I'm a first year med student with Celiac Disease, and I have a first-hand experience with the ignorance of some doctors concerning all things Celiac--which got me thinking... I'm in class with approximately 150 future doctors, so why not educate them. At some point, ideally in the next semester, I want to coordinate with our local Celiac support group to have an open forum with my classmates to help them understand what this diagnosis means. I also want them to taste our food (and see how much it costs).
Since we are a patient population that has just cause to mistrust doctors, what do you want these future docs to know about Celiac Disease (any aspect)?

The first step I want to see is for doctors to trust their patients' self-assessments unless they have a good reason, and I mean a long-standing history of good reason, to believe otherwise. If a patient says that the diet makes them feel better, the doctor should respect that decision, just as the doctor expects respect for the years of training they have undertaken. If anything, the doctor should help the patient make sure that they are truely following a gluten free diet, as they intend to.

Doctors need to look at all patients as if they have never seen a doctor before. They need to assess for themselves what the issues are with their patients and not think something a previous doctor labeled them with is gospel. They also need to understand that celiac is not just a GI disease. They need to understand that if a patient shows signs of depression or anxiety that it may have a physical cause and meds are not always the solution. Celiac hit me hard as a child after having surgery to correct congenital deformities in both legs, so hard that I committed suicide at 11. Doctors labeled me then and it took my being almost dead before any physical problem I had was was even considered to be anything other 'than in my head'. Even lesions on an MRI and nerve conduction tests that showed no nerve impulses in one leg were ignored, here have a prozac. Then when my children showed the same sort of issues along with stomach pains and failure to thrive there was that pesky 'Moms a nut' they inherited her mental imbalance we don't need to look furthur here have a prozac. That thinking almost killed both my children and left my DD with permanent nasty scars from cutting ( a wonderful side effect of her multipule prescribed antidepressants).
Doctors need to listen less to the pharma companies and listen more to their patients. Oh and one last thing, don't just blindly prescribe. If I was a doctor I would make sure I knew which drugs were gluten free and prescribe them. One of the best ways for us to get meds that are safe is if doctors refuse to prescribe stuff that isn't. There are so many of us undiagnosed in this country and it is a real shame that so many of us on multiple prescriptions, at least before diagnosis, come to the knowledge that much of the meds give are really making us sicker. But that's 'all in our heads' too according to the powers that be.

Too many years ago when I told my doctor of GI problems I got diagnosed with IBS live with it. I never brought it up again. Fast forward to now. As doctors read a history that I wrote the comment is "you have malabsorption issues." A GI doctor ran the celiac blood work at 1 1/2 gluten free of course it came back negative. I just saw a doctor about osteoprosis and he is running a bunch of tests. I will have to be treated agressivlly because I am at such a risk for fracture. I am under 60 years old. I took it upon myself to see the osteoprosis specialist because my pcp wasn't treating me right for it.
I would suggest if a patient has unresolved health issues run a celiac panal on them.

I'm feeling great now very few problems and I am gaining weight which I need to do.

Susan

I have a few friends that are doctors and I think that most go into medicine with good intentions, so why do so many end up being not as warm and fuzzy as we patients would like?

From some of the stories I hear from my md friends... its because doctors and police fall into the exact same thing with their "clients". They all lie. And after years of that, you begin to distrust them. Every doctor I know says the same thing, patients lie about every thing. Now that may not be you and I but sadly it does apparently apply to a lot of people. Patients lie about their medical history, their past surgeries, their current state of medical health.

I am quite friendly with a plastic surgeon and the lies he hears every single day are so over the top. People are so desperate to get a nose tweak or breast implants that they will lie about current medical conditions (like heart attacks!!!) to get the work done. And when he asks for medical records and orders things like ekg, they continue to lie! He told me about one person that wanted some work done and when he got the medical records this person had a heart attack just months before!!! When confronted they first denied the heart attack and finally ended up saying they had no idea it would make a difference. They were literally willing to risk their life to get rid of a few wrinkles. From what I've heard fully honest patients are the exception.

So I think doctors get to a point where they feel a lot/most patients lie to them. And I'm not sure any medical school in the world can fix it so people don't get jaded. But I guess I'd like them to remember that a few of us are honest.

More importantly is this: I'd like them to be taught that Celiac is actually not a rare disease. My former doctor told me (he's in his late 50's) that when he was in medical school this is what they were taught about Celiac: Its an extremely rare disease and you will probably NOT see a case of it in your entire medical career. That was it. (and he went to Yale). So what I'd really like to see is doctors being taught that virtually 1 in 100 people have Celiac so more then likely he will see a case of it every single week. Just that alone would make a huge difference, if they just had an open mind.

Susan

The Dr's need to stop using IBS as a diagnosis for all GI issues, some people do have IBS....but since celiac can have similar symptoms to a lot of other GI problems, it would be best to look at the patient as an individual. Listen to what the patient says. Most patients know when something isn't right with them, and they never get to speak up or really get their symptoms out, give them the chance to talk and let them feel comfortable in doing so. I know as a young female talknig to my first dr about my GI issues made me so terribly uncomfortable that I didn't mention how frequently I was getting sick or any of the other gross details which could have been helpful. My embarassement did not help when the Dr just did not listen and kept telling me I was stressed out....Sure we are stressed out...I was getting sicker and sicker and no one knew why....So I switched Dr's and she was a family Dr, and she looked at the journal I brought along and the first day I met her she suggested the bloodwork for celiac.
Ask the patients to write down exact symptoms, keep a diary of what they eat and look for patterns of what makes them sick and how long their symptoms last and what they are. This could help pinpoint what foods are bothering them. Also, if the patient has tried the g/f diet and is feeling better and is not really looking towards further testing...biopsies and bloodwork or upper GI's and other scans...let them know that is fine. The proof will be in the patients overall health. Sometimes, biopsies and scans are done and come up negative and the patient is left wondering. So a lot of members on here have had great dietary response and do not want the further testing. There is nothing wrong with that

Hope this helps.

