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How Many People Self-Diagnose?


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39 replies to this topic

#31 Skylark

 
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Posted 01 July 2012 - 09:45 PM

Not only for me, for most. Just in human nature that life is easier without doubts. And there is a lot of positive power from doctors, employers, friends, family-members taking your celiac to be a fact.erefore missed to be diagnosed and to find out the benefits of being properly diagnosed.

How dare you presume to speak for "most"? You speak for yourself and no other. Please stop presenting your opinions as the majority. I'm getting angry now because you are acting as if a self-diagnosis is somehow inferior or less accurate than one bestowed by a dude in a white coat who still puts his pants on one leg at a time in the morning. Celiac tests have a 20% false negative rate, 1 in 5 shot that even if you challenge and risk your health and well-being by eating poison you won't get a positive result.

And what are these magical benefits of being "diagnosed" (as if I can't figure my celiac disease out for myself perfectly well)? Please enlighten us. My family understands that I have autoimmunity, my friends eat where I need, my doctors consider me celiac and give me the care I need. A so-called formal diagnosis would change absolutely nothing for me.

In fact, in the US getting diagnosed can be detrimental because it becomes a pre-existing condition that can get you declined coverage or bumped into a more expensive insurance bracket. Hardly a compelling reason to poison oneself for a piece of paper that tells you what you already know.
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#32 bennl1

 
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Posted 02 July 2012 - 02:55 AM

In fact, in the US getting diagnosed can be detrimental because it becomes a pre-existing condition that can get you declined coverage or bumped into a more expensive insurance bracket.

Isn't that fraudulent, withholding information when applying for an insurance?
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Ben (58)

Diagnosed Celiac 12-Apr-2012
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#33 IrishHeart

 
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Posted 02 July 2012 - 04:07 AM

Isn't that fraudulent, withholding information when applying for an insurance?



Just a moment here, please.

You are twisting her words. This is not what Skylark was talking about at all. You have gone so completely off topic now.

The topic is about how many people self-diagnose. Lisa has already pointed this out once.

It is not about why you shouldn't self-diagnose. EVERYONE already knows this. They have all tried to obtain a diagnosis and been let down by the medical community in some way or another or tested negative and still suffer. I would relate my own experience in trying to get DXed for 3 years, but they have already heard it. Self-diagnosis is sometimes the only way for people to get well.

I refer you to the Board Rule #5 to remain on topic.
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#34 jerseyangel

 
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Posted 02 July 2012 - 05:43 AM

I think that many people who self diagnose do so because they have become very very ill. They stop eating gluten and start to feel better. What's wrong with that? Also, I disagree with your statement of having a doctor's opinion is motivating to stay on the diet. I really don't care what a doctor tells me, and I have no trouble staying on the diet. Perhaps if you've gotten to the point of extreme illness, you end up with a lot of other issues, and tend to stay in support groups such as this.

I agree, in my opinion it boils down to this.

That being said, every person needs to do what they feel is best for them.
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#35 Jestgar

 
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Posted 02 July 2012 - 07:39 AM

Isn't that fraudulent, withholding information when applying for an insurance?

Not at all. If beets give you heartburn, so you just avoid them, you wouldn't put that on your insurance application.
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#36 roxieb73

 
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Posted 02 July 2012 - 09:07 AM

Your doctor is splitting hairs. You can be celiac with DQ1 and some experts argue that gluten-sensitive lichen planus is a skin manifestation of celiac. If rash goes away off gluten I'd consider myself celiac.


