183 replies to this topic

[HappyMomof5]

I have read everybody's posts, and if it weren't so sad it'd be hysterical. Of course, I have an inappropriate laughter response anyway, but...

Okay, I must admit, my doctor was a lovely man who wanted to do a colonoscopy from the start. Three months later I was miserable enough to agree to it and was confirmed celiac by biopsy. Total time with horrible stomach pain--on an off for five months before diagnosis. However, now I know why I'm so short, never had any muscle, always needed more sleep, etc.

Having had a friend with it, I knew what was Celiac disease was. I was in such denial that I made him show me the lab results twice and prove why it was what he said. When it finally sunk in, I looked at him and said, "But I don't want to have that!" To his credit, he patted my hand and said, "I know, sweetie."

So for this thread I am going to "borrow" my friend's doctor horror story: He said, "You have IBS. Lots of people get it. GET OVER IT."

Lol, I can't imagine saying that to someone, much less someone who paid to come see me.

[psipsina]

Primary care doc freaking out because I ditched the rheumatologist he referred to explains to me that food intolerances and systemic candida infections are made up by doctors so they can write books to offset the losses they face with lower reimbursements due to the current situation with insurance companies. He tells me that there is no way that my dietary change made my arthritis go away, that it doesn't matter that there was no evidence of the arthritis except for my pain and an elevated C reactive protein level and tells me I should start taking a the drug that the rheumatologist wanted to put me on that can cause lymphoma which is what killed my father. He tells me I should know better since I'm studying to get my MD!?! No buddy, YOU should know better! (btw its been two years since this conversation and my hands are still fine . . . but of course it had nothing to do with the food, thats impossible )

[ravenwoodglass]

Primary care doc freaking out because I ditched the rheumatologist he referred to explains to me that food intolerances and systemic candida infections are made up by doctors so they can write books to offset the losses they face with lower reimbursements due to the current situation with insurance companies. He tells me that there is no way that my dietary change made my arthritis go away, that it doesn't matter that there was no evidence of the arthritis except for my pain and an elevated C reactive protein level and tells me I should start taking a the drug that the rheumatologist wanted to put me on that can cause lymphoma which is what killed my father. He tells me I should know better since I'm studying to get my MD!?! No buddy, YOU should know better! (btw its been two years since this conversation and my hands are still fine . . . but of course it had nothing to do with the food, thats impossible )

Okay that doctor takes the award for stupidity. At least my Rheumy actually thought to test me for celiac. Too bad I don't show up in blood work. Perhaps this doctor is more worried that if he actually diagnoses folks they won't need HIM anymore and his bottom line will go down. After all folks with celiac related arthritis usually go into complete remission without drugs if they go off gluten. I wish I had known before all the disfiguring damage occured to my hands, but at least they work fine and don't hurt any longer.

[psipsina]

Okay that doctor takes the award for stupidity. At least my Rheumy actually thought to test me for celiac. Too bad I don't show up in blood work. Perhaps this doctor is more worried that if he actually diagnoses folks they won't need HIM anymore and his bottom line will go down. After all folks with celiac related arthritis usually go into complete remission without drugs if they go off gluten. I wish I had known before all the disfiguring damage occured to my hands, but at least they work fine and don't hurt any longer.

Yeah he was special and not in a good way. I think he was more frank with me about his opinions because I am a part of the medical fraternity. He basically was of the opinion that I was to smart for all this "quackery". He obviously has a very condescending viewpoint of alternative healing modalities and felt very threatened that I saw a naturopathic doctor. And of course my discovery of my food allergies saves me from having to see a rheumatologist all the time and having to take expensive pharmaceuticals so I can see why doctors who went into medicine for the business and not the healing would be threatened by the idea of food intolerances. How many physicians rely on repeat visits from patients suffering chronic diseases for their income? We learned in medical school that the traditional Japanese model of medicine was set up so a doctor was only paid when their patient was healthy and the patient stopped paying when they were sick which makes alot more sense to me.

[Adelle]

Some of my bad experiences have been celiac symptom related, some not. There are more, but these are just a few major examples.

1) When I was 15 I went to a doc for my first "yearly exam". I cried (because nobody told me what the exam entailed and I'd been assaulted before so I was really upset). She told me that I would have to "go somewhere for a while" and she left me alone in the room (locking me in the room) while arranging for me to be taken to the state mental hospital (she said I was suicidal, but I was not. Luckily the receptionist knew my mom and called her. My mother BROKE the door and took me out. That doctor is still in practice.

2) I have a strange allergic reaction to nothing in particular (same as my dad as it turns out). My lips swell. Large enough to split open. I went to the ER once before I knew what it was (after all, my lips are close to my throat..... I was scared!). The doctor said, "well, women pay for collagen injections, consider yourself lucky", then he did the "talk to the hand" gesture!!!! Oh then he sent me a bill for $800 on top of what my insurance paid for (WHAT!?!?).

3) I also had 10 doctors tell me it was all in my head. Being a young woman, obviously I just needed prozac and therapy. My therapist (who had previously worked in chronic pain management) told me I was right!! He said, "just because medical science can't figure out what's wrong, doesn't mean there isn't anything wrong!! He was the first person (other than my husband) who believed me.

