Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


  • You've found your Celiac Tribe! Join our like-minded, private community and share your story, get encouragement and connect with others.

    💬

    • Sign In
    • Sign Up

Archived

This topic is now archived and is closed to further replies.

I hate gluten!

I Found My Diagnosis Not My Doctor, And It Bothers Him.

Recommended Posts

It's such a shame that sooo many dr.s are quick to prescribe a pill instead of a diet or lifestyle change....it all comes down to $$$.

I would disagree with this statement, and you provided the reason why:

so,

he went to the dr. to get some Adderol!!

well, little does this dr. know, the problem is not solved by Adderol (speed). It's solved by my stepson not texting 20 times an hour while studying, blasting music, and not eating right or getting enough sleep. I know exactly what the problems are. I've witnessed firsthand how he "studies." He doesn't understand what he's studying, and NO PILL IS GOING TO HELP HIM UNDERSTAND! he does fine in his other classes.

We, as consumers, have taught the medical profession that we want our problems to be solved with a pill. Why bother suggesting a diet change when it won't be followed anyway? You'll just go to a different doctor until you can get the pill you want.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

Share this post


Link to post
Share on other sites

Re: Doctors quick to prescribe medications instead of lifestyle changes.

I urge commentors here to switch doctors if you find yourself visiting one who does not prescribe lifestyle changes as a first course of action (when appropriate). My situation may not be typical or representative but it certainly is typical of those who visit my doctor and my HMO.

I was tested for bone density and I was found to have osteopenia. Did my doctor prescribe medication? No, he 'prescribed' weight bearing exercise and vitamin D/calcium. I asked my pharmacist for the correct amount of vitamin D/calcium.

I was also tested for cholesterol and we discovered that my HDL was too low. Did my doctor prescribe medication? No, he 'prescribed' weight loss, a low fat diet, and exercise.

Not all doctors are so fast to prescribe pharmaceuticals so shop around like you do for everything else to find a good one.

Share this post


Link to post
Share on other sites
I urge commentors here to switch doctors if you find yourself visiting one who does not prescribe lifestyle changes as a first course of action (when appropriate). My situation may not be typical or representative but it certainly is typical of those who visit my doctor and my HMO.

I'm certainly glad you added that last sentence. I think maybe your doctor and HMO are atypical.

I have very vivid recollections of my US HMO's, and not for the right reasons. I had been given a cortisone shot by one PCP of one HMO and had a horrible reaction (face swollen like a balloon, palpitations and insomnia). I tried to schedule an appointment with him and he cancelled it, I tried to talk to him on the phone and he refused, (relaying through his nurse that my symptoms could not have been caused by the shot), and this after research listing those very same possible side effects. Eventually I wrote this a****** a polite letter setting forth the above and asking why, if the symptoms were not caused by the shot, he would not schedule an appointment to find out the cause of these rather alarming symptoms. I received a letter back firing me as a patient.

No PCP in the HMO was accepting new patients at the time and I went for a period of four months without a PCP. Eventually the only one I could find to take me as a patient was a GI who was too busy doing endoscopies and colonoscopies to have time to see non-lucrative patients. After 6 months a PCP finally started accepting new patients. I have no idea how those who had just joined the HMO got treated. Possibly I was initially blacklisted by the HMO for having the temerity to write a doctor a letter :blink

I will not bore you with my other experiences. I just want to let you know that yours is not typical. By the way, I did not ask for the cortisone shot. He insisted I needed it and it did absolutely no good (since all the cartilage was worn away in my knee and I had to have the knee replaced).


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

Share this post


Link to post
Share on other sites

Actually, I think my HMO and doctor are typical. Thanks for your reply. I have had a fantastic experience with my healthcare provider - they are doing a great job!

Share this post


Link to post
Share on other sites

When I told the first GI I went to about the same symptoms you told yours, he told me it WAS NOT consistent with IBS, but to go ahead and take one Immodium a day and then if that didn't work to take two Immodium a day, and then if that did not work, to go see my PCP!

