We Need To Start A Thread On Stupid Stuff Doctors Say!

[IrishHeart]

My former gastroenterologist stated that my colon was quite twisty and turvy and that this was indicative of IBS! Medical jargon, you know.

"quite twisty and turvy"

hmm...that's a new one.

[MartyrMom2]

"quite twisty and turvy"

hmm...that's a new one.

Never cease to be amazed!

[IrishHeart]

Never cease to be amazed!

I never do.

Not when it comes to anything having to do with the medical community....or celiac...or human nature.

[mushroom]

How about : "We don't regard that to be medically significant!" - spoken of my breathing problems before I was diagnosed with COPD. How I hated that woman and I was stuck with her as a PCP in an HMO Supercilious beotch.

[IrishHeart]

How about : "We don't regard that to be medically significant!" - spoken of my breathing problems before I was diagnosed with COPD. How I hated that woman and I was stuck with her as a PCP in an HMO Supercilious beotch.

beotch

shroom, I just sent a bunch of articles to a family member re: COPD and celiac. Guess we can add it to the ever-growing list of related diseases, I am afraid.

[Slr38]

Geez, after reading these posts I am so nervous for my appointment next week! I will be asking my doctor to send me for blood work to test for Celiac Disease. I am so worried that I may get a stupid reply from my doctor! I am not very good at sticking up for myself.

[mushroom]

Geez, after reading these posts I am so nervous for my appointment next week! I will be asking my doctor to send me for blood work to test for Celiac Disease. I am so worried that I may get a stupid reply from my doctor! I am not very good at sticking up for myself.

You need to go in to your appointment armed with ammunition, so that if you get that kind of response you can say, "Well, I have this symptom and this, and this, and out of this whole list of symptoms I have X number of them and I think that really could be what is wrong with me. And these are the tests you need to run to find out" Do some googling research around here and find the info you need. You can't be a celiac and be a wuss or you will be an undiagnosed one

Seriously, an armed, informed patient gets a lot further than an indecisive one, but you don't have to go in with all guns blazing. Keep your gun holstered and the ammo up your sleeve until and if it becomes necessary. Then be very calm and reasonable in explaining how you came to believe that is what you have. They (doctors) are capable of learning if we teach them right.

Best wishes for a successful appointment.

[GottaSki]

Geez, after reading these posts I am so nervous for my appointment next week! I will be asking my doctor to send me for blood work to test for Celiac Disease. I am so worried that I may get a stupid reply from my doctor! I am not very good at sticking up for myself.

No reason to worry yet. There are many very good doctors and knowledge regarding Celiac Disease is slowly improving.

The best thing you can do is be prepared. Bring a written list of your symptoms that can possibly be Celiac Disease or Non-Celiac Gluten Intolerance. I find it comforting to have my list of symptoms and all the questions I have thought prior to the appointment right in my hand. There are still times when I forget to ask something, but my appointments have improved greatly since I started this practice.

Remember - your doctor may very well think it's a good idea and order the tests without discussion.

In my opinion the best question for your very first appointment - should the doctor dismiss the need for testing - "Given my symptoms, what harm can running a full celiac panel cause?"

Oh...there is a list of the 300+ symptoms of celiac that someone has posted a few times - maybe someone else can provide it for you. I'll take a peek and see if I can find. It can be handy to take to your appointment as well.

Hang in there

Edited - Mushroom beat my post and it is spot on!

[Slr38]

Thank you both for your replies, they were very helpful. I will be sure to have a list of symptoms with me. There is also a letter for the doctor that the Biocard people supply if you get a positive result.

I will be brave!

Thanks!

[KimT]

I hear you on the Dr. shopping! I've been to 6 different ones since my DX in late June. Two of them were Residents who said I was "too old" to have Celiac.

That is funny, I got told by my GI that I was too young to have it at 27 years old. He went on to explain that it was an end of life problem. However, he agreed to do the biopsy because I had the positive blood test and the referral from my GP. He did one sample and then declared that the biopsy was fine, I did not have Celiac and that I could eat bread. This is before I knew anything about it so I was relieved.

I then was curious about the false positive blood test and the fact that I felt so sick, so I looked it up on the internet. After just a little bit of learning, I was positive that I had it. I talked to him about this at a follow-up appointment. I brought up the positive blood test and how we should have gotten multiple samples from different areas for biopsy. He said, "well your white, I wouldn't eat a lot of bread, most white people can't tolerate much carbs." WHATTTTTT? My husband then jumped into the conversation and this guy defended his not celiac diagnosis and sensitive to carbs because I'm caucasian. He ended it with a, "we never have celiacs in my country" comment (he's African).

Thank goodness I can just go gluten free and I don't need any medications/prescriptions from him or anything.

[psawyer]

That is funny, I got told by my GI that I was too young to have it at 27 years old. He went on to explain that it was an end of life problem.

I was 45 when I asked my long-term primary care physician to test me. He said it was a rare childhood disease--I was too old--but he made the referral.

[ncdave]

Hay doc, does this antibotic for my broncitus have any wheat or corn in it?

No it doesen"t contain anything like that, i think you"ll be fine.

One phone call to the mfg proved no gluten, but azithromycin (more common known as a z pac) does indeed contain corn.

