluten free friendly? no

Explain. everything is geared toward the general public and we are not considered to be a part of that...labeling sux, prices suck, and its hard to find good tasting things sometimes

Do you think we need better food labelling laws? yes

Explain. if anything in a product contains gluten, it should be listed as an allergen (even the "ify" ingredients)

Does the world in your opinion need to be more educated about celiacs and gluten? yes

thanx in advance for your time...

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Agreed-please make sure it is referred to as Celiac Disease or Celiac, but NOT Celiacs or Celiac's Disease. :) (I was a tech writer---I'm picky, too!)

What age were you diagnosed with celiac/gluten intolerance?

23, believed was triggered at age 22 by a severe case of mono

What were your most common symptoms?

Severe D, abdominal cramping, weight loss, fatigue, bone pain, muscle pain and weakness, anemia, brain fog, acid reflux, etc.

What are your symptoms when you eat gluten now?

same as above

Do you consider yourself more sensitive to gluten now that you try to avoid it?

yes

Did you or your doctor come up with the celiac/gluten intolerance diagnosis?

My mom read about it in Time Magazine in July 2004. I was seeing a GI but he had never suggested it. So I have my wonderful mother to thank!

Do you have any other food allergies/intolerances?

Yes, casein, soy, eggs, rice, corn, legumes, nightshade, etc.

Does anyone else in your family have celiac/gluten intolerance?

Not formally diagnosed. In process of working on it.

Do you consider the world celiac/gluten free friendly?

No, but it has come a long way, even in the past two years since my dx.

Do you think we need better food labelling laws?

Yes. The recent 2006 law was a start...but definitely need the inclusion of gluten free definitions and dealing with cross contamination.

Does the world in your opinion need to be more educated about celiac and gluten?

Yes, with 1 in 133 Americans believed to have Celiac, and 95-97% not knowing they have it...it definitely needs help. But, the new NIH awareness campaign for doctors should help some. baby steps are happening!

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Well im a nursing student and we have to do a research paper on a topic of our choice. Since ive been doing the gluten free thing for a couple of months now i decided to do mine on celiacs. For my primary research i need some questions answered by people with condition so i devised a survey...it would help me greatly if you guys could fill it out.....

What age were you diagnosed with celiac's/gluten intolerance?

Celiac, 17

What were your most common symptoms?

Persistent DH, lethargy, vertigo

What are your symptoms when you eat gluten now?

After five years gluten-free I get (quantity of gluten is positively miniscule - we're talking wheat residue in improperly washed pot used to cook potatoes): Migraine (photo-sensitive), nausea, gas, vertigo, mood swings, runny nose, sore eyes, breathing difficulties, hot/itchy skin, abdominal bloating, chills, sensation of exhaustion but inability to fall asleep. . .oh and uncontrollable full body muscle tremors lasting approximately 40-60 minutes (general symptoms begin within 3-4 hours of gluten ingestion, muscle tremors take place approximately 30-40 minutes after general symptoms begin. . .all symptoms present regardless of knowledge of gluten ingestion). For the first few years, gluten symptoms were much milder (since diagnosis, I've never ingested more than a tablespoon or two of gluten-containing substances) - migraine, chills, hot/itchy skin, runny nose, nausea.

Do you consider yourself more sensitive to gluten now that you try to avoid it?

I wouldn't say more sensitive, but rather that the reaction is (substantially) more noticeable because it is an immune spike rather than a constant aggravation.

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis?

Allergist tested for absolutely everything else, and did gluten bloodwork "just in case". Doc was stunned by results - ate humble pie! It was great!

Do you have any other food allergies/intolerances?

um.. . see below

If yes what?

Technically no, but have similar-to-celiac reaction (but without muscular tremors) to soy, and corn

Does anyone else in your family have celiacs/gluten intolerance?

No one else is willing to be tested. Possible candidates include maternal grandfather, paternal grandmother.

Do you consider the world celiac/gluten free friendly?

Explain.

I prefer celiac to gluten free - but I am very picky: I am not "a celiac", I have "celiac disease". I prefer to phrase it like this because "I am a celiac" - along with "I am gluten-free"- implies that this is a choice, similar to "I am a vegetarian", whereas naming it as a disease tends to make people realise the seriousness. My family labels foods I can eat as "Ali-Friendly" rather than gluten-free - we wanted to focus on the inclusivity of my dietary choices, rather than what we were excluding.

Do you think we need better food labelling laws?

Explain.