Gee - It's not like I have an Immodium deficiency!

And, of course, the Immodium did not work! Hopefully the next GI will be more helpful.

Nicole

My stupid doctor told me that my uncontrollable diarrhea causing me not to even make it the 20 feet from the kitchen to the bathroom, causing me to dump a whole load in my pants, running down my legs was consistent with IBS!!!

Share this post


Link to post
Share on other sites

I called my doctor and left a message, I said:

1) I was correct about my diagnosis.

2) You are danger to your patients.

3) I am grateful I am smarter than you.

:lol:

I felt much better. I didn't even care if she got the message.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

Share this post


Link to post
Share on other sites
Actually, I think my HMO and doctor are typical. Thanks for your reply. I have had a fantastic experience with my healthcare provider - they are doing a great job!

I have to say, in all my reading on this board, I have counted you as the third positive story about a doctor respecting and properly treating a patient, as regards Celiac disease. I am certain there are plenty I've missed, I can't possibly read everything. But in two years, 'typical' is not a word I'd use to describe. Perhaps I should spend more time in the "Pre-diagnosis, Testing & Symptoms" area, maybe there will be more good stories there. There certainly aren't many in the doctors section.


If you're going through hell, keep going. ~Winston Churchill

Share this post


Link to post
Share on other sites
I called my doctor and left a message, I said:

1) I was correct about my diagnosis.

2) You are danger to your patients.

3) I am grateful I am smarter than you.

:lol:

I felt much better. I didn't even care if she got the message.

I bet you DID feel better! My doctor didn't diagnose me, but at least he didn't argue when I did.


If you're going through hell, keep going. ~Winston Churchill

Share this post


Link to post
Share on other sites
I have to say, in all my reading on this board, I have counted you as the third positive story about a doctor respecting and properly treating a patient, as regards Celiac disease. I am certain there are plenty I've missed, I can't possibly read everything. But in two years, 'typical' is not a word I'd use to describe. Perhaps I should spend more time in the "Pre-diagnosis, Testing & Symptoms" area, maybe there will be more good stories there. There certainly aren't many in the doctors section.

I think you are making the mistake that Tim-in-VA earlier described - see this link:

http://en.wikipedia.org/wiki/Availability_heuristic

The availability heuristic is a phenomenon (which can result in a cognitive bias) in which people base their prediction of the frequency of an event or the proportion within a population based on how easily an example can be brought to mind. Simply stated, where an anecdote ("I know a American guy who...") is used to "prove" an entire proposition or to support a bias, the availability heuristic is in play. In these instances the ease of imagining an example or the vividness and emotional impact of that example becomes more credible than actual statistical probability.

Share this post


Link to post
Share on other sites

Yes, but remember, SBJ, that it can work in both directions. Your experiences with doctors have been good, so you would expect everyone else's to be the same. I am glad you have had good experiences and that you have had a celiac diagnosis that has been clear and apparent. Unfortunately, for many, this is not the case, so I think there has to be acceptance of both sides of this argument since our perspectives are definitely coming from opposite ends of the spectrum.

laurie

Share this post


Link to post
Share on other sites
It's not like I have an Immodium deficiency!

:lol: :lol: :lol:

I'm going to remember that the next time somebody wants to give me a new prescription. It's one thing to replace hormones your body is supposed to be making on its own (insulin, thyroid hormones, cortisol, etc...)... it's another thing to introduce man-made concoctions that may or may not be tolerated. :blink: Something to be cautious about.


