How Many People Are Actually Self-diagnosed?

[Ciglee]

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

[mushroom]

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 ) 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 ,

[Jestgar]

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?

[srall]

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.

[zus888]

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.

[WhenDee]

*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.

[Teri Lou]

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

[Dixiebell]

Hi Teri Lou.

DH stands for Dermatitis Herpetiformis.

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/dermatitis-herpetiformis-skin-condition-associated-with-celiac-disease/

[kellerg2]

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.

[hnybny91]

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!

[psawyer]

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.

[Marz]

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.

[Jamie-S]

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.

[ILoveflowers74]

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.

[Ciglee]

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...

[Jestgar]

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

Why does it matter to you what other people say about themselves?

[zus888]

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.

[mushroom]

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.

[mcc0523]

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!

[etta694]

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.

[etta694]

There seems to be some kind of resistance in this country for doctors to even think of celiac as a possible diagnosis. One person told me it was the lack of drugs etc. needed to cure it--those no push by the pharmaceuticals and no real money in it for surgery unless say you get cancer of the gut etc. All I can say is that it is very noticeable absence and very weird. It is an attitude however that is gradually changing--especially now that there is a simple blood test that can indicate if you have the potential to have it or not. An extra reason doc's seem to avoid the diagnosis is that they think its a "fad" plus it creates a very limited diet which they themselves often couldn't imagine following. Pretty crazy, eh? Since for those who do have celiac its not worth being miserable and sick just to fit in and have the usual diet etc. etc.

When my dad first displayed Crohn's disease in the 50's, the doctor scoffed at him and told him there was no such thing... it was just a fancy name for irritation of the bowel. This is the pattern, unfortunately, for the medical profession. The new (and Celiac/Gluten problems are sure not new) problems fall through the cracks until it is more widely publicized in journals. They also HATE to be told what is wrong... that's BAD!!! They have just enough information to be dangerous sometimes. That is not discounting the doctors who understand. Thank God for them. At least there are some...

[etta694]

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...

To read the forum over time... you will hear the underlying response by a majority of the medical profession to REAL symptoms that are debilitating. It is very frustrating to have doctors decide they absolutely know if you have something based on science that has not progressed far enough to test for all the indicators. Not unlike using fingerprint technology before DNA testing became accepted in forensics. Obviously there is something going on with all these people who are testing negative but displaying positive symptoms. The testing is still in infancy.. just as all science progresses, so will accuracy in testing for Celiac and gluten intolerance.

[Gemini]

Why does it matter to you what other people say about themselves?

That was my first thought, Jestgar. Sounds like someone has a major chip on their shoulder and maybe thinks officially diagnosed Celiacs are superior to those who don't have a diagnosis?

I am officially diagnosed, yet it took 25 years to get there. Then, I figured it out as I was wasting away at home, unable to go to work because I was so deathly ill. I actually had to go back to my thyroid doctor and request the blood work because my PCP was such an idiot about it. It was either acid reflux (which I have never had in my entire life) or IBS.

I commend anyone with the self reliance and self esteem to NOT question what their bodies are telling them and to ignore a doctor who may be killing them. It doesn't matter a fig whether they have full blown Celiac or gluten sensitivity. I am in no way offended or irritated by anyone calling themselves a Celiac when they know gluten is a huge problem and cannot get a doctor to take them seriously. Doctors won't change anytime soon, either, because they just will not address food issues. I mean, if everyone ate as they were supposed to and got better on their own, appointment books would be much emptier!

[IrishHeart]

That was my first thought, Jestgar. Sounds like someone has a major chip on their shoulder and maybe thinks officially diagnosed Celiacs are superior to those who don't have a diagnosis?

I am officially diagnosed, yet it took 25 years to get there. Then, I figured it out as I was wasting away at home, unable to go to work because I was so deathly ill. I actually had to go back to my thyroid doctor and request the blood work because my PCP was such an idiot about it. It was either acid reflux (which I have never had in my entire life) or IBS.

I commend anyone with the self reliance and self esteem to NOT question what their bodies are telling them and to ignore a doctor who may be killing them. It doesn't matter a fig whether they have full blown Celiac or gluten sensitivity. I am in no way offended or irritated by anyone calling themselves a Celiac when they know gluten is a huge problem and cannot get a doctor to take them seriously. Doctors won't change anytime soon, either, because they just will not address food issues. I mean, if everyone ate as they were supposed to and got better on their own, appointment books would be much emptier!

I agree about the doctors and their lack of knowledge.

In 12+ YEARS of seeing doctors, specialists, having many tests run, scoped, prodded and poked, spending thousands and thousands of dollars ...developing a hundred or so bizarre and crippling symptoms, suffering multiple miscarriages,burning nueropathy, shrinking down to bare bones and losing my hair and the ability to think straight or sleep, losing major muscle mass and years of my life spent in excruciating pain, wondering if I would die before anyone helped me......not ONE single "medical" professional person asked me "what to do you eat?"

....except an acupuncturist and a PT--both "gluten savvy". (this was after I had figured it out myself, but it is interesting THEY knew what to ask)

I was treated by an ND and a holistic MD and neither one of them asked me either!!!! Just gave me tons of herbals, etc. to take. (did NOTHING, just spent more $$$ for nothing...sigh)

In fact, a Gastro's NP screamed at me "You can eat gluten! That's not your problem! You have IBS and GERD! Take these pills!! (antacids and anti-depressants)

I had taken prescriptions for years and they never helped, so this last time, I threw the scripts in the wastebasket and went gluten-free and never looked back.

My PC doctor, after 3 years of telling me "I don't know" what's wrong with you, and at one point, suggested I take xanax and see a psychiatrist for the anxiety I developed ...?!! (mind you, his OWN children have celiac!!)...

finally said, with deep apology, "You are right! OMG!! You need to be gluten-free right now"....sigh

That was my "diagnosis"

If there is no drug for it, or money to be made from getting you well and out of their care, they are not interested in resolving the health problems they see on a daily basis that are likely related to diet. It's a shame, really and I wonder how many people are suffering needlessly as I did--as many of you have. Millions are spent on antacids alone in this country.

I think we need a "gluten revolution" in this country and get people to see what we already know. Gluten is killing us all. My cousin (a celiac)said to me recently, "I wonder how much healthier (and taller ) we would have been our whole lives if we had only known?"

Cannot go back, only forward. At least, now I know. I guess I am self-diagnosed because I saved my own life.