Poll: Official Diagnosis Or ?

[Nantzie]

There are a lot of newbies lately, and a lot of questions about how important it is to us on the board if they have an official M.D. diagnosis or not.

I know nobody here really distinguishes too much between officially diagnosed and self-diagnosed. We all have to eat the same.

I was just thinking that it would be nice to be able to tell a newbie who doesn't have an official MD diagnosis - "Hey, no problem! 20% of us (or whatever % it ends up being) don't have an official diagnosis. Welcome to the board."

Thanks for responding.

Nancy

[Lisa]

Interesting Nancy, and looking forward to the results of the poll.

[Chicklet]

I voted, self diagnosed here. Found out through a message board where someone was talking about their celiac and their symptoms which sounded just like mine. A little search on Google lead me here and a few other places. Did some reading, went gluten free, 3 days later no symptoms. Challenged after a month or so, yup, can't do gluten. So glad to find out, been having neuro symptoms since the year 2000, heartburn for a long time, IBS symptoms for a year or so, but no more.

[Carriefaith]

I had a postive tTg blood test and a positive biopsy.

[Canadian Karen]

I think this poll will help put people at ease.....

Those of us "officially" diagnosed don't distinguish between that and an "unofficial" diagnosis. Given the lack of knowledge and the reluctance of the medical field to accept gluten as poison, it's not surprising most people stumble upon the answer themselves.....

After all, the bottom line is "We're all in the same boat"!!!

Hugs.

Karen

[2Boys4Me]

I voted for Ty.

Positive bloodwork and biopsy.

[Nooner]

Negative bloodwork while still on gluten.

Enterolab results positive for gluten sensitivity and malabsorbtion. Positive dietary response.

Then I went out and found a smart GI that knew the Enterolab and dietary response could only be caused by celiac disease.

I voted for self-diagnosed, because I already knew what it was when I saw the GI.

[zansu]

Dr told me not to bother with blood tests because they were expensive and unreliable. Endoscopy (diff Dr) only took 1 sample which was negative.

gluten-free test: gastro symptoms gone within days, dropped 15 lbs in a few weeks (I was an overweight presenter). Unintentional challenge CLEAR result. gluten-free.

No doubts, but no "official" diagnosis.

[ravenwoodglass]

No spot for me to vote really, I was diagnosed by a doctor, an allergist and confirmed by my GI when a reintroduction of gluten (gluten challenge) resulted in D and intestinal bleeding so bad that they couldn't do the endo. I was negative on the blood tests but did have a positive MRI for brain white matter lesions that were just blown off by my neuro with an "I don't know but lots of folks have them and they are meaningless". Of course he then offered me a prozac. At that point I was having severe memory problems, balance issues so bad I could not walk without canes, joint and muscle problems that made waking up and moving before I took my meds hell and had had D daily for over 15 years. In other more advanced and less pharmaoriented countries those lesions are diagnostic of celiac. So I was diagnosed by a doctor, but not with blood test or endo.

[spunky]

Self-diagnosed by reading, reading, reading!

I feel a little shy about chiming in too often here, just because I'm not "official". But these days...just about 5 weeks short of one year gluten free...feeling SO MUCH BETTER!

I won't ever eat gluten again...not on purpose, anyway, and hopefully not by accident either.

[emcmaster]

I voted, self diagnosed here. Found out through a message board where someone was talking about their celiac and their symptoms which sounded just like mine. A little search on Google lead me here and a few other places. Did some reading, went gluten free, 3 days later no symptoms. Challenged after a month or so, yup, can't do gluten. So glad to find out, been having neuro symptoms since the year 2000, heartburn for a long time, IBS symptoms for a year or so, but no more.

That's pretty much my story to the T except I didn't have neuro symptoms and my IBS-like symptoms had lasted for 2 years.

[Jestgar]

Unintentional challenge

I hate those "unintentional challenges"

[dlp252]

I basically found out by dietary trial, then since I had been gluten-free, went for the Enterolab testing. My doctor later did the blood testing and endoscope, but we both knew it wouldn't show anything. So, he wouldn't officially diagnose me with Celiac. Oh, and as a mainstream doctor he doesn't accept the Enterolab results, but feels that dietary response is proof enough.

[Mtndog]

I voted for #1 but it was a long hard road. I had bloodwork that was considered inconclusive, a negative biopsy, but a positive dietary response for the first year. It was confirmed by a new GI via genetic testing. So I have the genes and the positive dieatry response.

[Canadian Karen]

Self-diagnosed by reading, reading, reading!

I feel a little shy about chiming in too often here, just because I'm not "official". But these days...just about 5 weeks short of one year gluten free...feeling SO MUCH BETTER!

I won't ever eat gluten again...not on purpose, anyway, and hopefully not by accident either.

Of course you're "official" Spunky. Who gives a rat's behind whether you actually heard those words from a doctor "You have celiac disease". Gluten = poison, period. End of discussion. Whether it's full blown celiac or gluten intolerance, there is absolutely no difference between the two.

So don't worry, you're "official" just like the rest of us! LOL!

