Celiac Dinner Discussion

[labrisbin]

Good Morning Everyone,

My husband and I are going to be having dinner with relatively new friends. I have been aware of my celiac status for just under six months and it has taken me this long to really come to terms/accept/be okay with my diagnosis (it's an ongoing process). For instance, I think some people are put off by the word "disease" in "celiac disease". I believe I was as well and so for five of the past six months referred to myself mostly as being gluten intolerant. However, I have celiac disease and I do not want to be uncomfortable or afraid (or viewed that way by others) to use the words. I have two children that I need to set the best example for (each of whom has inherited one of my two DQ2 genes) and I don't want to downplay its importance or make too much of it. Additionally, I have noticed some family members prefer to say "gluten intolerant" or even "wheat allergy" instead of "celiac". If I am more comfortable, everyone else will follow suit (I hope). Since I haven't really discussed my diagnosis with anyone outside of family, close friends or medical personnel, I don't feel well equipped yet to have a casual conversation about it. I am asking for your help.

Thanks so very much!

[sb2178]

I don't have a terribly clear diagnosis, so it's nice that you do. That makes it a little easier-- I'm in the position of having to say that the doctors weren't sure, but that this is the disease that I had symptoms of and some bloodwork that may indicate early development. I think the important things to emphasize are:

1) it's completely treatable to the point of being entirely normal by a very very careful diet

2) Repeat: very very careful diet

3) You can eat (probably) all vegetables, fruits, meat, etc that don't have wheat/barley/rye and some grains.

4) The simple explanation is that your body's immune system reacts to gluten by attacking your intestines the same way it would a virus or cold. Then, your intestines aren't able to absorb food and nutrients so you get sick. BUT, back to point #1. (Technically, that's oversimplified but it's one sentence that most people with high school biology can understand.)

5. Agree that it's a weird disease but that you are very happy it can be controlled easily through the very very careful diet. You're still finding your way around it, so sometimes life can be challenging.

6. Yes, it's both more common that it used to be and doctors are doing a better job of diagnosing it. No, it's a real disease. But hey! it's easily treated without medication.

7. If you were to eat gluten, you would make yourself very sick. (symptoms if they are medical folk or that persistent and you need to gross them out). And you would also make yourself malnourished, increase your risk of cancer, etc.

Long-timers probably have more input! I haven't been talking about it very long.

[Skylark]

Hi, and welcome to the gluten-free diet club.

As I think about it, I don't say "celiac disease" but just "celiac". I don't think of myself as having a "disease". I had a "disease" before I figured out I couldn't eat gluten! Now I'm healthy. By the way, I'm not formally diagnosed but it's much easier to say "celiac" in social situations and leave it at that.

You can't worry so much about what other people think that you're afraid to arrange for safe food. I always do what's necessary with as little fuss as possible. With newer friends, I mention I'm celiac when it comes time to choose a restaurant and suggest places with a gluten-free menu. Then I change the subject. Sometimes I get questions out of genuine curiosity. I tend to emphasize that my health problems went away when I figured out the gluten sensitivity. I get some sympathy about the diet, but I'm so comfortable with it I can genuinely answer how wonderful it is to be able to feel completely well by only changing what I eat.

I do not go into the medical stuff like sb2178 does. If pressed, I say eating even a trace of gluten will give me symptoms like food poisoning for the next day or two. That's enough for most folks to want to change the subject. I did have one good friend asking a ton of questions recently. It was a little odd, until she admitted she thought she was gluten intolerant too.

As far as I know, they do not view me as sick or disabled in any way. Some of my friends are even very creative about finding gluten-free foods to share with me!

[sb2178]

Yeah, I have techie friends who are into details and mechanisms. 1-3 probably would do it for most people. Like the food poisoning analogy! "Intestinal distress" is also a fun phrase to throw out there if someone applies unwanted pressure.

[kareng]

I found that sometimes it's easier to say it's an allergy. For people I don't need to or want to go into detail about. For example, at Wendys. Even the ones that don't speak much English understand bread allergy. Otherwise, I just say I have Celiac Disease. I have to eat gluten free which you may have heard of. Seems most people have seen that on the Chex, salsa, or cold cut package. Sometimes I say that even a tiny crumb can cause damage to my small intestines. That is usually enough. My teen boys wanted more detailed biological info but that's how they are. Also, one liked a girl that has celiac disease.

[AmandaD]

Hi New Member -

I'm curious - did you have to have the biopsy (such a pain!) ?

