Pitfalls Of Self-diagnosis

[quantumsugar]

I self-diagnosed, and I've seen a few problems with it. Some of them have been resolved, but I am trying to get a diagnosis now (based on past history and gene testing). In my personal opinion... if you can get into a doctor in the next few days--you might save yourself some problems later. You may want the diagnosis later and not be able to get one. It totally depends on which decision you will feel most comfortable with. A lot of people have no problems at all without a formal diagnosis or even prefer it; I'm not one of them. These are some of the issues I've had:

1. People were less willing to believe me or take the disease as seriously as I need them to.

2. Even though I had symptoms that were severe, and lessened immediately on the diet, I still never was ENTIRELY sure. There were times when this type of doubt would really bother me.

3. In college (as in other places), asking for special accomodations is often nearly impossible without a formal doctor's diagnosis.

4. For example, when trying to get additional loan money because my food expenses increased and I was too weak to work... I couldn't without that formal diagnosis.

5. If my doctor had seen bloodwork/a biopsy that indicated celiac disease, it would be less work to get tested for associated problems; my doctor would take my knowledge that I had celiac disease more seriously (because he would have been the one to tell me.

It sucks to stay on for a few more days (and I wouldn't advise doing it for much longer than that)... but it could be really helpful. Good luck deciding.

[prinsessa]

I agree it is a choice, but it is a choice to live a healthy live (and for some a choice between life and death). My DD's grandmother has diabetes, but still chooses to eat unhealthy food and not exercise. And then she complains about how bad her diabetes is (between drinking 5 glasses of coke in one sitting). I agree with everything Fiddle-Faddle said. Some days I feel like I have a choice and some days I don't. I just can't believe that some people would choose to be miserable. I was not happy before going gluten free (and I'm not happy when I get glutened). Pretty much everything we do in life is a choice....a lot of the time they just don't feel like choices.

[olalisa]

Can we just say that it's possible to loook at this both ways?

It's possible to view this as a lifestyle choice. This attitude gives some people a feeling of control.

It's equally possible to look at this and say, "Hey, there's no choice here." For some people, this is such a no-brainer that there really doesn't seem to be any choice.

Personally, I have some days where I feel like I am making a choice, and some days where I feel I haven't got any choice.

Please don't try to force Geoff to feel that he has a choice. You can't force feelings. Maybe he will come to feel he has a choice, maybe not. If he doesn't feel he has a choice, then he doesn't have a choice. Period.

For those of you who feel that you have a choice, you have made very inspiring arguments--but don't beat him up with those inspiring arguments, okay?

How you see things is not necessarily the same way someone else can see them--or live them.

Fiddle-Faddle,

Thanks for articulating so well what I was thinking as I read this thread. I felt like Geoff was getting pummelled for his point of view, and was trying to figure out how to say what I thought. You summed it up perfectly--especially the part about feeling like you have a choice some days and not others.

I don't think ANY of us would choose to have this disease and to have to be concerned about every molecule that goes into our mouths. That's what I think Geoff is trying to say, if I hear him correctly. And I couldn't agree with him more.

[darlindeb25]

I'm sorry Geoff, I guess I misunderstood you. I feel celiac's is a lifestyle change for me. I had to change so much in the last 5+ years. I didn't mean to be cruel. I'm sorry!

[Fiddle-Faddle]

Deb, I'm scratching my head here. I went back and reread all of Geoff's posts, and I don't see a single one where he degrades anyone who feels that it is a lifestyle choice. If anything, I think people were degrading him.

His points were every bit as valid as yours. Could you be misunderstanding what he is saying about living in fear of buffets? As I understood it, if he were vegan, he wouldn't be afraid that eating a piece of meat by mistake at the buiffet would make him doubled over in agony for 2 weeks, whereas eating a bread crumb by mistake WOULD. Hence, the difference between lifestyle chlice and feeling of no choice.

I do think you are being unnecessarily rigid about your definition of "lifestyle choice." Geoff did say that he felt that this is a subject where you would have to agree to disagree. He tried to explain how HE feels--he never said that you were wrong.

[darlindeb25]

I was wrong, I'm sorry.