I think ravewoodglass's statement "celiac is not a GI disorder" sums it up nicely. My mother has about a billion autoimmune disorders, and is always sick, but is convinced it can't be celiac because "my stomach's fine". And that celiac is NOT rare- one of th only reasons I got diagnosed so fast is because I'm surrounded by people who do have it- 3 friends! And my brother.

Yep, celiac is not very rare anymore. The amount of people getting diagnosed is increasing. Hopefully more people will find out sooner so they will not have to suffer as long as some of us did.

I think it would be important to know all the symptoms. I didn't mention GI problems until they were so bad I thought I had food poisoning. It is embarrassing! And when you have this your whole life, you don't necessarily realize that it's not "normal."

The symtom I had that eventually lead to the dx was tingling/numbness/burning in my arms and legs. And I had a host of diagnostic tests looking for something. But if a patient is talking about "not feeling right in the head," being tired all the time, insomnia, etc., then a doctor should ask about bowel movements. If a doctor asks, then patient might be more likely to discuss it.

Oh, and that you don't have to be underweight to have celiac! I've been overweight my whole life, as have my aunt and brother who also can't have gluten.

Lastly, if they have a dx of gluten issues, then the doctor should advise the patient to have other family members tested. I believe my grandmother and mother both have this, but they have not been tested.

I think anyone with mental health or digestive complaints should be evaluated for Celiac Disease, as well as anyone who has an autoimmune disorder or problems with fatigue. Also, my personal opinion is that IBS should be viewed as a set of symptoms. It should be thought of as a secondary condition, meaning that the search for the actual problem should not end with a diagnosis of IBS. (This also applies to some other syndromes and many mental health issues.)

You guys have pointed out something interesting, about lying patients. I think it would also be useful for doctors to be more fully open with their patients about what is useful information. Two of the best doctors I've had do a tiny bit (well, I assume it's a tiny bit, but it's more than none) of their thinking about how to treat me as a discussion with me. Literally in the form of "well, if you had symptom X, I'd be concerned about condition Y" or "if you had condition A, we'd need to also test B, C, and D, since we're looking into Q" or "if you'd ever had this, or shown signs of this, we'd need to think about this". This gives me, the patient, information about what he's looking for.

Do I tell him about the oral surgeries I've had that I might ordinarily think are unimportant? Well, it tells them I've been under full anaesthesia twice, and apparently that may be important. Do I tell him about my physical therapists' (yes, multiple) off hand remarks about hypermobility? Apparently, that's connected with fibromyalgia and turns out that may be important for me, physically and psychologically.

So, having doctors not just take things in silently and spit out their diagnoses, but rather teach the patient means the patient will have more knowledge with which to help the doctor. No, that won't ever do anything for the intentional scammers, but either you believe most people mean well, or you believe most people mean badly... Pick one...

In response to your question- "what do you want these future docs to know about Celiac Disease (any aspect)?"

I would have to say Do not ignore the other issues that go along with Celiac. It is NOT just a matter of giving up all things wheat / barley/ rye. The labeling issues on food stuff is daunting in the areas of confusing terminology. Next is the issue of how it affects so many people differently from one to the next. Then cover the area of other intolerances like egg, lactose intolerance etc etc that can come on the heels of a permeated gut. So many things and so little time in Med school.

Good luck to you in your pursuit of your med degree. Check out http://www.allergy-link.com/
Dr. Baptist is way ahead of many of his peers in treating Celiac, ADHD, Autism etc etc etc.

The Dr's are not really the people who teach the label-reading and understanding. Usually it is a dietician. As far as I am concerned I would rather go to a dietician who is dealing with food and food issues and learn about the label-reading. They would have more current information than the Dr might have.

On Dieticians----

I somewhat disagree with your take. The first dietician I saw tried to sell me Mary Kay cosmetics and she was attached to the hospital.

The doctor I now see is the third doctor I consulted. He, along with his staff, helped me learn the ins and outs of Celiac. I think a doctor should be aware of these issues in order to send you to the RIGHT dietician, if not having one attached or consulting through his own practice. Of course I do deal with a specialist and I think under the circumstances, a specialist is required.

And speaking of hospitals--I spent several days in one while my mother was being treated for Lung Cancer---guess what. The hospital could not feed me a full meal--near everything had wheat / gluten in it. To get more than fresh fruit--I had to eat out or go to a grocery store. That was just in May 2007. Hope I never wind up in a hospital.

I hope you complained about them....very unprofessional.

I saw a dietician after I had celiac, she helped me a lot and she had wheat allergies so she was very helpful. It was a dietician in the hospital I work at, and she practices in the same practice my family dr is (my family dr diagnosed me) My family dr did help me out alot with the whole labeling issue but I learned the extra amount from the dietician.
The rest I picked up on this board. There is so much people on here have brought to the table. It is amazing.

You are very fortunate to have the dr you have who can teach you those things.

I'm a med student too and I thought you might want to know that this is EXACTLY how they teach us to take a history (at least at my school). Hopefully that signals a changing direction in medical education. I've had positive response from my patients when I use that same method.

