What Proportion Are Self-diagnosed?

[CCM]

This may already be discussed somewhere on this forum but I honestly do not have the time to search at the moment. I am hopeful that someone might point out the appropriate thread if one does exist.

My question, sort of a poll (I have not read how to set up an official poll):

Does current research suggest what proportion of gluten intolerant folks are self diagnosed by

means of the elimination diet alone (blood tests and biopsies are negative/normal)?

I am wondering how commonly this happens?

Or do folks who find determine a sensitivity by diet then go on to find later the true root of the problem (celiac disease or possibly something else the symptoms of which mimic celiac disease)?

[mushroom]

This may already be discussed somewhere on this forum but I honestly do not have the time to search at the moment. I am hopeful that someone might point out the appropriate thread if one does exist.

My question, sort of a poll (I have not read how to set up an official poll):

Does current research suggest what proportion of gluten intolerant folks are self diagnosed by

means of the elimination diet alone (blood tests and biopsies are negative/normal)?

I am wondering how commonly this happens?

Or do folks who find determine a sensitivity by diet then go on to find later the true root of the problem (celiac disease or possibly something else the symptoms of which mimic celiac disease)?

Speaking nonscientifically, for myself alone, I think so many of us by the time we realize we cannot do gluten have been to so many doctors and had so many wrong diagnoses, that we can't even be bothered with doctors any more. We just go on the diet, it works, so why waste the money and the aggravation. I have no children so it is not important to me that I might have passed it on to them, and if I thought that I had I would have them tested, not me. For myself, I know the basic problem and am still finding out if corn, soy and dairy have to be eliminated too (soy would be no loss, but corn chips and guacamole, sour cream on baked potatoes, parmesan on ratatouille, that is going to be more difficult.) I have started with soy first.

[silk]

Speaking nonscientifically, for myself alone, I think so many of us by the time we realize we cannot do gluten have been to so many doctors and had so many wrong diagnoses, that we can't even be bothered with doctors any more. We just go on the diet, it works, so why waste the money and the aggravation. I have no children so it is not important to me that I might have passed it on to them, and if I thought that I had I would have them tested, not me. For myself, I know the basic problem and am still finding out if corn, soy and dairy have to be eliminated too (soy would be no loss, but corn chips and guacamole, sour cream on baked potatoes, parmesan on ratatouille, that is going to be more difficult.) I have started with soy first.

I have to agree, Mushroom. While I had only begun the testing process for my pain and problems, I have had those problems all of my life (or at least for as long as I can remember). When all of the tests that had been done showed nothing, my Dr. suggested that we should look into other things such as Celiac Sprue. Having never heard of it, I searched the web and found this sight and my answer to so many years of illness. It probably would have been wiser to do the testing before going gluten-free and yet, who really wants to wait until they can be tested(found out right before the Thanksgiving holiday) if there is any possible solution that will make you feel better right away. So I went on the diet and feel so much better now. I have received enough sneak attack glutenings in the past 3 months and the results are all I need to tell me that I have the disease. I also have so many of the other 'flags' that go along with it that even my Dr. does not feel there is any doubt. My middle daughter also has it and did not get tested but improved greatly on the gluten-free lifestyle. I don't think I would even mess with having my other children or grandchildren tested with such positive results in me and how I and my daughter responded to removing the gluten from our lives. If there were symptoms, I would just put them on the diet to see if there was improvement. However, I also realize that some people do not show obvious symptoms and can still have it....

My question would be...if 1 parent has it, what are the stats for the number of children that have it? And if both parents had it (which I think mine did) what are the odds that both of my brothers as well as myself all had it and what are the odds that my three children and 4 grandchildren would have it? If both of my parents had it and I have it, are the odds pretty well stacked against all of them or could some be ?immune? from it?

Interesting question!

[mushroom]

My question would be...if 1 parent has it, what are the stats for the number of children that have it? And if both parents had it (which I think mine did) what are the odds that both of my brothers as well as myself all had it and what are the odds that my three children and 4 grandchildren would have it? If both of my parents had it and I have it, are the odds pretty well stacked against all of them or could some be ?immune? from it?

I am pretty sure my mom was celiac, or at least very gluten intolerant but would not admit it. Had the constant gassiness, swollen ankles, etc. My oldest sister is intolerant to gluten, salicylates and gets very sick from chemical sprays. My middle sister has many of the same symptoms as I had with the gassiness and bloating but thinks we are wusses--she says "I just get on with it." With what, maybe dying?? My oldest sister's daughter (only child) is celiac--triggered by mononucleosis it seems--and despite being gluten and dairy free (and also vegetarian) she is still so incapacitated she can barely function. My father seemed to be perfectly okay but I have questions about my baby brother who is no longer with us. The genetic lines seem to run pretty strong in our family for all the bad things--celiac, breast cancer, melanoma. I haven't had the breast cancer yet

Statistically speaking I have no idea. My sisters and I are taking part in a melanoma genetic study being conducted by the University of Sydney to try to deal with the melanoma issue at least. This participation was triggered by middle sister's daughter's melanoma, so the line continues.

Sheesh!

[ravenwoodglass]

I am a bit of an oddball, I was diagnosed through elimination but I was diagnosed by a very savvy allergist. He suspected celiac when my allegy stick tests showed positive to all but one item. I had been blood tested over and over again for years, always negative so they never biopsied. He put me on an elimination diet and we knew 3 days after I added cream of wheat. I had by that time been gluten-free for 6 weeks, he referred me to a GI who then demanded a gluten challenge that almost killed me.

Because of my experience with testing, false negatives and my response to the diet I strongly encourage anyone who suspects celiac to go with their gut. An elimination diet, done correctly, can be a very accurate tool for diagnosis.

As to the chances of celiac being passed on, in my family it is 100% inheritance. My children have different natural fathers, both showed up on bloodwork when tested after my diagnosis. Both also apparently inherited a gene from their Dads' side. Celiac has a different inheritance pattern from other 'diseases', (I actually consider it an ignored genetic difference not a disease). It is not the 1 in 4 that you here of with most defects, it is much higher.

[brendygirl]

My doc said I had lactose intolerance. I always said I had whatever my (estranged) dad had, due to his constant drinking of anti-d medicine- and when he was diagnosed with a "wheat" allergy by a new back doctor (we both have severe back pain- we always thought his was from being a trucker or from being overweight--and I was neither). I told my doctor about the wheat and the doc told me to eliminate gluten-- which made me feel better, but wrecked the eventual blood test. I had elevated levels of the igH or whatever but not high enough to make an official diagnosis because I'd been off gluten.