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#16 debmidge

 
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Posted 22 March 2004 - 05:22 PM

Sara: Don't take the doctor bashing personally as you're probably going to see a lot of things on this board that will make you flinch as a doctor. Remember, you are entering into the layman's world and you are getting a first hand look at the other side of the waiting room which you don't see. You have a rare opportunity to discover what makes a patient leave a Dr. and how patients feel about how a doctor treats them.

I never relied on the doctor's knowledge entirely, but we've been to four gastro specialists, not G.P.'s - Gastros -- but how do you as a lay person know a disease exists when no medical references speak of it? If the internet existed 28 years ago when my husband first came down with this, I would have gone on internet. But that's why I pay the physician to diagnose, not to talk down to me and make me cry. I pay him/her for his/her time to analyze & research the problem, not just to run tests and tell me you can't find anything. Due to this exchange of payment for services, the doctor owes me the responsibility of his utmost best performance. Of course not every doctor knows everything, but I expect a trained gasto, who practices in a prestigious group here in NJ, to know something about celiac sprue, especially when I am giving him hints!! I it my understanding that the blood test for gluten has been around since about 1989. Why didn't the gastro who saw my husband saw in 1993 add that as a test if the upper & lower GI's & sigmoidiscope didn't show anything? Why didn't he at least give my suggestion about malabsoprtion a whirl? It's obvious why in light of the tone of voice he used with me.
The Mayo Clinic reference book that I picked up last year has a piece about celiac disease in it and this book was published in 1990. But even that book doesn't tell you the whole picture.
Due to the time lost in diagnosing this disease I have been cheated out of a healthy working husband, a family (couldn't afford to have children) , a house and all the other perks that healthy people take for granted. Because of that little misdiagnosis I have had to support the both of us on my secretarial paycheck for the past 25 years. I have endured the stress of a sickly husband and knowing that we were one paycheck from being homeless.
In addition I find out now that my husband has a greater chance of having an intestinal lymphoma due to undiagnosed celiac disease. I have been to hell and haven't come back yet. And if you think for one minute that I am angry you are 150% correct. I think I have a rght to be angry at those doctors. No one has a right to tell me how to feel. I feel as I feel. And I speak as I feel.

You are presuming that all doctors utilize due dilligence because either you perform due diligence or you are imputing your diligent behavior to them, where they have none. I am on the other side of the fence telling you that in my experience your colleagues they are not performing up to snuff where celiac disease is concerned. If they were, you would not be reading everyone's horror stories.

Now I've said my piece and hopefully have provided all on this board with at least a small explanation of my world. For health care professionals on this board, please take the word of those with similar testimony and disseminate same to your colleagues and tell them that we are holding their feet to the fire so that they get it right the first time.

Please forgive me for sounding so harsh but I feel so hopeless and feel that no one in the medical field, with the exception of my husand's new gastro, really gave a rat's petunia.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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#17 outthere39

 
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Posted 22 March 2004 - 06:47 PM

To all,
I too see both sides of the situation. I cannot see getting angry about it all. Before I found I was a celiac, my mother suffered for three years until they finally diagnosed her. She went to 3 or 4 different gastros along with other specialists that concluded that most of what she was going through was in her head. When I had my first major celiac attack, prior to being tested, I went straight to the emergency room. And, if you guessed, a misdiagnosis. I blamed the doctor at first, but I looked at it and decided who I really was angry with, the American healthcare system. Doctors are just like cashiers that can sometimes miscount their monies at the end of a shift. Definitely, more serious, but human error is and will always be. So their knowledge is not going to be all and knowing. To the doctor that replied, how dare you critique the info on the site. Eveyone knows that all info received should be looked at objectively. Especially every celiac, that vary as much in age, race, and symptoms. Quite frankly, combining all our info together, most of it can be quite helpful. How can you defend in one breath doctors have not advanced enough in celiac info, and then turn around and say you are shocked by some of the advice given on this site? I think that this is great because of its support, support that cannot be given by doctors due to the health system that employs them.

~No negativity, lets remember it is about support.
gluten-free since July 03
Richard
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#18 deweyhughie

 
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Posted 22 March 2004 - 06:59 PM

This discussion is perhaps the most valuable on this board - for both sides of the issue! As debmidge mentioned, the doctors are able to see from this discussion what the patients feelings are. But also, we must understand the position of the doctors as well.

