How Many People Are Actually Self-diagnosed?

[lcarter]

I should have posted this here instead of under another topic. So, please excuse my adding it again, if you saw it before.

QUOTE (bittykitty @ Jul 12 2009, 02:43 PM)

Why should I trust the medical community when they had so many chances in the past to catch it,but couldn't?

Oh! Right on!!! I feel the same way. I am so frustrated with the medical community and the way I have been treated [or more correctly "ignored"] concerning my digestive problems since I was an infant... for over 60+ yrs. Many, many doctors had a chance to catch it...but NOT ONE of them ever so much as mentioned the possibility of celiac. Oh, I have heard "pyschosomatic illness", "nervous stomach", "IBS"- a number of times, and "lactose intolerance"...mind you, all without any testing! So, out of necessity, I am self diagnosed, too -- not because I didn't want a medical diagnosis or try to seek one, but because I never found a doctor that knew anything about digestive disorders [that included 3 gastroenterologist] or one that was interested enough to try and help me figure out what was causing my problems. Now, that the medical establishment is waking up to Celiac, I just can't justify to myself why I would want to submit to the torture I would have to go though by going back on a gluten inclusion diet, just so some doctor "might" see something on an endoscopy test or in blood work. Since beginning the gluten and dairy free diet, for the first time in my life: I have gained a normal weight, have no more mouth ulcers, no more nausea from meals, no more diarrhea and projectile vomiting episodes, and especially, no more ER visits doubled up in pain because my intestines are so swollen they are almost totally closed, etc..... [The only thing I ever found that ended one of these dramatic episodes was to quit eating for 3 days and live only on liquids...followed by 2 days of rice and applesauce...then, gently start back on "normal" food..that is, until the next episode hit. I never did have symptoms continuously. It was episodic and seemed to be more of a delayed reaction that would build up over days. So, it was really difficult to pinpoint the exact cause.] I really could have used some help with professional medical intervention...instead I suffered for years until I decided to try the diet on my own after discovering Celiac on the internet. What a dramatic difference the diet has made in my life!

[mysecretcurse]

Wow, it seems that MANY of us have been let down by western medical doctors.

[ENF]

Wow, it seems that MANY of us have been let down by western medical doctors.

I went to sevaral non-western doctors that were from, and educated in, Russia and China. They weren't any help, either.

[YoloGx]

I went to sevaral non-western doctors that were from, and educated in, Russia and China. They weren't any help, either.

It seems like a doctor trained in Europe would do better since over there this condition is widely recognized since 1950 -- unlike here in the US for the most part.

Bea

[Roda]

I am a blood test/biopsy comfirmed celiac. I did suspect that gluten might be a problem for 6 months before being asked to be tested but I did not do the diet until my diagnosis. It has made it easier for me to stick to the diet with the diagnosis. But, now that I know I can do this, I feel that if any other sensitivities start to pop up I will probably try to figure it out on my own. Unfortunately I am starting to have issues with shortness of breath and tachycardia again so I'll have to go to the doctor to help me with that one. I believe it is because of my chronic low ferritin (last one was 6) but am having a hard time convincing the doctors of that since my blood work shows that I am not anemic just deficient. So for me this is very frustrating.

[ravenwoodglass]

Wow, it seems that MANY of us have been let down by western medical doctors.

Understatement of the year. If I had continued listening to my doctors I would be dead by now. No exaggeration. I thank God for the savvy physical therapist I saw.

[TotalKnowledge]

I am a blood test/biopsy comfirmed celiac. I did suspect that gluten might be a problem for 6 months before being asked to be tested but I did not do the diet until my diagnosis. It has made it easier for me to stick to the diet with the diagnosis. But, now that I know I can do this, I feel that if any other sensitivities start to pop up I will probably try to figure it out on my own. Unfortunately I am starting to have issues with shortness of breath and tachycardia again so I'll have to go to the doctor to help me with that one. I believe it is because of my chronic low ferritin (last one was 6) but am having a hard time convincing the doctors of that since my blood work shows that I am not anemic just deficient. So for me this is very frustrating.

