Dr.s Are Frustrating Me...

[Aerin328]

I think there are innumerable patients who have experienced similar frustrations as Tiffany mentions above. Doctors today are only human, it is true. They follow a set trained set of logical "Ifs"/"Thens" in an attempt to heal their patient's ailments. The truth is that doctor's are, regardless, unable to diagnose and solve millions and millions of patients' issues effectively with their current techniques and understanding. Even in 2006 we are only now beginning to understand at a glimpse how the human body actually works... I am convinced that in 40 or 100 or 200 years they will look back at us now and say, "Wow. Dark Ages' medicine." We need to find a way to encourage our medical professionals to continually and vigorously seek out of the box thinking: a less black and white diagnosis/treatment approach in favor of a wholistic understanding of the human system in its entirety which can lead to ACTUAL treatment. This site is dedicated to the confused and lost sheep who have been (accidentally) led astray by their (many) doctors and have had to turn to each other: specifically, regarding gluten-intolerance and Celiac's disease. Medical professionals are doing a poor job at helping the masses; so we are now leading ourselves. We are not doctor-hating, but we have suffered untold amounts of anguish over professional medical incompetence.

[tarnalberry]

Medical professionals are doing a poor job at helping the masses; so we are now leading ourselves.

Actually, I think this is the sort of thing that is *hurting* our cause. If you look at the actual numbers, medical professionals are doing a good job at helping the masses. The problem is one of perspective. The person who comes in with something that doesn't fall in the '90% of cases I see are this' that the doctor is used to doesn't care ONE BIT about the other 90% of what the doctor has seen; he/she cares about his/her case, and a successful outcome. If it's different, the fact that the doctor has successfully treated the VAST majority of the other patients one way will actually only serve to DELAY that patient's treatment. Doctor's do a good job at helping the masses, and many times even the one-off cases, but it's the ones that present more differently than that which cause large volumes of pain and grief to the patients.

[Carriefaith]

Lisa, I'm sorry that you are not having much luck with the ER doctors and that you haven't been well. One good thing is that you got a colonoscopy. Just make sure that you are sedated for that. I had a colonoscopy and I was partially sedated and could feel everything.

[plantime]

No actually I am a medical student doing my residency who also has Celiac Disease. So I think I am quite well informed thank you very much.

As for 2kids4me, I never said anything about you, but just out interest, as a vetenarian, do you think it's possible to get sick from inhaling gluten particles the size of microns?

Hi Andrew. I am glad that you are studying medicine, it is a challenging subject! I wish you the best of luck at it! That said, I am also glad that you have celiac, since maybe you will be able to recognize it easier in your patients.

[rinne]

Andrew, I'm curious about how you were diagnosed, if you would like to share your story I would be interested. Did it have anything to do with your decision to enter medical school?

[2kids4me]

No actually I am a medical student doing my residency who also has Celiac Disease. So I think I am quite well informed thank you very much.

As for 2kids4me, I never said anything about you, but just out interest, as a vetenarian, do you think it's possible to get sick from inhaling gluten particles the size of microns?

Actually I have never said I was a vet - my HUSBAND is the vet. I am an animal health technologist and have also published articles about many diseases in companion animals.

My experience with immune mediated disease is first hand as well as researched in medical texts and talking with experts in the field. I ask many questions. My husband has collegues who are board certified pathologists and communicate regularly about scientific matters such as immune mediated disease. (currently the over vaccination of pets and vaccine related injection site sarcomas in cats)

As for your question about gluten - yes according to our pediatric gastroenterologist who also researches celiac - any gluten can cause problems. Some are symptomatic - others have no outward symptoms but they will have villious atrophy if the exposure is over a period of time. This doctor cited an example of a patient having severe symptoms continue after being on a gluten-free diet for 6 months, his diet was scrutinized... and then they asked him what he had been doing at work (he was in construction) - he had been helping with the drywall installation at a jobsite. Drywall dust has wheat starch particles. He had worn a regular mask but was still getting sick from inhaling these particles. He bought a special filter air mask (like one would wear when working with noxious gas). His symptoms improved dramatically after that.