I think it stems from the fact that most of my class will spend their careers treating "lifestyle diseases" and not diseases where you give your patients a drug to make them "all better". I personally believe the only way to effectively treat those conditions is to partner with your patients and allow them to "own" their illness.

I'd like new doctors to realize that celiac isn't the only diagnosis out there. I feel like non-celiac gluten-intolerant people get dismissed too easily.

I think my doctor would take me more seriously if I had tested positive for celiac. I did an elimination diet to figure out I couldn't have wheat. A few family members have related disorders, including gluten intolerance. But of course, because it isn't celiac, I must be imagining all this. Heck, I don't think Stanford will see me because of that negative test, and I have a lot of bad symptoms too!

Luckily my allergist, dermatologist, and psychiatrist support this. I obviously need a new gp.

I think this is great. Here are a few of my thoughts.

A couple other things to mention are that people don't always realize their symptoms. I had about 5 different doctors over the course of a year ask me if I was constipated. I told them no, because I could pass feces. Because I had been constipated for so long, I didn't realize that an egg sized bowl movement every day wasn't normal. It took an x-ray to show that my entire digestive system was full of feces (ewww). Similarly, if you have had loose bowel movements for years, what makes you think that they aren't normal?

Remember that all tests show is the damage that you allowed happen to your body. I came into my doctors after a year of seeing him and 2 years of being sick and told him that bread and beer made me constipated/gave me stomach pain. I figured this out based on a casual elimination diet (I didn't get hung over on hard cider and whenever I ate a sandwich, pasta, or bread I would be in the worst pain for the next week). My genius doctor didn't test me until 5 months later. Because the food hurt my stomach I had stopped eating it. Just like how people learn not to touch a hot stove, people learn not to eat what foods make them sick. So don't be surprised if people think it is food related and then have not antibodies. It just means that their body is trying to be healthy.

Another thing is to ask about your patient's life. 2 of us (me and my mom's boss' nephew) were diagnosed because we always ended up in the ER during finals in college. My grandmother was the one who realized it was all of the beer and pizza we were consuming in celebration. Similarly, you will see people who get really sick at the holidays or on vacation. When I came back from abroad my doctor asked about my health. My reply was other than Paris and Italy where I lived in the bathroom, it was great. That should have been a clue.

Finally, keep in mind that just because I don't have a medical degree does not make me stupid. My biggest pet peeve is when doctors run tests that they don't want me to know about because they will assume I will lie about the symptoms they see (ie eating disorders) or don't want to worry me prematurely (ie cancer). I can read a lab sheet and see what you are running. Tell your patients what you are doing and what you suspect. If you tell us what you are looking for, we are more likely to give you information that will help you out.

Good luck in med school!

My son is a celiac, probably from age 1 (he had chronic ear infections beginning at 8 months, around the time he began chewing bread sticks while he was teething). I figured it out when he was 2 (6 b.m.s per day- when I eliminated milk, no change, when I eliminated wheat, down to 1 per day within 2 days.). What doctors need to understand is that learning that someone is celiac is devastating. It is also enlightening. When he was 5 a person at a ski resort fed him a sandwich on "white" bread because he knew my son could not eat "wheat". Naturally he was quite ill that night and ended up sick for a few days. The amazing thing is that about 9 days later his kindergarden teacher called and expressed concern that he seemed lethargic and not attentive in school and thought he seemed anemic. Realizing he probably wasn't getting nutrition because of the recent assault by the gluten, I made sure that he took his vitamins with iron every day and in another week the teacher called again and said she had noticed a marked improvement.

I was very sad to learn that my son was a celiac. It is extremely inconvenient and expensive. At restaurants and generally when we go out, people treat us quite often as "a pain". We ask lots of questions which many people cannot answer. We take along rice crackers so he can have something to nibble on when others eat from the bread basket. Also understand that many doctors and nutritionists do not understand celiac. I have a highly educated friend who works professionally as a nutritionist and asks me if my son will "outgrow' his intolerance (he is now 14). My son is careful with what he eats (because when he gets gluten hidden in his food, he gets the stomachache, then the runs, sometimes even vomiting, then the inflammation in his body generally leads to some sort of infection like a cold- his immune system does not function well when he gets gluten in his diet). I mix up a special gluten free "flour" so he can eat baked goods like a "normal" person. I've warned him that when the time comes, if he chooses to drink he should avoid beer and whiskey, and should probably stick to wine. Basically, for celiacs, doctors need to listen to and respect their patient.

It may be that if someone has been celiac for years, but have unpleasant symptoms, they may be in denial and don't wish to be inconvenienced by such an unpleasant diagnosis. Thus they may not be up front about their bowel history, food intake, etc. I would recommend a journal for a month, describing all food, and times and descriptions of bowel movements (ie, loose, hard, smelly etc.10 a.m. and 11 p.m.).

I guess what I most appreciate is when a doctor accepts that my son is celiac and ensures that he gets gluten-free medications.

I was misdiagnosed with IBSD for 23 years before finally getting celiac disease confirmed. I lived in terrible pain and took a number of useless medications for this. Even though I had the positive IgA results, it was still treated like IBS because my first biopsy 8 years ago was negative.

Then I started getting DH, which was misdiagnosed as shingles three times. Finally somebody thought to test it. And finally I got diagnosed. BUT I did not get much help from my doctor or a dietician-- I am relying on this site. I am now normal as long as I don't accidentally get gluten, and it happened pretty quickly. It was like somebody flicked a switch.

