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How Many People Self-Diagnose?


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39 replies to this topic

#16 benXX

 
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Posted 01 July 2012 - 01:07 AM

Should I just go with my gut feeling (the one I get when I don't have gluten in it!!) and just stop with it all? I've had enough now. Is an official diagnosis really worth the hassle that goes with it? I was adamant that it would be before today, but 6 more weeks is a big ask!! Advice please?!

Please don't listen to people encouraging you not to go for an official diagnosis.

For one, when officially diagnosed, it is so much easier to follow a lifetime diet and to convince the people around you about it.
Secondly, being diagnosed, you will get the necessary follow up tests for the possible effects of mal-absorption.
Thirdly, you might have some other auto-immune disease i.s.o. celiac, self diagnosing might put you on the wrong track.

I went on a 30g gluten/day challenge for 2 months (=40g gluten powder or 12 slices of bread) and yes, it was hell, but it was worth it .
Doctors do take me serious and I'm getting all the follow-up tests needed and help I want. Plus I'm super motivated to stay on the diet.

Hang in there, the gluten challenge will soon pass. Trust me, it's worth it.
  • 0
Ben (58)

Diagnosed Celiac 12-Apr-2012
Dairy intolerant, B12 malabsorption, Bile acid malabsorption.
Osteopania
Lifetime of misdiagnoses.

2008-2011 Lived in Thailand, almost symptom free.
Now only eat Thai food.
Easy to cook - gluten/dairy free - delicious

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#17 Skylark

 
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Posted 01 July 2012 - 06:37 AM

Please don't listen to people encouraging you not to go for an official diagnosis.

For one, when officially diagnosed, it is so much easier to follow a lifetime diet and to convince the people around you about it.
Secondly, being diagnosed, you will get the necessary follow up tests for the possible effects of mal-absorption.
Thirdly, you might have some other auto-immune disease i.s.o. celiac, self diagnosing might put you on the wrong track.

I went on a 30g gluten/day challenge for 2 months (=40g gluten powder or 12 slices of bread) and yes, it was hell, but it was worth it .
Doctors do take me serious and I'm getting all the follow-up tests needed and help I want. Plus I'm super motivated to stay on the diet.

Hang in there, the gluten challenge will soon pass. Trust me, it's worth it.

You mean, for YOU it's easier to stick to the diet. I'm self-diagnosed and I have no problems sticking to the diet. I also have no issues getting proper medial care or convincing my friends/family that I need really clean food. It's pretty obvious when a lifetime of GI symptoms, canker sores, psych symptoms, and anemia all go away after a year gluten-free.

Gluten challenges can be really dangerous. You got off easy. I was specifically instructed by my doctors not to challenge. In my case I risk serious psychiatric illness from the effects of gluten on my mind. You can also trigger autoimmune flare-ups and we had a board member who got so sick she needed hospitalization when she challenged. A gluten challenge isn't something to undergo lightly.
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#18 Skylark

 
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Posted 01 July 2012 - 06:41 AM

They say that because my Gene testing was DQ1 and my rash was inconclusive for DH. It is either DH or Lichen Planus both of which are auto immune reactions to gluten but Lichen Planus isn't diagnosed as Celiac. :(

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.
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#19 IrishHeart

 
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Posted 01 July 2012 - 09:02 AM

I went on a 30g gluten/day challenge for 2 months (=40g gluten powder or 12 slices of bread) and yes, it was hell, but it was worth it .
Doctors do take me serious and I'm getting all the follow-up tests needed and help I want. Plus I'm super motivated to stay on the diet.

Hang in there, the gluten challenge will soon pass. Trust me, it's worth it.



If I tried a gluten challenge right now, within a few days, I'd be in the hospital, or a mental heath ward or dead from driving my car off the road. These are the ramifications of gluten ingestion for me.

My GI doctor would NEVER suggest such a thing to his patients who exhibit serious neurological symptoms.

Not everyone can handle it.

In fact, some docs WILL DIAGNOSE if the gluten challenge becomes life-threatening.

You said you cannot tell when you have been glutened by accident, right? (I read this on the other thread "How bad is cheating")

So, maybe YOU needed a DX via gluten challenge to keep yourself on the straight and narrow, but many do not.

Should they get a "proper DX"? Yes, if it's possible!!

But, for some, it is contraindicated.
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#20 benXX

 
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Posted 01 July 2012 - 12:10 PM

You mean, for YOU it's easier to stick to the diet....

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.

Gluten challenges can be really dangerous. You got off easy. I was specifically instructed by my doctors not to challenge. In my case I risk serious psychiatric illness from the effects of gluten on my mind. You can also trigger autoimmune flare-ups and we had a board member who got so sick she needed hospitalization when she challenged. A gluten challenge isn't something to undergo lightly.

If a gluten challenge becomes life threatening or really unbearable, of course a person needs to contact his/her doctor and discuss how to go further. That is just common sense. There are many diagnosed celiacs out there who did the gluten challenge like me. For me it was not a nice thing to go through, but didn't kill me either. I'm happy now I did not quit. I feel lucky I had people supporting me and helped me through it.


You said you cannot tell when you have been glutened by accident, right? (I read this on the other thread "How bad is cheating")

You read wrong.
I said my body (nor anyone else's body for that matter) can tell the difference between an accidental glutening and a glutening on purpose (as for the body it's just a glutening). Hope with the additions you are better able to understand it.


I'm sorry to hear how some of you were not able to do the gluten challenge and therefore missed to be diagnosed and to find out the benefits of being properly diagnosed.
  • -1
Ben (58)

Diagnosed Celiac 12-Apr-2012
Dairy intolerant, B12 malabsorption, Bile acid malabsorption.
Osteopania
Lifetime of misdiagnoses.