Hugs.

Karen

[lenjac]

I voted for #1, but only had bloodwork done, chose not even bother with a biopsy. Had extremely positive dietary response and didn't feel the scope was worth the hassle. Also didn't like the GI I went to for past scope. Live in rural area and not many doctors to choose from. Also last visit with him after the scope made me feel like I was the quack! Probably misdiagnosed with GERD and IBS for over 10 years. Took a whole lot of pills for years and now I take none for GI related problems. Also hypothroid though...

[jayhawkmom]

In the cases of both myself and my daughter - self diagnosed. However, we both had highly suspicious bloodwork and issues on endoscopy, but no apparent villi damage, so no diagnosis.

[Creative-Soul]

Diagnosed by Doctor as Celiac via very positive dietary results. He told me I didn't have to /shouldn't bother with all the other stuff, as many results can be inconclusive/false negative...

[tiredofdoctors]

I think this poll will help put people at ease.....

Those of us "officially" diagnosed don't distinguish between that and an "unofficial" diagnosis. Given the lack of knowledge and the reluctance of the medical field to accept gluten as poison, it's not surprising most people stumble upon the answer themselves.....

After all, the bottom line is "We're all in the same boat"!!!

Hugs.

Karen

I think you're right -- it doesn't matter HOW you were diagnosed, if you're gluten intolerant, celiac, or if gluten affects you negatively in ANY way, we all ARE in the same boat. Hopefully with Celiac and gluten intolerance becoming more and more prevalent in both print and on the news, MD's will get the hint and start taking this much more seriously. Well said, Karen!!

[Eliza13]

I'm not too sure what to do about my situation. I like my doctor because he was the very first doctor in my lifetime to mention the possibility of celiac. I had a long list of symptoms, so he told me to go off gluten. Some of my symptoms were: rash on elbows, head and bum; diarrhea 7x per day; extreme fatigue; hair loss; abdominal distention; swollen feet; knee pain; itchy body; and amenorrhea....the list can go on and on.

I also had consistently high prolactin and white blood cells. It was also found that I had a high amount of fat in a stool sample.

Although I am very happy that I met my doctor (no other doc ever told me to go off gluten), there is one problem. He was aware, but not aware enough because I went off gluten without having the standard celiac tests. We all know the utilty of being tested once off gluten for an extended period.

Here's the thing though.....most of my symptoms vanished fairly quickly when going off gluten. I had an extremely positive dietary response. The most remarkable was finally getting my period. Ironically, this was a surprise to me (the resumption of menstruation). I thought I was gonna fix my bathroom problems, and was extremely amazed when my period started coming, that the rash went away, the swollen feet gone, the knee pain gone, fatigue gone......you get the picture.....

So now I will never be tested. There is absolutely no way that I will go back on gluten, but sometimes I do wonder. Some say they would want formal testing and I can see why, but in my case the before and after symptoms were just too great. The periods resuming alone is enough for me, or is it?? I don't know....I struggle with this one alot. What do you all think?? I need advice!

Take care,

Deb

[luvkin]

My Doc did it with just diet alone and my life is so much more positive now that I will never go back to eating gluten. I feel no reason to find out through testing.

[SpikeMoore]

Deb

My situation is very, very similar to yours. The GP said that this recurrent itchy rash may be DH, so I read about it and its connection to celiac. I went on the diet when I thought about my use of Alka Seltzer over the years and all of the other related things fit. I got negative blood work after 4 weeks or so of gluten-free. I did eat gluten 5 days prior to the test.

My GP said since the blood work was negative, I don't have celiac. We all know this statement cannot be made. And my skin biopsy was inclonclusive, perhaps because we took an actual lesion, not unaffected skin next to a lesion. But I don't want another chunk out of my butt.

The improvements in my well being were astounding to me. Circumstantial evidence maybe, but will I worry about proving to my doctor that I have celiac by eating gluten for 2+ weeks (ouch) and taking chunks out of my butt and intestine (double ouch)? Nope. I feel great and I like it.

[par18]

I had positive biopsy but would rather have found this site a couple of years prior to that and found out through positive diet response. There are two main reasons for this: The first is that it would have been cheaper and the second is that I would not have been so ill! There is something to be said for people who figure out things on their own. An "official" diagnosis and about $ 2.00 would get you a cup of starbucks coffee. The "piece of mind" so many seek with a positive diagnosis cannot be worth the physical and emotional trauma that comes with it. The more people who do this on their own the better it will be for everyone down the road. Once you respond to the diet look foward and not back.

Tom

[jayhawkmom]

The "piece of mind" so many seek with a positive diagnosis cannot be worth the physical and emotional trauma that comes with it.

Here! Here!!

Though, I'm finding that without an "official" diagnosis, some people (other doctors, hospital staff, etc) don't take ya seriously. When are they going to WAKE UP????

[Generic]

I had 2 biopsies and both were inconclusive. Since I had positive dietary results the Dr. had no doubt I had celiac. I was diagnosed back in 1988, they didn't have blood tests or genetic testings back then.

-Laurie