If You Could Tell A Med Student Anything...

[debmidge]

On Dieticians----

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

[blueeyedmanda]

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.

[loco-ladi]

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.

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!

Finally, keep in mind that just because I don't have a medical degree does not make me stupid.

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.

Finally... just how dangerous can a doctors arrogance get....

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"

[ravenwoodglass]

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'!

[par18]

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

[kbtoyssni]

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.

[Ashes]

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!

[sneezydiva]

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.

[shayesmom]

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!

[JustMe75]

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.

[Joyous]

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[Jestgar]

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?"

[home-based-mom]

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.

[Kit]

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)?

[Kit]

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.

[Sondi]

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

[num1habsfan]

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 ~

[Michelle B]

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.

[Adelle]

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!

[jlbuescher]

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)?

Hello~I am wondering, since you in the medical field, if you have heard of any good Gastros in the St. Louis area...

I am recently diagnosed with Celiac...and am frustrated because I am not sure what to do next. I was diagnosed by blood test at IM office, then they just suggested I see a dietician for Celiac Management. But, from what I am reading, I need to have a Gastro do a biopsy of my intestinal villi to check for damage, AND possibly get more bloodwork to see if I am deficient in anything. Any help or suggestions would be greatly appreciated!

Thank goodness for all of these celiac websites!

Lisa

jlbuescher@yahoo.com

[heathen]

Quick update: I'm now a third year student, and thanks to several staff members at my school actually having Celiac, we've gotten a pretty good education on it--not to mention, I and another classmate have Celiac. The good news is that most of my colleagues are interested in hearing my story and other stories of people who were overlooked or misdiagnosed. I really think that change is coming, which is fabulous for the thousands-millions that are still not diagnosed and for those of us who deal with this predicament every day. As for specific doctors, my best advice is to get in touch with your local support group (a good idea, anyway) and ask who they like, don't like, etc. I know our local group in Little Rock updates a list each year.

[Ahorsesoul]

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)?

Have an open mind to explore all the possible solutions for a patients symptoms.

[Sher B.]

Doctors should take a little more time getting to know their patients, like they did years ago. Now , they come into room and review chart while you are sitting there> Why not prep before entering patients room? They also need to share info with each other and work together to improve patient care. Ive had a neuro, gastroenterologist, PCP, endocrinologist and an autoimmune disorder specialist who were not on the same page. The gastro would say you need to ask your neuro about migraines, the neuro would say you need to ask gastro about the migraines since they are associated to celiac,,,,,what???? This has been so frustrating and I think patient care has plummetted!!

[heathen]

Doctors should take a little more time getting to know their patients, like they did years ago. Now , they come into room and review chart while you are sitting there> Why not prep before entering patients room? They also need to share info with each other and work together to improve patient care. Ive had a neuro, gastroenterologist, PCP, endocrinologist and an autoimmune disorder specialist who were not on the same page. The gastro would say you need to ask your neuro about migraines, the neuro would say you need to ask gastro about the migraines since they are associated to celiac,,,,,what???? This has been so frustrating and I think patient care has plummetted!!

Getting to know patients and looking over a chart before going in a room would be great and i try to let my patients know that i truly care about their concerns, even if i don't have an answer... but this takes time, and when you start running late, patients get angry quickly. i have completed 2 months of clinic work, and the number one complaint i get when i get into the room is "why did i have to wait so long?" between that and trying to see several patients in one day, i don't really know what the solution is... Being a good doctor takes time which patients don't have to sit in a waiting room. any suggestions?

[nu-to-no-glu]

I think that it's important that drs realize there are many people who don't fit "typical profiles"...for example, my sister was diagnosed with type I diabetes at 36 years old, with no previous symptoms or dignosis beforhand (as you know, most are diagnosed with this in childhood). Numbers of drs dismiss people with celiac bc they are overweight and don't fit "the typical profile"...I think we all know here that none of us fit one specific typical case.