Gluten free 08/08

Son has IgE allergies to peanuts and corn

Hashimoto's, MCAD, pregnancy loss at 17 weeks

HLA-DQB1*0302 (celiac), HLA-DQB1*0301 (gluten sensitive)

Serological equivalent 3,3 (subtype 8,7)

Extensive family history of autoimmune disorders and related symptoms

Share this post


Link to post
Share on other sites
I think you are making the mistake that Tim-in-VA earlier described - see this link:

http://en.wikipedia.org/wiki/Availability_heuristic

The availability heuristic is a phenomenon (which can result in a cognitive bias) in which people base their prediction of the frequency of an event or the proportion within a population based on how easily an example can be brought to mind. Simply stated, where an anecdote ("I know a American guy who...") is used to "prove" an entire proposition or to support a bias, the availability heuristic is in play. In these instances the ease of imagining an example or the vividness and emotional impact of that example becomes more credible than actual statistical probability.

Every example given in that article goes like this: "My grandpa smoked 3 packs a day and lived to be 100, so smoking is safe."

It's a way of thinking that takes ONE sample, or incident, or anecdote, and imposes it upon everything else.

Like this: Say ( I have no idea what the real numbers are, this is just an example) 10 out of every 20 people who smoke cigarettes daily will become ill from it, with emphysema or lung cancer or heart disease. However, your grandpa smoked ten packes a day and lived to be 100, so you don't believe that smoking makes anyone ill.

Conversely, say there are 60 people with Celiac diagnosis doctor stories, and 3 of them are positive. The rest are negative. For the person with the positive story, it is difficult to accept that other people go an average of 11 years from onset of symptoms to diagnosis, because THEIR doctor figured it out right away! THAT is the person with the availability heuristic. The person who uses the other 57 as their governing attitude towards the subject is not.

I think it is right and proper for a community of people who have been mistreated by the medical system in the US to try and educate others how to avoid the pitfalls of that system. There are countries where children are routinely tested for Celiac before kindergarten. We deserve to expect no less here.

Thank you for bringing that up, I learned a new word today.


If you're going through hell, keep going. ~Winston Churchill

Share this post


Link to post
Share on other sites

The whole problem with this discussion is that there are absolutely no statistics I am aware of on the diagnosis of celiac disease, whether it be done: immediately upon presentation of an appropriate cluster of symptoms; by accident or surprise; after years of presenting these same symptoms to one or multiple health care providers, perhaps with the inclusion of additional, and more debilitating symptoms; by request of the patient who has come to suspect the diagnosis; or, not at all, leaving the patient to stumble across the diagnosis accientally themselves. This is why we provide the anecdotal evidence of our experiences.

I believe that this anecdotal evidence is beginning to influence the medical community into considering this diagnosis more often than formerly, and thus serves a useful purpose, regardless of the validity of anecdotal evidence in supporting various arguments.


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

Share this post


Link to post
Share on other sites

Without the anecdotes shared by tiredofdoctors, Canadian Karen, Ursa Major, and several others on this very board, I would never have known that I had a problem with gluten, nor that the potential for more and more serious autoimmune disorders existed for me.

Without going off gluten, I would not have gotten rid of or lessened numerous symptoms and medications.

Without going off gluten, I never would have discovered that at least 2 of my children have serious issues with gluten.

Without going off gluten, I would never have known enough to diagnose (yes, diagnose) 3 people who, on my recommendation, tested positive for gluten intolerance or celiac disease.

Anecdotal evidence has served many of us far, far better than Western Medicine. Doesn't mean that there is no value in Western Medicine, but that there IS value to anecdotal evidence.

Share this post


Link to post
Share on other sites

There is a difference between sharing your experiences, and declaring that your experience is true for everyone.

If I have a bad experience with one doctor, does that give me the right to condemn all doctors?

If one Jewish person cons my friend out of money, do I now assume that all Jewish people are bad?

If one black man knocks a woman out in my parking garage, do I now declare that all black men are evil?

If my child has a bad reaction to a vaccine, do I now campaign to abolish all vaccines?


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

Share this post


Link to post
Share on other sites
There is a difference between sharing your experiences, and declaring that your experience is true for everyone.