My son had few symptoms when diagnosed - yet he had completely flat villi with mitotic figures. He does not show major outward signs when acccidently glutened. My daughter reacted violently to cc in communion wine at church. They put a small piece of the wheat host in the wine (she did not get the piece, just a sip of wine), 2 hours later she was in bed with a migraine and stomach ache. She also played in a cleaned out grain bin with cousins (this was before I even clued in that inhalation could be an issue).... withing 2 hours she was pale and had a major headache, and nausea. The only time she gets migraines is when she has ingested gluten.

Every person is different - you may not have outward signs from gluten inhalation or "minor cc".. there are others that do.

If you are medical student then you understand better than most that doctors can never know everything. In vet medicine we also look for the "horse instead of the zebra", we know that "common things happen commonly" and a patient with multiple symptoms usually has one disease behing those symptoms.

But there are the unusual presentations of any disease, neurologic symptoms that have nothing to do with the brain, etc

Medicine is challenging but rewarding career, and I second the comment that because you have celiac, you will be better able to recognize it in patients, as well as the disorders that can co-exist with it. Right now my son had an appt with his endo last Tuesday - looks like his thyroid is a target now as he has a nodule and it is swollen on one side. Hope someday someone will be able to stop autoimmune reactions. My son is only 11 and his immune system has already targeted his islet cells, small intestine and now probably thyroid.

Any of your fellow medical students studying polyendocrine failure?

Also my other passion is creating awareneess of Kawasaki disease. I hope you are aware of it and will act promptly. My daughter was outside the normal age group for it (she was 10 yrs old) and it was not recognized until after the damage was done to her coronary arteries. I got a referral after taking her back to the GP 3 times. She had a fever for 11 days, nothing could bring it down, her feet peeled, she had rashes. I was told initially - it was virus and not to worry. I wish now that our regular doctor knew the symptoms and that it CAN happen to older kids.

[Nantzie]

I love science and scientists. Truly. We have quite a few scientists on this board. And the ones who come in shocked at so much talk about paranoid sounding things like cross contamination have the most to learn from us. It's possible, Andrew, that if you aren't being careful about cross contamination, you're having more sick feeling days than you should. It's one of those things that sounds paranoid until you think about it. For example, I've got two small kids who aren't gluten-free. If I give them gluten-containing food, and forget to wash my hands before I eat, I get sick. Every single time. I also get sick from using hair products that have gluten in them. I'm just a girly-girl and I'm always fussing with my hair. I just have found it easier to not eat or touch my food until I wash my hands. That way I don't have to worry about it. Does that mean that I consider cross contamination as a part of my daily life. You bet. But I do it without really thinking about it. The best way I saw it described was being compared with handling raw chicken. It's really not such a big deal. You take the chicken out of the package, put it in the pan, throw away the wrappers, wash your hands, and go on with your life. Ignoring the fact that you should wash your hands after handling raw chicken, doesn't make the possibility of salmonella go away. No more than not washing your hands, if you have celiac, makes that possibility of getting sick go away. Will you get sick every time you touch raw chicken if you don't wash your hands? Maybe not. Will a celiac get sick every time they touch gluten and don't wash their hands? Maybe not. But so many of us spent years and years (18 years for me...) being sick all the time, that even risking the possibility of a single day chained to a toilet again, makes washing our hands or considering cross contamination a threat to our well-being, a brief and simple thing to do. It's not paranoia. It's just washing your hands, or putting a clean plate or paper towel down. It's really not such a big deal. Takes 10 seconds. Big whoop.

As far as Lisa is concerned, she has a long history and story here that she has shared with us. If she were my daughter, I would be camped out in my GI doc's office, making friends and hoping that between the doctor and us, we might be able to find answers for her. If he didn't have answers, I'd be taking her to every recommended GI in 1000 miles to help her.