I feel cheated of those 23 years-- I was debilitated and very limited. And I know what happened to me has happened to a lot of people. The average time to get diagnosed in this country is 11 years and that is just too long.

So I would ask you to please not discard celiac disease because of a negative biopsy. Please take a second and third and fourth look at your IBSD patients. And please tell IBS patients to try the gluten free diet for at least two months.

Lisa

I would say never ask a patient if they have diarrhea or constipation. Those words mean very different things to people. It might be uncomfortable for the patient and the dr but descriptive words need to be used! I'm actually an RN and I would never have called what I had "diarrhea." Over and over again they asked me that and I said, "No, but they are sometimes loose." That calls for clarification!

Also, respect your female patients. Don't blame their complaints on PMS, work, their husband or kids, or pre-menopause. I was told, "Oh, it's college stress!" Later it was work stress. For six years they blamed it on my poor babies! In reality, I was very ill and so deficient in b12 and iron I was having fainting spells.

Listen and ask questions based on the information you hear.

Good luck and God bless your journey! Family doctors are sorely needed in this country and you have much to offer your future patients.

Good thinking! One thing I love about my current family dr who diagnosed me...She knew it wasn't stress or PMS. my first male Dr kept saying, well women have a harder time at work dealing with issues.....

It also took me 10+ years to be diagnosed. After multiple trips to multiple doctors, I was sent to a psychiatrist who then sent me to a psychologist who then sent me to some kind of chiropractor. I would tell them to please stay on top of this disease and LISTEN to your patients. Do not write off what they are saying and if they request a celiac screening, ORDER IT FOR THEM!!!!!

Susan - I can imagine people wanting plastic surgery so badly that they'll lie about their underlying health conditions....but I can't imagine someone lying about having diarrhea and gas. So please tell your Dr. friends that it's unlikely someone who doesn't want plastic surgery would lie about gastro symptoms. I suppose in plastic surgery practice there's not much 'cross-diagnosing' going on anyway...

Absolutely right....hate to put it in these terms, but "connect the dots" is the way for a total system evaluation. Celiac disease will not be found if the patient falls thru the cracks when doctor treats "a la carte" style.

My husband had doctors:
1) think he was lying
2) think he was a drug addict
3) think he was mentally ill
4) think he was too much trouble to deal with


With One GI I actually unknowingly gave him the diagnosis: malaborption symptoms and he turned around and rudely dismissed that. Had he ran with it, it would have diagnosed the celiac disease. No, he told my husband that he had psychological issues......

So I'd also say don't be rude to your patients when they suggest something. Don't puff yourself up with imaginary importance. Accept being wrong. Accept opinion of a colleague. Accept the possibility of something being that 1 in 10,000 (like a rare cancer or like celiac). Admit you don't know something but be willing to investigate it. Don't get an attitude and say "I'm not a magician." Lose self-pride, be humble. GET a lot of continuing education - learn new breakthroughs and procedures. Encourage second opinions. Connect the dots by learning the symptoms for even parts of the body you don't treat, i.e., brain, nervous system, gut, bones, etc. Don't just keep passing over it as it's "not your job" : you're not in a Union for crying out loud!

If patient keeps coming back complaining about the same set of symptoms look for other possibilities.


And to think it only took them 27 years to diagnose him properly....!
Now he's so far gone he's fragile...if only they took his symptoms seriously. He presented 'classic' celiac disease symptoms that shouldn't have been overlooked.

I have heard stories like this before and it really makes me scared to know it is true....

I work in a hospital and supposedly they can accomodate gluten free meals for patients, I have seen it posted on the itnernal dietary policy. I have also seen them get shipments of EnerG products. So they got the means. I cannot say how it all works...I have never had to be a patient over night.

After figuring out myself that celiac disease was a "very possible" issue and learning the symptoms, I figure I have been misdx'ed for about half my life... this could have been caught when I was a teen if not sooner. My last dr (which I fired for stupidity) kept insisting I had "acid reflux" and gee guess what the pills DID NOT help this should have flown a huge flag it was not AR but another problem but he was determined he knoew and was right and would not even concider any other isue at all... even when I handed him my research he basically said "he was the doctor and knew what my problem was" so yeah I fired him and did not go back to another dr for years!



This is so well said it is worth repeating! Turns out going gluten-free cured almost all my issues I went to the dr for in the first place and upon learning more found out I had symptoms for years that I didnt even know were related! We know our bodies and our mind, and unless you can prove we are marginally insane LISTEN we may give you an idea even if ours is off the mark.



A couple years ago my hubby went to the dr with uncontrollable coughing following a cold, they sent him to an allergist who gave him the standard tests... told him here are 4 pills and 2 inhalers your allergic to A, B, C, D, E and F. Flash forward a couple years and he is having major breathing issues and the medical profession keeps shovelling pills into him and nothing works, one finally set him up at "National Jewish" where they figured out his problem in less than 10 minutes... so now they want to know what caused it and run test after test after test.... the allergy test they couldn't read so redid it...... he isn't allergic to anything! When I got back we kept the next appointment with the allergist... know what he said! OMG I was floored! said he never was allergic to anything just "thought" my hubby wanted the meds... its like WTF kind of mentality is that anyways? NJ figured his problem was pill related, he was taking to many pills that were interacting with each other and his body decided enough was enough... he was out of work for a total of 9 months all because the doctors got "pill happy"

I very rarely think a lawyer should be consulted but in this case this was so dangerous it does not just border on malpractice. They could have killed him. I am so angry for you right now I could spit. How in the world did you avoid strangling this 'doctor'!

