Disbelieving Doctor

[Guest dlf1021]

Hi,

I had my first visit with the gastrointerologist since starting the diet and he seems like somewhat of a flake, if you ask me.

My primary knows nothing about celiac- he had me research the disease on the internet, print out information, and come back a week later to 'educate' him. He only ran blood tests for the IgA and IgG antibodies, but not the TtG. My IgAs were 33 and my IgGs were normal. He suggested I try the diet anyway. After two months, I feel better than I have in a very long time. I've been struggling with stomach pains since I was 6 or 7 (I'm 18 now) and, while I still have bloating, stomach pains and diarrhea, it's once every week or so now rather than nearly every day. I've always been on the heavier side, gaining weight without changing dietary habits, though I've also tended to, over a period of a few months, lose anywhere from 10-30 pounds without altering my diet either.

This morning, I saw the specialist again to speak with him about the possibility of celiac disease and decide what I should do when I go away to college in the fall and have to deal with dorms and meal plans. He told me that I have no symptoms of celiac disease, other than 'occasional' diarrhea, that patients with celiac disease do not experience abdominal pain, and that I have IBS. He did agree to rerun my blood tests and next Friday I'll be undergoing a biopsy.

I pulled out the books I've recently bought on celiac once I got home and, lo and behold, among the listed symptoms of the disease are fatigue, abdominal pain and cramping, constipation and diarrhea, joint pain, irritability, depression, unexplained weight loss or gain, and we aren't sure about anemia. Basically, the only symptom I do not present with is DH.

Over the past two months, I've really convinced myself that I have celiac disease. While, it's not a lifestyle change I want to have to live with for the rest of my life, it's finally an answer. I know I shouldn't let myself get worked up over anything until I have the test results, but it feels like I can't seem to find anyone who will listen to me and really hear what i'm saying--not even my doctor.

and thus concludes today's rant

One other question I have before I go: is it possible to have an intolerance to gluten while not actually having celiac disease? Doc says no, but I really don't know if I can trust anything he tells me after today.

Thanks for listening

[kirst4588]

Hey Deb,

I'm new at all of this, but like you, my doctor [my son's doctor actually] just said, go read about in on the Internet. Which I have been doing. However, I also contacted a local celiac disease Support group and was visited by a chairperson who brought tons of knowledge. Basically, it is debatable if the biopsy is necessary for diagnosis - its accuracy is dependant on how long youve been on the diet, how strict youve been (have you cheated), will the doctors "hit the right spot" etc

good luck and let us know how the tests results go for you

[tarnalberry]

per your last question... the way I've come to think of it in order to relate to the doctors is the following:

celiac disease and gluten intolerance are NOT the same. gluten intolerance (the body's predisposed, static state with respect to gluten - that is, a state of really really not liking it) leads to celiac disease (an abnormal, dynamic state of the body in which there is diagnostically-visible damage being done to the villi of the intestine). essentially, I think of being gluten intolerant as like being blue-eyed, and being near sighted as like celiac disease. due to my genetic code, my eyes look blue, and my intestines go funky in the presence of gluten. due to my lifestyle, diet, and environment, I became nearsighted and developed celiac disease. (note my signature - I am not biopsy diagnosed, but I believe this to be the case anyway.) (and yes, I know that there is generally a trigger for those genetically predisposed towards celiac - eye color can be influenced by environment to a degree as well.) one reason I use this simplification is to categorize those who are asymptomatic as being gluten intolerant, but not yet having celiac disease.

I know this is not "correct" according to some descriptions. But between some doctors wanting to see lots of damage on tests, and a lack of a concise, agreed upon definition of the two terms, I use this distinction so that if a doctor wants to say "You don't have celiac disease," I can say "Fine, call it that if you like, but I am intolerant to gluten, and will develop what you're calling celiac disease if I eat it." (And add a little parenthetic, in-my-head-only "And since when have you lived in my body, you little....." ;-) )

Obviously this crude framework is only a 0th order approximation, and isn't going to hold up to intense scrutiny. But if you can work with that sort of thing for a 0th order model, and adjust as necessary depending on the situation, then I find it to work. And I know some people will not want to use an approximation that has such low fidelity, so I just throw it out there as one way to think about it, how I think about it, not necessarily the best way for you. :-)

The other thing I'd do is get a new GI. At least one that's familiar with the symptoms of the disease. Either that, or bring a ream of research with you to your next appointment, having highlighted the salient points... :-) (That might just piss him off, though...)

[debmidge]

To: dlf1021 Deb

Read your pre-test post. What was the outcome of the test? It seems that all doctors have a problem knowing how to diagnose. What is this business that the patient look into his own health problem without the doctor's input? What do we pay them for? one word: LAZY. What's next? Do it yourself surgery?

