Bad Experience With Dr.s?

[marciab]

Ok, Now I feel like I have a home. I was feeling embarrassed because I don't have any facts to back up my celiac diagnosis other than my positive diet results. But now that I have been here awhile, it appears that very few actually have the luxury of meeting the gold standard requirement set by the medical community. It's re-assuring to know that I am not the only one being treated like a hypochondriac or just a liar.

(Sorry to be so graphic), but I complained to my "old" Gyno years ago that I was bleeding vaginally everytime I had a bm. She had no idea why that was happening, so I moved on. When I saw my "new" Gyno the other day, he asked about it. Anyway, I got to tell him that since going on this diet and no longer being constipated, that problem has cleared up.

It should have felt good to tell him the good news, but instead I was embarrassed. I felt like he was doubting me. Why would I lie about something like this ??

We'll see, I haven't given up on this doctor yet. I've had a rough 2 weeks, and I am facing a probable hysteroctomy, so I need him on my side.

Good thread. Thanks for posting this. marcia

[Guest nini]

glad that everyone is getting something out of this thread. it sucks that we've had such rotten experiences with Dr.s that we need a thread like this.

[Dlapham celiac & DH]

The intent of this thread is to create a safe forum for those of us who have had negative experiences with Dr.s to vent about our experiences in a therapeutic way.

If you love your Dr. please do not post on this thread. This thread is ONLY for those of us who want to vent about our bad experiences with Dr.s

Think of this as a group therapy circle! It's intended as a safe place to explore your feelings and to not be made to feel like a heel for being angry at the medical community.

Vent away!

I am new to the posting side of the site, but thought I would get my feet wet with this topic since it hits close to home for me also. I am 59 years old and have had symptoms of C/D all my life. Mostly digestive and upper respirotory problems, but also some nuerological issues which have never been checked. No doctor ever mentioned a food problem.

My problem with Doctors is more related to the profession as a whole then my doctor himself. Actually I like him, because he will listen to me and work with me to do what I believe is best for me even if he is not convinced of the problem. That may be because I have been correct in 3 major health issues, a spinal tumor, a torn rotator cuff and Celiac disease. The first two I asked for an MRI to find the problem, and the last I found by internet research to find more information about Dermatitusherpetaformas that was clinically diagnosed about 17 years ago.

I did NOT go to my doctor when I was really bad, before I found the problem, because I knew that it mean another RX and that is not what I wanted. When I found the web site from BethIsreal Hospital and the statement that everyone who has DH also has celiac disease, I was very angry, but that quickly turned to resolve to do what I needed to do to get better. I had tried a gluten-free diet 17+ years ago when first diagnosed with DH, but I had 3 small children and it was to hard to get and cook the foods needed and there was not as much information at hand, so opted to use DAPSONE and handle it that way. It worked well to control the DH, but for the 17 years, my blood work continued to get worse untill I had to take B-12 shots for pernicious anemia, and they were not helping. My energy was a memory, I started having the classic Celiac symptoms and still nothing stood out to the doctor. After loosing over 30#s in 2 months, and having a colesterol level of 100, I was able to get my GI symptoms under control with OTC medication, and started eating again. (I had almost stopped eating because of the GI problems) It was about this time that I found the website and started a gluten-free diet. In 3 to 4 days I had a radical improvement, and after two weeks it was really not believable. Then I had a week of return of symptoms, but they went away and improvement started again.

After 2 & !/2 months on the diet I went to my Doctor and took the pages from the web site. He agreed with MY diagnosis and put it in my records, and asked me questions about the disease and gluten and what to watch out for. So he is able to accept an informed view even if not his. I do know that this is rather a rare thing. (I had the best blood work I have had in over 15 years,)

My problem with the medical profession in general is that the drug companies have hijacked the medical training and that is what doctors learn, what drug is good for what, as some one else said in their post. Also that even new graduates from medical training do not consider DH as secondary to celiac disease, so many people are being given DAPSONE to treat DH and their Celiac is undiagnosed, so they just get worse.

If you want progressive health care today, I believe that the only way to get it is to take charge of your own program and find doctors that will play the game with you to restore and maintian your health. The internet is a life line in this area. I have learned more here then in all the medical books and doctors I have seen in my life before now.

I am just thankful to find out that I have "treatable" disease. Hope this is not to far from the intent of the rant. Thanks for this website, it has been a wealth of informative information and a support as I have navigated the first months of the diet. Thanks again.