Thank you Skylark! I guess I am just a little scared to say offically that I have celiac. I am Gluten free almost 2 weeks now and already starting to feel better. My sister in law was amazed yesterday at how much better I am in such a short period of time. She is a nurse. I do have doctor approval to do Gluten free diet and he put me on a ton of vitamins. I guess he is just going by the book. He obviously sees that Gluten is the problem or he wouldn't do all the testing and tell me to go gluten free. I don't need the offial diagnosis as long as I get better I am happy. ;)
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GI confirmed Celiac 08/2012
Double DQ1 subtypes(5,6)
Severe Vit D defiency
Iron Defiency Anemia
Gluten Free and on my way back to good health

#37 Skylark

 
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Posted 02 July 2012 - 10:20 AM

Thank you Skylark! I guess I am just a little scared to say offically that I have celiac. I am Gluten free almost 2 weeks now and already starting to feel better. My sister in law was amazed yesterday at how much better I am in such a short period of time. She is a nurse. I do have doctor approval to do Gluten free diet and he put me on a ton of vitamins. I guess he is just going by the book. He obviously sees that Gluten is the problem or he wouldn't do all the testing and tell me to go gluten free. I don't need the offial diagnosis as long as I get better I am happy. ;)

There are people with neurological autoimmunity, gluten-sensitive psoriasis, and gluten-sensitive rheumatoid arthritis who don't get labeled celiac either. It's pretty reasonable to argue that all the forms of gluten-sensitive autoimmunity are different manifestations of celiac disease. I think it's only a matter of time before the definition of celiac expands to include you. ;)

Call yourself whatever feels comfortable. I find telling people I'm celiac simpler than trying to explain why the medical system failed so badly that I was never tested except in childhood when I was already eating gluten-free out of necessity.
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#38 roxieb73

 
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Posted 02 July 2012 - 11:22 AM

There are people with neurological autoimmunity, gluten-sensitive psoriasis, and gluten-sensitive rheumatoid arthritis who don't get labeled celiac either. It's pretty reasonable to argue that all the forms of gluten-sensitive autoimmunity are different manifestations of celiac disease. I think it's only a matter of time before the definition of celiac expands to include you. ;)

Call yourself whatever feels comfortable. I find telling people I'm celiac simpler than trying to explain why the medical system failed so badly that I was never tested except in childhood when I was already eating gluten-free out of necessity.


I completely agree with you and someday I know I will be in the Celiac umbrella. Until then I will be content to tell people I have an Autoimmune Gluten Intolerance and get really sick if I eat it.

I am just so happy to have a reason I am so sick. Not just a reason but a way to FIX the problem. I am actually looking forward to my crusie in 8 weeks! 2 weeks ago I was looking for someone to take my place. I was actually willing to give up my crusie for free to someone so my son would have a good time! :( I start PT this week with my hottie Physical Therapist who promised me he would help me rebuild my muscles in time for my trip. :D
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GI confirmed Celiac 08/2012
Double DQ1 subtypes(5,6)
Severe Vit D defiency
Iron Defiency Anemia
Gluten Free and on my way back to good health

#39 Chad Sines

 
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Posted 02 July 2012 - 07:54 PM

I agree with the previous two posters. The label is too constricted now, IMO. I do believe as more understanding of the disease develops, there will be a more inclusive definition of the diagnosis. This lack of inclusion is what leads many of us to have no choice but to self diagnose. My single fail of one blood test shut down all future discussions and I only found out the false negatives after reading these forums.

This disease leads to more self diagnoses because it is so easy to self test with a gluten-free diet. For me it was just a "who knows" trial and two days later my life changed.
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#40 roxieb73

 
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Posted 03 July 2012 - 06:38 AM

I agree with the previous two posters. The label is too constricted now, IMO. I do believe as more understanding of the disease develops, there will be a more inclusive definition of the diagnosis. This lack of inclusion is what leads many of us to have no choice but to self diagnose. My single fail of one blood test shut down all future discussions and I only found out the false negatives after reading these forums.

This disease leads to more self diagnoses because it is so easy test with a gluten-free diet. For me it was just a "who knows" trial and two days later my life changed.


Thank you Chad! Isn't it amazing how much difference it makes. Thank you for sharing and I am so glad you didn't let the "It's negative" statment stop you from trying a gluten free diet.
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GI confirmed Celiac 08/2012
Double DQ1 subtypes(5,6)
Severe Vit D defiency
Iron Defiency Anemia
Gluten Free and on my way back to good health




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