2008-2011 Lived in Thailand, almost symptom free.
Now only eat Thai food.
Easy to cook - gluten/dairy free - delicious

#21 IrishHeart

 
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Posted 01 July 2012 - 01:43 PM

You read wrong.
I said my body (nor anyone else's body for that matter) can tell the difference between an accidental glutening and a glutening on purpose (as for the body it's just a glutening). Hope with the additions you are better able to understand it.





"As my body doesn't know if I'm glutened on purpose or by accident"

is what you said.

Since there was no clarification on that thread (that you mean anyone's body), to me, that meant YOU cannot tell when it happens because you have no physical signs you've been glutened , whether accidentally or intentionally. I thought that was why you were so curious about how much gluten can cause damage if someone cheats. I thought you meant you do not get sick or have symptoms.

That is why I was confused by what you said here.

No need to write "DUH!" to me, BTW (yes, I saw that you had written that at first and then removed it.)

Your sentence is open to several interpretations. But, thank you for clarifying.
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#22 squirmingitch

 
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Posted 01 July 2012 - 03:38 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.


Can you provide a medical study which supports your statement?
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#23 Chad Sines

 
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Posted 01 July 2012 - 04:20 PM

My issues started near kidhood, flare at 31ish that was bad. They studied me for a year and then took my gallbladder which wrecked me. Full blown from jan 2010 to march 2011 in a serious, think you are doing to die way, before I figured it out. Multiple GI and all their tests could not figure it out over 20ish years because I passed one blood test. I trialed gluten-free and stopped hurling for the first time in months after only 2 days. I had no choice but to self diagnose.

Why would I care to have a doctor diagnose me with their tests. All that money just to say to go back to eating gluten-free. Seems a waste, but if you need it get it. I do not.

Plus imagine how discouraging it would be to get a negative blood test and a negative biopsy. By the logic of needing that diagnosis to adhere, this would destroy the motivation completely even though you already know.
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#24 Ninja

 
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Posted 01 July 2012 - 04:40 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.


Doubt that cannot be satiated by an innate sense of well-being (aka: improvement off of gluten) usually punctures through things that are "accredited" (a formal diagnosis) as well. (Lots of IMO'ing here...)

The tests are not 100% specific or sensitive *yet*. Even if they are 99.9% accurate (not saying they are!), doubt still is able to seep through the cracks – also, a diagnosis does not guarantee understanding from doctors, friends and family members.

Edited to add: I am also self-diagnosed, though I do hope to be 'officially' diagnosed because there definitely are benefits for college, etc. I was blood tested once – negative... and have been gluten free for 5 months! Not sure I want to gluten challenge... :ph34r:
  • 0

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#25 Lisa

 
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Posted 01 July 2012 - 05:01 PM

The topic is "How Many People Self-Diagnose". :D
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#26 Sage122

 
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Posted 01 July 2012 - 06:24 PM

I'd definitely suggest going to see a doctor. Don't self diagnose.

I was one of them. Gluten was giving me so many issues that I stopped eaiting it. Gluten free made me feel Better so I just assumed I was "allergic." then I learned about celiac and stuff. But by then it was too late to get tested. I had already been gluten free for months.

I went to an allergist and he said that if I felt Better gluten free, then I should just assume I am gluten sensitive. There are no tests or stuff I can do but assume. So I could indeed be a celiac, I guess I'll never know.

Long story short, don't self diagnose
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#27 benXX

 
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Posted 01 July 2012 - 07:09 PM

"As my body doesn't know if I'm glutened on purpose or by accident"

clearly the keyword is "body" and "my body doesn't know" has not the same meaning as "I don't know"
And it is about knowing the difference between "by accident or on purpose"
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Ben (58)

Diagnosed Celiac 12-Apr-2012
Dairy intolerant, B12 malabsorption, Bile acid malabsorption.
Osteopania
Lifetime of misdiagnoses.

2008-2011 Lived in Thailand, almost symptom free.
Now only eat Thai food.
Easy to cook - gluten/dairy free - delicious

#28 benXX

 
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Posted 01 July 2012 - 07:14 PM

The topic is "How Many People Self-Diagnose". :D

On this forum it looks like there are many people self-diagnosed and that they are very active.
  • 0
Ben (58)

Diagnosed Celiac 12-Apr-2012
Dairy intolerant, B12 malabsorption, Bile acid malabsorption.
Osteopania
Lifetime of misdiagnoses.

2008-2011 Lived in Thailand, almost symptom free.
Now only eat Thai food.
Easy to cook - gluten/dairy free - delicious

#29 mushroom

 
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Posted 01 July 2012 - 07:24 PM

I believe most people self-diagnose due to frustration with the medical profession and their inability to do the job. It doesn't take much math to calculate that major symptoms after consumption of gluten which resolve when gluten is withdrawn means you have a problem with gluten (or wheat, etc.). Heck, a lot of people had not in the past even heard of celiac or sometimes even gluten when they stopped eating gluten-containing products. It was not a diagnosis but a life-saving move. This is not so true today with the much greater general awareness. In fact, everyone is getting sick to death of even hearing about celiac, let alone gluten consumption or avoidance. :rolleyes:

Frankly, IMHO, if someone is unable to refrain from eating something that harms them because they don't have a formal diagnosis, they have very little respect for their body and their own judgment. While the diagnosis is a useful piece of information, it is not so useful as to make yourself ill to obtain it once you know the facts and especially once you realize you have been misled by the medical professionals..
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#30 Jestgar

 
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Posted 01 July 2012 - 08:48 PM

On this forum it looks like there are many people self-diagnosed and that they are very active.

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.
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