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How Many People Are Actually Self-diagnosed?


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#106 WhenDee

 
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Posted 20 February 2011 - 10:58 PM

*Raising hand*

I was sick for 16 years. It took an overseas move and becoming deathly ill with what they thought was a really serious stomach bug. I was on prescription fluids (the kind you would only get in a hospital if you were in the USA) and a pharmacist told me to do a strict elimination diet. Rice only for three days, then a slow introduction, one food at a time, starting with raw veggies. I had been "well" for over a week the first time I ate something with wheat in it and had a total relapse. It was NIGHT and DAY.

My US doctor sat with me in his office saying, "this seems like an auto-immune problem" and "I think all your stomach issues have a single cause, if we could just figure it out". But he didn't make the connection. I just wrote him a letter today, in the hopes that the next Celiac who comes through his office will be diagnosed.

My husband flipped completely out when I was going to have testing done here, in a country with third-world medicine, so I canceled my appointment. He was so amazing, and said, "the difference in you is so clear that I don't care what any doctor says".

In the end it doesn't matter. I know what gluten does to me. For me it was so obvious. Debilitating stomach problems, constant migraines - all gone. Vitamin deficiencies, cured. I know that I have two maternal aunts with diagnosed Celiac's. I believe my daughter has it & I'm taking her gluten-free this week to see if her health improves.

If you know that you aren't ever going to eat gluten again, it really doesn't matter. I am extremely blessed that mine doesn't seem to have turned into multiple intolerances like some celiacs I know, so it's very simple for me. I skip the gluten, I'm healthy. Period. Doctors be darned.
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#107 Teri Lou

 
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Posted 22 February 2011 - 02:20 AM

New here- What does DH mean? (abbreviation in the response above this one)
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#108 Dixiebell

 
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Posted 22 February 2011 - 05:10 AM

Hi Teri Lou.
DH stands for Dermatitis Herpetiformis.

http://www.celiac.co...Celiac-Disease/
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Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.
2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.
Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.
So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!
My adult daughter also has been helped by eating gluten-free.

#109 kellerg2

 
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Posted 22 February 2011 - 05:34 AM

I am actually still not officially diagnosed. My biopsy showed signs of the start of Celiacs and blood work normal. CT Scan done after was normal. Changing my diet has made me feel so much better so I am convinced that i have Celiacs but still not proven by the doctors. I have a follow up next week to figure out what to do next but in my eyes I have Celiacs even though the tests say otherwise.

My theory is that I went in to see a specialist literally weeks after my symptoms started and as a result it won't show as positive yet in blood work or on biopsy.
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#110 hnybny91

 
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Posted 22 February 2011 - 08:42 AM

Ok...let's get this straight...if your doctor says that you don't have celiac...then you probably don't have celiac. If you don't have a blood test and an endoscopy..then you don't have celiac. That is the only way that you can tell. You don't take test that you get off
the computer...or you don't take the word of your "friend" or you don't read an article in a magazine saying that you have celiac.... That means that you don't have celiac. This in fact it is a serious disease...and there are sooo many people that are diagnosing their selves...
because it is cool...it is fun to say I have a disease...( and one that is easy to take care of..) . The world has decided to diagnose their selves..and now we are 'all ' celiacs...


You are an idiot! I spent four years and thousands of dollars having test after test after test because the doctors I saw were too ignorant to realize that I had celiac Disease AND dermatitis hepeteformis. ONE FRIGGIN WEEK on a gluten free diet made me feel like a human being again. Yes, I am self diagnosed and yes I will scream from the rooftop that I HAVE CELIAC DISEASE and I could give a rat;'s behind if you or any other doctor agrees with me!
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#111 psawyer

 
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Posted 22 February 2011 - 09:22 AM

It would seem appropriate to remind everyone of board rule #1:

Do not be abusive or otherwise out of line towards other board members. Show respect for each board member, no matter what you think of their views. This is not a place to quarrel.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#112 Marz

 
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Posted 23 February 2011 - 11:27 AM

Ok...let's get this straight...you cannot diagnose yourself with Celiac Disease....this is a serious disease...you have to be diagnosed with a doctor...having a blood test and an endoscopy. I understand that you feel sick...but diagnosing yourself will not help. Do not claim to be a celiac...
did you actually go to a GI?