In my opinion, the diagnosis should come from the medical expert -- then the patient can investigate his/her condition on their own via library or internet. No wonder people buy so many bogus over the counter medications & waste money on them - it's because doctors refuse to do their jobs. The doctor's job, in my opinion, is to diagnose using every available tool; listen to the patient's complaints without criticism; investiate every possible illness connected with your symptoms (for example, maybe your IBS is more serious than regular IBS - Dr.'s job is to analyze possible other conditions that could mimick IBS: celiac disease, pancreatic cancer, etc.) and the Dr. should be up to date on medical advances and get refresher courses on those illnesses which he/she can be out of touch with. This is what we are paying them for. Anything less is negligence and of course, unethical.

This is just one woman's opinion.

[plantime]

Read Debmidge's post and change the last line to "This is just two women's opinions." I pay my doctor plenty, and I expect to get what I pay for!

[YankeeDB]

I heard from three gi doctors in the Pittsburgh area that IBS is a bogus diagnosis. One of them said she thought it stood for "I be stumped!"

[plantime]

"I Be Stumped"!! Oh, I love that one! They be stumped. alright!

[debmidge]

Hi All

Most of you already know my opinion of doctor's who won't perform tests, investigate the cause of the problem further, etc. Most of you know my opinion is based on my husband's actual case history. But it's sad to say but my father had a similar experience with a General Practioner. He had symptoms similar to my husband's IBS, but with diarrhea. This GP treated my father for IBS, stress and only treated the symptom of diarrhea. The GP ran blood tests for everything but celiac, (my Dad didn't have celiac) but he did not know how to read the blood test results. The liver test results indicated hepititis and the Dr. kept asking my dad if he ate bad shellfish (my dad hated fish) or if he had sex with strange women (my dad was not like that!). My dad was insulted over this last question.

By the time the GP decided that my father should go to a specialist, it was too late (about 10 months of jerking him around). My father had advanced pancreatic cancer. He finally saw a specialist & had surgery at Sloan Kettering in NYC. Sloan Kettering advised that it was too late, the cancer had spread to the liver. He died at age 56 almost 2 years later.

So you see, I am not just mouthing off about doctors just because of my husband's 28 year misdiagnosis, I have good reason to feel the way I do. I have even more stories about doctors who don't listen to patients (I have one about my torn rotator cuff & an ortho doctor, but I don't want to bore you). What I am saying is that as a non medical person what can we do about less than average performance doctors? It seems like there are an abundance of them. I can't even blame the insurance companies in any of the situations I am discussing here.

And yes, I will hold all Doctor's feet to the fire until I feel that some changes are being made. Let me end by saying there are a very small percentage of doctors out there who are really interested in their patients and want to be an active partner in the medical diagnosis, etc.

Take care, Deb

[celiacfreeman]

mine GP couldn't believe I was still have a regular cycle

after getting my result back from Gastro doc

My bone loss was substantial when diagnosed 5 months ago,

I have silence spure (no awareness of stomach probems)

anyway it blew his mind that I was having regular cycles and

that I was a celiac. My GP sent me to the gastro doc becaseu I was

anemic and I am so blessed that my gp thought anemia was not normal

for someone still have a cycle

[debmidge]

celiacfreeman:

In the absence of celiac sprue, what did the first doctor think your anemia was from?

Debbie

[Guest NitaB]

debmidge,

I am so sorry about your father! How awful for that to have gone on so long. But, I can relate to that. I have a very good friend, older at 77, but the epitome of health and vigor always. She had complained about her stomach a long time, had her ulcer meds changed a few times. She just recently was diagnosed with pancreatic cancer! The Dr. who even found it was going to remove some bumps on the back of her head, sent her for a blood test, and her billirubin was so high! Not even her reg. Dr.!!! I wonder how long it would've been left undiagnosed, without that blood test!

Now she is after me to get better tests for my digestive troubles. My Dr. isn't sold on my having celiac disease either. She is having me try gluten-free, for lack of anything better to do! I just saw the Dr. today, because I was just diagnosed with osteoporsis! She doesn't think it has anything to do with celiac disease, as they aren't even sure I have it! Brother! But, my biopsy looked like celiac, with lesions with flattened villi. But, because my blood test came back neg. and I'm not anemic, she just isn't sure!

My biggest problems, if I eat right, are fatigue and slight depression. I don't seem to have bad reactions to slight gluten traces. I don't know if that's good, or not, as then I don't know if I'm gluten-free!

What's with these Dr.s anyway? I'm pretty frustrated after my appt. today. I think she pooh-poohs my symptoms. And, she is unlike all the Dr.s everyone here talks about. She doesn't like me looking up stuff on the internet, and self-diagnosing! It's like she doesn't want me to know more than she does!!!!