I spoke to a GP recently who stated that to the best of his recollection, throughout his entire time in medical school, less than 30 minutes was devoted to Celiac Disease! It seems to me that if we want to be mad at anyone, we should be mad at the medical schools! Especially since this is where a significant amount of medical research is performed in this country!

My symptoms were present for at least 15 years. Like almost everyone else, I was diagnosed with IBS. 2 years ago, I asked my GP point blank if he thought I had Celiac Disease after I had read something about it on the internet. He said no, if I had Celiac, I would have blue teeth, three knee caps, and excessive nose hair! :P OK, I'm exagerating! He basically assigned symptoms that he had seen in another patient he had who did have a Celiac diagnosis to all Celiacs. Of course, we all know, symptoms vary in this disease. Some patients are even asymptomatic!

Finally, because of terrific heartburn, my GP referred me to a Gastro and I was diagnosed with Celiac after an endoscopy. Did I dump my GP? No. Am I mad at my GP? No. Why? I've been going to this GP for several years. I find him to be very thorough and diligent. I also find him to be very competent in most areas. That he missed a diagnosis only makes him human - not evil. Also, there is much more to my body than just Celiac Disease and I trust him with more than just Celiac Disease.

The other side of this discussion has a valid point that these forums provide a valuable service in providing information and support that many patients may not be getting from their medical professionals (especially in those 5 minute office visits!). Furthermore, I agree that there is a definite problem with arrogance in the medical profession. Another shortcoming of medical school I believe.

Having said all this (sorry it's so long), I absolutely appreciate all the discussion thus far on both sides of the issue. Although there are strong emotions coming out, it is a healthy discussion that we can all use toward a common goal! I think (and hope) that these emotions are not meant in a personal manner directed at anyone in particular, but rather as a means of conveying frustrations. :)
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Best wishes,
Dewey
Marion, IA

#19 gf4life

 
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Posted 22 March 2004 - 08:04 PM

I spoke to a GP recently who stated that to the best of his recollection, throughout his entire time in medical school, less than 30 minutes was devoted to Celiac Disease! It seems to me that if we want to be mad at anyone, we should be mad at the medical schools! Especially since this is where a significant amount of medical research is performed in this country!


I agree with this. Most of the doctors that I have had problems with are gastro doctors who didn't think I could possibly be Celiac since I did not fit the symptoms (that they had learned in medical school) exactly, or I wasn't exactly like other Celiac patients of theirs. They did not like ME telling them what I thought about my own body!

But on the plus side, I have found a few really good doctors who do know a lot about Celiac and they are newer doctors, so maybe they are spending a bit more time on Celiac in med. school... or the doctor just chose to learn more about it. Doctors can't be experts in everything, but you would expect a gastro doc to be informed on the subject. I am not angry at the doctors who misdiagnosed me for over 26 years, but I am disappointed that I did not have the quality of life that I could have had if I had been diagnosed as a child. I am very glad to have pushed for testing for my children and I do hope that their doctor will be able to support the diagnosis through Enterolab since we were not able to get the testing he had wanted done through Prometheus. I would like for my children to have the follow-up care that they deserve to get, and for the doctor to note their progress.

It helps to have the same doctor for many years as they get to know you and trust you. I have found that some of the doctors that question my judgement are doctors that I have not known before. Why should they trust me? I could be making up the symptoms or just wanting attention. Some people do that. Most Celiacs are either labeled IBS or hypochondriacs. When a doctor knows me for a long time they listen to me about myself and my children and they trust my judgement. They let me participate in deciding what tests to run and how treatment should be handled. I think that is as it should be, but the doctor has to know you for a while.

God bless,
Mariann :)
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#20 hsd1203

 
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Posted 22 March 2004 - 08:32 PM

I kind of feel as though I'm walking into a lions den here, but I thought I would step in with the medstudent point of view. I have to admit that they probably didn't spend more than 30 minutes on celiac during my gastro course this year... however... if you think about how many diseases there are out there and the fact that we have only 4 years to learn all of them (and only 2 of those are in a classroom) then you have to figure that it is getting its fair share of lecture time.

For better or worse, it is the doctors who are in hospitals now who teach the medical students which of the 6 million diseases we learn about in lecture actually exist in real patients in the clinics. And since many of them never learned about celiac, we don't get to see their celiac patients because they don't think they have any.

This is not a defense, but I just thought I would say a little something about the way medical training works. It makes for slow change, but with all the new research out about celiac disease and with patients being more proactive, it pushes it further into the forefront for docs who can then share with their students.

