Anger At Pcp Who Didn't Diagnose Celiac

[ERR]

I was diagnosed with Celiac yesterday. Forgive me if this would be more appropriate elsewhere or if I in any way am not following board protocol. I'm having some trouble in getting past my anger at my former primary care physician. Three years ago I went to my PCP with symptoms including fatigue, chronic thirst, and, ultimately, peripheral neuropathy. I told my physician that I had times when I felt physically exhausted and that these seemed disconnected from causal events. I also told him that I had feelings of just drinking glass after glass of water but not being able to quench my thirst.

Ultimately my company switched insurers and I had to find a new doctor. Within a few months I was diagnosed with Celiac and, I am hopeful, I am now on the road to recovery. But all I can think of doing is confronting my doctor. I want to punch him in the face for the time he took from me, and from my family due to his inability to diagnose what should have been a pretty clear-cut case. I was in his office repeatedly, over the course of years. He told me I needed to drink less alcohol, and that I was too stressed out, and that it was just the way it was with young kids at home. He was wrong.

So I guess my question is this. Am I crazy? And, assuming the answer is at least tentatively a "no," would it be wrong to (non-violently) confront my former PCP and tell him that he really blew it? Does anyone else have this feeling of rage at stolen time?

[TrillumHunter]

I went through that. It took over a decade for me to be diagnosed. There are a lot of us like that on here.

What to do? You can say something to the dr. But, don't let his response to it affect your moving forward. You can't control his response and he might not be sorry about it all. Express yourself because YOU need to, not because you want him to have a particular opinion about it.

Focus on feeling better. You've found the answer. You have a condition that is very treatable. You can be free now.

Take care and come back here often. (like multiple times a day if you're like most newbies!)

[ERR]

Take care and come back here often. (like multiple times a day if you're like most newbies!)

Thank you. There is some dispassionate part of me that recognizes anger might be an easier thing to deal with than some of the other stuff that is going on. The truth is, I should have found the diag myself. But the important thing is to get healthy now. This seems a good place. I'm glad I found it.

But, if I can ask, isn't amazing that they didn't find it? I mean, if some of what I have read is to be believed, we have a very common condition. Shouldn't Celiac be on the short list of things to check for?

Bah, I think I'm just angry because I haven't stocked up on Gluten free desserts yet.

[TrillumHunter]

Not that it helps us, but I think it is moving up the short list. I guess I understand now that I didn't fit the 10 minute profile of celiac that most doctors got in med school. I do wish they would have looked at all my abnormalities and said, "WELL, it must be SOMETHING!" But, it is what it is...

One word of warning: be careful indulging in the gluten free goodies. Many of us have difficulty with them in the beginning. Try a simple, whole foods approach to eating to give yourself a chance to heal.

[tarnalberry]

Celiac masquerades as many things, and it's not that common, in the general population. It affects approximately 1% of the population, so when a random person goes in to a doctor, there's a 99% chance that person does not have it. Even with classic symptoms (which yours are definitely not classic, though they are celiac symptoms), your odds are approximately 5%. It would be irresponsible of a doctor to not take this into consideration and miss the more common condition 95% of the time.

Does that excuse missing a diagnosis? No. But it helps understand why it happens, even with good doctors.

Knowing what symptoms we need to tell our doctors about, and which ones are irrelevant, has become more difficult. Making it all the harder for doctors to do a good differential diagnosis. Does that mean they shouldn't have to? Of course not. But they need to help teach us how to help them, and we need to learn how to as well. And to be a little patient (if remain stubborn) while complicated differentials take a little while.

(And, of course, finding a new service provider when your doctor proves to not be up to snuff.)

[caek-is-a-lie]

I know how you feel. Doctors suck. I've gone through that with countless doctors for my Narcolepsy and the gluten intolerance. I went to my latest PCP for a year saying "I think I have food allergies" and he gave me no help. Then I went gluten-free myself and it worked and I went back to him saying do I need to be tested for Celiac since it runs in my family and he just said "if it gives you problems, don't eat it. You don't need to see an allergist or a gastroenterologist." Gah! I was so mad at first, but I do so well off gluten I won't go back on it to be tested so ... whatever. I don't care anymore. And I don't see that PCP anymore. I see a Naturopath who is caring, supportive, and helpful. So there.