Even as much as they want to, doctor's don't know everything, and they can't fix everything. Not because the doctor isn't passionate or dedicated, or well-trained or well-read, it's just that science is just at a certain point at this very moment. Twenty years ago celiac was still considered a very rare condition. Now it's estimated to effect 1 in 130 people. Or 1 in 250. Or whatever the latest ratio in the latest study is. The fact is it's not the one case in an entire career, as it used to be believed.

So, Andrew, pull up a chair, read the archives, consider the information, try some more extreme measures than you've been doing in regard to your celiac, ask questions, and keep an open mind. Maybe you'll feel better looking out for cross contamination, and maybe you won't. Everyone just has different levels of sensitivity.

Lisa, I hope you're feeling better soon. It's less than a month to your tests now. I know it's a long time still, but somehow it sounds better than over a month like it was at first.

Hugs,

Nancy

[Aerin328]

The problem is one of perspective. The person who comes in with something that doesn't fall in the '90% of cases I see are this' that the doctor is used to doesn't care ONE BIT about the other 90% of what the doctor has seen; he/she cares about his/her case, and a successful outcome. If it's different, the fact that the doctor has successfully treated the VAST majority of the other patients one way will actually only serve to DELAY that patient's treatment. Doctor's do a good job at helping the masses, and many times even the one-off cases, but it's the ones that present more differently than that which cause large volumes of pain and grief to the patients.

You are correct Tarnalberry, I stand corrected. What I meant to say was simply that there are MANY people who are not being helped by modern medicine. I did not mean to imply doctors are not doing a good job in general. It's just that I've seen way too many people go unhelped, and it's very frustrating.

[debmidge]

Don't get me started on this topic

[ravenwoodglass]

No actually I am a medical student doing my residency who also has Celiac Disease. So I think I am quite well informed thank you very much.

Andrew, I don't think you are as well informed as you think you are, with all due respect. I'm wondering at what age you were diagnosed, I suspect it was young enough to avoid some of the problems we late diagnosis folks are dealing with. I was told from childhood that I had IBS, when my son was born he was in the 65th percentile, by a year of age he was in the -10. When I addressed my concerns for him I was told that he 'was just a small kid' he was tested for thyroid problems and had Xrays to check his bone growth and they then threatened to take him away because they thought I was starving him. He had digestive problems all his life and we were told they were emotional in origin and he didn't want to go to school. When my daughter started having stomach pains we again got the 'it's in your head' diagnosis and she was put on a succession of psychotropic drugs that caused suicidal ideation and cutting behaviors. It wasn't till I was finally diagnosed with celiac 40 years after my symptoms first appeared that my kids were tested. They both showed positive in blood tests. My son's diagnosis came to late to help his growth, he is now an adult male with severe growth stunting in the long bones of his arms and legs and just 5 feet tall. He is a very intelligent, handsome and sensitive young man who has only had one significant other at the age of 23 because most young women won't look past his height. Both my son and I could have been poster children for celiac and it was NEVER even tested for. Please do not belittle people who have lost years of their lives to the ignorance of modern US pharmamedicine. I lost both my Mother and my twin brother at young ages due to complications of unrecognized celiac disease and I had the horror of hearing my DD tell me the family would understand if I committed suicide about 6 months before I was diagnosed. The pain and effects on the entire body that undiagnosed celiacs deal with is very real. So is the ignorance of many doctors. I don't hate doctors but I distrust them so much at this point that I wouldn't even go to the ER when I crushed my fingers last week for fear they would poison me. My biggest fear at this point is that I may need hospitalization and the food they give me would cause a repeat of the severe intestinal bleeding and that it would be ignored. I even had an ER doctor toss a container with about a cup of blood that I brought in during my last bout with severe CC, they never believed I was passing more than a couple drops so I brought it in to show them. He commented to the nurse that it was chicken blood. Just because a doctor has made it through a med school in the US does not mean they know anything about celiac.

