Officially Lost Last Shred Of Faith In Medical Community

[lawstudent]

I have had a myriad of small health issues over the last 15 years, and in spite of some tests and many visits to doctors, was always told that there was nothing wrong.

This year I started having pain in my side and after a scare about liver disease because of an incompetent x-ray tech, I started doing some hard research on the net. To make a long story short, I came across this board, and eventually followed some posts to the yeast connection board and found out about mercury toxicity. I believe I do have mercury toxicity, and am working on that end of it. However, I am not sure if I have celiac, yeast overgrowth, or both since the symptoms are so similar, but I figured an "expert" could help me figure it out so I could take the appropriate action to treat it.

Anyway, after waiting 8 weeks to see a GI who supposedly knows about celiac, I had my appointment yesterday. He spent all of about 7 minutes with me, asked me none of the things he should have (like, is there any family history of celiac?) and told me that I don't have celiac because I have had weight gain, not loss. His conclusion was "IBS", apparently as a result of my complaints of D & C. I did stand my ground and insist on a celiac panel, but I'm not even sure he is doing a complete panel. He offered to do a colonscopy, but no mention of an endoscopy.

He totally refused to listen to anything I had to say about yeast overgrowth, never looked at the symptom form I completed, nor did he look at the page I brought with me with a list of all my symptoms and the approximate dates they appeared. He turned up his nose at my suggestions, apparently offended that I did my own research and essentially said that there are hundreds of diseases that all have the same symptoms, so thus I didn't really know what I was talking about.

Upshot: I will not be returning to this doctor, and I hope my GP is a little more open-minded, or at least will humor me and order the tests I request. I feel sure that I am on the right track, but I need assistance because I do need to narrow it down. I am totally open to other diagnoses if they are based on my symptomology, but all I got was someone who has a patient mill and doesn't listen!

Thanks for listening

[jerseyangel]

Hi Lawstudent, and welcome!

It's a shame that you did everything right--and the doctor still didn't listen or even take the time to consider something other than IBS, which we all know is just shorthand for 'he has no idea'.

At this point, I would think they'd want to do a full work up, that would include the Celiac Panel. I hope that your GP will really listen to you and order all of the appropriate tests. Good luck with getting to the bottom of this--let us know how you make out

[Guest nini]

it's a shame that we have to be our own best advocate when it comes to our health care. Unfortunately the Dr.s forget that they work for us, not the insurance companies... but that's another rant for another day... hopefully your GP will be more supportive, if not, you could always try Enterolab to see if you have indicators for gluten intolerance... you could try doing a candida cleanse first, see if that doesn't clear up your symptoms and then if it doesn't, then try the gluten-free diet (but only after you've exhausted all testing options)... if the gluten-free diet gets rid of your symptoms (or they at least start to improve, then you might have your answer. It might be other food intolerances besides or in addition to gluten, or it might be structural or chemical... (side effects from medications or other things) anyway... good luck with your search, hang around this board and feel free to ask any questions that come up.

[KaitiUSA]

Typical, stupid doctors....ugh! I wish I could knock some sense into them sometimes...sorry to hear about your bad experience.

[tiffjake]

Hi lawstudent! I have the same gain/not loss symptoms and thought my primary would be like that and he wasn't, so maybe there is still hope. I HATE to say this, because I hate to do it, but perhaps you could try to manuplate the situation a little bit. When you go in, ask about food intolerances. Ask questions, instead of showing things you found. I know that sound like stroking ego's, but some doc's need that......if you let THEM figure it out, then they will go with it, like a child......

On a more honest note, the yeast or gluten problem you could solve yourself. So if you don't find a good doc, you could still change your diet on your own!

My primary care doc called me "A Little OCD" because of all of the work that I did to prove my celiac disease, but he believed and agreed with me....so maybe yours will be like that. But just be careful to not self-diagnose (in THEIR eyes) because they will work to prove you WRONG, not RIGHT! I know that is pessemistic, but it is what I have seen on this board and hear from friends about doctors.

Welcome to the board, and I hope you find your answer soon!!!!!