YES! I currently live in Britain, where food labelling practice dictates the use of the gluten free symbol (though not always as consistently applied as I might like) and manufacturers also need to state "contains gluten" on common or unexpected products. This cuts my grocery shopping time in half, because I can discard half the products with a quick glance.

Does the world in your opinion need to be more educated about celiacs and gluten?

Yes. I dream of the day where I can say "I have celiac disease" to the woman in the supermarket who asked about my horrible-looking skin disease and NOT have her look blank and/or say "What's that?" I would love to be able to go out to dinner and say "I have celiac disease" and not have to explain everything they need to leave out of my dinner. I'd love to be able to go to the dentist (I know this sounds weird - keep reading) and not have to grab wrists to stop them putting stuff in my mouth because they've not checked the notes (or no one's made notes). Heck, I'd settle for being able to go to my doctor and say "I have celiac disease" and not have to lug my trusty Manual of Prescription Pharmaceuticals to her office every time I have the sniffles. . . In a perfect world, I'd even be able to go to a new doctor and say "I have celiac disease" and have the doc say "Hm. Interesting." and move on, instead of nipping out of the room to drag in every other doctor in the building to ooh and ahh over my medical history before asking, very nicely, if I'd mind doing a q&a with his med students.

Hope this helps. . .feel free to contact me if you need more (as you may have guessed, I'm used to this!)

thanx in advance for your time...

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Thank you so much for this stuff guys its awesome.....and i will try to call it celiac disease....i know that thats how you are suppose to spell it but its just such a hard habit to break....lol..it seems like it should have and s at the end....

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What age were you diagnosed with celiac's/gluten intolerance?

I was diagnosed at 48

What were your most common symptoms?

Diahrea, and cramps. Was beginning to suffer from reflux.

What are your symptoms when you eat gluten now?

Within two hours my stomach will start to ache a bit. I will get irritable and cranky. All I would want to do would be lie down. I wouldn't be able to even enjoy a good read. The next day I will be fuzzy, and bloated, within 24 hours the D would be back again for a couple of days.

Do you consider yourself more sensitive to gluten now that you try to avoid it?

Yes I do consder myself more sensitive. Before I think it was just part of life that I had accepted and did not really notice the symptoms. But notice them now, I do!

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis?

I came up with the suggestion that it could be gluten intolerance, he came back with it is coeliac.

Do you have any other food allergies/intolerances?

I think peanuts give me a problem, but I don't test that theory too often. Life is too busy to wish gastric upsets too often.

If yes what?

Peanuts

Does anyone else in your family have celiacs/gluten intolerance?

Nobody else in the household. But then my brothers and sisters and mother have never been tested.

Do you consider the world celiac/gluten free friendly? (I actually misread world for word, so my answer won't make much sense. But, I don't consider the world coeliac friendly)

Explain.

Yes I do think it is friendly. Only because I used to be C Lee without the ac at the end.

Honestly I haven't thought about it. The only reason I would consider it not friendly is because not too many people know what it is. In NZ we add an o in the middle, and then anybody who has nothing to do with coeliac, pronouncel it coal-lee-ac. To start with I thought they were two different diseases. I admit your way of spelling coeliac (celiac) is friendlier than ours, but because I am a kiwi I feel I need to be loyal to our spelling.

As for gluten free, it is too closely related to the word glutton!

Do you think we need better food labelling laws?

Explain.

I don't think we need better food labelling laws, as all manufacturers in NZ need to state whether a food has gluten, peanuts, dairy, soy and nuts in it. But the problem I think is with the manufacturers who do not follow the law. It might be better if the manufacturer had a tick box, and to tick whether the item has these known food problems in it.

Does the world in your opinion need to be more educated about celiacs and gluten?

Yes, it most definately needs to be more educated. Since there is such a high incidence of the disease world wide, I think there should be more screening in the general population. Usually by the time we get to the doctor suspecting we have a problem with gluten, we have usually eliminated the offending products from our diets, and of course our results come back negative.

Catherine

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What age were you diagnosed with celiac's/gluten intolerance?

-23 (I'm now 24).

What were your most common symptoms?

-Fatigue, joint/muscle/bone pain, brain fog, depression, upset stomach

What are your symptoms when you eat gluten now?

-Same as before

Do you consider yourself more sensitive to gluten now that you try to avoid it?

-No, my symptoms seem to be better now. My joints may hurt and I may be slightly brain fogged, but I can still function and go to work, etc.

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis?

-I came up with the dx.

Do you have any other food allergies/intolerances?