[tarnalberry]

1. People were less willing to believe me or take the disease as seriously as I need them to.

2. Even though I had symptoms that were severe, and lessened immediately on the diet, I still never was ENTIRELY sure. There were times when this type of doubt would really bother me.

I find these two particularly interesting, because a formal diagnosis should have *NO* bearing on either of them - these should come *entirely* from respect and confidence. I haven't had too much issure with people not taking it too seriously (I don't give them the option; if *I* don't know, *I* don't eat it) and while I'm not *entirely* sure due to my inconclusive results and wonky dietary testing, I don't *need* to be *entirely* sure to follow the diet when I highly suspect that it helps...

I wonder what we, as the celiac community, can do to influence these two items...

[par18]

I find these two particularly interesting, because a formal diagnosis should have *NO* bearing on either of them - these should come *entirely* from respect and confidence. I haven't had too much issure with people not taking it too seriously (I don't give them the option; if *I* don't know, *I* don't eat it) and while I'm not *entirely* sure due to my inconclusive results and wonky dietary testing, I don't *need* to be *entirely* sure to follow the diet when I highly suspect that it helps...

I wonder what we, as the celiac community, can do to influence these two items...

I could not agree more. I have not had one instance in which someone wanted to see my "positive diagnosis" before they would give me a gluten free menu or disclose what was in a meal I wanted to order. Same goes with me refusing to eat or drink something that was offered outside the home. The key is to get more people to request gluten free in their lifestyle regardless of whether or not they have a diagnosis.

Tom

[JerryK]

I could not agree more. I have not had one instance in which someone wanted to see my "positive diagnosis" before they would give me a gluten free menu or disclose what was in a meal I wanted to order. Same goes with me refusing to eat or drink something that was offered outside the home. The key is to get more people to request gluten free in their lifestyle regardless of whether or not they have a diagnosis.

Tom

I have lots of bowling buddies. (yes I'm a bowler God forbid) These guys are not all rocket scientists.

If they press me, I will explain it to them in terms they understand......"If I eat anything containing wheat, I will have the $hits for three days and feel like hell". Not many people are going to be interested in the technical explaination, but if you explain it in terms of symptoms....at least my bowling buddies seem to get it . They don't understand anything about the undigestable gliadin protein in

wheat causing multiple gastrointestinal, extraintestinal symptoms..including neurological manifestations...so you have to say it in terms they understand...

[GeoffCJ]

His points were every bit as valid as yours. Could you be misunderstanding what he is saying about living in fear of buffets? As I understood it, if he were vegan, he wouldn't be afraid that eating a piece of meat by mistake at the buiffet would make him doubled over in agony for 2 weeks, whereas eating a bread crumb by mistake WOULD. Hence, the difference between lifestyle chlice and feeling of no choice.

I do think you are being unnecessarily rigid about your definition of "lifestyle choice." Geoff did say that he felt that this is a subject where you would have to agree to disagree. He tried to explain how HE feels--he never said that you were wrong.

That's exactly it. I agree it is a choice to not be sick. I disagree that it's a lifestyle choice. I do not think that that term accurately describes the situation we're in, nor gives it the appropriate level of seriousness.

From Wikipedia -

In sociology, a lifestyle is the way a person (or a group) lives. This includes patterns of social relations, consumption, entertainment, and dress. A lifestyle typically also reflects an individual's attitudes, values or worldview.

Having a specific "lifestyle" implies a conscious or unconscious choice between one set of behaviours and some other sets of behaviours.

In business, "lifestyles" provide a means of targeting consumers as advertisers and marketers endeavor to match consumer aspirations with products.

The term "lifestyle" apparently first appeared in 1939. Alvin Toffler predicted an explosion of lifestyles ("subcults") as diversity increases in post-industrial societies. Pre-modern societies did not require a term approaching sub-culture or "lifestyle", as different ways of living were expressed as entirely different cultures, religions, ethnicities or by an oppressed minority racial group. As such the minority culture was always seen as alien or other. "Lifestyles", by comparison, are accepted or partially accepted differences within the majority culture or group. This tolerance of differentiation within a majority culture seems to be associated with modernity and capitalism.

None of that sounds like treating a disease, or choosing not to be sick.