Now my medical school class, with 2 gluten intolerant classmates, are all getting a firsthand education about this, which is great! And several of my classmates have asked for personal tutorials on my symptoms and other ways the disease can present so they can learn how not to miss it in their patients. In short, we really do care about learning as much as we can to help people. Promise. And while there is no way to get back the many years that too many people have lost, there is hope that it will get better.

Heather
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#21 kejohe

 
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Posted 22 March 2004 - 10:41 PM

Heather,
Thank you so much for that very sincere post. I am not in the medical field, but rather the restaurant industry, which in some sections on this board can take quite a bit of heat as well. But I do appreciate what everyone has to go through, on both sides of the issue. I pride myself in being able to sit back and force myself to look at things objectively, and I am glad that this discussion has been such a "hot topic" on this board. I think its important to discuss experiences with each other, I just want to stress that it's important to talk about the good times as well as the bad.

I am not trying to patronize anyone who has had negative expirences, I just don't want it to dominate our lives, or the board. I think life is too short to dwell in the past. And certainly its unfair to alienate an entire group of people because of the mistakes of a few.

I am extremely sorry for those of you who have had troubles with your dx's, and I agree with Heather that since there is no way for us to regain the years that we may have lost being sick, the only thing to look forward to is that it is getting better. I hope that now that we have made it this far, we won't waste anymore years, months, days, minutes being angry at people, doctors, diaticians, (or chefs HA!) and instead will concentrate on being glad that we do finally know. And from now on, we can look forward to healthier futures, rather than spend our time resenting the past. Love life for the gifts it brings, don't hate it for things it takes away.
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Kathleen
Son has been gluten-free since December 2001

#22 guppymom

 
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Posted 22 March 2004 - 10:42 PM

So, it seems to me that maybe there can be a way to encourage our physician's(those that are still speaking to theirs)to consider celiac disease as more of a front-line answer rather than a last resort. My own doc did say to me, "oh, so this is something you read about somewhere and now you think you have it?"...but my daughter'd ped was wonderful. He always is. He listens to people, he blows the clock, takes his time, and follows instinct also. He has NEVER sent me out of his room hopeless. He is a gold standard also, as I suspect you are Sara. I appreciate this man and am eternally grateful to him. As for my own doctor, I am trying to switch to an internist in the clinic who is of the same ilk as the ped. That I can't help. I don't trust him with my best interests anymore. I was so sick all last fall, not just gastro stuff, my whole immune system was crashing and he got to where he would just roll his eyes when he saw who was in his office again. He is not the general doctor public, I know that.
And a good friend of mine, that one that i think is celiac, she's a PA. But celiac is NOT something that she considers a viable diagnosis. She is much more oriented towards treat the symptom.
My question then, for all of you medically involved celiacs, what can we do? As a group, as individuals...knowing the profession and the possibilities for change, and taming our cynical, hurt and outraged selves, is there anything, anyway that we can take our hellish experiences and turn them for good? I really don't feel noble, so don't hiss at me, but if there is someone that I can help NOT lose years of living by raising awareness, then I want to do it. Talking about it to people I see suffering is not helping, they all turn to the medical profession for diagnosis.
Deb, I'm so sorry for your hurt. It is valid and I am sorry. You have suffered so much, and I appreciate your point of view as a spouse recovering from a disease you don't have yourself. It makes me sad I can't get my years back, but man, i'm so glad my daughter got diagnosed at 16, rather than 39, or 50, or 62...and my little one at 6, rather than 16.
Teresa
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#23 debmidge

 
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Posted 23 March 2004 - 03:22 AM

To all
I think this section's topic is about how we are coping. I speak for my husband because he is too depressed to get on this website himself. I ask him to write for himself and he says "you do it, you know how I feel."
Part of the coping is what our experiences are in everyday life and that includes how doctors inact with us. I use the collective "us" for both my husband and myself as we are a unit, we are married 25 years this year.

For Heather, the young person in medical school who is celiac, I am sure that you will perform better than average for the celiac because you already know the "monster." But I do have a question for you, do doctors have continuing education requirements in order to keep their medical licenses with the state? I've always wondered about that.

When a doctor gets to the point of rolling his eyes when a particular patient comes into his office because he thinks the person is a hypochondriac he should quit being a doctor. His purpose in his profession is to give out medical advice, not to make his patient feel like a burden.