I have learned to pay more attention to my cravings lately. Having been deprived of many nutrients for a long time, I have found that I crave certain foods and feel better after eating them. Bananas for example make me feel much better. I have some nutritional catching up to do.

[ENF]

It seems like a doctor trained in Europe would do better since over there this condition is widely recognized since 1950 -- unlike here in the US for the most part.

Bea

A large amount of credit for Celiac awareness in the U.S. goes to Dr. Alessio Fasano, who is from Italy and Dr. Peter H.R. Green, from Australia. There are other examples, I am sure, but these two doctors have been, and continue to be, a tremendous help.

[Angels~Exist]

I self-diagnosed myself then my doctor agreed I figured out that my symptoms all connected to get one answer- celiac disease. I told my doctor I thought I had celiacs so she looked over my chart and agreed with me. I had been to GIs, GYNs, you name it. They all had the same symptoms on file. My blood test was a false negative, the gluten free diet worked. Then I got the rash and was firmly diagnosed.

[darlindeb25]

A large amount of credit for Celiac awareness in the U.S. goes to Dr. Alessio Fasano, who is from Italy and Dr. Peter H.R. Green, from Australia. There are other examples, I am sure, but these two doctors have been, and continue to be, a tremendous help.

Dr. Green was speaking at one of our support meetings, and he stated, most of the top celiac doctors in America are from foreign countries. I guess they had to come to teach our American doctors.

[freeda]

Everything that I have, I have self-diagnosed and then gotten confirmation from physicians. No one knows my body better than me, so it makes sense. You just have to be an educated patient. I don't blame them. Medicine is inexact.

[YoloGx]

Interestingly enough my mother was in a research program during the 1920's for sprue. Unfortunately however the research seems to have been lost. She was in that program in San Francisco for roughly 14 years. Later however no one believed her except the guy from the Mayo Clinic who retired to a small desert town where my parents worked as archaeologists. So on that level I suppose she can be forgiven for thinking one shouldn't be alarmist and inform her children even though I was diagnosed with celiac sprue as an infant as was my brother with Down's. Nevertheless it is interesting that research on celiac sprue was done here in the SF Bay Area relatively early. It just hit deaf ears...

[Mskedi]

I'm in the process of self-diagnosing. After almost three weeks of no gluten, I can at least say that there have been many positive changes. The real test is going to be when I have my doctor do some blood work in about six months to see if I've been able to absorb any iron. Even if not, I have to say I feel pretty dang good right now, and with my family's history of Celiac, it's probably safe to say I have it, too.

[klala]

I cut it out of my diet in February, planning to do the 2 week thing and then reintroduce it. I never reintroduced it because I stopped having stomachaches every single day and pooping out everything I ate 6 times a day and my eyes weren't bloodshot and I could spend more than 2 hours at the mall without needing a nap and I wasn't bloated every evening scared to go to club meetings and have my intestines making funny noises. I got an endoscopy done 3 months after being off gluten because the doc said that wasn't too late, but my biopsy was totally normal. So frustrating.

[darlindeb25]

What's a "2 week thing"? If you mean eat gluten for 2 weeks then have a 2nd test, 2 weeks will not work. If you are gluten intolerant, then eating gluten once will prove to you that you can't have it.

[BethJ]

Tomorrow I'll celebrate my one year gluten-free anniversary. I had eczema for years and was tiring of having bumps, splotches, blisters etc. The dermatologist would put me on pred and then Rx creams but I knew there had to be some underlying cause. Even he said "something" is causing it.

I started searching the net and discovered DH looked a lot like what I had. The puzzle pieces started coming together when I remembered the mysterious bouts of D and how my father would go days without leaving his home because of it. I also had a lot of discomfort that seemed to come and go without warning.

I decided to try going gluten-free and three days later, my husband happened to mention that the red welts on my neck were gone. Those red welts had been there for at least two years. The creams kept them under control but they never went away. I was amazed and decided to stay on the diet.

About two weeks later, we went on vacation down to the Keys and one night I decided a plate of pasta would be worth a little itchy skin. I was up all night and sick for the next two days. That seemed like proof enough for me.