[elye]

I'll quickly jump in here...fascinating thread. Lisa, you're Canadian as am I, and we are both in provinces where the health care system is severely flawed, where waiting lists for essential, often life-saving proceedures is months and sometimes over a year long. Sure, in theory Canada has always had one of the best health-care systems in the world, where it is free and everyone has access. But things are a changin', I'm afraid, and at least up here the less-than-adequate care many of us receive from doctors, particularly in the ER, is due to the docs and nurses being completely overworked. They simply do not have the time or energy to give the proper attention needed, because we just don't have the money to hire enough doctors, and doctors are leaving Canada for greener pastures with better work conditions. It's quite alarming, and Lisa, I'm so sorry you are suffering from this political mess. I hope you get your tests soon, and get a rare doctor with time to listen. Sometimes it makes me tempted to move to Europe...

[Carriefaith]

I'll quickly jump in here...fascinating thread. Lisa, you're Canadian as am I, and we are both in provinces where the health care system is severely flawed, where waiting lists for essential, often life-saving proceedures is months and sometimes over a year long. Sure, in theory Canada has always had one of the best health-care systems in the world, where it is free and everyone has access. But things are a changin', I'm afraid, and at least up here the less-than-adequate care many of us receive from doctors, particularly in the ER, is due to the docs and nurses being completely overworked. They simply do not have the time or energy to give the proper attention needed, because we just don't have the money to hire enough doctors, and doctors are leaving Canada for greener pastures with better work conditions. It's quite alarming, and Lisa, I'm so sorry you are suffering from this political mess. I hope you get your tests soon, and get a rare doctor with time to listen. Sometimes it makes me tempted to move to Europe...

Waiting times in the ER here in Canada can be ridiculous, like 4-6 hours! And once you get in, they treat the problem as best as they can, check a few things, and then send you on your way. When I was in the ER last week, I was told that they can't do allergy testing to tell me what I am for sure reacting to. I was disheartened, all I wanted to know is what was causing my heart problems, breathing problems, the feeling of passing out, and the fact the my throat felt like it would close over. They said that they don't test for allergies in the ER, when I know that they could have done some simple blood tests right then and there. Now I'm waiting to see a specialist, which could take a long time! This frustrates me!

[Fiddle-Faddle]

[color=#FF0000

Thankfully at home, I had 2 Prednisone that I got last time I went to ER in case I couldnt find the pharmacist that nite, I took one last nite when I went to bed, and the pains are nowhere NEAR as bad as they were yesterday!

~lisa~

I'm sorry you were given such a runaround by people who are supposed to help you. However, taking prednisone without medical supervision is unbelievably foolish. You're really messing further with your immune system there.

Maybe the tests seem unecessary for you because you don't understand why they're ordered. Maybe it was to rule out acute pancreatitis, appendicitis, acute episode of Chron's disease which can all cause severe abdominal pain/death. Perhaps your docotor wasn't so stupid/useless after all. Maybe she can better evaluate your disease then you give her credit for.

I actually agree with Andrew here. If Lisa was having appendicitis or pancreatitis and they didn't test her for it, they would have been opening themselves up to a huge malpractice lawsuit (not to mention losing the patient!), However,

[Carriefaith]

Oh yes, and I would also like to add that when I was in the ER they sent a nurse in with a sandwich and milk to give to me so I could take prednisone! Ah! The doctor knew I had celiac disease and a milk allergy. I don't think that there was much communication between the doctor and that nurse!

[Fiddle-Faddle]

Sometimes it amazes me how many people are on this board blaming doctors for all their problems. These are the people who also claim they get sick from touching or inhaling gluten and say they have allergies to 50 different types of foods and have 5 different very rare diseases. then when the gluten free diet is not working they think that they're ingesting microscopic quantities of gluten from "cross contamination".

Sorry, Andrew, but you are being SO condescending here, it's disgusting. I have never been through what these people have been through, but I wouldn't presume to not believe them. There is where Western Medicine is a total failure. I realize you are probably spouting what other doctors have told you, but they just don't know any better.

Someday, you might find yourself (like probably everyone ELSE on this board) KNOWING that something is wrong with either yourself or your child--and no doctor will believe you.