[my3monkees]

The exact same pediatrician who had diagnosed my dd a 2 yr. earlier.

When I mentioned that her younger brother was starting to show the same symptoms. She said it would be really hard having 2 gluten free children, especially considering how expensive it was. So I should just give him a tums before each meal.

Apparently I was supposed to let him get as sick as my daughter had been, just to save money!

[Krystal K.]

8 months pre-diagnosis dr says "what do you think it could be?".......ummmm if i had a clue i wouldnt be here.....6 months pre-diagnosis "hmmm I wonder if you have celiacs?" .....but didn't test me for it instead ordered a nerve conduction test & a brain mri... man if only she went with her gut and actually tested me for celiacs back then, I would've suffered a few months less and that would've been awesome!!

[CarolinaKip]

Before DX...My regular MD patted my leg and said "well, I'm sure your GYN can fix you up"

After having surgery (many pills, and ct scans)to see if I had a "female" problem, my GYN said.."have we thought to send you to a gastro"

Gastro PA told me it was IBS...only after feeling even worse on that diet, did I go back to eating salads. Feeling somewhat better, the PA asked 4 months later..."have we tested you for Celiac?" The gastro MD doing my endo asked"Why didn't we do this with your colonscopy?" I said "ask your Physcian asst!"

Then after being gluten-free for 8 months and not feeling much better he did another blood test. My levels were almost normal. He said"Maybe you don't have celiac?'

Are you kidding me!!! I told him to go back and look at the beginning blood work and my endo! He said "Yea, you do have celiac grrr!

[LWebster]

My partner asked her doctor about being gluten free and for some tips. The Dr turned the PC monitor round and showed her a website that she had already read. The Dr clearly had no idea! Time wasted.

[AandGsmomma]

I love this thread!!!! I switched primary doctors because my previous doctorr totally missed PNEMONIA! I explained the MA that my pain level was a 7 and that the pain had been going off and on for years! Dr came in the room and said "Well since you have had this for so many years, I probably wont be able to figure it out. You will just have to deal with is because its a chronic pain issue!' This same dr also explained at a follow up appt when I asked for guidance on a healthy diet she told me that she couldnt advice patients on their health because SHE WOULDNT GET PAID FOR IT AND I SHOULD JOIN WEIGHT WATCHERS!

[frieze]

I love this thread!!!! I switched primary doctors because my previous doctorr totally missed PNEMONIA! I explained the MA that my pain level was a 7 and that the pain had been going off and on for years! Dr came in the room and said "Well since you have had this for so many years, I probably wont be able to figure it out. You will just have to deal with is because its a chronic pain issue!' This same dr also explained at a follow up appt when I asked for guidance on a healthy diet she told me that she couldnt advice patients on their health because SHE WOULDNT GET PAID FOR IT AND I SHOULD JOIN WEIGHT WATCHERS!

I would have been tempted to report her to the AMA, for the last comment. True, it would not mean much in and of itself, but as part of a paper trail, it couldn't hurt.

[Celiac Mindwarp]

Dreadful isn't it? I asked a number of doctors for help with weight loss over the years. Several have said eat less and exercise more. D'oh, if only I thought of that...

[moonablaze]

at the very least they should have referred you to a nutritionist or better yet an actual dietician!

Today I went in for an endoscopy to see what might be causing this stomach pain and other symptoms I've been having for weeks (I've been gluten free for over 2 years but it started with an accidental glutening). When they wheeled me into the treatment room the tech asked me about my symptoms and replied "have you tried cutting out gluten?" >.<

[Alys]

My fav was my first GI visit 12 yrs ago. A quick behind glove test, and then back to his office for the results.

Dr.: "Stop stressing out, and this should go away"

Me : (nearly crying from being so sick) "ok" not knowing better back then

Dr: "you may also want to pick up some Benadryl for those hives and rashes you have on you skin'"

So stress causes celiac and Benadryl solves DH?? wouldn't that be grand. Wish I had known better back then. On a positive note my dr now rocks and the medical community is finally starting to handle is seriously.

[kater]

I don't have too many horror stories...I've been lucky with docs. My family's GP is kind of scary though. Apparently he's a great doctor, but I don't know if I believe the hype! He always fights with his receptionist, which probably raises the blood pressure of everyone in the waiting room. When I had my positive blood test, all of the doctors who saw it said, "woah, yeah, you definitely have celiac" (but recommended the biopsy too, of course). Two gastros recommended that my immediate family members get a blood test, just in case. My dad went in and the GP said that he shouldn't get the blood test if he doesn't have symptoms. 'Cause no one with celiac doesn't show symptoms. I wonder if he'll allow the blood test now that I've been officially diagnosed?

[bartfull]

You know, with celiac being in the news so much lately, you'd think doctors would "brush up" on it. I fear that those who do just go back to the books they studied when they were in medical school rather than getting the LASTEST information.

And that makes me wonder, what OTHER diseases and conditions do doctors not keep up on? No wonder we are taking our lives in our hands every time we visit the doctor!

[squirmingitch]

You ever get the feeling that most of the doctors out there went to the Frank Burns School of Medicine?

[mushroom]

No, I'm with Bartful -- you need to look at the newest books on their bookshelves, except most of them don't seem to have bookshelves any more (except my PCP, and she has the latest stuff