Pitfalls Of Self-diagnosis

[JerryK]

Ya know, I'm reading lots of information about Celiac. And I do have an appointment with my doctor scheduled....I find myself unable to eat Gluten every day, it simply makes me feel too badly. So I'm skipping a day or two between donuts or apple fritters.

They say that one of the pitfalls of self-diagnosis is that after going gluten-free, you might not want to eat enough gluten to obtain a positive diagnosis....and this may be true for me. I'll ask my doctor for the standard gluten panel, but because I'm not a gluton for gluten anymore, it might not come out positive.

BUT I ASK YOU THIS...Isn't having the runs for two days after eating a donut a diagnosis in itself? I mean we have to listen to our bodies right....medical evidence not withstanding..Isn't feeling like I have the flu and the runs, for two days after I eat gluten evidence enough?? If I eat pizza or Chinese food and spend the next three days running from bathroom to bathroom...that's sort of a stupid thing for me to do....

I mean, I might not get a piece of paper that says I'm celiac...but I won't have the $hits either...

[Jestgar]

That's exactly how I feel. All I'm doing is choosing a different diet. It's no different than choosing to be vegan or choosing to eat only organic. It's a lifestyle choice.

The accompanying issues may be medical (autoimmune diseases), but those can also be found in non-Celiacs. I know I'm at a greater risk for these and I can pay attention to my body and bring any problems to the attention of an MD or ND or OD or whoever I need to get proper medical attention, but again, what I'm eating doesn't change this.

I think for a long time people turned their health over to strangers, and now it's time to take it back.

[gf4life]

I agree with both of you. I diagnosed myself and proceeded to make myself sicker eating gltuen trying to get a diagnosis. When none of my doctors would believe me, I went to Enterolab to confirm what I already knew. I knew that I need confirmation or else I might start to doubt myself once I was feeling 100% better. And then I knew I would occasionally cheat to test my diagnosis and I knew how dangerous that was for my body, so for me I NEEDED to have confirmation. I also needed something concrete in order to convince the doctors that my children needed to be tested. Due to insurance issues I ended up testing them through Enterolab as well, since it was cheaper than out of pocket with Prometheus Labs. Also Enterolab's gene test is more comprehensive. We do have the good fortune of having family doctors that do support us on the diet, even though we do not have a diagnosis of "Celiac Disease". I just have it down in our records that we are gluten intolerant and are on a gluten free diet.

[azmom]

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.

[JerryK]

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.

Right, that worries me also.......by the way, I feel GREAT today...two days without Gluten.

[azmom]

Congrats! I hope the good feeling continues!

[gf4life]

Jerry, thats great that you are already feeling better.

The only downfall to not having a diagnosis is that I can't get the follow-up nutritional deficiency tests done that so many diagnosed Celiacs seem to get. I wanted to have a bone density scan and be tested for B-12, Iron, etc. and it was near to impossible to get it authorized by the insurance without some medical diagnosis explaining why I needed those tests. So if you think you need those tests then I suggest you push for a diagnosis.

But going back on gluten is no guarantee that you will test positive. I was gluten free for a period of time twice and back on gluten for testing and was negative for everything, even though I was sick all the time. It can take many years back on gluten to cause damage enough to test positive and I wasn't willing to do that. In fact my Primary Care Physician was surprised when I came back from the second GI and still didn't have a diagnosis of celiac disease. He said that if I wanted he could get the insurance to cover my testing at a hospital like Stanford, but I said there was no way I was going to go back on gluten again for the testing. He said if I choose to in the future he would help me. It's nice of him, but I just don't think I need that diagnosis. It is just dietary changes. It isn't like there is some medication they need to give me or surgery I need. I can make the necessary lifestyle changes and be fine.

[Jestgar]

The only downfall to not having a diagnosis is that I can't get the follow-up nutritional deficiency tests done that so many diagnosed Celiacs seem to get. I wanted to have a bone density scan and be tested for B-12, Iron, etc. and it was near to impossible to get it authorized by the insurance without some medical diagnosis explaining why I needed those tests. So if you think you need those tests then I suggest you push for a diagnosis.

But again, these tests are only relevant if you need medical intervention to treat them (which you might). I'm curious about my bone density, but I would never take those nasty pills to treat myself. Too many side effects for something that I know will return on its own. Same with other vitamin deficiencies. I know that all the levels will return to normal over time and I prefer to let them change gradually to give my body time to adapt.

