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How Many People Are Actually Self-diagnosed?


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123 replies to this topic

#91 BethM55

 
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Posted 30 January 2011 - 10:14 AM

I am completely self diagnosed, to the annoyance of my (then) primary care doctor. (We've since changed insurance, I had no issues with my previous PMD.) Since many fibromyalgia folks seem to be gluten intolerant, I decided to give it a try. And I felt better. Not a miracle cure, or suddenly turning cartwheels kind of better, just less sick.

It's been two years now, I'm still gluten free, and it's become a way of life. I still have some fibro symptoms, and arthritic and tendinitis type problems, but I am able to work part time and even have some life beyond that. I'll not go back to eating gluten. I've made that clear to my doctors. I'm too scared of the damage it will do, to eat gluten so the doctors can be satisfied with tests. Let them eat the gluten, they can have my share!

Let me also say that I am so very grateful for the support and information and wisdom on this board. Having this resource with all you wonderful people has made this journey easier and even a bit more fun.
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Self diagnosed gluten intolerant, gluten free since 12/09.
Diagnosed with fibromyalgia about 15 years ago. Fibro symptoms have improved but not gone away with gluten free living.
Osteoarthritis, mostly in hands and neck and lumbar spine. Not sure if going gluten-free has helped that problem, but it certainly can't hurt. (Am very grateful that so far no sign of the RA that is devastating my mother lately.)
Considering a dairy free trial. Considering.

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#92 CGCaliGirl

 
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Posted 30 January 2011 - 10:28 AM

I feel really lucky because both my primary doc and my new GI doc basically diagnosed me just by my experience with symptoms and going gluten-free on my own. I did it backwards and went gluten-free by intuition before getting tested. Blood tests were neg obviously but she and the GI doc both understood that it was because I had gone gluten-free already and both said "yeah, sounds like you have it." GI said he'd like to see me get the gene test just to see what it says but there's not rush and I honestly don't think I'll do that. I feel so much better now, and so many other issues have cleared up that I didn't even realize were related, I know I'll not cheat and feel like I do have the 'blessing' of the two docs, even without the blood test, etc. I feel very lucky in that regard.
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#93 Kimbalou

 
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Posted 30 January 2011 - 01:16 PM

I am new around here. All my tests results were negative, yet I know there is something wrong and I believe it relates to gluten. ( I am in the process of doing stool testing with enterolab).

I want to know how many of you celiacs are actually biopsy-diagnosed and how many of you are "self-diagnosed" celiacs or gluten intolerant individuals.

My drs. basically sent me away saying "you have IBS, go home and take immodium, you don't have celiac". When I asked them if they had any "non celiac gluten intolerant" patients they said, "no". That says a lot. I dont' believe it though.


I've had IBS for probably 20 years. I went to my new dr., since my other one transferred away, and I told her about my symptoms. She immediately said she would run tests for Celiac,etc. The celiac test came back highly positive. I was happy she figured it out! I also had a biopsy to confirm it. This was my first appointment with her, so I was really impressed. I have never actually told a Dr. before about my IBS, I just figured I had a sensitive stomach and needed Immodium all the time! (I am not happy I ignored it for so long). I don't really think Celiac can be missed through the proper blood work. But, if you do think you have a gluten sensitivity, just go on the gluten-free diet! It can't hurt you, and it's actually not that hard. I am sensitive to a lot of foods, but eating gluten-free is not hard. Just follow the diet and see how you feel!
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11/19/10 diagnosed with Celiac disease after positive blood test
12/14/10 Biopsy positive for Celiac disease

#94 sandiz

 
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Posted 03 February 2011 - 11:07 AM

I too am self diagnosed. My doctor basically laughed at me, did a blood test that came back false positive. Years ago I had allergy test done which showed that I am allergic to wheat. Was told to quit my job at a bakery but no body ever told me to not eat wheat. Have been gluten-free since Jan 10, no more headaches, brain clearer,not so gassy, BM is more regular, etc. Have had many test I feel because doc refuses to think Celiac and is focused on 1 symptom at a time. It is frustrating and tiring trying to get a diagnosis and get healthy.
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#95 jenngolightly

 
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Posted 03 February 2011 - 12:39 PM

I find it so awesome that people have self-diagnosed. I'd never heard of Celiac before my (new at the time) doctor told me about it. I'm quite embarrassed to say that I didn't know what gluten was, either. I was quite blissfully ignorant to have a thick file full of other diagnoses and various pills or treatments for fixing them (actually they're all electronic now so we can't really say "thick file" anymore, can we?).