That is precisely what I was trying to point out. I am not sure if this remark was directed at me, it wasn't clear, but I was certainly not condemning the entire medical profession; in fact I have two very caring doctors (both women incidentally) who are doing their best for me right now. And there have been others. All in all, I would say my experiences with doctors have been about 50% good, 25% not-so-good and 25% totally unsatisfactory. It is human nature to remember most vividly the horrid ones, and we tell our stories so that others may possibly learn from them.

A few posters may be condemning (or embracing) the entire medical profession but I believe most are simply providing anecdotal evidence and resent being tarred with the same brush.


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

Share this post


Link to post
Share on other sites
A few posters may be condemning (or embracing) the entire medical profession but I believe most are simply providing anecdotal evidence and resent being tarred with the same brush.

OK. Fair point. I'll try to be less ambiguous when I respond. It is these shared experiences that help us learn about ourselves, and I don't want to discourage that, even accidentally.

ANYWAY topic of the post is: I found my diagnosis, not my doctor, and it bothers him.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

Share this post


Link to post
Share on other sites
There is a difference between sharing your experiences, and declaring that your experience is true for everyone.

If I have a bad experience with one doctor, does that give me the right to condemn all doctors?

If one Jewish person cons my friend out of money, do I now assume that all Jewish people are bad?

If one black man knocks a woman out in my parking garage, do I now declare that all black men are evil?

If my child has a bad reaction to a vaccine, do I now campaign to abolish all vaccines?

I have not done anything like this, and I really resent your attempting to paint a racist or religious comparison.

I have never condemned all doctors,nor have I campaigned to abolish all vaccines.

If THOUSANDS of children have severe reactions to vaccines, shouldn't they be properly investigated?

If it takes an average of 11 years to get correctly diagnosed with celiac, shouldn't something change?

If the pharm industry is unethical, aren't we allowed to be angry when we point this out, especially those of us who have been victims of their greed as well as our doctors' ignorance?

Shouldn't we be CALLING for those changes?

Share this post


Link to post
Share on other sites
I have not done anything like this, and I really resent your attempting to paint a racist or religious comparison.

I have never condemned all doctors,nor have I campaigned to abolish all vaccines.

If THOUSANDS of children have severe reactions to vaccines, shouldn't they be properly investigated?

If it takes an average of 11 years to get correctly diagnosed with celiac, shouldn't something change?

If the pharm industry is unethical, aren't we allowed to be angry when we point this out, especially those of us who have been victims of their greed as well as our doctors' ignorance?

Shouldn't we be CALLING for those changes?

This is not about you. It's about people being willing to back up their statements, and to be more aware of how they are using what they believe to influence others.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

Share this post


Link to post
Share on other sites
Every example given in that article goes like this: "My grandpa smoked 3 packs a day and lived to be 100, so smoking is safe."

It's a way of thinking that takes ONE sample, or incident, or anecdote, and imposes it upon everything else.

Like this: Say ( I have no idea what the real numbers are, this is just an example) 10 out of every 20 people who smoke cigarettes daily will become ill from it, with emphysema or lung cancer or heart disease. However, your grandpa smoked ten packes a day and lived to be 100, so you don't believe that smoking makes anyone ill.

Conversely, say there are 60 people with Celiac diagnosis doctor stories, and 3 of them are positive. The rest are negative. For the person with the positive story, it is difficult to accept that other people go an average of 11 years from onset of symptoms to diagnosis, because THEIR doctor figured it out right away! THAT is the person with the availability heuristic. The person who uses the other 57 as their governing attitude towards the subject is not.

I think it is right and proper for a community of people who have been mistreated by the medical system in the US to try and educate others how to avoid the pitfalls of that system. There are countries where children are routinely tested for Celiac before kindergarten. We deserve to expect no less here.

Thank you for bringing that up, I learned a new word today.

I added bold to the part of the post I'm referencing, left the rest for context.

I think the point really would be that you can't draw any valid statistics from either side because of the sensational nature of bad doctor stories and the less dramatic nature of good doctor stories. The issues isn't using the 57 as a guide line in how you look at stuff. The problem would be if you tried to say that 95% of all people aren't diagnosed in a timely manner.