[JerryK]

But again, these tests are only relevant if you need medical intervention to treat them (which you might). I'm curious about my bone density, but I would never take those nasty pills to treat myself. Too many side effects for something that I know will return on its own. Same with other vitamin deficiencies. I know that all the levels will return to normal over time and I prefer to let them change gradually to give my body time to adapt.

Really, I just need to.

-Not have the runs.

-Not have fatigue.

-Not have depression.

Beyond that, I guess I'd be satisfied to tell people that wheat makes me sick, so I don't eat it.

I suppose I could get the Enterolab gene test too.

[StrongerToday]

My dr. explained it (negative tests) to me with a "do you need a piece of paper to tell you it hurts when you shut your finger in the door? No, well - you don't need a piece of paper telling you that if you eat something you don't feel well"

[gf4life]

But again, these tests are only relevant if you need medical intervention to treat them (which you might). I'm curious about my bone density, but I would never take those nasty pills to treat myself. Too many side effects for something that I know will return on its own. Same with other vitamin deficiencies. I know that all the levels will return to normal over time and I prefer to let them change gradually to give my body time to adapt.

Yeah, thats the conclusion I came to also. I was really sick when I finally went gluten free for good, and knew I needed supplementation of vitamins. I just really wanted help with knowing how much of each kind I needed. I've been gluten-free for more than 4 years now and at this point I feel really healthy and don't feel I need any of those tests anymore.

[GeoffCJ]

That's exactly how I feel. All I'm doing is choosing a different diet. It's no different than choosing to be vegan or choosing to eat only organic. It's a lifestyle choice.

I have to disagree with this. It's not a lifestyle choice. I'd never choose to give up beer and pizza with my buddies. I'm forced to, because I get sick if I don't. Would you call diabetes or a peanut allergy a "lifestyle" choice?

Cause that's the way I feel about Celiac disease.

I was vegan or vegetarian for 12 years. That was a lifestyle choice, and it it's entirely a different thing when you know you are making a choice to not eat things. Then I agree, it's a lifestyle choice.

But living in fear of buffets, croutons, and hidden poisons in my food is not a lifestyle choice.

Geoff

[Jestgar]

You're choosing not to be sick

[JerryK]

You're choosing not to be sick

I'm in total agreement with that....

If I feel horrible everytime I eat Gluten...I'm going to choose to avoid it...even fear it.

[GeoffCJ]

You're choosing not to be sick

I think we'll have to agree to disagree, but I strongly disagree. There is an inherent difference between making a choice like vegetarianism, and choosing to treat a disease.

It's like equating an appendectomy and an eye lift. Sure, both are surgery, and you can choose not to get an appendectomy when needed, but it'd be pretty dumb. In my book, those are different choices.

Geoff

[Jestgar]

I feel that my way of looking at it gives me absolute control over Celiac, not the other way around.

I guess I should also say that I've pretty much always cooked my own food, not eaten much processed stuff, and not gone out much. This, for me, is mostly a different style of cooking.

I had stopped drinking beer long ago without consciously knowing it was making me sick. Again, just another change in lifestyle - mohitos and vodka martinis are just fine with me

[GeoffCJ]

I feel that my way of looking at it gives me absolute control over Celiac, not the other way around.

To me, that's like saying I have control over gravity. I choose not to jump off a building. That doesn't imply I control gravity, I'm simply forced to accept the reality of it's existence, and work with it. I feel the same way about Celiac.

My worry is this, if other's beleive that it's a "lifestyle choice" will they really feel compelled to take it seriously? If a waiter associates this with something like Atkins, vegetarianism, or eating organic (lifestyle) they might be more inclined to take a "if they don't know it won't hurt them" attitude.

If they know it's a disease, and we will be SICK, that it's not a choice (like diabetes is not a choice), I believe that gives it the appropriate level of gravitas. I want people to take this seriously, as it is serious. A lifestyle choice implies I have one, and I don't feel that I really do.

Geoff

[Jestgar]

My worry is this, if other's beleive that it's a "lifestyle choice" will they really feel compelled to take it seriously? If a waiter associates this with something like Atkins, vegetarianism, or eating organic (lifestyle) they might be more inclined to take a "if they don't know it won't hurt them" attitude.

I know three very intelligent people with the disease, one MD, one scientist, and one high level manager, none of whom feel the need to completely avoid gluten, even though they KNOW the risks. I think that people are people and they will do what they choose, and create their own basis for doing it.

[Kaycee]

A lifestyle choice implies I have one, and I don't feel that I really do.

Geoff

Geoff you did have a choice and you have chosen to be healthy.