Yes it is a serious disease, but so many people who have been tested, and tests came back negative, have found huge relief from symptoms by going gluten free. Sometimes the reaction to gluten is serious enough that they call it "celiac disease" even without the official diagnosis. I agree that it should be taken seriously though - if people don't get properly diagnosed, there's the risk they could go back to eating gluten without being aware of the damage they're doing to themselves.
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Feb 2010 - Start of continuous GIT problems and panic attacks
July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms
July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem
*************************************************************
Gluten intolerant

#113 Jamie_S

 
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Posted 23 February 2011 - 01:16 PM

Hi there, I am new here as well. I am what you would call self-diagnosed. I have always felt sick my entire life. I had constant stomach aches that would have me doubled over in pain. The never ending need for sleep, even if I just slept 15hours was horrible, the list goes on and on. My doctors pretty much ignored me, and over the years I had so much blood taken, scans, and tests imaginable. I even had one doctor tell me I had a textbook anatomy. No one could find anything wrong with me and pretty much said it was all in my head. For 22 years of my life I simply believed there was nothing anyone could do and I would have to deal with feeling like crap every day. It got to the point though where I would literally sleep almost the entire day and have to drag myself to work and class. My poor boyfriend (husband now) never got to go anywhere on the weekend with me, because I constantly felt sick of tired. It def. put a strain on our relationship. Who wants to be dating the girl in college who can never go out. One day my mom happened to read something about Celiac, and so we went to the doctor and had the blood test taken to see if I had it, it came back negative. My doctor didn't want to do any other testes. I decided what the heck I will go on a gluten free diet anyways and see if it helps, maybe I am simply intolerant to it. Sure enough within 2 weeks of being Gluten free I felt so much better.
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#114 ILoveflowers74

 
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Posted 23 February 2011 - 03:09 PM

I am completely convinced especially after reading about symptoms and testimonials from all the posts on here and from celiac reference books that I am a celiac. I am trying to convince my doc who knows nothing about it . I was 5 months gluten-free before any tests and biopsy were done. Now consulting with a More knowledgable doc who suggested I do the G challenge. I was hoping there was another option. I am currently on day 16. I look pregnant from the bloat , nausea . And my legs and ankles killlllll me. Fatigued... I could go on , but u all know what I mean.... Gums are bleeding alot too.
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#115 Ciglee

 
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Posted 25 February 2011 - 09:00 AM

NO ONE says that you can't have celiac disease..no one says that you don't have a food allergy or intolerance...but for people on this website that declare they have celiac disease..without being tested..or doing the entrolab thing...is ridiculous!

Of course you can feel better with out eating wheat...but don't go around telling people that you have celiac when you don't. Or when a doctor saying" um...you don't have celiac.." and then those poor people that want a disease.. say well, maybe my doctor doesn't know what it is..or just doesn't want to diagnose me...or whatever the reason is this month...it is not true. You don't have it. You probably have an intolerence ...that is fine...declare yourself gluten free...but not celiac...
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#116 Jestgar

 
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Posted 25 February 2011 - 09:36 AM

...that is fine...declare yourself gluten free...but not celiac...

Why does it matter to you what other people say about themselves?
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
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Leap, and the net will appear.

#117 zus888

 
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Posted 25 February 2011 - 11:13 AM

NO ONE says that you can't have celiac disease..no one says that you don't have a food allergy or intolerance...but for people on this website that declare they have celiac disease..without being tested..or doing the entrolab thing...is ridiculous!

Of course you can feel better with out eating wheat...but don't go around telling people that you have celiac when you don't. Or when a doctor saying" um...you don't have celiac.." and then those poor people that want a disease.. say well, maybe my doctor doesn't know what it is..or just doesn't want to diagnose me...or whatever the reason is this month...it is not true. You don't have it. You probably have an intolerence ...that is fine...declare yourself gluten free...but not celiac...