[sparkles]

I am really sorry that you are experiencing all of this. It is difficult enough to deal with all sorts of symptoms only to have the medical community ignore your pleas for help. One of the biggest issues for me was the fact that celiac disease was not even a consideration for me because of my weight. I suffered through lots of other symptoms (from colon cancer, migraines, fertility problems, lots of digestive issues...etc) and never once did anyone think that it could be celiac disease. I was and unfortunately, still am FAT! I don't fit the profile. But after a month of vomiting and diahrea (still no weight loss), my doc put me in the hospital for 10 days to run tests. I had every part of me probed. I remember coming out of the encoscopy and the doc saying, "There is something in your upper colon that we need to discuss." My villa were so flattened that he could tell from just looking at them that the diagnosis was probably celiac disease. Looking back on all this, I realize that I was really pretty sick and I am lucky that I have been able to heal as well as I have. After 20 years, I have an answer and I know that it is not in my head.... unfortunately, I have neurological problems that will never go away because of celiac disease. Don't give up. As you read this message board, you will discover that there are lots of celiacs who are overweight... who in spite of CHRONIC diahrea and vomiting .... NEVER lost weight! The other symptoms should be enough to make the docs sit up and take notice. It is hard to always have to be your own advocate, especially when you are sick... but don't give up. There are lots of people here who have been where you are and are willing to give you their support. I wish you good luck on your quest for the truth!

[Ursa Major]

Hi, and welcome to this board. My doctor tested me for everything but celiac disease, because I was gaining instead of losing weight, too. Now I know that possibly 50% of people with celiac disease have unexplained weight GAIN not loss as a symptom!

I started seeing a naturopathic doctor a couple of weeks ago. When I told him everything that happened these past years, and that my doctor said she thought it couldn't be celiac disease because I was gaining weight, he just rolled his eyes. He said, "Doesn't she know that weight gain is a symptom of malnutrition?" Well, apparently not. At least not until I gave her a good lecture on it. Fortunately, she was open to believing me that celiac disease was the cause of my troubles, and won't even consider making me eat gluten again for testing. Plus, she likes me doing my own research, and take notes. Hopefully those will help other patients in the same boat.

I hope your GP will be more open than the clueless, rude GI. I hate doctors who think they are god! And especially the ones who only seem to care about making money, who won't give you enough time to even take a thorough history, never mind actually caring about making a valid diagnosis. IBS isn't a valid diagnosis. An irritable bowel is a symptom, not the cause of your troubles! Something must be irritating it, and it should have been his duty to find out what that is.

[NoGluGirl]

I have had a myriad of small health issues over the last 15 years, and in spite of some tests and many visits to doctors, was always told that there was nothing wrong.

This year I started having pain in my side and after a scare about liver disease because of an incompetent x-ray tech, I started doing some hard research on the net. To make a long story short, I came across this board, and eventually followed some posts to the yeast connection board and found out about mercury toxicity. I believe I do have mercury toxicity, and am working on that end of it. However, I am not sure if I have celiac, yeast overgrowth, or both since the symptoms are so similar, but I figured an "expert" could help me figure it out so I could take the appropriate action to treat it.

Anyway, after waiting 8 weeks to see a GI who supposedly knows about celiac, I had my appointment yesterday. He spent all of about 7 minutes with me, asked me none of the things he should have (like, is there any family history of celiac?) and told me that I don't have celiac because I have had weight gain, not loss. His conclusion was "IBS", apparently as a result of my complaints of D & C. I did stand my ground and insist on a celiac panel, but I'm not even sure he is doing a complete panel. He offered to do a colonscopy, but no mention of an endoscopy.

He totally refused to listen to anything I had to say about yeast overgrowth, never looked at the symptom form I completed, nor did he look at the page I brought with me with a list of all my symptoms and the approximate dates they appeared. He turned up his nose at my suggestions, apparently offended that I did my own research and essentially said that there are hundreds of diseases that all have the same symptoms, so thus I didn't really know what I was talking about.