4) After I went gluten-free, I walked (unaided) into my (then) doc's office, which I hadn't been able to do for a year or more. He told me my bloodwork for celiac had been "mildy positive" so it wasn't necessary to follow such a complicated diet. AHHHHH!!!

5) I thought my current doc was a decent doc. Then DH and I went in to ask about fertility testing (we'd been trying for over a year so we wanted to just see what our options were). He told us that we shouldn't worry yet because we're too young (I'm 23 and DH is 24). He also asked if we had intercourse regularly (um no, we're TTC by abstaining...), and why we were so worried. He also went on and on about how his wife is 37 and she is pregnant, so don't worry, we can always try later.

I currently don't have a regular doctor.

[Phedre]

The "it's a female thing" is my FAVORITE. I love how every doc I've been to and told about my symptoms have asked me if was sure I wasn't pregnant, then insisted on a pregnancy test. The last time that came up, I asked the man if he'd like to see my tampon (I was on my period at the time which explains the offer AND why I was so testy... ) Then of course he told me that it was "very common" for women to experience bloating, cramping and diarrhea on their period...

That's fantastic but what about the other 3 weeks of the month? And why only right after I eat? Ugh.

I've been told repeatedly that my stomach issues are because of my stress level and/or my stressful job, yet my symptoms have been constant since about the age of 12, even when I was in less stressful jobs and doing well in life. Riiight.

Anti-depressants HAVE helped me but clinical depression also runs in my family so that's not a big surprise, however even with lots of anti-depressants and anxiety meds, nothing changed... But of course, it's still "stress."

Besides the female thing and the stress excuse, my next favorite has to be the "oh, your family has a history of celiac and you have the same symptoms as your other family members so you automatically think you're positive, well you aren't a doctor so how can you be so sure?" As a counselor, I discourage self-diagnosis in any situation but if the shoe fits (especially when no other does!) why not wear it around for a bit at least?

Ugh, sometimes I feel that if I were living somewhere else besides the US I would have been diagnosed or at least taken seriously much sooner. ::rolls eyes::

[debmidge]

We learned in medical school that the traditional Japanese model of medicine was set up so a doctor was only paid when their patient was healthy and the patient stopped paying when they were sick which makes alot more sense to me.

I've heard that about Asian medicine before....

[MissAmie]

I love this thread! Where do some of these doctors get their degrees???


My mom probably has Celiac.
My brother is getting tested and has classical GI symptoms.
My grandma was diagnosed 20 years ago.
We are pretty sure my greatgrandma had it....Her symptoms were classical.
All three of my kids have wierd issues and all three have one gene.....

When I told my doctor I wanted to get tested due to my skin and vertigo issue, knowing my family history, she said...
"Its a really expensive test." At that point I wanted to tell her off and insisted I was not leaving without a lab slip. She then asked me what kind of test I wanted...NO JOKE! I told her I wanted the same kind my kids had, the Promethius Celia Plus. She had to go check with the GI to make sure that was accurate as she was looking at my kids electronic medical charts. Then she came back with the lab form and wanted me to point out which lab I wanted. Yeah, lets just say I am not going back to her. I got my results back and I think I have a double dose of one Gene...The DQ2 which all my kids have. Not sure what to do now.

If anyone knows of a good Sacramento doctor who specializes in Celiac, let me know.

[shayesmom]

1) While talking to your one year old child's pediatrician about your concerns involving her 7-8 loose, foul-smelling bms she has each day. The doctor looks you right in the eye and says "That's perfectly normal".

2) When you further explain to the same pediatrician that your child seems to get this diarrhea along with hyperactive behavior after eating certain foods....like oatmeal and crackers. The doctor once again looks you in the eye and says, "There is absolutely no scientific evidence that food affects behavior. It simply doesn't happen."

3) STILL trying to explain to the doctor that your child's hyperactivity is off the charts, the child is sleeping less than 10 hours per day, won't sit still (even to eat) and that something is just, plain WRONG. The doctor then tells you, "Perhaps you just have unrealistic expectations of what parenting is". By this time, my dd fell off the growth charts so the pediatrician's advice to me was, "Make sure to feed your daughter plenty of pasta, mac and cheese, bread and add butter to everything. Also, have her drink a Pediasure per day. Oh, and you'll need to bring her in every two weeks for a weight check". I cannot even begin to describe just how bad things got after this gem of "professional" advice.

4) You follow the pedi's advice almost to the letter (except for the Pediasure as after giving dd just one and seeing her writhe on the floor in pain for over an hour...I wasn't about to do it again) and things get much, much worse. The one year old is sleeping less at night then when she was a newborn! Two weeks later, you tell the pedi about the effects of the Pediasure. Pedi's response, "I don't care about that . Your daughter absolutely NEEDS to drink it every day. Make her drink it!". I then ask about possible food allergies (the Pediasure reaction really began making me wonder). Pedi insisted that that wasn't possible and that I'm over-analyzing. Still, I did not continue with the Pediasure.

