If You Could Tell A Med Student Anything...

[heathen]

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)?

[tarnalberry]

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.

[ravenwoodglass]

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.

[Piccolo]

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

[pixiegirl]

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

[blueeyedmanda]

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 gluten-free 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.

[HAK1031]

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.

[blueeyedmanda]

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.

[Offthegrid]

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.

[Joyous]

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.)

[tarnalberry]

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...

[marnie1951]

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 Open Original Shared Link

Dr. Baptist is way ahead of many of his peers in treating Celiac, ADHD, Autism etc etc etc.

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)?

[blueeyedmanda]

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 Open Original Shared Link

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.

[marnie1951]

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.

[blueeyedmanda]

On Dieticians----

I somewhat disagree with your take. The first dietician I saw tried to sell me Mary Kay cosmetics.

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.

[Megalofyia]

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.

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.

[munchkinette]

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.

[Eriella]

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!

[gfmama]

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.

[Lisa16]

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

[TrillumHunter]

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.

[blueeyedmanda]

\

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.

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.....

[cmom]

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!!!!!

[debmidge]

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

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...

[debmidge]

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.)

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.