Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

We Need To Start A Thread On Stupid Stuff Doctors Say!
0

280 posts in this topic

I wonder how often one is diagnosed with cancer and is given the diagnosis, given handouts or told to "go check the internet"

 

With cancer they are going to make more money off you, with celiac they are not.  :ph34r:

1

Share this post


Link to post
Share on other sites


Ads by Google:

Well, I have joined the many that have been told to see a psychiatrist because of my rash.  I just about fell off the exam table as I listened to a new dermatologist tell me that my rash was caused by my mind.  He told me that I felt an itch, scratched it and it became a blister of fluid.  Then when the skin was broken, it became infected.  He also told me that "everyone" saw psychiatrists to which I replied, "No, everyone does not"!  He told me his wife was a psychiatrist, maybe he was trying to drum up a patient for her?  LOL  

Then he tells me I do not have T Cell Lymphoma, he knew that for sure (just by looking).  Hmmmmm  He said the 3 biopsies I had by the first dermatologist would have shown DH . . . I'm like, "No they wouldn't, she took the biopsy from the lesion."  I think the guy met his match today.  The appointment ended with him referring me to the head of Dermatology at USF.  What a waste of my time today!  He did not even offer to take a biopsy.  I'm not really sure what he does. . . 

 

Saw the head of Dermatology this past Tuesday and I told him the above story.  He examined me, had 2 biopsies taken peri lesions and told me I had DH due to my response to Dapsone and photos of the blisters and my history.  He gave me an explanation as to why his associate made the above statement.  "He saw the toughness of your skin on your back and assumed you had scratched your back w/o cause.  That is why he thought it was neurological."    ;) 

 

0

Share this post


Link to post
Share on other sites

Not a stupid thing doctors say, but maybe? I'm really bothered by it and I just need to vent anyways.

 

So I had my second biopsy yesterday and I was drugged up and this is what I remember. Vomitting fluid a bit (I drank water after I washed my hands a few hours before procedure, I shouldn't have but it was automatic and I hadn't even realized I had done so until I noticed my mouth was warm from the warm water I drank), people telling me to relaxed, forward in time to me being wheeled back to the bed area and the doctor saying "You think I'm stupid". I said "I didn't say you were stupid". While walking away he said "No, but you were thinking it", and I said "I don't think you're stupid" but he might not have heard that because I think I was being quiet and he had gone too far away.

 

The thing is I don't think that doctor's stupid. Far from it. He's the only doctor I've seen in well over a decade who I feel didn't ignore me or gloss over concerns the only meeting I had with him 7 months ago. And yeah, I grilled him because I wanted to know everything and I brought references to research I wanted to know about, and I'm sure it took more than the allotted time a patient usually has. No, I don't think he's up about all the current celiac research, but that doesn't make me think he's stupid.

That said, there are some doctors I've met who I think are stupid, but generally I think most doctors and very smart but they hardly give me the time of day so they don't do their job right. And I know that I can come off as arrogant, but I honestly have no idea what I did or said to make him think that I thought he was stupid, I hardly said anything before the procedure. He asked if I was following the diet well and I said yes and he seemed dubious but I didn't feel like could go into detail right there, that's what my meeting with him is for, but I did mange to tel him that I feel like I'm not getting better fast enough and he assured me that it hasn't been very long and I've had celiac disease my entire life. I suppose I'm not sure I've had it my entire life, so maybe I said something about that when I was out?

 

This is really bothering me, and I didn't get a chance to talk to him afterwards then and there, and now I'm really worried about the follow-up meeting I'll have with him. I cried waiting for the drugs to wear off because I didn't want to hurt his feelings and also because I don't understand how, when I'm drugged up for like 10 min most of which I've got a tube in my throat, I could possibly make someone think they're stupid. Why do people read me so wrong all the time? Was it my previous appointment? I did see on the sheet that I he wrote duodenum healing, so that's good, so maybe he told me what when I was out and I said something like I wasn't feeling better so that's wrong or something???

 

I probably won't even have time to get into that when I see him to go over results, there's so little time and obviously I want to discuss my progress, not our relationship. This really sucks :-(

don't worry, the meds they give you often have odd effects, the docs know this.

0

Share this post


Link to post
Share on other sites

While trying to figure out what was wrong with me, my GP sent me for a test to check how well my stomach empties its a long 4 hour test where they feed you radiation laced breakfast and then they take pictures and follow the food through your body.

 

I am a 35 year old happily (for the most part) married wife and mom of 2. As the tech/Doc is preping me for the test she askes me when my last period was. to which I respond its been about 3 years as I have an IUD, However I know I am not pregnant because I was here a week or two ago for another test and they gave me a pregnancy test which was negative and my husband and I have not been intimate since before then. The Tech responds that is not a deciding factor!!! I raise my eyebrows and go since when did sex become a non deciding factor for being pregant???  Her response Well you could be lying!!!! and then goes on to tell me that often times girls will swear there's no chance they are preggers and go get CT scans and there plain as day is a baby!!!!!