Interesting topic. Education in my opinion provides the best opportunity for early detection and treatment of gluten intolerance/Celiac Disease. Because of the current low diagnosing rate for Celiac a new doctor could see the huge "opportunity" to find as many of the yet un-diagnosed as possible. By doing this through effective screening and testing (for those who have severe symptoms) or even diet response for those in the early stages this doctor could establish a reputation that would last a lifetime. Once patients realize that this doctor really is trying to "cure" them then they would be more likely to go to them for other issues. I know I would.

Tom

I think blood tests for celiac should be part of a yearly checkup, regardless of whether the person is symptomatic. But realize that a negative test doesn't mean the person doesn't have celiac.

I'd like for doctors to ask more questions about symptoms. I had symptoms I didn't realize were symptoms until post-gluten-free. I did have a lot of digestive issues, but didn't even realize it so I never mentioned it to my doc.

Don't tell a patient "nothing's wrong" and let the patient go on their way. If the patient comes to you with something wrong, then there's something wrong. I currently have an arm injury. My doctor's run a ton of tests and can't come up with a diagnosis. Past doctors would have said that I'm fine, but this guy keeps searching. He's admitted he doesn't know, discusses possible diagnosis with me and why he doesn't think they're right for me, and is now sending me to a doc at the Mayo Clinic. He doesn't know the answer, but I'm super impressed that he hasn't given up, and I feel like he's giving me the best care he possibly can.

In general, I'd like doctors to take a more whole-body approach (which can be difficult with specialists). If someone's got depression, you can give them drugs for the chemical imbalance, but where's the research into why the chemical imbalance exists? And I think it's rare to think the imbalance might come from a food allergy. And I think doctors need to emphasize the importance of eating well and exercising. Even giving out pamphlets about portion size and how to easily integrate vegetables in place of fast food and how taking a quick walk at would do wonders for some people. Most of us here know this stuff, but I'm shocked at how many people don't know it. We can prevent a lot of medical issues if people just treated their bodies better.

I'm new to this forum and I'm also a med student. I'm in my third year and was diagnosed with Celiac last year. I think this is an important topic because we learned about Celiac when we were first year students as a disease that affects people of Irish descent, and causes diarrhea and malabsorption. The case we were given of a "typical" Celiac was an 8 year old Irish boy who was low in weight for his age/height and who had many foul-smelling, fatty stools every day. Well needless to say when I started having symptoms at the end of that same year they were nothing like the ones we learned and so I never even thought Celiac was causing my problems until months later when I had resorted to googling my symptoms and discovered there is a lot more to Celiac than Irish people with loose smelly stools! First off I am Italian and Austrian, there is not a drop of Irish in me, but after much googling Ive learned that there are also lots of Italians affected, as well as many others, not just Irish. Also, my main symptoms were nausea and vomiting. They got to the point where if I eat anything with gluten I throw it up almost immediately and get very nauseous for hours. I guess looking back I did have a bowel movement after nearly every meal but that had always been "normal" for me so it wasn't until the later symptoms of nausea and vomiting, and serious bloating that I realized something was very wrong. I must say I went to a very good GI doctor who diagnosed me in 1 visit. By that point I suspected it was gluten but I didn't mention this to him, as I wanted to see what he said based on symptoms only without any of my bias. If he hadn't suggested it was likely Celiac I would have asked to be tested for it, but he did, and he was right. I think it is very important that people realize Celiac is not rare, it is not only in Irish people, and there are lots of different symptoms for different people. I have spent a lot of time explaining this to those who teach at my school, as well as my classmates and all of the doctors I work with. In fact the pediatrician I work with has since diagnosed 5 kids with Celiac because of what Ive taught him. I was a first year med student in 2005-2006 and the old idea of Celiac is still being taught, that is pretty scary! If we had been taught correctly I wouldn't have taken a year to figure out what was wrong with me! Looking back I also did have numbness and tingling in my feet due to B12 deficiency as well, but I just thought it was because I was always cold. Like everyone has been saying all along, its important to know the multitude of symptoms that come with Celiac, because they are not always digestive, and they are not always obvious!

Doctors really need to truly LISTEN to their patients, especially women. Take them seriously, and believe them, and not assume they are hypochondriacs when you aren't able to solve their problem on your first try. Not just with celiac disease/gluten intolerance, but with everything. I can't tell you how many times a doctor basically accused me of being a hypochondriac or a whiner or not following orders when I didn't get better. I don't know where doctors get the idea that a person would go to the doctor just for "attention"--as if we get any in a 10-15 minute office visit.

This prejudice against women can not be overstated. I'm sure everyone thinks they are more enlightened, but so many doctors still think women are whiners and hypochondriacs, and not just males--I've had female doctors treat me that way too. I would not have had my sinus surgery or my wheat allergy diagnosis if it weren't for my husband. His presence in the exam room causes a complete 180 in how the doctors treat me. In the 21st century, it should not take my husband coming with me to the exam room to get a doctor to take me seriously.

Whether it is celiac or something else, believe your patient, and KEEP LOOKING for an answer. And if you don't know, have the humility to admit you don't know, and send us to a specialist you think might.

So many suggestions for future docs....so little time!

First off, I have to agree wholeheartedly that one of the best skills a doctor can cultivate is listening. Not all patients are mentally unstable, lying or are hypochondriacs. And chances are, a patient will know if how they are feeling now is different from what their "norm" is or was. Don't tell them how they are feeling!