In my case, there are too many of these incidences to count, but the most important one was where I KNEW my 6-week old son was turning yellow, but the ped tried to insist first that I was an incompetent, hysterical mother, then that it was because my husband's Japanese heritage (even though HIS skin isn't yellow!). It turned out that my "perfectly healthy baby" (his words) was in congestive heart failure because of multiple heart defects.

I think just about every one of us on this board has a history of doctors dissing us like this, so maybe now you can understand why many of us have lost respect for doctors and the medical system in general.

[jerseyangel]

Oh yes, and I would also like to add that when I was in the ER they sent a nurse in with a sandwich and milk to give to me so I could take prednisone! Ah! They knew I had celiac disease and a milk allergy. I don't think that there was much communication between the doctor and that nurse!

Yikes Carrie--she obviously didn't look at your chart!

[2kids4me]

ER cant test for allergies, they can treat an allergic reaction..but I do know that labs only do basic stuff after hours. They can do a lot of lab work after hours but not allergey testing. Same is true for vet medicine.

Allergy testing is sent to specific labs (open Mon - Fri in the day). It also requires follow up from a doctor so the referral is best made by a physician who will see you again.

In June - I waited 4 hours with my daughter - when she was finally seen, she was admitted and worked up in detail - she ended up in surgery the next morning for appendectomy. The cases that prompted the delay were - asthma attacks in babies, accidents etc - all of which would take priority over a vomiting kid with fever. Actually I almost left the ER cause she stopped vomiting, it was the nurses who said - it may be just the flu but please stay... an hour later her fever spiked ot 40.9 and she was vomiting bile everywhere.

The waiting times are ridiculous - I agree - but there are good doctors/staff . If we made our patients wait 2 hours, the clients would never come back. ... but then they are paying out of pocket.

In Canada, I think part of the problem is that because we dont pay up front - the system is used as convenience. One lady in town, didnt want to take time off work so she went to ER after hours to have her infected toe looked at - how silly is that??

People usually do not take their animals to the vet after hours unless it is an emergency.... becasue they ahve to pay and after hours fee + the exam fee. Makes one think twice before going.

With any possible allergic reaction - you should have been treated promptly - cant believe they made you wait - it is one of the criteria we use in animal ER when we have multiple patients - breathing issues are at the top...

But we cant test for allergy causes after hours either - we treat for the reaction and have them come back - usually weeks later because steroids / antihistamines interfere with the accuracy of allergy testing (false negatives).

[rinne]

I'll quickly jump in here...fascinating thread. Lisa, you're Canadian as am I, and we are both in provinces where the health care system is severely flawed, where waiting lists for essential, often life-saving proceedures is months and sometimes over a year long. Sure, in theory Canada has always had one of the best health-care systems in the world, where it is free and everyone has access. But things are a changin', I'm afraid, and at least up here the less-than-adequate care many of us receive from doctors, particularly in the ER, is due to the docs and nurses being completely overworked. They simply do not have the time or energy to give the proper attention needed, because we just don't have the money to hire enough doctors, and doctors are leaving Canada for greener pastures with better work conditions. It's quite alarming, and Lisa, I'm so sorry you are suffering from this political mess. I hope you get your tests soon, and get a rare doctor with time to listen. Sometimes it makes me tempted to move to Europe...

Emily, I so completely agree with you. I'm in Winnipeg and finally saw a gastro on May 6, the blood work was done right away, they did a CT scan on July 19th and the endoscopy and colonoscopy are scheduled for September 28. That is nearly five months! These are acceptable wait times when someone has melted (lost 30 pounds) and is suffering extreme pain. Fortunately the gastro brought up Celiac, although he didn't tell me anything about it, he just asked if anyone in my family had it. Yes, a sister and once I read the information and found this place I went gluten free. I know that means there may not be any damage and I may not have an accurate diagnosis because of it but I don't need anyone to tell me anymore that gluten is a poison for me.

Lisa, I know I would think twice about going to Emergency because I think they are overstressed and they are often teaching opportunities for residents. I do not want to be in a position to be practiced on. I say this because I have been in teaching hospitals and experienced inexperience. I hope you are feeling better today.