Upshot: I will not be returning to this doctor, and I hope my GP is a little more open-minded, or at least will humor me and order the tests I request. I feel sure that I am on the right track, but I need assistance because I do need to narrow it down. I am totally open to other diagnoses if they are based on my symptomology, but all I got was someone who has a patient mill and doesn't listen!

Thanks for listening

Dear lawstudent,

I have gotten to the point that I pretty much hate doctors. I would love to become a lawyer and sue these incompetant morons to oblivion for killing people! I was nearly killed by them. I was told I was crazy, neurotic, a hypochondriac. My debilitating nausea, indigestion, and stomach pain and bowel trouble was all in my head they said. I could not even go to school by the time the middle of my junior year of high school came around. It turns out, the tests had not shown anything significant enough to point to anything particular. Well, despite tests being run, nothing showed up for my gallbladder. I was sure something was wrong. My primary care physician argued that nothing showed up in the tests, so it had to be fine. I told him I did research and found out those tests are only about 33 percent accurate at best. Finally, he let me see the surgeon. The surgeon thoroughly checked my results, and it turned out the stupid doctor I had before this one missed a gallstone I had three and a half years before! Because of what she wrote, every other doctor I went to assumed I was crazy! I was so mad, I could have choked her until her head popped off! So, I got my gallbladder out, and not a moment too soon! It was severely inflamed and irritated, and nearly ruptured! Always listen to your intuition. It never steers you wrong. Don't let some idiot in a lab coat with a God complex tell you what to do with your body! I learned that the hard way. Doctors hate patients that do research. They automatically label you a hypochondriac. I read "Natural Cures They Don't Want You to Know About" by Kevin Trudeau, and that is where I got the idea to pursue Yeast Candida. Well, I switched doctors in May. Now I am seeing a regular M.D. who is also a holistic physician. She believes I have Candida, along with food allergies or intolerances. I told her that I was test for allergies before, even paying $300 for a test for Celiac disease. The results were negative. She said just because the blood tests for Celiac are negative does not mean you cannot have gluten intolerance. No doctor had ever told me that before! So, I stopped eating gluten, and I have improved slightly. Now we are working on the rest of it. I also, was having trouble losing weight. Since going gluten-free, I am not as bloated (my lower abdomen was so swollen, everything felt tight, like there was a rubberband around my waist all the time) and I barely took in 1,200 calories a day and 30 grams of fat, plus walking briskly for 20 minutes 5 days a week. Cutting out the gluten has made a big difference, because I started doing Pilates along with that and now have lost 4 inches in my waist, and 5 in my hips!

Sincerely,

NoGluGirl

[AndreaB]

Hi lawstudent and welcome!

I don't really have anything to add except to pursue enterolab if the full celiac panel was not run. You could also use enterolab just for the gene test. I do know there are ELISA tests that you can choose to include candida. I think it was an extra $150 if I had choose to have it done.

Keep us posted on your research and results.

Enterolab's website is Open Original Shared Link

[Fiddle-Faddle]

So sorry you had the same experience that most of us here have had!!!!

If your bloodwork comes back positive for celiac, I would suggest that you write a letter (with a copy to your insurance company) requesting your copay to this doctor be refunded, as you basically had to act as your own MD by insisting on the bloodwork. You might add that his misdiagnosis might have eventually cost the insurance industry thousands of dollars in apointments, tests, drugs, etc, when all you needed was to find out what to stop eating.

If your bloodwork is negative for celiac (or gluten intolerance), I hope you find--quickly--what is causing your problems (as well as find a better docotr!).

Good luck, and please do keep us all posted. Most of us have been through what you have, and we are angry at that idiot GI on your behalf, and WE care that you get better!

[Matilda]

...

[AndreaB]

Sounds like you have a good doctor Matilda.

My regular was willing to run a celia panel for me but since I was gluten light for 1 1/2 months I opted for enterolab. The doctor I see for allergies is really good and is an md.