Connect the dots. This statement by a previous poster truly should be looked at again. There is more to healing and curing than matching symptoms to a pharmaceutical. Don't listen to a patient's list of symptoms and automatically be mentally prescribing medication. Keep an open mind and be thorough in assessing history. Ask more questions to get a handle on potential underlying issues.

Educate yourself beyond the minimal requirements to graduate. Nutrition is barely touched upon in school. That doesn't mean you have to get a secondary degree to be a dietician. But it would be immensely helpful if you understood a bigger part of the role diet can play in illness. I can't begin to tell you how many times I told my dd's pediatrician that her "episodes" were so much worse after eating certain foods. I was told emphatically that studies showed there was no correlation between food and behavior. Well, my "study" with my daughter proved the two were unequivocably connected. Work with your patients on this and realize that they live with themselves and their children 24/7. You do not. When it came to my child, I had the degree. Do not discount parental observation offhand. Their observations should be used to help you better diagnose.

Make your patients "own" their health issues. Make them actively participate in their diagnosis and recovery. If you refer someone to a GI, then tell them to keep a food/symptom journal until their scheduled appointment. The patient may begin seeing a pattern and if not, you may be helping another doctor find a problem more quickly. It may also help in unearthing potential deficiencies going on.

Do NOT discourage patients who you think may have Celiac by telling them "Well, I'm going to run these tests, but let's hope it isn't that because the diet is IMPOSSIBLE". Unless you've been on a gluten-free diet for a year or so, then you have no clue as to how hard it is or isn't. To an outsider, it will seem difficult or somehow more work than it is worth. But to someone who is suffering with a myriad of symptoms because of it, the diet is an absolute godsend. Let your patients decide how useful the diet is for themselves. My dd's doctors put us through hell for over 6 months straight and were dead-set against us even trying the diet. I put her on it despite their objections of limiting the diet of a FTT child. The results in just 24 hours were nothing short of miraculous. In 3 months time, we were back on the growth chart. We've maintained diet for over 3 years now and I wouldn't change a thing. But I am still angry at the short-sighted way my dd's doctors approached this and how ignorantly arrogant they were during a time when our lives were in crisis. Their advice was completely backward in my opinion. When a child is FTT, food allergies/intolerance should be the first route of exploration....not pushing supplements that are loaded with known allergens! BTW, my entire house is gluten/dairy/soy and egg-free. "Healthy" people eat over quite often and there are no complaints and they genuinely don't know they are eating allergen-free. Yes, it is more work to be this way, but it is far from "impossible" and the benefits have not only helped my dd, but have helped dozens of others whom we have met. Our struggles pushed others to look deeper and we have been able to assist other long-term patients in finding better health from a myriad of disorders (hypercholestemia, asthma, psoriatic arthritis, rheumatoid arthritis, ADHD, chronic fatigue, chronic ear infections, GERD, MS, high blood pressure, peripheral neuropathy). All of these have been directly related to food intolerance. All were treated for years with meds with no significant changes. And all have been either reversed, put into remission or made infinitely better by diet (and many of these people are now off all meds). You would think this is "bad" for business...to actually heal someone and have them stop coming in. lol! But it isn't. We had one doctor who helped us immensely with our issues. We have referred all of the cases above to him and in turn, all of those patients referred their friends to him. He's had to expand his clinic twice in the past 3 years to accommodate all of the referrals! And God bless him....he's still maintaining an excellent standard of care and still allots 45-60 minutes for his first appointments to try and accurately assess them from the start.

Don't use a sledgehammer when a fly-swatter will do. When my father was dx'd with cancer, his oncologist was constantly trying to prescribe morphine for pain management. My father told her repeatedly that one Advil worked quite well but considering liver involvement, he wondered if there were something "safer". Meanwhile, studies are now showing that using morphine on cancer patients promotes metastasis. Not that it made a huge difference. Our oncologist missed a systemic candida infection in my father (busy prescribing without physically evaluating the sore throat another doctor diagnosed as candida). And she didn't listen to the dozen other symptoms that could be attributed to a systemic infection. She prescribed antibiotics intravenously based on elevated white blood cell count (he'd ALWAYS had an elevated count...for decades). I asked her to reassess, she did and quickly responded by giving him meds for the candida. Dad caught pneumonia and passed away a week later.

And lastly, please network. Cultivate relationships with other experts in different fields (both allopathic and alternative). Do not fall into the same rut of thinking that all alternative practioners are "quacks". Your patients may find alternatives that truly help them just as other find practioners who are worthless. Be aware of who's good and who isn't. Obviously, you won't be referring patients to alternative practioners in many cases. But if a patient is set on using one, you may be able to steer them towards someone who upholds a good standard of care. The doctor I mentioned above is an MD who noticed that the current system was not working. So he then continued his education to include acupuncture, herbology, nutrition, and chiropracting. Does he practice all of these in his office? No. But he applies the knowledge to treating the whole patient. That probably explains his rate of success with some pretty lost causes. And he is more than happy to work with a patient's current team of doctors. He always tells his patients to check with their other MDs on certain routes of therapy. And he also tells his patients that if they don't feel comfortable with something, to ALWAYS look further into it before committing. One could only wish that all doctors adopted a similar attitude.

Good luck to you in your studies and future practice!

