How Common Is Self-diagnosis?

[Molecular Dude]

Greetings to all,

I've been gluten-free for about 4 years now, but have never had a formally confirmed diagnosis of celiac or gluten-sensitivity. My wife and I just figured it out on our own back then, and after I started to feel better, I found that every time I "cheated", I paid the price. So, now I never intentionally cheat, and as a result, none of the standard tests will ever be able to confirm my self-diagnosis (unless I first want to make myself miserable for a good while, which seems ridiculous).

Anyone else have a similar experience?

Thanks

[tarnalberry]

Oh yes, many of us. There's a very wide range here all along the spectrum between the very formal "blood work, biopsy, follow-up biopsy" to "totally self-diagnosed by diet, no doctor ever involved". (You can see where I am from my sig below.)

Welcome to the board!

Happy gluten-free eating!

[lizard00]

Yeah, that's kind of my story too. While it hasn't been 4 years, I did an elimination diet on my own and don't really have any desire to be diagnosed if I have to go through a few months of feeling bad just to get an official diagnosis. Most people on here will tell you that the proof is in your response to the diet, and I totally agree!

[Bananna]

Me too! and I know about 2 others as well. My reactions now to even the smallest amount of wheat is horrible. It's just someone suggests the diet and you try it an never want to go back!

[MrMark]

...So, now I never intentionally cheat, and as a result, none of the standard tests will ever be able to confirm my self-diagnosis (unless I first want to make myself miserable for a good while, which seems ridiculous).

Anyone else have a similar experience....

I am self diagnosed, but my sister is diagnosed with celiac and chrone's so I had some help in figuring it all out. gluten-free has been the best thing I ever did for my health, without a doubt. I suffered bipolar my whole life and it suddenly went away about 3 days gluten-free. But wait, bipolar doesn't just go away, or does it? Interestingly, when I accidentally consume a little gluten, the bipolar comes back to visit for a few days. Reason enough for me to live gluten-free. Interesting link below:

Open Original Shared Link

[Ursa Major]

After being told I was a hypochondriac, and nothing was really wrong with me (and at the same time being really ill for 50 years), I self-diagnosed myself and started the gluten-free diet. And I have no intentions of EVER going back!

My two oldest daughters and their children are gluten-free now, with amazing results in them and their kids. My youngest daughter has been gluten-free after being diagnosed by Enterolab and is finally doing well. My son and another daughter have plenty of symptoms, but choose to be in denial.

Nobody needs a doctor to confirm that certain foods make them sick, and that they feel better when avoiding these foods. I just wished I would have known what gluten was many years ago! Unfortunately, I only found out a little over two years ago, no thanks to my doctors.

[Sondi]

I am semi-self diagnosed. My gastroenterologist offered to do a test during an endoscopy but I, being as yet uninformed on things, refused. Wish I had allowed him to but too late. Instead, he suggested I do a 'trial run' on gluten-free diet. WOW! what a difference! My fingernails are pink instead of blue, my skin started to clear (DH, I believe), pains disappeared and so on.

I've been 66 years trying to get a sensible diagnosis. Nearly died as an infant as I couldn't tolerate any milk product, regardless of source. I have been able to consume milk products since age2 but they do make me bloated if I have too much so suspect I'm sensitive to lactose, too.

Odd thing is that I also 'react' to non-gluten grains as well as gluten ones so suspect I am sensitive to all grains, possibly. When I recover from multiple surgeries and can find a good naturopath, I'm going to have allergy testing done.

Just wish it hadn't taken so long to find out about my sensitivity to gluten etc...Guess a lot of us have 'been there, done that'.

Had to go 'off diet' for a week during a hurricane/storm due to unavailability of power/foods etc and I ended up virtually unable to walk, among other things. I'm gluten free permanently after all that agony and more!

Sondi

[darlindeb25]

I am a self diagnosed celiac too. Not a doubt in my mind. My sister and I were equally sick for years, dealing with doctors who could not figure out what was wrong with us. She became severely iron deficient, along with other vitamins and minerals and I developed panic attacks, with my deficiencies. I got divorced and was without medical insurance when she finally was diagnosed with celiac disease. Her husband found it on the internet, which was no easy task 8 yrs ago. Her doctor at the time, laughed when she asked to be tested for it, but found her to be adamant. He apologized to her when he found celiac disease and realized how truly sick she actually was with it--worse case he had ever seen! I couldn't afford to be tested at the time. After 3 months of gluten free, she convinced me to go gluten free too, she knew I was celiac too. She will be gluten free 8 yrs in March and me in July, our dad has been gluten free 3 yrs this last Nov. I have a son whom I am sure is celiac too, but his doctor tells him he doesn't look celiac, so he doesn't need to be tested! Do we have 2 heads, or what?

[VioletBlue]

I think it's pretty common. I also depends on how you classfy self diagnosis. I had done an elimination diet and found a problem with wheat. I read up on wheat allergies and came accross Celiac Disease. A huge light bulb went on over my head. I was what I would now call gluten light for about a month before I took the blood test and the antibody numbers were still significant. That along with my medical history was enough to convince me. The previous ten years of my life had read like a diagnostic manual for Celiacs with doctors unable to explain most of it. The blood test and the reaction to the diet and the anemia and GERD and what not were enough for me. The doctor would have liked to do a biopsy, but having already been through a kidney biopsy I had no desire to go through any kind of internal biopsy ever again. My rebound in the last year has been significant so I'm satisfied that I've come to the right conclusion without a biopsy.

The bottom line I think is that it's your body. If you want or need blood tests and biopsys then go for it. If you don't, if the reaction to the diet is enough just get on with your gluten free life

[JustMe75]

Do all of you who self diagnosed tell people you have Celiac? Like when people ask why you can't eat something, what do you say? I feel like since I don't have a diagnosis I am making it up if I say I have celiac. It would be so much easier to say I had something real instead of saying that wheat (most people look at you like your crazy if you say gluten) makes me sick. Saying it makes me sick doesn't get through to people how sick. They say just have a little then.

I figured it out on my own too. Blood tests were negative, HLA DQ2 test was positive, all allergy blood work was negative, but an amazing response to the diet. I had symptoms I didn't even know were symptoms that went away when I went gluten free.

Can one of you who I think are smarter then a doctor diagnose me and say its celiac so I can pretend I have a diagnosis?

[Molecular Dude]

My situation is identical to yours. I respond very negatively to gluten, but do not have a "real" diagnosis. So, I just tell people that I have celiac, or something very similar, and go from there. When they ask why I don't know for sure, I'll go through the whole explanation, if time permits. Otherwise, I'll just tell them that the tests are often inconclusive, and the end result would just be to do what I do anyway regarding diet. This usually proves satisfactory, but I'm often astounded by how difficult it is for people to realize how prevalent wheat (gluten) is in everyday food products - especially restaurant personnel!

[KAG]

I have found out that most people don't know what wheat is let alone gluten. And they definitely don't understand the difference between an intolerance and an allergy. I usually just say I have food allergies and I feel better not eating bread and dairy. Occasionally someone will be more interested and I will explain more but most of the time I just use the term allergy and it suffices. Most people don't know what they are eating, anyway. I know before I had problems with food, I didn't. When someone is interested in talking about food I like to bring up issues of high fructose corn syrup, hydrogenated oils, not getting enough omega 3's, etc. Most people don't want to learn what they are eating is bad and don't want to change. I didn't want to change, but now I am so thankful that this difficulty was given to me. I am proud to say that I CHOOSE to eat healthy and I am benefiting from it, as well as my kids.

Another answer I like to use is "I love bread, it just doesn't like me!"