 

I'm sorry but a ct scan is not the same as feeding me radiation and to call me a liar......

0

Share this post


Link to post
Share on other sites

Gastroenterologist walks into the room, looks at my chart and says: "You have Celiac Disease. Go look it up on the internet. Come back in 6 months". Then walks out. That was the appointment where I was given the diagnosis.

Another doctor: "since the Celiac came on so quickly, I'm sure it will disappear just as quickly."

NOT to make light of your situation, I think that telling you to go google it is outragous I MEAN REALLY why are we paying them if we can find the info on the Web!!! But at least you got an appointment!!!!

My doctor didn't even call me he had one of the office peons call the phone call lasted maybe a minute

She goes: your blood work came back positive for Celiacs Disease, the doctor recommends you go on a gluten-free diet and if you have anyother questions call the hospital and talk to a nutritionist. I  managed to ask if they recommended anyone and she goes no anyone will do bye!!! and she was gone.

 

At no time did anyone explain to me what Celiacs disease was or what causes it or anything!!!!

0

Share this post


Link to post
Share on other sites




Oh brother!  I have been recently diagnosed through endoscopy and biopsy.  All of the symptoms I had - brain fog, migraines, stiff joints, etc have an explanation.  My diagnosis was curt and by phone by one of the Dr's office workers.  "Your biopsy results are back, you have Celiac Disease.  Quit eating gluten and we'll see you in 4 weeks."  I make the follow-up appointment and my blood is tested - I am supposing for being glutened.  The only advise I receive is a packet of xeroxed handouts with websites to go to.   When I asked the nurse about recommendations for seeing a dietitian, "That's your job, honey, not ours".  "You have to ask for it."  

 

I wonder how often one is diagnosed with cancer and is given the diagnosis, given handouts or told to "go check the internet".  

 

I didn't even know I had had a biopsy done. Then I got a call at the end of a business day on a Friday to tell me the results of my biopsy. I was like wha.....???? "You have celiac, when do you want to come in to schedule more follow up testing?" Oh, you biopsy me and don't even tell me I had a biopsy then call me and tell me I have this life altering disease I never heard of and want me to come back?!?! Here's an idea.... screw off. Not exactly the words I used. I was much more colorful.  :D (I was sitting where I could google while they talked so I was pretty sure I would die before the weekend was over.)

 

Telling people to google though, while insensitive, is better then giving out bad info imo. At least you found us and you'll be on the right (if bumpy to start) path. Few nutritionists or dieticians even understand the gluten free diet well, so it is best if the information is gotten online rather than from a "professional" moron. 

 

My most recent experience has led me to think I really need to doctor shop. I went in for a CRPS diagnosis. It is as obvious as, well as it was for 30 years that I have celiac, that I have CRPS. There is no single other disease that explains my symptoms. Not any of the ones that have been thrown at me. Not MS, not Lupus, and the doctor refuses to entertain the idea of or treat for Lyme. Frankly, if it weren't for fear of phantom limb pain I would beg to have my leg cut off. WTH do I need it for anyway? I explained why I think it is CRPS and how, before symptoms started I used to fall off the front curb of my house a few times a week which frequently led to a twisted ankle. He explained to me that although my symptoms perfectly fit CRPS that because I didn't experience a "traumatic trauma" (his exact words, which he realized immediately sounded stupid but w/e) it couldn't possibly be that. Never mind people who have had it manifest spontaneously or from minor injuries. Oh, and all that falling off the curb? From my stupid celiac ataxia.  <_< 

 

At least he wasn't 100% moronic. He did tell me to ask the neurologist I already see about it at my next appointment and offered me... wait for it... Lyrica. I explained that I'm not comfortable only being given one choice in the prescriptions I take, if he could give me three options that would be great and I would research the drugs, their side effects, and let him know which I wanted. So he offered Lyrica, Cymbalta, and Neurontin. Two are name brand only and at $40 a pop a month. Guess which ones I didn't want to even consider taking because I knew he was offering them for the kickbacks? 

0

Share this post


Link to post
Share on other sites

So I saw the neuro this morning. I mentioned to him that there was an issue my doctor wanted me to discuss with him. (I figured saying it that way, which also happened to be true, would make him more receptive.)

 

him: So what seems to be the issue?
me: My doctor says I present with many symptoms of CRPS but wanted me to discuss it with you.

him: CRPS? What's that?

me: (not sure this is even worth discussing any more) Complex Regional Pain Syndrome..... RSD?

him: Oh, RSD. Well describe your symptoms.