[natalunia]

Yeah, I have to say my GP was great when I approached him about it maybe being celiac (we all suspected giardia for months). He was honest and said he was not that up to date on celiac and referred me to a GI doc. The GI doc was great as well. Both were okay with me doing research and wanted to know what kind of things I found out and said they actually learned something and would keep that in mind when seeing patients who don't fit the old description of celiac. Even better was my GI doc saying he didn't want to put me through eating gluten anymore just to do a biopsy that may come back negative. He said dietary response was a better diagnostic tool in my case. I have a family history of colon cancer so he was more concerned with making sure I didn't already have colon cancer instead of doing the endoscopy/biopsy.

I even got my GP to run a testosterone level on my husband when he went in complaining of low energy and no libido. I told him (on my hubby's cell phone, I wasn't in the room), "Hey, if it comes back normal you can say I told you so. If it comes back too low we'll know something is wrong. I have insurance, and we can afford it, so you have nothing to lose." When it came back abnormal he said maybe I should go to medical school, since I have diagnosed my post adoption depression syndrome (that was an easy dx), celiac, and now hubby's low testosterone. I have thought about it, but it would require me to be away from my daughter so much it would have to wait a few years.

I have been seeing the same GP since I was about 13-14 years old, so he knows me well. He was great with the paperwork for our adoption last year, so he feels connected to my husband and I. I think it is important to have a good relationship with your GP, where you feel like a peer or on equal ground. I think if they expect a patient to listen to them and take their advice, they also should listen to their patients more, and maybe be glad the patient has already done most of the sleuthing and work for them. It should make their job easier. I know finding a doctor of any kind who can relate to their patients as an equal is rare though.

[Judyin Philly]

welcome..well short survey just on this thread alone...I bet 50% of us were over weight and b/c the medical comm isn't enlightened on the obese vs the skinny =celiac disease...so many don't look at it for us.

I have a great Internist I've been going to for 20 years and after 5 weeks of water 'd', not being able to eat and gaining 16 pounds...he suggested celiac disease testing...now he says i know more about the disease than he does..

please keep looking for the answers..sorry for the long wait to get the see the no nothing dr but if you keep looking...took me 15 years...you'll get the answers.

judy in philly

[Mamato2boys]

I have had a myriad of small health issues over the last 15 years, and in spite of some tests and many visits to doctors, was always told that there was nothing wrong.

This year I started having pain in my side and after a scare about liver disease because of an incompetent x-ray tech, I started doing some hard research on the net. To make a long story short, I came across this board, and eventually followed some posts to the yeast connection board and found out about mercury toxicity. I believe I do have mercury toxicity, and am working on that end of it. However, I am not sure if I have celiac, yeast overgrowth, or both since the symptoms are so similar, but I figured an "expert" could help me figure it out so I could take the appropriate action to treat it.

Anyway, after waiting 8 weeks to see a GI who supposedly knows about celiac, I had my appointment yesterday. He spent all of about 7 minutes with me, asked me none of the things he should have (like, is there any family history of celiac?) and told me that I don't have celiac because I have had weight gain, not loss. His conclusion was "IBS", apparently as a result of my complaints of D & C. I did stand my ground and insist on a celiac panel, but I'm not even sure he is doing a complete panel. He offered to do a colonscopy, but no mention of an endoscopy.

He totally refused to listen to anything I had to say about yeast overgrowth, never looked at the symptom form I completed, nor did he look at the page I brought with me with a list of all my symptoms and the approximate dates they appeared. He turned up his nose at my suggestions, apparently offended that I did my own research and essentially said that there are hundreds of diseases that all have the same symptoms, so thus I didn't really know what I was talking about.

Upshot: I will not be returning to this doctor, and I hope my GP is a little more open-minded, or at least will humor me and order the tests I request. I feel sure that I am on the right track, but I need assistance because I do need to narrow it down. I am totally open to other diagnoses if they are based on my symptomology, but all I got was someone who has a patient mill and doesn't listen!

Thanks for listening

He sounds like my son's GI doctor who said my son didn't "look" like he had celiac's, and in the very next breath told me she's seeing more and more kids who don't "look" like it, but have it. I guess because he's not at death's door (and in fact, has always been off the charts because he's so tall, and no less than 50th percentile for weight) then he couldn't POSSIBLY be sick.