I don't spend every waking moment being angry over the misdiagnosis, but my husband is so sickly that I can't imagine him being normal with controled celiac. Remember, he was only diagnosed 10/03 so we are new to all of this. This is not exaggeration but he has had all of the "classic" celiac symptoms from the start. Many times when he would take a turn for the worst I would want to take him to the Emergency Room, but what would I say, "He has IBS and something is wrong with him?" The ER people would think we were two nuts.

One of the problems plaguing him is reoccurring hernias due to the fact that he's lost so much muscle tissue from losing weight over the years. This is a direct result of not being diagnosed properly from the beginning. He is on his 4th hernia, now remember, he doesn't work or lift anything heavy. He's only 130 lbs at 5'10". He has no fat stores and the body has been claiming his musculature over the years. When we were first married he lost more weight and I called his gastro, a doctor whom he saw many times, and the doctor said to me "Debbie, he just has to eat more." At that point when I hung up the phone I realized that this doctor had no clue as to what was really wrong or how to treat my husband. But then again, neither did I, but I wasn't the trained specialist -- my gosh I was only 22 years old and didn't have a clue about life let alone a mysterious rare disease.

Our routine is that every day before I go to work, I print out sections from this message board for my husband to read while I am at work. He keeps them in a file folder. I know that all of your words mean something to him as it helps him to realize that he isn't the only person going through this. I married him in traditional vows, one of which was "in sickness and in health" -- I am hoping I (we) get the health part for the remainder of our marriage. If I sound depressed, I am; I too have health issues. I was just told that my mammography came back with a suspicious cell change & need more testing. I often worry that if something happended to me, like I died or became disabled, how would my husband survive. He depends on me for his life; he has no one else, not even family who can take him in.

I have been thinking about drawing up a one-page flier on my own. Just basically describe what celiac disease is, how you acquire it, what you do for it, etc. and giving it out outside of the supermarket in town. That would make me feel like I am doing something to help spread information.

Thank you all for being there. It's appreciated very much.

Debmidge
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#24 Karina

 
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Posted 23 March 2004 - 06:51 AM

If a Dr is board certified then there are a certain amount of continuing education requirements--the docs could tell you what exactly these must entail. For nurses it depends on the state we practice in. I come from a state that is very strict on certification--but in the state I now live in nurses are not required to have continuing ed. (which is TERRIBLE). It is up to the integrity of the practitioner to obtain continuing ed. which I for one think is a MUST! Not only is it ethically right it is just good business.
Anyway, now I am going to say something that may stir up some commotion, so read it all before you throw food at your computer. SOME docs may be quick to treat someone like a hypochondriac because they realize the amazing impact that stress has on a persons body. Stress contributes to a huge number of illness, infact any disease known to man could be made worse by stress. This DOES NOT mean that there is not a bonafide illness the person may be dealing with, and this is the hard part--a doc has to decide "Is this all just stress, or is something more going on here?" Obviously we know celiac disease needs to be diagnosed so that people will get on the diet, and treat whatever secondary illnesses that celiac disease caused--so just treating the stress is not ok. Still other conditions may be totally related to stress--like certain headaches or certain stomach aches. Problem is often we don't know what to pursue. In the case of celiac disease, there is a lot everyone is still learning--and sometimes the path to diagnosis is cloudy (tests not coming back pos., etc). None of this excuses shoddy performance on the part of a doc, but I think as patients, we can help by going in informed, and calm. Be honest with the doc--let him/her know you know your stuff (they usually feel a greater sense of accountability to make sense to you if you know a bit about what is going on). A doc SHOULD treat everyone the same regardless if they know anything or not--but we are talking human nature stuff here. When I walk into a docs office and they see "RN" on my file, they treat me differently. I am not saying this is right! I am saying try to do some of the initial guess work yourself--so that you seem very informed. This is a tip with dealing with medical proffessionals, I am not condoning anything shoddy on the part of a doc, nurse, dietician, etc. In some cases, like Deb's she did what she could--there wasn't a ton of info when she started. Many are like her, and my heart goes out to her. She seems very intelligent, so I know Deb that y ou know all docs are not like the ones you have experienced, but you bring light to such an important topic. I am sorry this was so long--this IS a good discussion!
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KARINA

#25 guppymom

 
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Posted 23 March 2004 - 07:23 AM