Good Morning Everyone,

My husband and I are going to be having dinner with relatively new friends. I have been aware of my celiac status for just under six months and it has taken me this long to really come to terms/accept/be okay with my diagnosis (it's an ongoing process). For instance, I think some people are put off by the word "disease" in "celiac disease". I believe I was as well and so for five of the past six months referred to myself mostly as being gluten intolerant. However, I have celiac disease and I do not want to be uncomfortable or afraid (or viewed that way by others) to use the words. I have two children that I need to set the best example for (each of whom has inherited one of my two DQ2 genes) and I don't want to downplay its importance or make too much of it. Additionally, I have noticed some family members prefer to say "gluten intolerant" or even "wheat allergy" instead of "celiac". If I am more comfortable, everyone else will follow suit (I hope). Since I haven't really discussed my diagnosis with anyone outside of family, close friends or medical personnel, I don't feel well equipped yet to have a casual conversation about it. I am asking for your help.

Thanks so very much!

[conniebky]

I tell people I will simply go right out of my mind if I eat gluten. Then I give them a really scary look

But seriously, everyone around me is so thankful that I DON'T have celiac disease....but I still can't eat gluten, so... ever wonder if people really care or are just making conversation, or just don't know what else to say except to ask questions?

Tell them they can't catch it from you. Maybe that will help.

[T.H.]

Depending on the situation, I tend to say something different.

If it's a one time thing where I'll never see the person again, I'll just say allergy, but one where I get very ill at the slightest bit of gluten. Restaurants, etc.... tend to understand that sort of 'danger' as something familiar. Easy to share and drop the subject.

With friends and family, I try to find a way to discuss it easily, in a way that connects to something they know. My tone of voice is usually the same one I'd use to discuss a bad hair day, or my annoyance with how I freckle and don't tan. It's a part of me, not something I can change, and can cause issues, but eh, so what? We all have issues.

I tend to pick raw meat and diabetes analogies, LOL.

1. I say celiac is a disease like diabetes: they both attack the body. Except diabetes destroys our ability to make insulin, celiac disease destroys our ability to digest food. But we luck out, because celiac disease is the ONLY auto-immune disease where we know what makes our bodies attack us: eating gluten. If we stop that, we don't get hurt. But if we eat gluten, it makes it so we can't digest our food and get very sick.

2. Explaining gluten contamination, we just said that to us, gluten is like raw meat that can never be cooked. So anything that has been touched by gluten, we treat like something that has been touched by raw meat. Wash thoroughly everything that has touched it, and everything that unwashed gluteny hands have touched, just like if someone grabbed raw chicken and started touching things around the kitchen. We'd have a washing frenzy.

That works for us, usually, and we get on with things. :-)

Good Morning Everyone,

My husband and I are going to be having dinner with relatively new friends. I have been aware of my celiac status for just under six months and it has taken me this long to really come to terms/accept/be okay with my diagnosis (it's an ongoing process). For instance, I think some people are put off by the word "disease" in "celiac disease". I believe I was as well and so for five of the past six months referred to myself mostly as being gluten intolerant. However, I have celiac disease and I do not want to be uncomfortable or afraid (or viewed that way by others) to use the words. I have two children that I need to set the best example for (each of whom has inherited one of my two DQ2 genes) and I don't want to downplay its importance or make too much of it. Additionally, I have noticed some family members prefer to say "gluten intolerant" or even "wheat allergy" instead of "celiac". If I am more comfortable, everyone else will follow suit (I hope). Since I haven't really discussed my diagnosis with anyone outside of family, close friends or medical personnel, I don't feel well equipped yet to have a casual conversation about it. I am asking for your help.

Thanks so very much!

[labrisbin]

Thank you everyone for all your comments! It has really helped me to hear it explained by other people in other ways AND to know that there are so many more of us out there. I think I've been feeling slightly alone. I definitely feel better equipped to discuss my diet and the reasons for it with others. I see it also helps to have a sense of humor

[tarnalberry]

I keep it fairly simple. I say I'm gluten intolerant (I don't have a formal diagnosis, but even my dr. said I should stay gluten free since I feel better that way). So, it'll go something like this:

"I'm gluten intolerant, so I can't have wheat, barley, rye, or oats. It's simply WAY easier and safer for me if I just bring my own food, so PLEASE do not worry about food for me." I've had a couple people still try to push the issue when I wasn't comfortable eating in their kitchen, and I simply say "I really don't want to take the risk of getting sick; I will bring my own food." (I did have one person be fairly insistent that if I was going to do that, I bring something to match what they were having. I thought it was fairly presumptuous, but wasn't willing to fight that one and made a gluten-free lasagna and brought my own plate of it. ) For a handful of friends whom we eat with fairly often, and whom I know I can (once they know the full deal) trust to cook for me, I've had the lengthy discussions (and the last minute "oh, is that a wooden spoon in the pot for dinner? uh, I think I'll pass tonight, and I'm sorry I forgot to mention the random items that can contaminate the food") and there are a handful of places I'm comfortable eating. (Yes, you can have a friend remember not to stick their hand in the blueberry bowl while eating crackers and asking you if you're going to have any more before they go back in for some seconds!)