EnteroLab confirmed he's gluten and milk sensitive.

[lawstudent]

Thanks for the supportive replies! I'll get through this, but it is frustrating. I believe there are decent doctors out there, but finding them is difficult.

As for the bad lawyers, the reason I started law school (I am a non-traditional student) was because I dealt with three different estates and several legal matters in a short period of years, and 3 of the 4 attorneys involved were lousy and their actions bordered on malpractice. I figured I needed to learn to take care of my own affairs and those of my family. Unfortunately, I won't have the finances to attend medical school when I am done!

I am aware of Enterolab, but it is not in the budget right now, so I am holding out. I know I could have a partial panel done, but I would like the whole bit so I don't have to keep "testing". If my GP will go for it and I can get it covered by insurance, I will do it.

Just an update on the doctor: I called his office to check on how long it usually takes to get the results and whether they would notify me or I need to call, since that info was not provided to me. I left a message for the nurse, who has never called me back (no surprise).

I recently started seeing a GP because I hadn't had a doctor since I relocated for law school. I'll see how open-minded he really is when I see him again!

Thanks again, and I'll keep you all posted.

[tiredofdoctors]

Hi law student -- welcome! I think that you are right now where a lot of us have been. I admire that you went back to school because of your wish to make SOME change in the practice of law. I did the same as a non-traditional student because of some of the Physical Therapists I had seen.

Please rest assured that eventually you WILL stumble upon doctors who will help you. My endocrinologist is by far my strongest ally. She will refer me to someone, tell me if she either knows them or has just heard of them. She says, "If a physician helps you - great. Keep them in your back pocket. If they don't -- leave and don't go back. There is no sense in going to someone who is not going to help you. Find another. Quickly." She has a really bad taste in her mouth about the medical community, as well. She is, however, fantastic.

I was VERY lucky to find a GI in my area (compliments of my EYE DOCTOR!!) who was fast, thorough, and double-checked EVERYTHING with the Celiac specialist in his office . . . in fact, the Celiac specialist called me several times to discuss my results.

There are so many clueless, apathetic physicians out there . . . unfortunately. I think that's the case in every profession. I'm just hoping that you start stumbling onto the ones who are caring, knowledgeable and thorough. If not, just heed the advice of my endocrinologist -- leave and don't go back!!!

Please take care of you,

Lynne

[NoGluGirl]

Thanks for the supportive replies! I'll get through this, but it is frustrating. I believe there are decent doctors out there, but finding them is difficult.

As for the bad lawyers, the reason I started law school (I am a non-traditional student) was because I dealt with three different estates and several legal matters in a short period of years, and 3 of the 4 attorneys involved were lousy and their actions bordered on malpractice. I figured I needed to learn to take care of my own affairs and those of my family. Unfortunately, I won't have the finances to attend medical school when I am done!

I am aware of Enterolab, but it is not in the budget right now, so I am holding out. I know I could have a partial panel done, but I would like the whole bit so I don't have to keep "testing". If my GP will go for it and I can get it covered by insurance, I will do it.

Just an update on the doctor: I called his office to check on how long it usually takes to get the results and whether they would notify me or I need to call, since that info was not provided to me. I left a message for the nurse, who has never called me back (no surprise).

I recently started seeing a GP because I hadn't had a doctor since I relocated for law school. I'll see how open-minded he really is when I see him again!

Thanks again, and I'll keep you all posted.

Dear lawstudent,

I have considered law myself. My relatives are not thrilled, but they have no reason to make fun.

My cousin is a politician, and my father is a salesman. They are both known for being full of it. My best friend has lawyers in her family, and they are good people. With my temper, I would probably be in contempt all the time. I would be like Ling on Ally McBeal. There are a few things I would like to do. I would either do lawsuits against the drug companies for the dangerous drugs they released, malpractice lawsuits, or sexual assault cases. What you said about law school and medical school is true, they are both incredible expensive, topping out at around $100,000. A lot of people tell me I should be a doctor due to all of the research I have done, but I just don't know. Besides the point, I hate hospitals. If I did end up being a doctor, I would be like a female version of Becker or Cristina on Grey's Anatomy.