[stef-the-kicking-cuty]

Hello to all,

what do you think, what your docs do for living? Stupid question, he? If they would diagnose you with celiac, they would lose you as a patient (that's how they probably think about when it comes to celiac disease). There's no medication that they can prescribe for you. If you feel perfect again, than there are no more appointments to make. Normally, when you're feeling alright after avoiding gluten you have no reason to go back to the doc because of celiac disease (maybe something else that bugs you?). So what happens? Instead of going to the doctor regularly (like you would do with a disease that needs to be checked regularly), you'll go to a gluten support group normally, because they can help you better. Very few people go back to their doctor, because of being a celiac or to get checked again. Because you mostly feel good once you avoid gluten. In my opinion that's exactly the reason, why the people aren't listening to you. Not even your doctor...

And @ Nita: That's exactly the reason why your doc "pooh-poohs" your symptoms. That's why she doesn't like you looking stuff up in the internet and self-diagnosing. That IS the reason why she doesn't want you to know more than she does. Or more than she probably already figured out??? Because, if you figure out (or she does figure out, either way), what you have, than over short or long time you won't need her anymore. That's just something to think about...

Maybe i'm not write with how i think about it, but that's my honest opinion.

Greetings, Stef

[lovegrov]

Stef,

I don't know about your doctor, but mine is so busy he's perfectly happy not to have me in all the time. He has absolutely all the business he can handle without ever seeing me. In fact this doctor agreed to take me only because I DO have celiac. He has it, too. but he wasn't taking new patients.

Also, a doctor worth his or her salt WILL being seeing you in followup visits. You should have the bloodwork redone after one year and again at other intervals. Maybe you won't be in as much as somebody with something worse, but you should still be seeing your doctor.

Maybe I'm naive, but I really don't think many doctors stand there and think, "I'd better not diagnose celiac because I won't make enough money. I'll make something up instead."

richard

[GEF]

It doesn't take that much effort to read something about IBS...look at how much the drug companies have been promoting it... it's everywhere! It's a real shame that there are so many who believe it's a proper diagnosis and give up finding the real cause to their health problem. I'm sorry, but anyone with GI issues knows it's not normal and knows it's not healthy. I can't wait until those commercials stop and they stop making those IBS posters!!

Gretchen

[stef-the-kicking-cuty]

Hello Richard,

well, than you can be happy to have a doctor like that. But a lot of people don't seem to have a doctor like that. Otherwise they wouldn't complain, would they? And it makes me really angry , when i hear about something like that. A lot of years i ran from doctor to doctor and nobody could figure it out. Even if it's a disease which is very uncommon. As a doctor you should check out every possible thing and not just make stupid statements like "Oh, that can't be celiac, because you're not skinny enough" or "because you're not anemic" or so. That's kind of the wrong attitude, isn't it?

Nice greetings, Stef

[Guest ~wAvE WeT sAnD~]

Stef,

You're right...but the problem is that the doctor (specifically an Internist, which is what we call them in America [you're German, right? ], which are the doctors responsible for testing patients and referring them to specialists, such as Gastroenterologists--Gut doctors) only has symptoms to rely on--so the unfortunate part, which makes me as angry as it has made you, is that this doctor takes part in what I'd like to call for lack of a better phrase, "educated guesswork." For example, if your symptoms are nausea/vomiting, an Internist will test you for any illness/disease/whatever which falls under the nausea/vomiting category, such as pregnancy tests (morning sickness), the flu, anemia...but then the test results are normal. I have shared your frustration prior to my diagnosis, and I feel your pain.

Statements such as "you're too skinny to be a Celiac" are just plain insensitive and ignorant on a doctor's part. I say, do the job! Doctors should use their knowledge wisely, not make wise-@$$ comments like that. I must admit, that ranks right up there with "if this is what I think it is, it'll go away."

I guess that while doctors can be frustrating at times, you have to get a feel for their indecisiveness, because it's mostly because they're scrambling to find a diagnosis if they're not familiar with celiac disease--there are wide range of symptoms, physical and psychological, so sometimes the doc may not get the big picture and diagnose one symptom (depression=manic depression, constipation/gas = IBS).

Above all, I think it's best for all of us, diagnosed or undiagnosed, to take full control of our health. If you believe it's celiac disease, and the doc is refusing to test, don't back down...it's YOUR health, and only YOU can preserve/protect it.

Just my thoughts--thank you for listening.

Sincerely,

[nancyb]

Hi,

I too had a frustrating time diagnonsis gluten sensitivity. My primary at the time was cluless. I found celiac.com, then enterolab.com. I sent in a stool test and it came back "significant gluten sensitivity". Then i sent in for the gene test and it came back that I did not have the main gene for celiac disease but had 2 copies of the gluten sensitivity gene. A gluten-free diet helped tremendoulsy. I urged my parents to be tested but their doctors refused. One year later after my mom had 1/2 her stomach removed due to stomach cancer the oncologist finally agreed to test her and she came back positive for celiac disease!

I don't know what it will take to wake these doctors up...

Check out Enterolab, Dr. Fine was right..

Nancy