Over the last year, there were times I started to think perhaps this is all in my head. This is the part of being self-diagnosed that's difficult. A firm diagnosis would eliminate these feelings. Anyway, one night I was depressed and ate a Green Giant frozen vegetable package that contained soy sauce. I also ate one spoonful of my husband's mashed potatoes and gravy. I figured it was such a small amount of gluten, I'd be fine. Oh how wrong I was! My stomach hurt all night and I felt like I had the flu for the next two days. That little indiscretion proved I'm either celiac or very gluten intolerant.

My doctor wrote on my chart that I'm gluten intolerant when I told her about my diet. She didn't seem to think testing would prove anything more than I had figured out. I was quite relieved that she didn't want to pursue it with a myriad of tests which at this point wouldn't show anything anyway.

I'm sorry this is so long. I've been lurking for almost a year and this board has been the greatest source of information and support. You'll never know just how much it has helped. There were times when I felt like a leper but when I came here, I felt at home among friends.

[no-more-muffins]

I was just reading through this old thread and I thought I'd resurrect it because it might be helpful for some of our new members. I was thinking about this thread becasue I still struggle sometimes with the fact that I am self-diagnosed. I think that some people don't take my diagnosis or my food intolerances seriously and I wanted to read this thread for some validation. (No, I am really NOT making this up!)

[StephanieM]

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.

Self-diagnosed here.. Went gluten free at my own hunch, after doc told me, that as a mom of 2 young kids, I was supposed to feel that bad.. Went of gluten 1 1/2 years ago, and symptoms that I lived with forever went away.. Blood test negative because I'd already been off gluten.. Got Genetic testing done to prove it to others, because I knew it wasn't just an intolerance.. I knew it was Celiac. testing came back showing I have 2 copies of the Celiac gene... Doc never even suggested Celiac before I went gluten-free...

[BoydBT]

Tomorrow I'll celebrate my one year gluten-free anniversary. I had eczema for years and was tiring of having bumps, splotches, blisters etc. The dermatologist would put me on pred and then Rx creams but I knew there had to be some underlying cause. Even he said "something" is causing it.

I started searching the net and discovered DH looked a lot like what I had. The puzzle pieces started coming together when I remembered the mysterious bouts of D and how my father would go days without leaving his home because of it. I also had a lot of discomfort that seemed to come and go without warning.

I decided to try going gluten-free and three days later, my husband happened to mention that the red welts on my neck were gone. Those red welts had been there for at least two years. The creams kept them under control but they never went away. I was amazed and decided to stay on the diet.

About two weeks later, we went on vacation down to the Keys and one night I decided a plate of pasta would be worth a little itchy skin. I was up all night and sick for the next two days. That seemed like proof enough for me.

Over the last year, there were times I started to think perhaps this is all in my head. This is the part of being self-diagnosed that's difficult. A firm diagnosis would eliminate these feelings. Anyway, one night I was depressed and ate a Green Giant frozen vegetable package that contained soy sauce. I also ate one spoonful of my husband's mashed potatoes and gravy. I figured it was such a small amount of gluten, I'd be fine. Oh how wrong I was! My stomach hurt all night and I felt like I had the flu for the next two days. That little indiscretion proved I'm either celiac or very gluten intolerant.

My doctor wrote on my chart that I'm gluten intolerant when I told her about my diet. She didn't seem to think testing would prove anything more than I had figured out. I was quite relieved that she didn't want to pursue it with a myriad of tests which at this point wouldn't show anything anyway.

I'm sorry this is so long. I've been lurking for almost a year and this board has been the greatest source of information and support. You'll never know just how much it has helped. There were times when I felt like a leper but when I came here, I felt at home among friends.

Cool Story. I had to tell the dr to test me. it is amazing that they are clueless.

[domesticactivist]

Our son is, but when we talked to our dr she said "why would you put him through testing if you know this is what works?" the obvious positive change plus his classic symptoms and abject fear of reintroducing gluten is enough. He has no desire to be so miserable ever again. Sister and I are going to get some testing done.