Sincerely,

NoGluGirl

[lawstudent]

I just thought I'd give you all an update (the vent continues)...

The doctor's office finally called back very late on Friday afternoon and unfortunately got my voice mail. The caller left a message that she got my question about the labs and I should call Monday and she only works in the a.m. She could have simply said "usually takes x weeks, we call you" or whatever, because I left both questions in the message.

Anyway, I waited all weekend and did call back, and she then indicated that she actually had my results, but that the doctor had not yet seen them. She said that they came back negative. I told her to read them to me. She tried, but was totally unable to sound out any of the names on the tests. I did finally get some numbers out of her, and she said that one test was "borderline" and gave me a 1.12 with <1.20 being negative. She said the doctor would review it and decide what needs to be done. I posted the info I got on the pre-diagnosis board, and no one helped...well, no wonder...the info she gave me was so bad no one could make sense out of it!

I found this out when, after getting no call back on Monday, Tuesday, or today, I decided to go to their office and demand a copy of my results. She came out and said why do you want them... I spoke to you and told you they are all negative! I said no, you said one was borderline, and I want to see it. Well, I signed a release, got the results, and the one was not "negative" or "borderline", it was "positive" and flagged with a "HH". However, I don't understand what it really means (except that it is not specific for celiac), and since I know that no one from the doctor's office will be calling to explain it, I posted the proper stuff again on the other board. Hopefully, someone will be able to help.

On a side vent, my husband went to my GP for a physical. However, the insurance denied all of the bills for the office visit and bloodwork. Why? Well, even though he made the appoinment for a PHYSICAL, told the doctor he wanted to check on his cholesterol & sugar because of previous high normal readings, and the doctor counseled him on diet and exercise, apparently those aspects of the visit are nowhere in the records. All the records show is that my husband went to see him for reflux, he was diagnosed with reflux, and prescribed medication for reflux! Note that all three are absolutely untrue, but reflux is excluded on our insurance, so they are refusing to pay. The doctor's office staff is refusing to correct the records, and told my husband that it is his responsibility to make sure the records are right (they were never offered to him for review-and now that he is trying to correct it, they won't allow it!). The only time reflux came up was in his medical history form he gave to the doctor. My husband has not had a prescription in over 2 years, nor did he get one that day. My husband is non-confrontational, but ticked off. I will be stepping in here and leaving a message for the doctor directly. The office staff told my husband to wait until he gets the large bill from the lab (we already know what it is because we got the EOB denial from the insurance) and then MAYBE they will write a letter to the insurance company, but won't correct his file! And the point of waiting on the other bill rather than acting now is ????

I have a new topic to reasearch...what rights does a patient have when a medical professional puts blatant lies, misdiagnoses (this happened to me once), etc. in the file? I bet not a lot!

Okay, thanks for hearing me out. I am not a whiner by nature, but I am so frustrated I could spit nails!

[debmidge]

Lawstudent

If need be, tell us your city and state and perhaps someone on board knows as good GP or GI that will see you.

As to the reflux, are they saying that it was a Pre-existing condition and that's why it isn't covered?

And by the way, this is a safe place to vent; I've done it many a time myself. See our info below. Don't let anyone deter you from blowing off steam about doctors. This is what we are here for.

[Guest Robbin]

It is ok to whine here!! If you can't whine, you just get more pain, right?

Now, if your dh hasn't been treated for the reflux in the past two years, this should not be considered a pre-existing condition. I don't know quite what the problem is, but it seems the drs. office is giving you a huge run-around and maybe covering up a screw-up. You have a right to a review of this claim. You can send it back to the insurance and have it reviewed. If they turn it down again, just keep sending to peer review, you have usually three appeals. When they see you mean business, they will take it seriously and actually LOOK at it closely by the third appeal. Don't back down on this, you pay premiums to have coverage and you deserve to get this paid. Good luck and take care.