I think this is a very narrow-minded point of view and you might do yourself a favor by reading "Healthier Without Wheat." I also think that you might have too much faith in the medical profession and on tests that are acknowledged to be imperfect. I'm not sure what your reasoning is behind your possessiveness over the "celiac" diagnosis. In fact, celiac is merely ONE form of gluten intolerance. Not only that, it's not necessarily the WORST form of it either. The only thing that celiac means is that there is villous atrophy associated with the gluten intolerance. That's it. Gluten intolerance still comes with all the other side effects to your immune system, digestive system, neurological system, etc. And just because they didn't FIND villous atrophy doesn't mean it's not there. And who cares anyway. It's the SAME EXACT treatment and comes with same risks to your health. One person (like me) could have a mild form of celiac, and another a much worse form of gluten intolerance. One is not worse than the other. Like I said before, celiac is merely ONE FORM of gluten intolerance. And it's not necessarily the worst form of it. It has been suggested that most people who ARE gluten intolerant are UNDIAGNOSED, meaning there's a lot of doctors completely missing it. If we went by your theory, no one could possibly have any disease without a doctor's approval and diagnosis and there would never be anyone running around with a misdiagnosis.
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Suzanna

#118 mushroom

 
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Posted 25 February 2011 - 12:07 PM

If we went by your theory, no one could possibly have any disease without a doctor's approval and diagnosis and there would never be anyone running around with a misdiagnosis.


But there would be a lot of very sick people who mistakenly believed in a doctor who did not know enough.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#119 mcc0523

 
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Posted 26 February 2011 - 05:41 AM

NO ONE says that you can't have celiac disease..no one says that you don't have a food allergy or intolerance...but for people on this website that declare they have celiac disease..without being tested..or doing the entrolab thing...is ridiculous!

Of course you can feel better with out eating wheat...but don't go around telling people that you have celiac when you don't. Or when a doctor saying" um...you don't have celiac.." and then those poor people that want a disease.. say well, maybe my doctor doesn't know what it is..or just doesn't want to diagnose me...or whatever the reason is this month...it is not true. You don't have it. You probably have an intolerence ...that is fine...declare yourself gluten free...but not celiac...


What is ridiculous is your seemingly blind faith in the medical profession. Plus, what part of 30% false NEGATIVE rate of the "Gold Standard" tests don't you understand? That means that there are 30% of the people who have been tested for Celiac and told that they don't have it that ACTUALLY HAVE IT!

Of course you can go around and trust the medical profession to always take care of patients, but as someone who slipped through the cracks for almost 25 years, don't go around and tell me to trust the medical profession when they are not trustworthy!
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DX: Ehlers-danlos syndrome, cervical syrinx, Postural Orthostatic Tachycardia Syndrome, Barrett's Esophagus, GERD, osteoporosis, thyroid disease, anemia, hypokalemia, niacin deficiency, vitamin D deficiency and various other malnutritions.

Although not diagnosed officially yet, I have suspected celiac since October of 2010. At least 2 separate physicians who are experts with collagen deficiencies (such as Ehlers-danlos syndrome) have mentioned the possibility to me, and one has tested (although I haven't gotten the results back yet).

#120 etta694

 
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Posted 28 February 2011 - 09:00 AM

I've had 6 years of all kind of tests for everything but Celiac. I recently had a colonoscopy, endoscopy, and biopsy.. everything 'normal' and I am obviously fine. After years of being sick I found all this gluten info online and went gluten free... BINGO. I feel wonderful now... but.. I am still undiagnosed, except by me.
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Anemia and IBS through my life
2005 Joint pain, exhaustion, general feeling of not being well 2006 Beginning of testing for everything but Celiac 2008 Bloating, more muscle stiffness, feeling sicker, more exhausted-testing 'normal' 2010 March insides begin to shut down, cough that won't go away 2010 June Colonoscopy, Endoscopy, biopsy - all show no problems
Self diagnosed gluten intolerant - went gluten free. Within 3 days feeling better.
After 5 days - insides began to move
Now - feel better than I have felt for 15 years (except when I gluten myself.. which I'm good at)




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