What's terrific, though, is that I've become great at self-diagnosing other problems since the Celiac diagnosis 3 years ago. I'm so much more aware of things in general - of my own and my family's health.
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Jenn
dx celiac 9/2007: gluten-free 9/2007
corn intolerant: corn-free 5/2010
nut allergy: nut-free 8/2010

#96 farnickle

 
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Posted 03 February 2011 - 01:57 PM

I was happy to see this topic!

Because I am completely self-diagnosed... I'm not much of one for going to the doctor. Let's see.. an overview:

2007 general misery in the digestive tract. gave up lactose. improvement.
2008 became vegan. gi tract felt even better.

still feeling that my physical energy wasn't what it should be. inside i felt like a much more intense, vitally alive person. outside, i was a bit of a weenie. frequent headaches, hypoglycemic, very emotional, groggy in the mornings, generally low stamina.

2010
APRIL intense headaches / migraines almost every day. pushed through, working 40 hours, exercising -- nothing else.
JUNE completed my first half-marathon. had a migraine the day before.
AUGUST gave up running altogether. it became too much.
OCTOBER could barely make it through a mellow yoga class. realized how weak i had become.
NOVEMBER researching, found celiac.com, began to suspect a gluten intolerance.
DECEMBER gave up gluten for 1 week. had a piece of toast & slice of pizza. suffered a bad migraine for the next five days. I was convinced. I began to build up my yoga strength, run a few miles per week, and learn to eat around gluten.
JANUARY can drink milk! can eat cheese! my gi tract must be healing!!! too much dairy still causes discomfort, though.

I'm learning slowly, though. I'm only just realizing the connection between gluten and mood. Also, realizing that food "made in a plant that processes wheat" can do me in just like eating a piece of toast. :(

Just like with lactose intolerance, it will probably take me about a year to figure out what my system can tolerate, and how to coexist with my strange intestines.

i'm working up the confidence to tell the world "i'm gluten intolerant!" without a doctor's diagnosis. this forum is helping! :rolleyes:

thank you all for contributing to this HELPFUL resource!!!
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#97 Melstar23

 
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Posted 04 February 2011 - 02:25 AM

This topic has been really good, it makes me feel less alone and crazy. At first I thought I really needed an official diagnosis of what was making me so sick. Doubled up in pain, struggling to get through work, not able to move from the couch, losing all my strength that I had built up at the gym, extremely tired... I didn't even think that bloating, bad wind and yellow, floating stools were a problem - I'd had that for years so thought it was normal. To me this pain had just come from nowhere, and my doctor ran so many tests and scans and kept telling me there was nothing wrong. With nothing left to do but lie at home taking pain killers that were not even working anymore. I experimented with my diet. I cut out diary, no difference with or without. Gluten was my next idea because I knew that causes problems in some, and I started feeling better. After 2 weeks I had no pain, had my energy and strength starting to come back, no wind, bloating and my poo didn't float anymore. I tried eating gluten again, and the pain came back exactly as before. I cut it out again and it started going away again.

I told my doctor, he said it was Gluten Intolerance not celiac and that it would be ok if I ate gluten every now and then. He got me to eat gluten again for 10 days and got me to have a full celiac test (which was not a full celiac test I found out later) and the gene test. I came back positive for the gene and negative on the other test. Dr gave me a printout on Gluten Intolerance (I don't know if he ever read it himself) which said that non-celiac gluten intolerance is a psychological eating disorder which is related to a person's desire to control food. That made me mad because I didn't want to be like this, I wanted to eat gluten! He told me to stay off gluten and wait a few months to see if my low iron level improve and then I would be able to get a referral to a GI specialist.

I kept off gluten, really enjoyed feeling well, but I wanted a diagnosis. I found another doctor, she said my symptoms and experience with diet could only be celiac and there is no such thing as non-celiac gluten intolerance. She checked my tests from other doctor and told me I had not had the right tests done and got me to have more blood tests and gastroscope even though I had now been gluten free for 4 months. She said that damage and immune response can't heal in 4 months. Again I was completely negative on all tests. She then suggested that I might have psychological IBS that has been brought on by stress! I completely reject that diagnosis.