Geoff

[TestyTommy]

I have absolutely no idea how people can think of celiac as a 'lifestyle choice'. It's a disease. If we eat gluten, we get sick and we will eventually die. I suppose there are people who have celiac and still eat gluten, but I can't imagine why. It's like slamming a door on your finger over and over again. You know it breaks your finger, but you keep doing it because it's your 'choice'? That's not making a lifestyle choice; that's being an idiot.

I agree with Geoff that we have to be careful about how we characterize this disease. If you say that you're gluten-free because of a 'lifestyle choice', then people will assume you're trying the latest fad diet. In fact, that's the response I get from most people: "Oh, you don't eat gluten? Maybe I should try that! I tried the Beverly Hills Cabbage and Coffee Diet. It did wonders for me! I lost 23 lbs!"

I have friends with lupus and MS, and they sure as heck don't call it a 'lifestyle choice'; they call it a disease. I think it's demeaning to say that I have a 'choice' of eating gluten or not eating gluten, or I have a 'choice' to be healthy or sick. I don't. And if I had a 'choice', I would certainly not 'choose' to have celiac disease!

PS: I also agree with being explicit about celiac, since so few people know what it is. I usually tell them that it's an autoimmune disease like lupus or MS, and if I eat so much as a bread crumb, my immune system will start shredding apart my intestines. That usually brings a little empathy.

[Jestgar]

I had nothing cut off or cut open to treat this. I don't need mechanical devices to treat this. I don't need a prescription to treat this. My health is dependent entirely upon me. That's why I see it as a choice. This doesn't mean that I walk into a restaurant and say "Oh, I've chosen not to eat gluten, could you please...." I tell them I can't. Just like I can't eat cyanide.

[par18]

I have absolutely no idea how people can think of celiac as a 'lifestyle choice'. It's a disease. If we eat gluten, we get sick and we will eventually die. I suppose there are people who have celiac and still eat gluten, but I can't imagine why. It's like slamming a door on your finger over and over again. You know it breaks your finger, but you keep doing it because it's your 'choice'? That's not making a lifestyle choice; that's being an idiot.

I agree with Geoff that we have to be careful about how we characterize this disease. If you say that you're gluten-free because of a 'lifestyle choice', then people will assume you're trying the latest fad diet. In fact, that's the response I get from most people: "Oh, you don't eat gluten? Maybe I should try that! I tried the Beverly Hills Cabbage and Coffee Diet. It did wonders for me! I lost 23 lbs!"

I have friends with lupus and MS, and they sure as heck don't call it a 'lifestyle choice'; they call it a disease. I think it's demeaning to say that I have a 'choice' of eating gluten or not eating gluten, or I have a 'choice' to be healthy or sick. I don't. And if I had a 'choice', I would certainly not 'choose' to have celiac disease!

PS: I also agree with being explicit about celiac, since so few people know what it is. I usually tell them that it's an autoimmune disease like lupus or MS, and if I eat so much as a bread crumb, my immune system will start shredding apart my intestines. That usually brings a little empathy.

Well would you consider Celiac a "lifestyle" change?

Tom

[TestyTommy]

Absolutely. It's a huge change in how we live. I don't understand how people can think of it as a 'choice'. I'm a celiac; I can't eat gluten. It's not that I 'choose' not to eat gluten.

(And is anyone else getting an eerie vibe from this? Change 'celiac' to 'gay' and re-read this thread. . . .)

[Jestgar]

But you don't "choose" do be gay. Nor do you "choose" to have Celiac.

But you do choose who you have sex with, and you do choose what you eat.

There have been many gay men who have chosen to have sex with a female wife in order to fit in. And there are Celiacs who choose to eat gluten in order to fit in.

And this thread is getting very abstract...

[kbabe1968]

I agree it is a choice, but it is a choice to live a healthy live (and for some a choice between life and death). My DD's grandmother has diabetes, but still chooses to eat unhealthy food and not exercise. And then she complains about how bad her diabetes is (between drinking 5 glasses of coke in one sitting). I agree with everything Fiddle-Faddle said. Some days I feel like I have a choice and some days I don't. I just can't believe that some people would choose to be miserable. I was not happy before going gluten free (and I'm not happy when I get glutened). Pretty much everything we do in life is a choice....a lot of the time they just don't feel like choices.

You'd think! My grandmother is a diabetic and is EXACTLY the same way as your DD's grandmother!