[Monklady123]

I was just reading through this old thread and I thought I'd resurrect it because it might be helpful for some of our new members. I was thinking about this thread becasue I still struggle sometimes with the fact that I am self-diagnosed. I think that some people don't take my diagnosis or my food intolerances seriously and I wanted to read this thread for some validation. (No, I am really NOT making this up!)

You could always just make it up and say the doctor diagnosed you. They'd never know and you'd have the doctor's "authority" behind your diet.

[DJ Jess]

I'm new here and this is my first post. If there is somewhere I'm supposed to go introduce myself I will, promise.

I'm self diagnosed. Well, sort of. I'd been complaining to my doc about stomach problems on and off for about 2 years. Additionally, I've had migraines for YEARS, some of which would last 2-3 weeks. Last Spring I saw my doc again for my stomach troubles (alternating C or D, cramping, VERY bloated all the time, yada yada), and I said "You know, I think I've noticed I feel worse when I eat wheat." And she said "maybe you have Celiac, do you want me to do some tests?" I said 'But if I did, wouldn't I KNOW it by now??" (this was before all the recent reading I've been doing...I know better now...) She said "not necessarily" but didn't push me to get tested and I vowed to keep "gathering data" (my idea/term) regarding what foods made me feel good and bad. I haven't been back to see her since, not because of any fault of hers, but I'm busy, etc.

Well over the past few months it had become increasingly obvious that I can NOT eat wheat. Instant pain, then bloating the next day, etc. This in addition to the fact that I catch EVERY cold that comes at me. I had no idea they were connected.

So over the Fall I basically ate hardly any wheat/gluten, would decide "oh, it's probably not that bad", have a cookie, prove myself wrong and start all over again.

It wasn't until a few weeks ago that I REALLY started reading about it and all the bells went off in my head. Migraines, bloating, sinus infections - oh my! :-) So I've been 100% gluten free for about 3 weeks now (including getting new cutting boards, pots, pans, etc.), and am going to see my doc on Friday to tell her of my "information gathering." I realize I've shot myself in the foot with regards to testing now that I've been gluten-free for a few weeks, but I don't mind and I'm sure my doc (whose idea it was in the first place...) will understand and support me. The other day I toasted my Udi's bread in our regular toaster and was really migrainy and spacy/foggy the next day. OH! I also usually get hives after a bath and that has stopped.

So yeah. While I think it's too late to get tested, I think between my doc being the first to suggest it and my anecdotal evidence, I'm confident I'm at LEAST "gluten intolerant" if not all the way celiac. And I don't really need a label. Just a healthy life. I'm an all-or-nothing kind of person and since I already feel better in many ways, I'm confident I don't need the official DX to keep me on the gluten-free diet. Thanks for letting me tell someone who doesn't get all glossy-eyed like some of my friends do. :-)

Jess

[Dixiebell]

Welcome DJ Jess!

It is so good to hear you have been able to get better. Many others here have had similar stories to yours, so you are not alone. Please stick around, ask questions, give opinions and read as much as you can. This is such a wonderful place for support.

[srall]

I'm self diagnosed, and my daughter (7) tested negative, but based on dietary response she's gluten/corn/dairy free. I'll be gluten free for a year this March. Sometimes now I just think I'm crazy and this was in my head, or was something else...like caffeine, or a combination of several things. But then I have to stop and remind myself how last April I was practically shouting from the rooftops "Gluten free is Life Changing" I think things are so second nature now that I just forget how it all was in the beginning. And seeing the drastic changes in my daughter who began her journey in October is also a good reminder as to how much diet effects us. She still has a ways to go though. I think her health was much more compromised than mine.

[mareahf]

I wasn't sick for long but it happened very fast. I had bad diarrhea, losing weight, nausea, headaches, fatigue and knew something was very wrong. I went on WebMD and put in my symptoms. Celiacs disease came up and I remembered how I would crave potatoes and gag looking at bread. I decided to try a gluten-free diet and I felt better in a week! And I keep feeling better the longer I stay gluten-free. I went to a doctor and told him my story. He did not do any test but gave me the Celiac diagnoses. Some say I should get tested but I have done an elimination diet to make sure and I can feel a difference with and without gluten, that's all the test I need.