It's ok to be angry. I'd be worried if you weren't. But there comes a point when you have to realize that the doc that made you mad probably won't ever help you and you have to be proactive to find the one that will. And yes, that means pissing off a bunch of other doctors that also won't help you in the process, but it's your health. I hope you have an easier time than I did getting the help you need!

Hugs!

[mamabear]

Even the best neurologist in West TN was unaware (until we talked and I gave him a 10 minute discourse) that unexplained peripheral neuropathy was a sign of celiac disease. The hematologists here are worse(unexplained iron deficiency has a 5-25% chance of being celiac..varies depending on which study) and they roundly here blithely ignore it even when it smacks them up close! I posted an article a couple of days ago about a Cortlandt Forum article this month about how to diagnose celiac and how to follow us. Jersey Angel kindly provided the link. Hope this helps ypu deal with your anger and frustration. It will take some time for that to heal,too. Good luck!

[Nancym]

It takes like an average of 11 years to get a proper diagnosis. Hideous isn't it? There's a lot of diseases like that really. PCP's aren't always good diagnosticians... in fact, some are downright awful. I guess someone has to graduate at the bottom of the class.

[mushroom]

PCP's aren't always good diagnosticians... in fact, some are downright awful. I guess someone has to graduate at the bottom of the class.

I had a PCP like that once, for waaay too long, a really beautiful woman, an internist who graduated from Stanford; my Dh swears she slept her way through medical school (you know what I mean). She bought a thriving practice and finally had to abandon it and go work for Kaiser (no, this is not Kaiser bashing) because all her patients left her because she couldn't diagnose her way out of a paper bag. She was the one who told me that I needed a psychiatrist, and made the snarky comment that "it is obvious that digestion is taking place" when I complained of digestive problems (I was one of the weight gainers, not losers).

Mamabear, I was really glad to see that Cortlandt article; someone finally realizes that doctors are not properlly trained to diagnose celiac. I know there is only so long they can stay in medical school, but even so....

[caek-is-a-lie]

(I was one of the weight gainers, not losers).

me too, mushroom, me too...so "atypical" eh?

[home-based-mom]

ERR, you would probably feel better if you wrote a letter to the doctor. Insist that it be kept in your (now closed) file. Keep emotions totally out of it. Just dryly outline all the visits you made, what you said, what he said and how you came back over and over without your problem ever being diagnosed.

Send a copy to the medical board and more importantly to the insurance company. They need to be told over and over and over that it is costing them BIG BUCKS when they don't encourage doctors to at least run the celiac panel when they do other blood tests.

The take a big breath and LET GO OF IT. Your frustrations and anger and resentments do not hurt anyone but you. Remind yourself daily to be grateful that now you know what has been wrong and now you can focus on getting well.

[JNBunnie1]

Cardio-kickboxing can also be very therapeutic! Definitely helps you to express anger instead of hoarding it.

[Ahorsesoul]

File a law suit. It's better that hitting him.

[mamabear]

It takes like an average of 11 years to get a proper diagnosis. Hideous isn't it? There's a lot of diseases like that really. PCP's aren't always good diagnosticians... in fact, some are downright awful. I guess someone has to graduate at the bottom of the class.

Actually the bottom third of med school classes usually went into ortopedics and OBGYN. The top students in the past went into Internal Medicine which used to be the cream of the crop. With big business driving insurance companies(HMO,PPO,POS plans) into getting the diagnosticians(Internal Med) to being a "PCP",many of the docs responded into volume practice and not quality. IM docs are/were trained to think and diagnose.....carefully consider a differential diagnosis and have the diagnosis by HISTORY and PHYSICAL alone 95% of the time. Lab,xrays were to only add 5 %. It just ain't so anymore. FP's have 6 months of Internal Medicine in their residencies, so they aren't generally comparable to IM. There are some good FP's out there, and some good IM's, but I am unhappy to say that many quality Int Med docs have succumbed to the 30-40 patients a day vs under 15 per day. For anyone wanting to use that to vet out an Internist, it would be a reasonable question to ask the office front desk.