Also, when I brought up on another forum that I had celiac (or at least a wheat intollerance - I self diagnosed! LOL )....I had this one woman jump all over me and tell me not to turn into one of those freaks at a restaurant who is picky about what they eat, etc.

After further prodding, she told me she had been diagnosed but just didn't want to inconvenience anyone with her health issues so she justs "sucks it up" and that was her advice for anyone with an ailment. Suck it up.

Sorry....not me....I KNOW beyond a shadow of a doubt that consuming gluten makes me sick as a dog. That may mean never eating out the rest of my life. Oh well. It beats having razor blades running thru my intestines and peeing out my bottom b/c the D is so severe.

[henrietta]

Reading everyone's posts I tried to think how I feel.

To me eating bread is equivalent to sticking my hand in the fire, I have learned from trying it again after a few months of none that the reaction is sudden, violent and I feel ill for several days afterwards.

So it isn't a lifestyle choice more a necessary one, if I tuned up at the Drs' daily with a burned hand eventually they would section me, so to keep eating gluten is just as irresponsible.

I am still doscovering what I can and can't eat, for instance a taste of someone's sponge cake makes me visit the loo several times the next day, but if it's their Birthday cake I may take the risk!

A bread roll will make me sufficiently ill that I can't ever see me eating one in my lifetime.

No-one willingly makes themselves violently ill so I think it's a forced decision not a choice in the end...

[ianm]

There is a postive side to self diagnosis...Celiac is not mentioned in your medical records. This can make it easier to get insurance (health and life). Insurance companies tend to write waivers on anything that is mentioned in your medical file.

My doctor doesn't recommend me getting tested for just this reason. There is no way I would get tested any way because I can't afford or want to be that sick ever again. I wasted the first 36 years of my life because of gluten and I'm not about to waste one minute more.

[tarnalberry]

The semantics thing amuses me.

My opinion:

Having Celiac disease is not a choice, lifestyle or otherwise.

Being on the gluten free diet is a choice, and by the definition already posted, a lifestyle one.

Have a disease/condition/ailement is not a choice, but treating it is. It might be dumb not to treat it ('hey doc, I'm profusely bleeding from this gunshot wound, but don't even think of working on me to fix me' ), but it's still a choice.

[rez]

I couldn't agree more. A choice is something we control. You can't control that you have the disease itself, but you can choose whether or not to treat it.

[darlindeb25]

Having Celiac disease is not a choice, lifestyle or otherwise.

Being on the gluten free diet is a choice, and by the definition already posted, a lifestyle one.

Have a disease/condition/ailement is not a choice, but treating it is. It might be dumb not to treat it ('hey doc, I'm profusely bleeding from this gunshot wound, but don't even think of working on me to fix me' ), but it's still a choice.

I totally agree Tiffany. Choice is the wrong word, it is not a lifestyle choice, it's a lifestyle change, even though in making the decision to go gluten-free, I have made a lifestyle choice. We are just mincing words. I chose to go gluten-free for my health, which, with this choice, I totally changed my lifestyle making it a lifestyle choice. There are many gluten sensitive people out there who chose to ignore the information given them, just as many Type 2 diabetic's chose to ignore the info given them. My ex is a Type 2 diabetic who did not take diabetes seriously and now he is totally diabled with heart disease--yet it was his choice to not change his lifestyle and he almost died because of it.

I know of a man in Michigan whom my sister did finally convince to go gluten-free. He was doing wonderful, his health returned, he felt as though he was given back his life. He was gluten-free for probably 4 years and one day he decided to have a sandwich. He then announced to my sister that he had not gotten ill, so therefore, his celiac's must have been cured. He continued eating gluten and in just a few months, he died of a massive heart attack. Did gluten kill him? Who knows, yet we all know that when he went back on gluten, he jeopardized his health and yes, gluten can certainly be a factor in his death. He made a choice, which definitely changed his lifestyle and now his family no longer have him.

Lifestyle choice, lifestyle change, lifestyle decision--all the same thing!

I too, do not tell people I have an allergy to wheat when I am talking about gluten free, although, my skin also reacts to wheat, so I am guessing I do have an allergy also. My sister always tries to explain gluten free as an intolerance when in restuarants, yet if they look confused, she tells them that if one tiny smigeon of gluten gets on her plate, she will fall on the floor, dying a slow and painful death. A little dramatic, yes--has she been glutened--nope!