5) About 2 months into the weigh-ins and seeing no progress...rather regression, dh and I decide we should find another pediatric practice to go to (we'd seen 3 doctors in this practice and the above is what we got). So at the appointment we tell the pedi that we no longer will be coming in for weight checks and will be pursuing a different route. The pedi's response, "You're daughter is underweight on her growth charts and is Failure to Thrive. You will absolutely keep coming in with her or I will have to report you to CPS so that they can further evaluate the care she is receiving at home". Dh got a glimpse of dd's chart. It read "Parents appear to be attentive". She then at least wrote us up for more testing (it took another month to be tested for food allergies and celiac).

Thank goodness that my sister was going to an alternative medical school at this point and mentioned all of this to the woman who taught acupressure, herbology and also had recovered her autistic nephew with diet therapy. That woman called me long distance, asked me questions for about 20 minutes and said, "I'm 95% sure that your daughter has celiac disease and most likely an allergy to milk. From the information you provided me about her growth and when you started solids, you can see a pattern of weight loss from the time you started cereal. Remove all grains and dairy for 4 days and see if it helps". PROBLEM SOLVED! By then, we also got the RAST results which confirmed a dairy and egg allergy. Celiac tests were negative as we'd already taken grains out prior to testing and we also removed soy.

Now would someone explain to me why none of the 3 pedis in the first practice were able to apply that kind of logic???

[dbmamaz]

IMHO, medical school teaches the medical model like gospel, until they've convinced doctors that there is no truth outside of the AMA official policies. Furthermore, they are required none/6 credits (i've read both) of nutrition classes, and those probably focus on obesity.

The part I really dont understand at all is why both parents and doctors seem to think that doctors should give parents parenting advice. They have absolutely no training in that at all. I do believe that some pediatricains think all mothers are hysterical and they just have to calm them and say, dont worry, your kid is fine, a lot, to calm these hysterical mothers.

The other thing i really dont understand, but I believe its HMO related, is why doctors NEVER recomend you to a specailist unless you ask for it - I would think doctors would say, hey, i dont know how to help you, its time to consult a (xyz) doctor. But they dont, they say, all my tests show up normal, so you are fine. I dont get that at all.

Sometimes I think most doctors just dont live in reality, they still think that all truth can be found in an academic settings and that they, having been through medical school, know everything. Of course, there are enlightened people in every walk of life, but I wonder if the medical establishment is just as good as the military establishment at brain-washing the weak to believe everything they are told and never doubt it.

I'm still looking for a doctor i trust . . . but since i barely trust any people at all, I might never find one . . .

[psipsina]

Sometimes I think most doctors just dont live in reality, they still think that all truth can be found in an academic settings and that they, having been through medical school, know everything. Of course, there are enlightened people in every walk of life, but I wonder if the medical establishment is just as good as the military establishment at brain-washing the weak to believe everything they are told and never doubt it.

I'm in medical school and I think that the problem is that with the massive volume of information you're learning its hard to realize that there is still more out there. You wouldn't believe the amount of stuff we're expected to learn . . . one professor told us that we will forget more in one year than most people learn in a lifetime and I think its true. The other problem is that as scientists we want to see studies to prove if things work and no one will pay for studies on alternative medicine. Big pharma pays for drug studies but no one stands to profit from a gluten-free/CF diet so no one will pay for the studies. My school is pretty progressive and we have a club for alternative medicine and a few lectures built into the pre-clinical curriculum (like vitamins/herbs in biochemistry or accupuncture in neuroscience). During one lecture a student asked how we now that all these effects aren't placebo and the professor responded with something that I will take with me throughout my practice . . . if its helping our patients thats what is important, not how it is helping. We all get so caught up in understanding mechanisms and pathways that it is easy to lose sight of what is most important . . . the patient.

[nikky]

wow you all badly need new doctors

i thought a registra (my GI had a full clinic,) was bad for talking to the wall

the same registra (he didnt bother to tell us his name) also took half hour to find a vein in my arm and asked my mother questions (about me, while i was in the room) that she didnt really know the answers to

luckily i dont need a new doctor though because my GI and GP are both really good........ my GI phones at 8pm just to check how im doing....... so have faith there are good ones out there

[babygirl1234]

oh heres one for you last week i went for my endoscopy for a plopy removel and ive been having burning in my upper stomach everytime i eat, by then i had it for a week i kept on calling the doctor 2 time the week before, so anyway i told her about the pain in my upper stomach everytime i eat she goes "well there wasnt no inflamtion or anything keep taking your prevacid 2x a day and take tums and call us in 2 or 3 weeks if it still there" i felt like saying hello of course its gonig to be there you idito because ive been doing that for the last week and it still hurting grrrrrrrrrrrr doctors suck sometimes i tell you

[itchygirl]

I'm 87 lbs-the doc looks at me and goes-"you need to stop losing weight" YOU THINK! Then there was the gastro who told me it was OK to live on enteral formula for the rest of my life....

[home_based_mom]

Years ago a co-worker was seeing doctors for bone pain. After years of telling her it was arthritis - and nothing they gave her even touched the pain - they took x-rays.

She had bone cancer head to toe, and didn't live even the 6 months they gave her.

Just one of the many reasons I don't have Kaiser.