I go over everything, which is textbook CRPS.)

Him: Well, you don't present typically or with typical symptoms.

 

At this point his next conclusion is that (although I have explained that i have been tested already 2 years ago, which is 2 years after symptoms started) it must be blood clots and I should get an ultrasound on my leg. He took one look at me and said yup, she is fat so that must be her problem. Dipshit.

0

Share this post


Link to post
Share on other sites

My non celiac friend who suffers from fibromyalia uses cymbalta & it does help her quite a bit. Not sure if it helps with CRPS, but her pain is everywhere, and she does get relief. She also recently started seeing the most fantastic phys therapist as well & has come off lidocaine patches due to his treatment.He is a needle in a haystack as she tried so many before. Not sure if these ideas might  help you but best of luck to you.

0

Share this post


Link to post
Share on other sites

I also have fibro and tried both Cymbalta and Lyrica for it and neither helped. I appreciate the tip, but have no interest in wasting another $40 a month on drugs that didn't help then as I am quite sure they won't again. My fibro is much better controlled gluten free. I've been on Neurontin a month but have begun to lose hope that it will do anything for me at this point either. I've begun doctor shopping, I'm done seeing morons more than once. I'm stuck with my Neuro though. Joy. <_< I'll just be sure to stick with the brain problem and leave my leg issue to someone not idiotic.

0

Share this post


Link to post
Share on other sites

I also have fibro and tried both Cymbalta and Lyrica for it and neither helped. I appreciate the tip, but have no interest in wasting another $40 a month on drugs that didn't help then as I am quite sure they won't again. My fibro is much better controlled gluten free. I've been on Neurontin a month but have begun to lose hope that it will do anything for me at this point either. I've begun doctor shopping, I'm done seeing morons more than once. I'm stuck with my Neuro though. Joy. <_< I'll just be sure to stick with the brain problem and leave my leg issue to someone not idiotic.

 

This was my path for years before DX. The fibro DX (which is a doctor's way of saying "you have pain I cannot explain and because it does not show up on any testing, I am giving up on you and giving you anti-depressants, muscles relaxers and neurontin. Now, get out.) Neurotin is essentially the same as Lyrica (gabapentin/pregabanin) and if you had no relief from Lyrica, neurontin will probably not help either, Addy.. Sorry honey. :( 

After a month, you should be seeing some relief. I feel your pain and I was disappointed by the lack of help and relief from meds, too.

 

 

The neuros go by the book. Thinking outside the box is impossible.(if they did, one of them might have seen I was a raging celiac)  I saw 5 of them in 3 years. Even 2 steroid injections did nothing for me.I took a chance doing those in  my spine, but I was willing to try it.  No help whatsoever.

 

And of course, all of those meds cause weight gain, swelling and edema, increase in appetite and  the big C. I blew up like a balloon on them.  (I refused the Lyrica after the neurontin debacle) When they work, they work. (like for diabetic neuropathy in my relatives) but if they don't, it is likely because the problem is in fact, caused by celiac and some vitamin deficiency or inflammation rather than permanent nerve damage. IMHO

 

One neuro told my GI doc "she will always have that burning nerve pain. It will not go away. She needs to take the neurontin".

<_< No, she won't, dipstick--it has tamped down tremendously and some days, I do not even notice it.. It only roars back if I am glutened

or have too many high histamine foods..They cause this stinging pain, too. (watch the amines) 

 

My overall pain level has decreased from a "just kill me 10" to a "I do not like it, but I'll take it 4-5". I expect more relief as I go along.

I hope you will also see relief the longer you are G F.

 

But all the neuros, spine specialists, rheumies and pain management specialists could say to me was "I don't know", shrug their shoulders and offer me more drugs and "see ya in 6 months."  

 

Being gluten free, having therapeutic massages and 2 years of PT has helped more than any doctor or medication. It hurts to get muscles out of atrophy, stiffness, pain and weakness, but in the long run, it's the only way to get out of the 24/7 pain and misery. My left leg , especially was swollen, aching constantly from hip to toe and burning the length of it. I had sciatic pain and calf pain so bad, I wanted to cut the leg off. It is much better than it was for nearly 8 years. (yup, I put up with that nonsense since '04)

 

You saw me swimming with dolphins last week, yet 2 years ago, I was told to get a scooter to get around and accept my fate...... Bah! <_< 

 

Sorry for the long post, sweets....but I always cringe when I hear yet another one of my celiac sisters has been given the quite possibly erroneous fibro label and does not get any more assistance or suggestions for treatment like PT, MT etc.  I did all of that and I am in much better shape and going back to the gym, too. . Fibro, my arse. 