-Yes, peanut intolerance. Figured that out about eight months after going gluten-free.

Does anyone else in your family have celiacs/gluten intolerance?

-Yes, my mum. Dx after I was. I suspect her mother had it, too.

Do you consider the world celiac/gluten free friendly?

-Not particularily, but you get used to it. I would love to be able to buy all my food in a mainstreet store. And I would love for foods that are naturally gluten-free to not have gluten randomly added to them. Like corn flakes - why the heck does malt have to be added? I think foods not having as many additives would benefit a lot of people, not just celiacs. I think people would be healthier in general.

Do you think we need better food labelling laws?

Yes (and this goes along with the last question) - I would love for companies to label what their artifical flavors and food starches are made from. It wouldn't be *too* difficult, but it would make a world of difference to someone who reads every label. I'd love to be able to read the label and just KNOW if it's gluten-free rather than having to call the company to confirm... We now have the eight major allergens labeling, but I think celiac is common enough that they should add gluten to the list.

Does the world in your opinion need to be more educated about celiacs and gluten?

-Yes, it's so underdiagnosed that if people are aware of it, it might spare a lot of people suffering. A friend of mine mentioned to me years ago that she had it. I forgot about it until I realized I had problems eating wheat. I never would have thought of celiac if I hadn't been made aware of it years ago.

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What age were you diagnosed with celiac's/gluten intolerance? 43

What were your most common symptoms? Migraines, Going between Constipation & Diarreah nausea, dizziness, weight loss, brain fog, fatigue, fever, flu-like symptoms, joint & bone pain, abdominal swelling accompanied by strong pains at times strong pains.

What are your symptoms when you eat gluten now?Diarreah, nausea, brain fog, fatigue, abdominal swelling with strong pains. It takes me awhile to recover to. I feel this is because my immune system has been weakened by years of misdiagnosis.

Do you consider yourself more sensitive to gluten now that you try to avoid it? No, I am just more aware of what symptoms it ingesting gluten causes, because they cleared up when I went gluten free.

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis? I was told I had Chronic Fatigue Syndrome, IBS, acid reflux and fibro. Each time I went a new diagnosis would be added with more medications to take. Finally I went to an allergist and his dietician said she felt she knew what was wrong with me and told me I had Celiac Sprue and to eat gluten free and I would feel better. It changed my life! I had been to a GI specialist and my biopsy was negative. I could not go back to eating gluten to be retest through blood work or another biopsy. It just makes me too ill. I just count my blessings that this seasoned dietician (in her 70's and still working!) saved my life.

Do you have any other food allergies/intolerances? Yes

If yes what? latex, dust, molds, tree mix as for the foods - it was hard to get an accurate skin test because of the rash I had on my arms from the undiagnosed Celiac Disease at the time. I need to go back again. I have a hard time digesting dairy and now have been diagnosed with diverticulitus.

Does anyone else in your family have celiacs/gluten intolerance? Yes, my son. His blood test was negative but his biopsy was positive and showed damaged villa. I suspect my daughter, as she never grew. She is an adult and is 4'9" and her sinuses never fully developed. She has had a negative blood test but has not been for the biopsy. My grandmother could not even handle flour in her hands. She had to wear gloves when she did baking and extremely swollen abdomen. My other grandmother also had many of the celiac symptoms. I suspect my brother's daughter as she has many of the symptoms too.

Do you consider the world celiac/gluten free friendly? It is making progress.

Explain. When I was first diagnosed people hadn't really heard of it. Today they are coming to me saying, I read an article about what you had. There are a lot of good foods available today. Restaurants need to get with the program though. It is very difficult to go out to eat. When it makes you as sick as it does a lot of we Celiacs, it just isn't worth the chance.

Do you think we need better food labelling laws? We have made gains, but more are needed.

Explain. Some companies are great about sharing what products are gluten free and others just want to read you a form letter when you inquire. Some don't even want to deal with the question and have been down right rude. For us, it isn't a choice -- we need to know to be safe. I think a package should specifically say GLUTEN FREE on it if it is. That way there would be no question. It is so time consuming to read every label. I think the top 8 allergens is a good beginning but there needs to be more to keep others safe too.

Does the world in your opinion need to be more educated about celiacs and gluten? More education on this topic is needed. The more awareness there is, the safer we will be. We want to be able to live life as normally as possible and awareness will help. They need to know that it isn't a voluntary life style we have chosen. It is necessary for us to live safe, productive lives.

Hope this helps you with your project.

Jpmat

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