[Guest nini]

welcome, and no, you didn't stray too far with your rant! It's ok to LIKE your Dr. and be frustrated with the medical community in general! I like my PCP who referred me to the GI that dx'ed me. Even though he initially couldn't figure out what was wrong, he did at least KEEP LOOKING... and realized when it was beyond his area of expertise. It was the Dr.s BEFORE him that really destroyed my faith in the medical community. Recently my PCP left the practice that he founded and moved away... While I'm very sad about that, he did leave the practice to some very capable people and I like my new Dr. as well... she's from India and very smart and EXTREMELY knoweldgeable about Celiac... I was surprised!

but anyway... I digress... Before finding that clinic, I spent MANY MANY years being told it was all in my head, just go see a shrink, here's more meds... let's treat the symptoms not the underlying cause mentality...

Before my dx I was taking a good 20 some odd prescriptions... some for my symptoms, and others to treat the side effects of the other prescriptions... it was insane... so glad to be off that roller coaster.

[debmidge]

Feel free to rant

This thread is the thread to rant on. I believe this is the only thread you can say this stuff on.

Some of us are more emotional about our negative treatment, misdiagnoses, etc.

Some of us have been impacted more negatively than others in this negative treatment and misdiagnoses and general ineptness of the medicine and doctors.

There's nothing to be ashamed of feeling this way. For many of us it has been a damage that has and will cling to us because the experience has had a way of keeping us from having a healthy future as we are dealing with the malpractice on a daily basis. These experiences have left us less healthy than we could have been had the diagnosis happened on a more timely basis.

Marcia: Having gone thru what you will be facing, please feel free to Post Me a private message if you should have any questions about the procedure or what to expect during those 8 weeks of recovery. D.

[Fiddle-Faddle]

Wow, what a great thread! I just got home from (where else) the doctor, ready to scream--but more about that later.

Nini, I had a similar pregnancy to yours 11 years ago (after 1 miscarriage). I had toxemia and3 1/2 hours of pushing, and Michael (at 37 weeks) was only 4 1/2 pounds. What may have saved us was that I could barely keep anything down throughout the whole pregnancy (I gained a whopping 8 pounds, which was all water retention from the toxemia). I couldn't stand crackers--I ate a lot of strawberries, corn chex, and rice crackers.

Floridanative, could you tell us more about the shingles/immune system thing? I had shingles when I was 25, and shortly after that was diagnosed with Hashimoto's, but I didn't know there could be a connection.

And now for my rant (I do apologize if this is too long, I still have steam coming ut of my ears)

I had this truly hideous rash that my Primary Care Provider thought must be severe contact dermatitis. He sent me nome with Prednisone and Allergy meds. I had already done my internet research, and showed him pictures of DH. He said he didn't know anything about DH or celiac, but that if it came back, he would send me to a dermatologist. I had gone off gluten as soon as I found the info on the internet--when you have a rash like that, you'll do anything to get rid of it!

So I learned that oatmeal was a gluten source after eating a bowl--and seeing the rash return 24 hours later. So the PCP sent me to a dermatologist (are we allowed to name names?), who took one look at the by-now faded rash (it had taken over a week to get into his office, and I was by now reading every food label in sight) and said, "That's not DH, I have 40 years of experience and I can tell you that you don't have it."

So I hauled out my printouts and explained that the rash had looked quite different a month ago before the prednisone and before going off gluten, and explained about my Hashimoto's, and that I had had intestinal problems as well.

He just rolled his eyes.

I asked him if it wouldn't be a good idea to at least rule out the possibility of Celiac. He rolled his eyes again, and said, "If that's what it will take to make you happy."

So he gave me a scrip for bloodwork, and took 2 biopsies of the almost-healed rash, and told me to call in a week for the results.

His assistant told me over the phone that everything was normal. I asked if we might have done the bloodwork at the wrong time, as I had been off gluten for a month beforehand, and he said, "I'll have to check with the DOctor first, I'll call you back." He called back, and said that it totally did not matter, that if I had Celiac, the bloodwork would show it even if I had been gluten-free for 10 years.

So I thanked him, and asked him to fax a copy of the bloodwork to my endocrinologist, as I had an appointment coming up anyway.

So I was explaining to the endocrinologist (whom I like) that my immune system has been behaving very strangely, and that I had had this horrible rash, but the bloodwork seemed to rule out the possibilty of Celiac. She looked up from the lab report and said, "Excuse me, but your IgG is 3 times the normal limit, and the prednisone should have made it normal--I consider that to point quite clearly to celiac, and you need to see someone who knows a lot about immunology, because I don't."