I know this has already been said but if doctors would just listen and trust that patients might not have a medical degree but we do know our own bodies. The other thing is not everyone fits a textbook list of criteria but if the symptoms are there at least consider it!
Now I will tell you some of the crazy things I have been told by my doctor, my kids ped and the GI I was refered to.
The pediatrician said in 20 years of practice he has never diagnosed celiac and has only seen 2 kids with it (they were diagnosed by a GI) I asked him to run the celiac panel and genetic test on my girls since I have the HLA DQ2 gene and he said he didn't know there was a genetic test for it. He said he never tests for celiac because it is so rare. I told him maybe if doctors would test for it more often maybe they would find its not as rare as they think! He asked me if I was Irish because mostly Irish have it. I honestly don't know if I am but that shouldn't even be a question. Unless you can only get a disease if you are Irish and no-one else can, don't even go there. To be fair to the ped, he listens to me like I have half a brain. He trusts me and values my opinion and unless I was asking him to do something he thought was unsafe for my kids and there was no evidence to suport it, he is willing to at least humor me with testing.

My doctor said he has never seen or tested for it either. I had to tell them which tests to run and help the nurse look through the book of codes to find which one I wanted done. When he called me with the results of the genetic test he said "the good news is I have your results, the bad news is I don't know what they mean."

The worst was the GI I was refered to. He told me it couldn't be celiac and not to waste my time trying the gluten free diet. He told me I had IBS and that I should take 3 tablespoons of metamucil 3 times a day. I suffered from terrible diareah and couldn't imagine what good that would do me. He refused to scope me because he said there is a 1% chance of peforation and didn't think it was necessary. I asked him what symptoms I would have different then I had and he said none they would be the same, but since my bloodwork was negative (even though they missed one test) it was virtualy impossible. He said celiac is very rare and a false negative was imposibly rare. I left there crying and decided to try the diet anyway. Well 3 months later I have not had diareah (except for a couple supid mistakes) or a headache since! I feel like I got my life back. I am only 32 and have been suffering since I was 12. What does it hurt to say go ahead and try gluten free? He called me last week to see how I was doing and I told him I tried the gluten-free diet and was so much better. He said it won't last. He now says he will scope me if I will go back on gluten for 3-6 months, just to prove me wrong. I asked him why he cared if I felt better why did it matter if I wasn't eating gluten. He said it wasn't healthy to remove such a huge part of a diet. He asked me to come back in March and I would probably be symptomatic again and then he could treat my IBS. I was so mad my husband kept asking me why I cared what he said since I knew the truth and I said because think how many people would listen to him. I am lucky I know better and didn't. It's bad enough to be ignorant to a disease and not suggest testing for it but for a doctor to completly deny the possibility when I have the gene, I had the symptoms, the symptoms went away when gluten was removed, and I can eat the common "IBS trigger foods" with no symtoms at all. Thats bad. I still don't know that I have celiac but who is it affecting besides me if I don't eat gluten?


Enough ranting about stupid doctors. We all have our horror stories, but trust the patient, listen and not everyone fits a "mold" is my advice.

http://consensus.nih.gov/2004/2004CeliacDisease118html.htm

The best interaction I had with a doctor was when, after hearing all my symptoms she started to talk, then stopped and said "What do you want to do?"

I think the best I can give is a combination of "listen to your patients" and "connect the dots." Most people know their bodies quite well. We are not stupid, not matter what education we have or do not have. If you think we are wrong, prove it. Don't make us prove to you that we are right, and don't just blow us off.

I have heard that doctors are trained to "look for horses, not zebras." Don't automatically dismiss the zebras until you KNOW they are not there.

I had an allergist once who tested me for everything under the sun except gluten. He said he couldn't find anything wrong with me but I kept coming back so I must think something was wrong and I should consult someone else. I think he just wanted me to go away.

My daughter had whooping cough as an infant. I went from doctor to doctor to ER at Childrens Hospital and everyone would ask if she had had her shots. When I said that she had, they stopped asking questions because not a single one of them knew that the shots are not 100% effective. They just blew me off as a new mom. The intern at Childrens was particularly annoyed that I showed up and didn't even pretend to hide it.

Know your specialty inside outside upside down, but always remember that you will never know everything and be open and willing to learn from the most unlikely source.

Thanks for the opportunity to air some peeves.

1.) It would be helpful if doctors were taught more about the healing process of the bowel in a celiac patient. The doctor should understand the various stages of healing and the challenges that come with each. For instance, a patient with recovering villi will absorb medications differently than one with severe leaky gut.
Also, patients often develop corn allergies and become lactose intolerant when they didn't believe themselves to be so before.

2.) Also, healing villi isn't the only concern for a newly diagnosed celiac. Doctors should be alert to the possible emotional, and other central nervous system aspects of the disease and make sure the patient knows that many celiacs, like her, have celiac disease-related CNS issues (depression, epilepsy, anxiety) and need aggressive care. I have spoken to doctors who feel a relationship between celiac disease and CNS issues is impossible, that antibodies, for instance, can't pass the blood-brain barrier.

3.) I'd like it if doctors knew to look for physical signs of celiac disease such as stunted growth and DH. DH may look similar to acne in some people, but itches much more. Knowing to look for the purple-dot scarring of past DH rashes would make some celiac disease detection easy. Doctors should know that dermatologists misdiagnose DH as acne, and should ask their patients about skin problems.

4.) A huge concern to new celiac patients is small intestinal bacterial overgrowth. Doctors need to become familiar with it and learn how to detect and treat it. The damage done to the small intestine during active illness seems to make its environment more palatable to large intestine e.coli. E.coli can be a very bad character when he leaves home and is suspected by researchers to be involved in the evolution of other intestinal problems such as Crohn's, ulcerative colitis, and IBD.

