[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 http://www.allergy-link.com/
Dr. Baptist is way ahead of many of his peers in treating Celiac, ADHD, Autism etc etc etc.

heathen, on Dec 25 2007, 09:32 PM, said:

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]

marnie1951, on Dec 26 2007, 03:08 PM, said:

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.

[marnie1951]

blueeyedmanda, on Dec 26 2007, 02:23 PM, said:

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]

marnie1951, on Dec 26 2007, 03:49 PM, said:

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.