General Questions

[xphile1121]

I'm a student in CO, and I'm writing my research paper on celiac disease. Right before the semester started, I started getting sick after almost every meal. I still haven't been diagnosed (I want to wait until August between classes), but with all my research, I'm about 95% sure that I have celiac disease. I was just wondering if someone could answer a few really basic questions that I could use in my paper.

1. How long did it take for you to realize you had the disease? How were you diagnosed?

2. Has living with the disease affected your family much?

3. Is it difficult to cope when you accidentally ingest gluten? Are the symptoms worse after being off gluten for a long while?

4. Are you able to enjoy many of the same restaurants, just different menu choices?

5. Is there anything positive that has resulted from having the disease?

I would appreciate any help I can get.

[Lisa]

Many of your questions can be answered by doing a search here. All have been discussed at length once or twice . This is a great resource, with boundless information.

[xphile1121]

Sorry, I should have specified that I need 1 person's answers to all the questions. It's supposed to be kind of like an interview format. I tried to interview local doctors and have had no luck, plus I tried to get ahold of Elisabeth Hasselbeck via her gluten-free website, and I just got a generic response saying that her schedule didn't allow her time to answer. Any help would be appreciated.

[ravenwoodglass]

You may want to check and see if there is a celiac support group in your area. If there is you could go to a meeting and interview folks directly.

1. How long did it take for you to realize you had the disease? How were you diagnosed?

45 years I was finally diagnosed with the aid of an allergist and an elimination diet.

2. Has living with the disease affected your family much?

Yes. My children were watching me die slowly which was very difficult for them. It also was a contributor to the destruction of my marital relationship.

3. Is it difficult to cope when you accidentally ingest gluten? Are the symptoms worse after being off gluten for a long while?

Yes and yes.

4. Are you able to enjoy many of the same restaurants, just different menu choices?

Other diagnosed family members have had an easier time with this than I have. I have not been to a restaurant in years.

5. Is there anything positive that has resulted from having the disease?

Yes, I no longer live in pain and have seen many associated disorders go into remission.

[OptimisticMom42]

Hi, I know you only needed one interview but I wanted make sure that you understand that the hard work that has been done by people like Ravenwoodglass has made life so much easier for those of us who came latter.

1. How long did it take for you to realize you had the disease? How were you diagnosed?

Within weeks of seeking a Dr's advise. A co-worker and fellow celiac recognised it first and the immunologist agreed after the use of an elimination diet and repeated DH rash on elbows and knees when exposed to gluten.

2. Has living with the disease affected your family much?

They know a lot more about nutrition and miss some of thier old favorites that I haven't replaced yet.

3. Is it difficult to cope when you accidentally ingest gluten? Are the symptoms worse after being off gluten for a long while?

It's uncomfortable but it's less scary now that I know what is happening and how to respond. I've only been gluten free for about four months but my responces to gluten are refining. I can tell now when I get a small amount before I make myself really ill.

4. Are you able to enjoy many of the same restaurants, just different menu choices?

For now I'm staying clear of restaurants because I am still identifying intolerances like corn.

5. Is there anything positive that has resulted from having the disease?

Yes, I found a new hobby. I'm fascinated by the mind, body, nutrition connection. I love looking all this stuff up and finding little gems of information like that taking vitamin D can help my sensitive nose tolerate perfume and that gluten can cross the brain blood barrier causing anything from funny smells to epilesy and mental illness. Each person who researches and discusses this with another person who researches and ......... it's a positive thing, we are saving lives.

I would appreciate any help I can get.

You're Welcome

[LBethanyC]

[EDIT: Just realized you only needed one. Oh well. Maybe it'll still do some good . Haha.]

1. How long did it take for you to realize you had the disease? How were you diagnosed?

I self-diagnosed myself long before I did the tests. Everything fit, and not eating gluten made me feel a hundred times better. Eating even a little would make me sick again. I was diagnosed by both my general doctor and a gastro who he brought in on my case. My blood tests came back negative twice, since I had cut gluten out for months before. We tried the old eat gluten, then not eat it, then eat it, then not eat it thing, and it convinced both doctors that I had Celiac. Then they diagnosed me.

2. Has living with the disease affected your family much?

Well, when I lived with my family, it did. It was very hard to get across to them that I couldn't have this, or I couldn't use that. My little sister even used to wave the food in my face and tease. However, none of them went gluten-free. My dad convinced himself he would for a few hours, after having a long discussion with me about what foods contain gluten, and how I felt after each reaction. He gets stomach problems too. But he went home that night and ate Bologna. Haha. Anyway, now I live on my own, and cook for myself, so they're free to do whatever they want. When I go to visit, which is rare, since they live 5 hours away (they usually visit me), I bring my own food and appliances, and cook my own meals in a dedicated area.