I do understand that my myriad of symptoms did seem a bit unreal. I didn't blame my doctor for harboring some suspicion that I was hypochondriac. But I sat there and told him that, right up front when I saw the eyes roll, and told him that I honestly was ill and didn't know why. I had already been eliminating groups of foods/additives from my diet in an effort to be well, and he was aware of that. I was battling so many infections that we could not get cleared up, or once they were a new one would spring up immediately somewhere else. It was so scary! I also have a lifelong issue with anxiety, which i read is often part/parcel with celiac, so I feel pretty sure that is where his "oh you read about it" comment came from. But he's never treated me for anxiety since I already have a great program from Dr Weekes that I follow. He was willing to do the blood test since my daughter tested positive, but decided to send me for a colonoscopy since I was going to need one at 40 anyway(he IS concerned since my mom died of intestinal cancer). ? I wasn't even at 39 yet then, so I asked if he didn't mean an endoscopy, and he didn't see much reason for that, but I could talk to the gastro about it and let him decided which he would do, or I could also go back on gluten to get the positive result from the blood test. That's when I just knew that he didn't understand and wasn't feeling much inclined to understand, or trust my considerations of what was going on.

So honestly, the bottom line is, in this country at least, it seems to me, that this disease is just not being taught about enough! How do we change that? How can we nudge the medical community to seek more information? How do we help school nurses look and listen for clues? What is the best approach to take, one that will meet with positive results(although i am sure minute at the beginning) rather than appearing to head bash and turn them away from what we are trying to say?

Do any of you belong to local support groups? I don't think there is one in my area...is that a possible avenue? Is there a national support group, other than this forum/site, where we could join together and put something together that might make a difference? I don't understand all the ins/outs of that, but there just might be something that we can do! Anyone have any ideas?

I'd love to see the day when my daughters can go back to summer camps or youth programs and not have to go through the huge deal of making prior arrangements for bringing/preparing/storing their own food because the dieticians and medical personnel will know what celiac is. Not that we mind that, just like we've talked about before, people don't understand and so it becomes SUCH A HUGE ISSUE!!!
Good news is, there's a day-long fun thing that the older girl is going to this saturday, and the leaders remembered enough to ask me what she can/can't have and they will make sure that a few of the salads are gluten-free for her! WOW. And I, in my great gratitude, offered to make one to send along for the group to eat. :D I guess that's a start.
:D
Teresa
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#26 GFdoc

 
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Posted 23 March 2004 - 08:43 AM

OK, OK I hear all of you, and I agree with alot of what's being said.
The way I see it, from a doc's perspective, there are 2 main problems:

1. Doctors don't spend enough time with their patients and/or don't listen.

My response: the way insurance companies reimburse docs these days has worsened this problem greatly. In order for doctors to make a good salary, they need to increase the number of patients in their practice by alot because HMO insurance pays docs a set fee for each patient (doesn't matter how many times that patient actually visits the doc). When patient load increases, then you find that the docs only have 10-15 minutes per patient. THIS IS NOT GOOD FOR PATIENTS (or docs who care, either). Most practices that accept insurance have this kind of schedule - ask your doc's office what is the usual time allotment given for a typical visit. When you book your appt - tell them that you need extra time, and to please schedule it in. They may refuse (especially if you have HMO insurance). If so - call some other docs and see what they say. Next, if you have a doc that has no compassion, and/or doesn't listen - GO GET A NEW DOCTOR!

I totally agree with Karina - it is a fact that stress can cause real medical problems, and it can be very difficult to sort out which came first - the stress or the medical condition. Sometimes docs do get frustrated by frequent complainers, thinking that they are hypochondriacs - this type of person does exist too. But if there is a problem that interferes with a patient's daily life - it still needs attention - whether it is caused by stress (then send patient to a psychologist) or medical (then find out what is the cause) I personally think that all people who have chronic medical conditions automatically need some talk therapy - to help them deal with the overwhelming stress of the diagnosis.

2. Doctors don't know enough about celiac disease
I agree! Unfortuately, celiac disease has such vague and varied symptoms - it overlaps with so many other problems, and doesn't quite fit. I know that I wouldn't have been diagnosed expect by a fluke that I had an endoscopy done for severe acid reflux. Just look around this board and you'll see how we all have such different symptoms. Luckily, there are better ways to diagnose celiac disease now (the blood tests are much more accurate than they used to be).
The best way to help educate your doctors without triggering the arrogance issue is to bring a couple of review articles on celiac disease (WRITTEN BY DOCTORS, NOT LAYMEN). Here is a link to a good one, although it is a little old celiac disease review article I would also bring some info on the newer blood tests to diagnose (EMA or TTG). The enterolab stool tests are not accepted by the medical community, including the top Celiac experts that I have contacts with at the University of Chicago.
Don't expect your doc to read the articles that same day - if you can, you can mail them a couple of weeks before your appt, with a follow-up phone reminder a couple of days before your appt. Ask your doc to read it over when they can, and make an appt to discuss whether your symptoms might be from celiac disease. Be ready to consider other diagnoses (that mimic celiac disease).