5.) Last of all, I would hope that doctors look into Elaine Gottschall's "Specific Carbohydrate Diet" and learn what the difference in effect on the bowel is between monosaccharides and polysaccharides. Polysaccharides don't break down into single molecules early in the digestive process so they remain a potent source of energy for unhealthy bacteria who thrive on it. If e.coli have become emboldened by the poor health of the small intestine and have crawled up beyond their normal bounds, they can wreak havoc on the digestion and even the immune system as intestinal contents leak into the abdominal cavity. The implications that this process has for the "brain-gut" premise should be a topic of open debate, because its challenges can have a devastating effect on the whole patient.

6.) Oh, one more thing. Doctors should know that hypochondria is a very rare mental illness that only affects one in a thousand people. People really sick aren't going to be motivated to lie about their condition, they should be given the benefit of the doubt. The four women over forty (all strangers) in my painting class a few years ago, had all been told at one time or another, by a doctor, that their physical issue was "all in their heads." The odds on them all being afflicted with hypochondria is astronomical, yet they all paid doctors to give them this substandard, disrespectful treatment. As the fifth of these women, I too was once told, by a psychologist, that since doctors could find nothing wrong with me, I was a hypochondriac. I didn't get diagnosed for another ten years, after seeing more than twenty different doctors. I'm recovering nicely, thank you.

People like me have cause to be very careful of our future treatment and we have learned to take responsibility for our care. This should be respected if trust is going to be renewed.

Sincerely,
Kit, diagnosed May 01, 2002 with celiac disease, Aug. 2002 with Graves' disease.

I agree with the majority of what's been stated, however, there is much more that could be added.

It all boils down to not trusting without question what has gone before whether the information comes from doctors, hospital records, insurance companies, or wherever. I have been mis-treated so very long (66 years!) that it has caused numerous problems that have required surgery and made me distrust doctors in general.

After being mis-treated for years, I finally found a Gastroenterologist who looked at ME and listened to ME and did his own investigation and determination...and really helped, at long last.

Take an interest in your patient's entire life, at least enough to know whether your assumptions are correct or not. Why? Because something like coping with an Asperger's Syndrome child at home in addition to other situations like wood heat (bad for mold allergy sufferers and asthmatics), a husband who was severely injured on the job and so on can grossly distort responses to medications or other recommendations and your perception of the patient as neurotic or whatever hang-tag you choose to assign them.

Forget the doctor as god syndrome and relate to us as a human being first and doctor second...you'll see better outcomes and be more respected by patients and peers.

If you are being pressured by Big Pharma or the hospital(s) you are associated with to do what is not in your patient's best interests, beware! You are no longer a doctor and have become just another cog in the money go around. Don't let it happen to you. An example: a doctor who was pressured to 'help the hospital pay the bills' and ordered unnecessary tests repeatedly to run up my bill. He didn't even wait the necessary time for a test of a new dose level to be valid before ordering yet another blood test.

If you have a 'difficult patient' who needs explanations of everything, who questions everything, and is less than passive and cooperative, consider that they probably got that way by being mis-diagnosed, mis-treated, and steamrollered by prior medical doctors and this is an expression of their learned mistrust and frustration. Don't take it personally...see it for what it really is: a lesson well learned by your patient. Until you prove yourself to the patient as caring and conscientious in your approach, you're just another one in a long line of potential disappointments.

Sondi

Doctors should actually listen to what the patient has to say, let us tell them our own symptoms and thoughts, THEN they can give their opinion. They should have no right or reason to jump to conclusions or tell people they're wrong without testing, and most of all NEVER tell a patient that you refuse to help them and accuse them of it being "in your head"! (that's just from my own experience...)

~ Lisa ~

My gluten-intolerance caused me to put on massive amounts of weight. I'd go to the doctor, and say I'm putting on weight for no good reason, and he'd just say 'eat less, exercise more'. It got to the point where I was exercising for 3 hours a day, and only eating 500 calories and was anemic, but still obese! (Of course, most of those 500 calories came from sandwiches).

I only did an exclusion diet to stop the stomach cramps I'd get, and it was only once I'd realised gluten was the problem, and cut it out, that I got down to a normal weight (I had to buy all new clothes!). I went back to the doctor and I said 'Look, I'm eating more than I was before, just uten-free stuff, and I've lost weight - I'm gluten-intolerant' and he said - Oh well, yes, you might be'

I could have screamed! Ten years I'd been obese, and he'd (and two other doctors) had chosen to believe I was lying about my diet and exercise rather than suggest I might be gluten-intolerant.

So first I'd tell doctors - House is wrong. Patients do not always lie.

And second - I was being treated for menstrual problems, and I told the consultant that 'd had a lot less pain and blood since I cut out gluten, and she said that there were some studies just beginning to be done that showed the same thing. And if ever I've accidentally eaten gluten, (why is it in Mars Bars now?) i've had the most terrible period cramps and very heavy bleeding.

so second - not all gluten symptoms are related to the gut. It can have an effect all through the body. Next time a woman has heavy bleeding and cramps every month, try suggesting the gluten free diet.

Listen to us!! I was in incredible pain. I had about a million symptoms, and I was told by (I think I lost count) 12 doctors that I would never get better without a psychaitrist. I needed to be put in inpatient care for my insanity. So I went into a therapy program... and guess what he told me? "Hey there IS something physically wrong, but I don't know what it is, maybe medical science has no clue and can't help you, but that does NOT mean you aren't sick!!!"

If ANY of those doctors had listened, I may not have suffered as much PERMANANT damage. All I wanted to hear is that they believed me, even if they couldn't help me.

Good luck in med school!