3. Is it difficult to cope when you accidentally ingest gluten? Are the symptoms worse after being off gluten for a long while?

It is very difficult for me to cope when I ingest it. I have always had a low self-esteem, but realized after cutting out gluten that it was all related to that, since I was constantly bloated. Whenever I ingest some, and bloat, I feel horrible about myself again. But once the reaction is over, I feel better again. For me, my symptoms became signicifantly worse after being off gluten for a while. Now even the tiniest crumb gives me a huge reaction.

4. Are you able to enjoy many of the same restaurants, just different menu choices?

I make a point not to eat out right now, as I am still healing. I would rather wait until I'm feeling better to test out restaurants, for fear of cross-contamination. But, of course, that is my own personal choice. It may never affect me, I just don't want to take the risk. Once I feel better, however, I will start trying to eat out at certain places, trying their gluten-free options.

5. Is there anything positive that has resulted from having the disease?

I lost all of my bloat weight, and started to feel a heck of a lot better when I cut out gluten . I don't eat any junk food anymore, or anything unhealthy really, so I have been eating very healthy, and that is undoubtedly great for my body. .

Hope I helped! .

[LDJofDenver]

Hello xphile! First wanted to give you this link to the Denver Celiac Chapter (CSA chapter 17). Open Original Shared Link Aside from great info, past newsletters, etc., you may find an upcoming meeting where you could meet dozens of celiacs one-to-one.

1. How long did it take for you to realize you had the disease? How were you diagnosed?

Probably had it my whole life, but REALLY knew something was worse (terrible downhill slide, medical problems) past 5-6 years. Was diagnosed last year after 10 years of ASKING my doctor to test me because my adult son had been diagnosed with it. I changed doctors last year (out of immense frustration) and after new doc ruled out a bunch of other things he had in mind, he ordered blood tests for celiac disease. They came back positive.

2. Has living with the disease affected your family much?

Not really, it's just my husband and I and he's very careful. We have his and hers cutting boards, etc. But I catch him monitoring guests when we're preparing food/drinks, "no, you can't use that spoon in hers" etc. He's not a big bread eater, so that helps.

3. Is it difficult to cope when you accidentally ingest gluten? Are the symptoms worse after being off gluten for a long while?

To part A, yes at times. Feel nauseous, get stabbing belly/abdominal pains, and usually have to go to the bathroom several times. part B, oh my God yes! A&B: The glutening doesn't end that day, usually get all belly-swollen like I've gained 10 lbs overnight - that stays with me another week, sometimes two.

4. Are you able to enjoy many of the same restaurants, just different menu choices?

Yes, some. Found safe choices at my favorite Mexican restaurant Went early on an off-night, and so I could ask about food preparation and ingredients and together we came up with a few things. Same at a little Italian place we go to. And have since found quite a few that actually publish their own gluten free menu.

5. Is there anything positive that has resulted from having the disease?

Absolutely. My health is beginning to return. I sleep like I'm sleeping and not like I'm in a near-death coma My skin is WAY healthier, and healthier looking. And most of all, now I know what I've got and I can do something about it.

[hannahp57]

Hello i thought i might give another experience. for reference purposes i'll tell you about me first. i am a caucasian famale. i am 5'8" and weigh about 125.

now my celiac background:

1. I suffered symptoms throughout middle school and my first two years of high school. My symptoms got much worse at the end of my sophomore year. I went from 135 pounds to just over 100. My doctor told me it was acid reflux. the prescribed nexium did nothing. then my doctor went to a conference and heard about celiac disease. He came back with an info packet and told me this was my diagnosis. he then let me go about my business for a month then had me come back in. my symptoms had lessened slightly and i had gained five pounds back

2. It has affected my family some. we now spend quite a bit more on groceries and we have to be much more careful in the kitchen. as far as our daily lives though, i notice more differences than my husband does

3. It is very hard to cope when i acciedentally ingest gluten. first off the pain is overwhelming. secondly bacuse i blame myself as i am the one who is responsible for making sure foods are safe. i have definitely become more sensitive over the last three years ( i was diagnosed at 16 in july, i am now nienteen and this past month was 3rd anni! )

4. I have enjoyed a couple of restaurants. however, i have been glutened by restaurants twice, despite the menu option being listed as a safe choice for Celiacs and a discussion about my allergies to my server

5. There is a lot of positive from this diagnosis for me. i had never felt good before and just thought that was normal. too much info maybe but i had never experienced my digestive system functioning normally before this diet. now i also eat healthier and am more aware of what goes in my mouth. i also discovered i am allergic to MSG and it gives me quite a few problems.