GI specialist I saw was useless, he dismissed my symptoms and response from diet. He said based on my tests, I am not gluten intolerant or celiac. He also said my symptoms were mostly likely caused by stress and were a conincidence that they go away off gluten and come back on gluten. He said I should try eating small amounts of gluten, but ultimately I am in control of what I eat and if I believe I have a better quality of life off gluten - it's my choice.

You know what, I do have a much better quality of life now. Those doctors have no idea how sick I felt, they didn't have to live it, they don't care. One of my aunties has cut out gluten now too, and another is considering it. They have had over 30years of bad GI symptoms and exhaustion, amongst other symptoms and always been told by Dr's that there is nothing wrong, this is just what their life is like. The auntie off gluten has never felt this good in her life! They are not getting testing because they don't care what Dr's say anymore.

Trust your body.
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#98 Ciglee

 
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Posted 19 February 2011 - 01:29 PM

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?
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#99 Ciglee

 
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Posted 19 February 2011 - 01:33 PM

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...
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#100 mushroom

 
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Posted 19 February 2011 - 04:23 PM

Most of us who diagnose ourselves actually refer to ourselves as being gluten intolerant. The reason we have to resort to self-diagnosis is because there are so many doctors like those in the preceding posts who will not test for celiac, who dismiss symptoms, who diagnose IBS at the drop of the hat, who ply patients with pills for symptoms rather than trying to find a cause for the symptoms. We can diagnose that our body reacts negatively to gluten, it does not take any genius to do that, much less the genius who wears an MD hat and calls himself DOCTOR. Most of them don't even deserve that honorific. That do not even know that their precious tests will be negative if you have not been eating gluten for four months. They think that people with non-celiac gluten intolerance (if they even believe in this diagnosis :P ) can eat 'gluten lite.' They actually think that people are masochistic enough to make up in their head :blink: symptoms of celiac disease so they can put themselves through the torture of learning how not to eat gluten, and then live without it for the rest of their lives. I guess they figure we do it to seek attention. They sure have some weird ideas :rolleyes:
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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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#101 Ciglee

 
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Posted 20 February 2011 - 09:13 AM

hey Mushroom....what exactly do you eat? I see what you don't eat...what do you eat?
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#102 mushroom

 
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Posted 20 February 2011 - 11:37 AM

FOOD!!! Any meat or fish. bacon and ham, rice, Sweet potatoes, root vegetables, swiss chard, broccoli, brussels sprouts, cabbage, zucchini, pumpkin, asparagus, avocado,all fruits except citrus (and tomatoes :P ) lettuces, watercress, onions, garlic, bread (made from rice, sorghum, buckwheat and tapioca flours, pasta, all dairy, crackers and cheese, nuts and seeds and, of course, 'SHROOMS :lol:,
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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

Celiac.com - Celiac Disease Board Moderator

#103 Jestgar

 
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Posted 20 February 2011 - 11:44 AM

Choosing to eat in a way that makes you feel good is a simple thing. Why is it such an issue to you if the people that choose such a diet describe themselves in a way that gets them the best results?
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#104 srall

 
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Posted 20 February 2011 - 11:49 AM

I'm just so happy I found a place where other people who also couldn't get a diagnosis from a doctor understand what I'm going through. And most people have been supportive. It scares me to think how much my daughter would have to have deteriorated before she would actually be diagnosed by a doctor. Our pediatrician has been very supportive, but also told me how horrific it is for some children before they actually get the celiac diagnosis.
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#105 zus888

 
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Posted 20 February 2011 - 12:18 PM

Just because a doctor doesn't diagnose you doesn't mean you DON'T have celiac. There are SO MANY people with UNDIAGNOSED diseases because medicine is not a perfect science. Not only are docs apt to err, but the tests themselves aren't 100% accurate. You can find that information practically anywhere. I am in full agreement that people need to take their health into their own hands and be involved 100%. You are your only true advocate. Putting that much faith in your doctor - or any doctor - can be dangerous.

I think one's physical response is the best indicator of what's going on. Some docs suck. Some are awesome. And most are somewhere in between. Everyone is apt to make a mistake or overlook something. And some people have egos the size of the Earth. I never trust a doctor that feels absolute in their assessment and won't answer questions with an open mind.

FYI, I'm at the other end of the spectrum. My doc has diagnosed me with celiac, but I don't 100% believe his evaluation. At least, he is very willing to answer all my questions and consider any other possibility and do whatever tests I want to give me peace of mind.
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Suzanna




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