So--hurray for the endocrinologist for admitting what she doesn't know and for being intelligent enough to actually READ the lab report, and what a TOTAL JERK that dermatologist was. It was absolutely clear on the lab report (the endocrinolgist said, "Here--I think you'll want a copy of this!")--there was no way he could have misread it. It even says, "These antibodies are present in most patients with celiac disease. However, the antibodies are nto specific for celiac disease. Antibody to gliadin may be present in Crohn's disease, or in Dermatitis Herpetiformis....."

It also says, "Gliadin antibody levels will decrease or increase depending on the removal or reintroduction of gluten into the diet."

That IDIOT either didn't read his own lab report--or worse, he LIED.

Wow--I feel better already Thank you so much for providing this thread!!!!!!

[tarnalberry]

FF, that's awful, and that kind of negligence in a medical practice *is* worth legal action over. well, I'm lazy, so I wouldn't go so far as to take legal action, but I would go back to the office with a copy of the report and provide the doctor and staff with written letter, along with your verbal communication, that you are aware of their negligence. you could report him to the medical board as well. ignoring test results *is* negligence.

[Guest nini]

Wow Fiddle Faddle... what a jerk that Dr. was! Good thing your endocrinologist let you have a copy of the report... Dr.s, grrrrrr...

[jerseyangel]

That is terrible--I've said this before, but I think some of these doctors are trying not to diagnose Celiac. Why? That's the part I don't understand.

[Guest Robbin]

Fiddle-Faddle--I am reading your post and I can't stop the tears. I CANNOT BELIEVE THIS. I called my dr. (who some of you might know I've been ranting about on other posts) for the last test results--he did a stool culture to check for "something" and I had a barium test on the stomach/small bowel (He wouldn't listen to me about the celiac) He told the nurse to tell me not to go off the gluten free diet. Now, that is not what he told me the last visit to go over the blood test (he only did one test). However, the day I went over the test with him, he flashed it in front of my eyes, said it was negative, I said ''What test did you do?" He said, er, the one that is the most accurate, I said "what is it called?" and he says "celiac test, you know we talked about before" So, I said, let me get my glasses out and see it the report better-so I got my glasses out and turned around and he had put the lab report away and started talking about how reliable the tests are these days and I NEVER GOT TO SEE THE REPORT!!! So, (sorry for the length) to hear what he said today peed me off so bad because I think he is backpedaling big-time. I sent to enterolab for the complete gene panel/stool/casein tests. I AM SO SICK OF THE ENTIRE MEDICAL PROFESSION. I'm sorry, but he just has me so upset. Hasn't even followed up with my son either. What a jerk.

So you see why your post got me so winded. I am in shock at the fact you got this type of jerk-around today too. I am so burning, as I am sure you are too. Thank God for this forum. Patti, I agree, there seems to be something weird about this--trying not to diagnose it? What the h*** is going on?

[ianm]

That is terrible--I've said this before, but I think some of these doctors are trying not to diagnose Celiac. Why? That's the part I don't understand.

Because they can't write a prescription for it. No drugs, no kickbacks.

[Fiddle-Faddle]

Thank you, everybody, for your supportive responses.

Robbin, I'm so sorry to hear about all your difficulties. I hope the enterolab thing gives you some definite answers. Sometimes the worst part is not knowing.

How old are your kids? I nursed mine for 2 to 2 1/2 years, too (with, of course, lots of disapproval from the doctors and everybody else)! When my oldest (now 10) first started cow's milk when he was 1, he had major diarrhea, a cold, and his first ear infection. The diarrhea was an obvious reaction, but I didn't find out until years later that the cold and ear infection were also probably related to the cow's milk. Anyway, I immediately stopped giving him the cow's milk and switched him to soy, and tried cow's milk againt he next month--with the same results. I waited 6 more months, and then started introducing the cow's milk a tiny bit at a time, mixed with the soy milk. This time, he was able to tolerate it.

When he was 3, he was diagnosed with Asperger's Syndrome (borderline autism--it also shares several traits with ADD, which is now considered to be on the autism spectrum). We did some research and took him off casein and gluten with good results. When we reintroduced casein and gluten, we didn't see any setbacks, which was kind of surprising, so he eats pretty much everything now.

Anyway, we did some research and found out some pretty alarming links with autism, casein, gluten, and children's vaccines. Apparently, a very large percentage of autistic kids (and grownups) are both gluten AND casein intolerant. If you have very young children, and a history of gluten intolerance, PLEASE make sure that whatever vaccines your children get do NOT contain thimerosal! The drug companies tookit out of MOST vaccinesin 2002, but the doctors we love so much are still using up old stores, and the nurses administering the shots have been told that nothing contains thimerosal anymore, which is not true. If it comes from a multi-use vial, it contains thimerosal. Also, the flu shot, and (last time I checked) the varicella (chicken pox) vaccine also contain thimerosal.