[labrisbin]

Hi New Member -

I'm curious - did you have to have the biopsy (such a pain!) ?

No. It's a long story (of course) but I am very fortunate in that my primary care recognized my latest DH outbreak for what it was (last December) and began putting the whole story together. She is a very smart, brilliant woman who really takes her time and offers fantastic care to her patients. She strongly advised me to go gluten free immediately. As I knew nothing about gluten intolerance at this time, I didn't do as she suggested and things began getting worse VERY quickly. I became slightly alarmed and saw two GI doctors for their opinions. One was certain it was IBS and ordered testing for that and celiac disease. The IBS tests were negative. The other GI, the doctor I see currently, examined me and ordered additional bloodwork. He reviewed the test results, including genetic (I'm DQ2 homozygous) and kindly suggested the biopsy. I declined because I did not want an invasive procedure and my primary care agreed. This GI has a family member with celiac disease and heads the GI department of one of the hospitals he is affiliated with. He takes a special interest in Celiac Disease (his very words at our first meeting) and has spoken at our support group meetings. He used the blood tests, genetic testing, the DH and the amazing reaction of my body to a gluten free diet to make his diagnosis. He would however, like to do an endoscopy in a year to be certain of healing.

[rdunbar]

I don't like the word disease to describe celiac, I think it's inappropriate

for example if hypothetically I had been fortunate enough to never had injested gluten my entire life would I have a disease? No , I would be fit as a fiddle

of course, it was in my baby formula and I've been sick ever since, but my point is that it doesn't mean there is something wrong with us, that we are diseased.

I've had almost a sense of shame about my condition, having severe DH and mood disorders and a litany of other symtoms, so I'm trying to adjust my attitude regarding this word, disease

I beginning to see that there is nothing wrong with me, it's not my fault, it's just other people seem to be immune to gluten, not that I'm " sensitive" to it

gluten is really poisin across the board IMO, and if someone doesn't seem to have problems with it, it's because something hasn't come along to trigger a reaction yet

gluten is the disease, not celiac or whatever you want to call it

from what I understand gluten causes inflammation and gut irritation in everyone to some degree

I really believe that anyone who eats it is being harmed whether they are celiac or not

actually I'm beginning to feel lucky that I've suffered so much compared to other people because it's put me on the right track and I'm looking forward to having the happy productive rewarding life I had really given up on having before I learned how gluten was effecting me

[labrisbin]

I don't like the word disease to describe celiac, I think it's inappropriate

for example if hypothetically I had been fortunate enough to never had injested gluten my entire life would I have a disease? No , I would be fit as a fiddle

of course, it was in my baby formula and I've been sick ever since, but my point is that it doesn't mean there is something wrong with us, that we are diseased.

I've had almost a sense of shame about my condition, having severe DH and mood disorders and a litany of other symtoms, so I'm trying to adjust my attitude regarding this word, disease

I beginning to see that there is nothing wrong with me, it's not my fault, it's just other people seem to be immune to gluten, not that I'm " sensitive" to it

gluten is really poisin across the board IMO, and if someone doesn't seem to have problems with it, it's because something hasn't come along to trigger a reaction yet

gluten is the disease, not celiac or whatever you want to call it

from what I understand gluten causes inflammation and gut irritation in everyone to some degree

I really believe that anyone who eats it is being harmed whether they are celiac or not

actually I'm beginning to feel lucky that I've suffered so much compared to other people because it's put me on the right track and I'm looking forward to having the happy productive rewarding life I had really given up on having before I learned how gluten was effecting me

I agree! Here's an interesting article by a doctor regarding how he thinks this all happened:

Open Original Shared Link

[Almendra]

I agree with T.H. The thing that seems to help others take me seriously is the same thing that freaked me out as I was in the process of being diagnosed: the fact that gluten (even small amounts) triggers my body's immune system to fight MY OWN BODY!

Gluten intolerance and gluten allergy seem to carry a casual air of

"avoidance" for many people. Many of us are allergic to trees and grasses - but we can still enjoy a picnic in the park. We may even hug a tree for fun.

The connotations of "allergy" and "intolerance" for many people are not sufficient for them to take us seriously. There are those who have a gluten allergy (a family friend) who simply may not have more than a few ounces of wheat a day. Celiacs DO NOT want to be confused with people who have this kind of condition!

[butterfl8]

Just my thoughts--even though the word disease has some negative connotations for some, I think it helps people realize how serious it is if we were to get even a hint of wheat, barley, or rye in our food. I'm not shy about saying, "I have Celiac Disease" for that reason alone. I want my waitstaff to know that it is very serious that they handle my food carefully. Serious for my health, at the very least!! Then it's serious for the condition of their property if I don't get out of there quickly.

-Daisy