Share this post


Link to post
Share on other sites

Physicians, like any other profession, follow the Bell curve. Some are great, some are horrendous, most are average. Seek the great, avoid the horrendous, educate the average.

There. I'm glad I could wrap that all up for you all so neatly! :P

I found my celiac too, and now my APN looks for it.

Share this post


Link to post
Share on other sites
Your doctor certainly is terrible! I hope your next one is better. I think I must be the only poster here who has had a good experience with his doctor!

My story is almost exactly the opposite. In fact, if not for my doctor I would never have known that I have celiac disease and I would be harming myself right now without even knowing it. I am forever indebted to him and the pathology department.

I realize my story is different than most, but there are two sides to every coin. I'm glad we are both on our way to recovery even though we took different paths to get there.

You are not alone sbj. If it weren't for my doctor I'd still be trying to figure out what the heck was wrong with me too! I'm so thankful to my doctor! Even after my blood test came back negative she still sent me to do the endoscopy because she said that there is a chance for false negatives with blood tests! What do you know...I have the endoscopy and it's positive! She also directed me to this site, which has made this transition soo much easier and has scheduled follow up apts so we can keep an eye on my nutrient levels in my blood until they are back to normal. All this because on my first apt with her she did a simple blood test. She does one with all her new patients. She saw that my iron was low and was concerned....I told her my iron and ferratin levels have been low since high school, I'm just anemic. That's when she explained to me that anemia is a symptom not a disorder! The good docs are out there!


Gluten Free 10/11/08

Negative Blood test 08/08

Positive Biopsy 10/08

No family members diagnosed...but Symtoms seem to be the same.

Father- Diverticulitis

Paternal Grandmother Died from Colon Cancer when she was 38.

If you're going through hell, keep going.

-Winston Churchill

Share this post


Link to post
Share on other sites
I think you are making the mistake that Tim-in-VA earlier described - see this link:

http://en.wikipedia.org/wiki/Availability_heuristic

The availability heuristic is a phenomenon (which can result in a cognitive bias) in which people base their prediction of the frequency of an event or the proportion within a population based on how easily an example can be brought to mind. Simply stated, where an anecdote ("I know a American guy who...") is used to "prove" an entire proposition or to support a bias, the availability heuristic is in play. In these instances the ease of imagining an example or the vividness and emotional impact of that example becomes more credible than actual statistical probability.

Another thing to remember with this link is that wikepedia is not a credible source because anyone with a computer can go in and change the information to anything they want.

I also would like to add that I am one of the people with a very pleasant experience with my doctor. We can't judge people and their experiences. Everyone is different. I think it's fair to say that very little is known about this disease in this country and that includes our doctors. I remain hopeful because I believe awareness is growing and I do all I can to educate people whether they are receptive or not. I think that is all we can do. Arguing about whose doctor sucked and whose didn't and whether there are more crappy doctors than good doctors gets us no where. We all need to be doing our part to help educate the public so everyone can have as easy a diagnosis as I did and then have the information available to them to make the difficult transition into the gluten free lifestyle.


Gluten Free 10/11/08

Negative Blood test 08/08

Positive Biopsy 10/08

No family members diagnosed...but Symtoms seem to be the same.

Father- Diverticulitis

Paternal Grandmother Died from Colon Cancer when she was 38.

If you're going through hell, keep going.

-Winston Churchill

Share this post


Link to post
Share on other sites
Another thing to remember with this link is that wikepedia is not a credible source because anyone with a computer can go in and change the information to anything they want.

Do you have a problem with the specific link or just the fact that there is a chance that someone could have put incorrect information on wikepedia?

Share this post


Link to post
Share on other sites
Another thing to remember with this link is that wikepedia is not a credible source because anyone with a computer can go in and change the information to anything they want.

.

True, but they are expected to reference their sources, so you have the opportunity to verify their statements.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

Share this post


Link to post
Share on other sites