To make doctors as a group learn more about celiac disease, it's best to get some good media attention - ask your local TV stations or newspapers to do a story on celiac disease - bring in the info about the food labeling laws being considered by Congress as an additional angle. Maybe the reporter can follow you at the grocery store to see what it's like to shop for gluten-free foods.
Docs do have to take continuing education courses, it varies by state. But it is not specified what topic has to be taken, just that it was taken. So we can't force any doc to take a course on celiac disease. If docs see alot of media attention to celiac disease, maybe they will seek out a course on celiac disease.

Lets keep talking and thinking of good ways to help each other...
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Sara gluten-free since 9/03

#27 Guest_jhmom_*

 
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Posted 23 March 2004 - 11:16 AM

Hi Sara, that is a great idea about asking how long the doc spends with each patient and then asking for extra time if need be. I never thought of that and yes if people do not like their doctors, then fire them and find another one.

Yes stress does do terrible things to your body and I am sure after a doctor checks you from stem to stern (as my GI did) then I am sure they feel helpless. I know my doctor did, he point blank asked me "what do you want me to do" all I could tell him is I want to feel better, I want to feel like a 32 year old woman, I want to feel "normal" again. I think my GI doctor actually cares about me he just wasn't able to diagnose my Celiac and THAT'S ok, I still like him. Maybe by dealing with me he may have learned a little more about Celiac and may check more of his patients for it.

The point I would like to make; I know for me I do not live in the past, I am not mad at my doctor nor do I hate the entire doctor community. I was frustrated at first when I was so ill and could not get answers but my doc never made me feel hypochondriac and I am thankful for that.

He could not give me answers so I took the Enterolab route and improved on a gluten-free diet. Recently I had to visit my GI doc and I faxed the Enterolab results to him, whether or not he accepts the results is up to him but he CANNOT ignore that I improved on the gluten-free diet. It turns out he did accept the test results and assured me that he had ran those same test except they were blood test. In addition he told me that some times a disease will not show up in the blood at first, it takes time. Well "time" is something I did not have, I was in such pain I could not take it anymore. There comes a point when we have to realize we are in charge of our health and we do the best we can for ourselves and our children. My daughter also suffered with GI problems I did not want her to endure all the tests/procedures so I had her tested through Enterolab too. Recently I had to take her to the Ped and advised her that she was on a gluten-free diet, she asked how she was diagnosed, I told her and then she looked at my daughter and said "I have waited my whole life to meet you". I do not know how long she has been a doctor but my daugher and I were the first Celiac/gluten sensitivty patients she had met! (I feel like a legend, hehehe)!!!! B)

I do hope no one here takes offense to any of these posts, we are not directing our frustrations to any one person. All we (I) are trying to say is, people only want to be heard and not dismissed so quickly! :rolleyes:

Take care,
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#28 deweyhughie

 
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Posted 23 March 2004 - 02:13 PM

The interest expressed here in taking action to get the word out about Celiac is very positive.

Since this post is already drifting steadily off course from the original topic (as I said, it's an excellent discussion - just don't want to take off in another direction in the same post), I have started a new post in this section about current and future national celiac organizations.

I would greatly appreciate your thoughts in that post as well!
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Best wishes,
Dewey
Marion, IA

#29 deweyhughie

 
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Posted 23 March 2004 - 04:38 PM

For some reason, my post about the national organization has been moved to the Publications and Publicity section.
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Best wishes,
Dewey
Marion, IA

#30 debmidge

 
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Posted 23 March 2004 - 05:25 PM

Thank you all for some energetic discourse.
Perhaps we can gather our energies and inform our friends, neighbors, co workers, relatives, etc. about celiac disease. We are the Celiac Ambassadors prepared to tell the world what celiac disease is (and maybe we'll convince some to get tested for it & save them unnecessary grief ).

Good Spring to all.

Debmidge
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003




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