We've also heard interesting anecdotes from friends. One person whose daughter had constant ear infections when she'd consumed anything with casein had absolutely no symptoms when they went to Europe (and ran out of soy milk) She thought her daughter might have outgrown the problem--but when they returned to the states, the ear infections came back until she took her off milk products again. She said she'd found out then that the Europeans don't blast their milk cows with antibiotics and growth hormones the way the Americans do. (To keep this on the doctor rant, her pediatrician told her that her daughter would need to be on constant low-dose antibiotics to avoid ear infections, at which point she went to a naturopath, who suggested removing milk products from the diet.)

I wonder if the same might be true of wheat--do pesticides change the gluten somehow into something our bodies can't handle?

Has anybody here evertried organic wheat products?

Robbin, your experience seems to blow my previous theory that things like food allergies and gluten intolerance are caused by baby formula!

[Fiddle-Faddle]

FF, that's awful, and that kind of negligence in a medical practice *is* worth legal action over. well, I'm lazy, so I wouldn't go so far as to take legal action, but I would go back to the office with a copy of the report and provide the doctor and staff with written letter, along with your verbal communication, that you are aware of their negligence. you could report him to the medical board as well. ignoring test results *is* negligence.

Tiffany, do you (or does anybody) have any suggestions on HOW to take legal action against this !@#$%^&*! doctor? I have no written or tape recorded proof that he said anything--all I have is the lab report.

[debmidge]

From my experience, I've noticed that some or most doctors get mad when you tell them what YOU think your condition might be; or they are embarrassed over their lack of knowledge and try to cover it up by saying "No, you don't have such and such." I'd like a doctor to at least say something like "Well, it's certainly worth testing for." or "That's an interesting observation. Let's go that route and see what turns up." OR "I don't have any background in autoimmune diseases and I have a hunch your information may turn up something. So here's a referral to a specialist in that field. It's best to check these things out as soon as possible." OR "Based on the information you've given me, I'd like to confer with some specialists in this field. So let me do some checking and I'll set up a phone conference with you sometime next week. I'll have my office call you to arrange that. I'd rather check this out thoroughly before concluding that it's not a possibility."

Wow, am I in dreamland.

[penguin]

I'd like a doctor to at least say something like "Well, it's certainly worth testing for." or "That's an interesting observation. Let's go that route and see what turns up."

Wow, am I in dreamland.

My Dr did that and shocked the bejeezus out of me

[Rachel--24]

From my experience, I've noticed that some or most doctors get mad when you tell them what YOU think your condition might be; or they are embarrassed over their lack of knowledge and try to cover it up by saying "No, you don't have such and such." I'd like a doctor to at least say something like "Well, it's certainly worth testing for." or "That's an interesting observation. Let's go that route and see what turns up." OR "I don't have any background in autoimmune diseases and I have a hunch your information may turn up something. So here's a referral to a specialist in that field. It's best to check these things out as soon as possible." OR "Based on the information you've given me, I'd like to confer with some specialists in this field. So let me do some checking and I'll set up a phone conference with you sometime next week. I'll have my office call you to arrange that. I'd rather check this out thoroughly before concluding that it's not a possibility."

Wow, am I in dreamland.

Yeah....dreamland....are you awake now?

I never experienced anything like that but it sure sounds nice.

I have had them agree to test me for stuff I've inquired about but I usually get some smart-ass remark that goes along with it.

For example a long time ago when I started having headaches, sweating, trembling and eye problems I went to the doc and he told me to get more rest. I told him there was definately something wrong. He told me it was stress. I said it wasnt. We went back and forth like that and finally he said "Fine...I'll run some tests for things that could cause some of your symptoms since you dont want to believe me....will that make you happy?" I said yes. 2 days later I get a call that I need to come back in asap. Turned out to be Graves Disease.

Its always a fight with these guys and they DON'T wanna be told anything. They wanna be "in charge" and that would be fine and dandy if they actually knew what they were doing.

[thomas3000]

Rachel,

Does it make you angry that you lost your thyroid? I'm wondering if you could have saved it if you find out the cause earlier on. I'm one of the lucky ones since I sensed that the conventional medical community doesn't know their ass from their elbow from the very beginning. I was offer several drugs to mask my depression/anxiety/headaches/trembling, but I didn't take any. I think that most people who have gluten intlolerance take the med route without searching for causes and that causes further damage and delays healing. My doc said I'm lucky to have came to him early on cause I'd be suffering still.. I was diagnosed with six different things and they all pointed toward gluten, and I feel blessed that I found that out....