Well maybe that was unnecessary but now you can maybe have a couple of comparisons. you can show how some are self-diagonosed, some diagnosed through tests, and some (like me) have doctors that hand them a piece of paper and send them on their way good luck!

[shendler]

1. How long did it take for you to realize you had the disease? How were you diagnosed? For at least 5 years I remember getting sick after every meal but within the past year it has gotten a lot worse. My test results were not conclusive in either direction and my doctor suggested going on a gluten free diet to see if it gets better.

2. Has living with the disease affected your family much? Nope.

3. Is it difficult to cope when you accidentally ingest gluten? Are the symptoms worse after being off gluten for a long while? It sucks to accidentally ingest gluten and for sure the symptoms get worse with time.

4. Are you able to enjoy many of the same restaurants, just different menu choices? No. I hate eating out now and would much rather prepare my own food. Besides having celiac I'm allergic to milk, eggs, certain fishes, certain meats so it makes eating out very challenging.

5. Is there anything positive that has resulted from having the disease? Feeling better and knowing I'm not insane.

[belaugh86]

I'm a student in CO, and I'm writing my research paper on celiac disease. Right before the semester started, I started getting sick after almost every meal. I still haven't been diagnosed (I want to wait until August between classes), but with all my research, I'm about 95% sure that I have celiac disease. I was just wondering if someone could answer a few really basic questions that I could use in my paper.

Hello,

I'd be happy to answer your questions!

1. How long did it take for you to realize you had the disease? How were you diagnosed?

-I have had neurological symptoms since childhood such as moodiness, depression, brain fog, heightened emotions, trouble concentrating, cystic infection, cystic acne, and digestion problems. I have been tested once for Celiac and it came back negative. Doctors never recommended it - I had to ask for the test. I have self-diagnosed based on my symptoms along with a food journal of reactions to certain foods. I am convinced I am wheat and dairy intolerant as well as intolerant to many other grains, additives, etc.

2. Has living with the disease affected your family much?

-My Mother has celiac also, and has also never been tested "positive" for it. She knows because she retains a large amount of water and has horrible stomach pain/gastrointestinal side effects when she ingests a little gluten.

My family who is not gluten intolerant (brother and sisters) are supportive, but most of the time people don't understand the importance/significance of the disease unless they have it themselves. It takes a lot of explaining and educating, showing lists of exactly what foods we can't eat, etc. I remember being really upset for my last birthday because one of my family members bought me a torte that had gluten in it and didn't think to check for it. My boyfriend had no idea about the disease before he met me, and he has been supportive in making sure gluten containing foods stay out of the house when possible.

3. Is it difficult to cope when you accidentally ingest gluten? Are the symptoms worse after being off gluten for a long while?

-If I am doing really well and haven't come in contact with gluten, I can tell instantly if I've accidentally ingested some. The other day I ate some thai food that had gluten and I was foggy, irritable and extremely fatigued the following day. I recover pretty quickly though, as long as I abstain from eating at restaurants (I never know what's really coming in contact with my food) and cook meals at home for the days following the incident. I have also tried to enjoy beer, thinking that the alcohol and fermentation may have destroyed the gluten protein, but to no avail. I always have some type of reaction if I drink beer/liquor.

4. Are you able to enjoy many of the same restaurants, just different menu choices?

-Honestly, no. This may just be my problem, but I have tried to adapt and order meat and veggies or salads but a lot of times I know my food has come in contact with sauces or even frying pans and utensils that have been contaminated with gluten. I can tell by the way I feel after eating the meal within a few minutes to hours and especially the next day. I think the worst was when I woke up and couldn't hear out of my left ear!

5. Is there anything positive that has resulted from having the disease?

-Yes - I have lost a considerable amount of weight and gained much more insight about nutrition. For me personally, I have done a lot of research not just regarding gluten, but also foods that cause inflammation and other health problems. I went from a weight loss "plateau" of 165 pounds down to 150 pounds when I decided to go gluten free within just a couple of months. I think it was simply based on the fact that I not only strive to eat healthy, but also because Celiac disease pretty much nixes fast food for the rest of your life. Hardly anything at fast food chains is safe, and that was where I was eating at least a few times a week before my self diagnosis.

Hope this helps and I love answering the questions.