[Carriefaith]

ER cant test for allergies, they can treat an allergic reaction..but I do know that labs only do basic stuff after hours. They can do a lot of lab work after hours but not allergey testing.

That's interesting, I knew that even if they did blood allergy testing that my levels would be off becasue of the drugs. So it's probably better that they didn't test. I'm just hoping that things will calm down long enough so I can get allergy testing done.

The waiting times are ridiculous - I agree - but there are good doctors/staff .

Yeah, it's not the doctors or nurses fault at all, I'm sure they would speed up the process if they could. There should be more doctors!

[eKatherine]

I would fully expect to wait 4 to 6 hours to be seen here in the US if I were not in very serious condition.

[Carriefaith]

I would fully expect to wait 4 to 6 hours to be seen here in the US if I were not in very serious condition.

Really? I didn't know that the US ER's had long waits.

[num1habsfan]

Thanks again, everyone, for backing me up here, and continuing to think of me. That one Prednisone I took actually helped, like REALLY helped, and now my pains are just back to the way they have been for the last 6 months ... I only took it because I know the other 6 or 7 times they gave me it after going to ER it helped for the same pains.

I'm sick of waiting lists...for some stuff its not so bad, like tomorrow I go for an asthma checkup, which I have every 3 to 6 months, something like that can wait...but when its something more severe, I still think they should be looked at sooner.

Even getting a client rep to call the specialist didnt help (which is sad)...

Carrie/Rinne is right...the doctors are overworked. Because other small towns in this area have no doctors (or only have one, whos not even available everyday of the week), they are coming to MY town...beginning of this year we had 6 doctors and even had a walk-in clinic for refills or whatever so you dont need an appointment....but as of the beginning of this month, no more walk-in, and 3 doctors. When you drive around town, they actually have the "H" sign covered with garbage bags, so nobody comes...

The doctors at ER here are the same doctors at the clinic When the nurse called the doc to tell her I was there waiting, the doctor didnt even ask what was wrong -- as soon as the nurse said it was me, she knew why I was there (which again, is pretty sad lol)

To get into the clinic you have to wait 2 weeks, more if you want to see the good doctor..

Thats all for now

~lisa~

[Carriefaith]

When you drive around town, they actually have the "H" sign covered with garbage bags, so nobody comes...

That's horrible! Are you in Saskatchewan?

[Rikki Tikki]

Hi Patti:

It's good to finally see you! Lisa: I hope this finds you feeling better. The social worker in me is asking if everyone is getting along now?

It is a very frustrating disease, and one which many of have had many different experiences with. I agree for those of us that have gone years being misdiagnosed, being either told or made to feel like it is all in "our heads", "depression," "stress", whatever until we quit reaching out for help, at least until the next time when we are so sick death actually looked like a better alternative, (wow, can't believe I actually said that) then we finally get a diagnosis and there is a small measure of comfort in that. We know what is wrong, it's not all in our heads, and there is no place to go but up. Andrew, hopefully you will be different, you will listen to what your patients are saying. I am going to assume if you are now in medical school you are young, maybe you haven't had the experiences we have, maybe you are so young you don't know yet the value of listening, and hopefully if you are to stay in the medical field those skills will come to you. I don't know, I am of the mind that there are 2 types of people in this world, those that believe only what they see, and those that feel what they see.

What is that saying, if you haven't walked in my shoes, don't judge me. Or as someone had on their post, walk a mile in my shoes and you will have walked a mile, something like that

Anyway, I am just poking me head up to see if the smoke has cleared

[eKatherine]

QUOTE

I would fully expect to wait 4 to 6 hours to be seen here in the US if I were not in very serious condition.

Really? I didn't know that the US ER's had long waits.

Keep in mind that how good a country's medical system is is a judgment made based on what questions you are asking. You may look at the US and see that it is possible to get an appointment to see a specialist on relatively short notice. I look all these people who get tested and retested and reretested because their insurance will pay for it. I have no insurance, so I see a doctor only when I'm too sick to work, and then I have to have the cash to pay for it when services are rendered.