We all need to agree that we are all correct!

[hathor]

What an interesting philosophical discussion. Like many, it comes down to definitions. Here, I think it comes down to how much of an existentialist/Buddhist/whatever concept of "choice" you have.

I would disagree that vegetarianism or veganism is necessarily a lifestyle choice in the "no consequences if you don't make it" sense. There are some who have medical conditions that improve with a very low fat vegan diet and feel poorly with any deviation from it. It can be frustrating when people don't understand this and want to try to force food on you. Although it hasn't happened to me or my husband personally, I've also heard several on a low fat vegan board mention nonvegans actually slipping ingredients into what they serve. They wouldn't try that with us; we're lawyers.

[tarnalberry]

I would disagree that vegetarianism or veganism is necessarily a lifestyle choice in the "no consequences if you don't make it" sense.

But all choices have consequencies, even lifestyle choices. Change or choice... the term is similar in this context. Vegetarianism/veganism is a lifestyle choice because it is a decision amongst options that is repeated over the course of your life in many settings.

Choices aren't necessarily 'light and fluffy'. Choosing to treat or not treat brain cancer could kill you either way, but the choice is still important. Heck, even choosing the school and degree you get has very long term implications, and the choice can go many ways, but is still important. The choice of what you choose to wear lounging around the house... that's probably a 'light and fluffy' choice.

Choice is the wrong word, it is not a lifestyle choice, it's a lifestyle change, even though in making the decision to go gluten-free, I have made a lifestyle choice.

I wouldn't say that Celiac disease is a lifestyle change. If you get diagnosed with it, you *can* make no change from the day before you were diagnosed. That is possible. (That is also a choice. ) The treatment is a lifestyle change, and one has the choice to treat or not treat Celiac.

To most of us, it seems like such an obvious answer, it's hard to see the choice. It's like you're standing in the middle of the road, and there's a car heading straight for you that can't possibly stop in time to avoid hitting you. Do you jump out of the way or not? *That is a choice* but it seems like it's not because most people assume what the expected outcome should be. There's a choice in pretty much *everything* we do. (And to that choices in how we do the things we do, and so on... it's a choice world out there! hehehehehe )

[hathor]

But all choices have consequencies, even lifestyle choices.

True. I was trying to summarize the distinction drawn by GeoffCJ in post 12 and saying that some veganism would be in the same category he was putting avoiding gluten into. My attempt to describe the category was rather inartful; I was trying to summarize what he was saying in a phrase. Or what I thought he was saying, to be more precise. Perhaps I needed to include "foreseeable, adverse health" before the word consequences.

I tend to agree with you that it is a choice, even if health-inspired.

Plenty of people choose to do things that are harmful to themselves.

[par18]

But all choices have consequencies, even lifestyle choices. Change or choice... the term is similar in this context. Vegetarianism/veganism is a lifestyle choice because it is a decision amongst options that is repeated over the course of your life in many settings.

Choices aren't necessarily 'light and fluffy'. Choosing to treat or not treat brain cancer could kill you either way, but the choice is still important. Heck, even choosing the school and degree you get has very long term implications, and the choice can go many ways, but is still important. The choice of what you choose to wear lounging around the house... that's probably a 'light and fluffy' choice.

I wouldn't say that Celiac disease is a lifestyle change. If you get diagnosed with it, you *can* make no change from the day before you were diagnosed. That is possible. (That is also a choice. ) The treatment is a lifestyle change, and one has the choice to treat or not treat Celiac.

To most of us, it seems like such an obvious answer, it's hard to see the choice. It's like you're standing in the middle of the road, and there's a car heading straight for you that can't possibly stop in time to avoid hitting you. Do you jump out of the way or not? *That is a choice* but it seems like it's not because most people assume what the expected outcome should be. There's a choice in pretty much *everything* we do. (And to that choices in how we do the things we do, and so on... it's a choice world out there! hehehehehe )

I agree with choice. If someone doesn't think it applies to Celiac then go to the "Coping With" forum and read the post on "can't stop eating gluten". Sounds like a choice to me.

Tom