[Rachel--24]

Thomas,

Yeah...it does make me mad but I cant change it. At the time I knew nothing about gluten...if I had I'm sure the diet would have corrected my thyroid problems. I didnt know anything back then except that I was in pain and I wanted it to go away. At that time I believed that doctors knew what they were doing. I learned the hard way obviously.

Its only been the past couple years that I really gave up on the medical profession and only one year since I started really looking for my own answers. I wish I would have known about BioHealth a long time ago and if I didnt have such a hard head I would have taken your advice last year and saved myself some time. Oh well...I guess it was "meant" to happen this way.

One thing that hasnt changed is from day one I never believed in perscription drugs being the answer...I always felt they would just cover up the real issue and I was right about that.

And yeah...they really dont know their asses from their elbows!!!

[Fiddle-Faddle]

Thomas,

Its only been the past couple years that I really gave up on the medical profession and only one year since I started really looking for my own answers. I wish I would have known about BioHealth a long time ago and if I didnt have such a hard head I would have taken your advice last year and saved myself some time. Oh well...I guess it was "meant" to happen this way.

Rachel, what's "Biohealth?"

[Rachel--24]

Rachel, what's "Biohealth?"

Its a clinic that I go to...they have my kind of doctors there. The kind that dont just send you home with a perscription and no answers. They really work with you to get you better. I probably sound like a commercial for BioHealth but anyways they've been the best thing to happen to me since I got sick.

[Guest nini]

I just want to vent... I am REALLY frustrated that we as a society, are so conditioned to put medical Dr.s up on this invisible pedastal and to just accept what they say as truth... We forget that they are HUMAN and are subject to the same infallibilities as all humans. We need to get back to LISTENING to our own bodies and TRUSTING our instincts. Instead of wasting our time and money going to medical Dr.s to have them tell us what is wrong with us and tell us what drugs to take to treat the symptoms.

I'm just so aggravated. It seems I meet more people EVERYDAY, both in my work and out in the world and on the internet that are "waiting for their dr. to find out what is wrong"

Sure there are tests that they can do that can find things, sure there is a place for medicine, BUT, we are in a dangerous place when we give up our personal power to another person and give them control over the decisions we make for our health and the health of our families.

I'm sick of it. I'm mad at myself for falling into that trap for so long too, and for letting them continue to prescribe drug after drug to treat the symptoms.

I do not know what the answer is, I do know that we have an INNATE intelligence in our bodies that knows what is going on, we just have to learn how to trust it.

How many times have you heard, or said "I know that gluten is my problem BUT my Dr. said it's not because my tests were negative" AAAAAAAAAAAAAAAAAAAAAAAAAAAARGH!!!!!! If you know gluten is your problem then BY GOD, eliminate gluten from your diet! WHAT ARE YOU WAITING FOR????? Permission? I give you permission then...

Why am I on a rant this morning? I don't know... For some reason I'm just really irritated! Thank you for letting me vent.

[jerseyangel]

YOU GO--NINI!!!

[Guest nini]

[Rachel--24]

Nini,

I know what you mean about people waiting for the doctor to diagnose. I did this for 2 years before I got smart and took matters into my own hands. I have improved my health by staying off gluten and instead of laying in bed all day on disability I'm now working everyday since Spetember. I only missed one day due to side effects from antibiotics. I know people who are just as sick as I used to be and are unable to work. They wouldnt think of changing their diet and look at me as if I'm crazy for eating like this. Whatever. I dont try to talk anyone into the diet even though I have no doubts they will benefit. If the person isnt willing to help themselves then I'm not going to waste my energy. You have to be committed and clearly these people are not. They can wait for the doctors to "cure" them until the cows come home but I think what alot of people fail to realize is that WE are responsible for our health. Doctors are human beings "not above us" and they cannot possibly know you're body better than you can.

[Guest nini]

Rachel & Jersey... thank you for backing me up on this... I'm trying to figure out what set me off this morning.. could be my mother... yesterday I went over to her house to take her some ear drops... she's been sick for weeks and feeling crappy and I get there and what is she doing? Making sourdough bread... flour all over the kitchen. She does this all the time. Then complains about her arthritis, her IBS and getting sick... but her Dr. said she couldn't possibly have celiac... (didn't run tests...) So therefore she doesn't think she has it. Not willing to consider it AT ALL and not willing to change her habits. My sister is so much like her too and it's frustrating the hell out of me.