Having control over my diet gives me the upper edge, otherwise it would feel like the disease having control over me. I would rather be in control of the disease. I would like to think I had the choice in which food I ate, and I think I do, even though according to most of the population I don't really. If I thought I didn't have control over my diet, I would get angry, depressed and resentful. I decided not to be sick, so it is me having control over my health.

To me it has been a complete lifestyle change and ultimately I have made the choice to be well. Not everybody decides to stick to a gluten free diet 100%, but then that has been their choice. Along with giving up gluten, I have given up a whole host of unhealthy foods and that is my choice.

Then I do agree lifestyle choice does sound a bit like a fad. But even in lifestyle choices it is usually a conscious effort by the person to be healthier. What is wrong with that? I only wish more people would look harder at the choices they make.

Cathy

[darlindeb25]

But living in fear of buffets, croutons, and hidden poisons in my food is not a lifestyle choice.Yes Geoff, it is a lifestyle choice, whether you want to believe it or not. You choose to not eat gluten--some people will continue to eat it, even if it makes them sick. No one is forcing you to be gluten free. Yes, you have a disease and yes, it requires you be gluten-free, yet it is your decision to follow the recommended advice for celiac disease. So, therefore, you are choosing a gluten-free lifestyle. All just words, you are mincing words here. In my book, those are different choices. Well Geoff, it is a choice you make to go gluten-free, anyone with celiac's can decide they will ignore the fact that they have a disease or they can make a lifestyle change and go gluten free. A lifestyle change is the medicine for celiac disease.

I agree with Jerry, if it is easier to tell someone that I am allergic to wheat, then that is what I would do. It depends on the person, some can grasp intolerance, some can not. Agree or disagree, we are all in the same boat, some of us have papers to be there, some of us do not, yet we need to be gluten free just as much as those with papers. I am an undiagnosed celiac, I know that, my doctor knows it, my family knows it, my sweetheart knows it--it doesn't matter beyond them who does or doesn't think I am. I KNOW I AM AND I CHOSE TO CHANGE MY LIFESTYLE TO ACCOMODATE THIS DISEASE.

[Ursa Major]

Jerry, you didn't self-diagnose, you got a diagnosis from Enterolab! That, combined with feeling better off gluten, and feeling terrible eating it is a firm diagnosis. What else do you need? I really can't understand why you question the Enterolab diagnosis and bother making yourself sick again now. I feel like 'coming over' and giving you a good shake!

You know Deb, if you want to call being gluten-free a lifestyle choice if you're celiac, that would be like saying that taking insulin for somebody with diabetes is a lifestyle choice, too. After all, they could choose to stop their shots and eating sugary food, even though it would kill them.

[gf4life]

I also feel that it keeps me in a more positive frame of mind if I see following this diet as a choice that I have made. My sister also has a problem with gluten and will not seek a diagnosis because she has no plan to follow the diet. She is choosing instead to be sick all the time. She is choosing to get sicker every day. She thinks following the diet is just too much and she doesn't want to deal with it since her life is already so hectic. I feel that she would be better equipt to deal with her hectic life if she wasn't sick all the time! But she chooses not to try eating gluten free. She doesn't want to lose the convenience of grabbing whatever food is available whenever she has time to eat.

None of us choose to have Celiac Disease and get sick if we eat gluten, but we do choose whether we want to change our eating habits and stop eating gluten. Of course the alternative of being sick all the time is quite a good incentive for choosing gluten free!

Ursula, some people do choose to do the very thing that is killing them. It is like my father-in-law who has emphysema and will not quit smoking. His doctors refuse to give him any treatment since he refuses to quit smoking. He knows he is killing himself and he doesn't care. I have know diabetics to do the very thing that you said. It is dangerous, but some people just don't care. They cannot give up the thing that they are addicted to, whether it be sugar, cigarettes, gluten or anything else.

[tarnalberry]

BUT I ASK YOU THIS...Isn't having the runs for two days after eating a donut a diagnosis in itself? I mean we have to listen to our bodies right....medical evidence not withstanding..Isn't feeling like I have the flu and the runs, for two days after I eat gluten evidence enough??

Even some *doctors* think that this is ample evidence.

It's true!

It's even written as the classic "confirmation test"! :o

Why they don't use it more thoroughly....

[Fiddle-Faddle]

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.

[Kaycee]

Geoff sorry for beating up on you.

You words were well put Fiddle-Faddle. I agree completely with what you say, and if I had thought about the other side of things, my answer would've been completely different.

Every body has their own strategy for coping and everybody is different.

Thanks for your commonsense.

Cathy