 

I hope you find someone useful and more helpful in your search, my friend. Hang in there. xx

1

Share this post


Link to post
Share on other sites

With the benefit of hindsight.....

Me: I'm so constipated, I only go once per week and it's like trying to pass a house brick.

Doctor (without asking me anything about my diet): eat more wholemeal bread.

I was already eating 8+ slices per day!

Next visit....

Me: I have terrible heartburn and keep getting acid/vomit coming up into my mouth, still have terrible C.

Doctor: Have this repeat prescription for mucaine (antacid).

Next visit....

Me: I still have the same problems as before, but I'm also really, really tired all the time and have painful itchy spots/sores all over my scalp and on my face.

Doctor: I have just the thing! There is a new birth control pill that is specifically for acne, here you go.

Next visit......

Me: I still have all the other problems, nothing is helping, and now my weight is getting into the obese category. I know I eat a healthy diet, but I just can't lose weight, and I'm just so exhausted ALL THE TIME.

Doctor: You should eat less cake, do you know how many calories there are in cake.

Me: GOBSMACKED. I don't eat cake regularly,I told you I eat healthily, in fact I have been vegetarian for 8 years.

Doctor: You can't be vegetarian or else you wouldn't be obese and constipated.

Me: speechless.

Doctor: You should eat a whole head of lettuce, a tomato, and maybe an egg for protein, but be careful not to eat too many eggs because there are a lot of calories in eggs.

Me:You are talking rubbish, there are no more than 90 calories in an egg!

Another visit..... different doctor.

Me: I have a list of on going problems that just are not getting any better (every thing already mentioned, plus more weight gain, pain in joints since age 7, plus more, and more).....I wrote it all down because I want to give you the full picture and I keep forgetting things. I hand over the list....doctor reads it...

Doctor: Well, it's obvious, you are depressed. I'm going to give you anti-depressants.

Me: no thanks.

Another doctor....

Me: I'm now morbidly obese, I really need help to lose weight.

Doctor: Wouldn't we all.

Another doctor...

Me: I have all these things wrong with me, nothing gets better and now I've found this pea sized lump under my armpit, and the milk that used come out when I squeeze my nipple has turned to blood!

Doctor: Show me. Right, I'm making you an urgent CANCER REFERRAL.

Me: scared!!!!!!

At cancer referral, mammogram and scan done.....

Me: so, what is the diagnosis?

Consultant: You have a swollen lymph node, we don't think it is cancerous.

Me: so what does that mean?

Consultant: you need surgery to remove you milk ducts.

Me: really, why?

Consultant begins to explain the procedure......but I had done my research, I knew the procedure, but I wanted to know WHY I needed it.

He refused to answer me and continued to say how "simple" it was.

So, I changed tact. Me: What will happen if I don't have surgery?

Consultant: Here, have some antibiotics and I'll see you in 5 weeks.

Huh???

Antibiotics worked. Infection (that I was never actually diagnosed with!) cleared, swollen node remains, along with all the other swollen glands that I have gained through the years.....surgery? NOT NEEDED.

I have many more........I don't go to doctors anymore.....unless I know what is wrong with me and need something that is not available OTC.

2

Share this post


Link to post
Share on other sites

With the benefit of hindsight.....

Me: I'm so constipated, I only go once per week and it's like trying to pass a house brick.

Doctor (without asking me anything about my diet): eat more wholemeal bread.

I was already eating 8+ slices per day!

Next visit....

Me: I have terrible heartburn and keep getting acid/vomit coming up into my mouth, still have terrible C.

Doctor: Have this repeat prescription for mucaine (antacid).

Next visit....

Me: I still have the same problems as before, but I'm also really, really tired all the time and have painful itchy spots/sores all over my scalp and on my face.

Doctor: I have just the thing! There is a new birth control pill that is specifically for acne, here you go.

Next visit......

Me: I still have all the other problems, nothing is helping, and now my weight is getting into the obese category. I know I eat a healthy diet, but I just can't lose weight, and I'm just so exhausted ALL THE TIME.

Doctor: You should eat less cake, do you know how many calories there are in cake.

Me: GOBSMACKED. I don't eat cake regularly,I told you I eat healthily, in fact I have been vegetarian for 8 years.

Doctor: You can't be vegetarian or else you wouldn't be obese and constipated.

Me: speechless.

Doctor: You should eat a whole head of lettuce, a tomato, and maybe an egg for protein, but be careful not to eat too many eggs because there are a lot of calories in eggs.

Me:You are talking rubbish, there are no more than 90 calories in an egg!

Another visit..... different doctor.

Me: I have a list of on going problems that just are not getting any better (every thing already mentioned, plus more weight gain, pain in joints since age 7, plus more, and more).....I wrote it all down because I want to give you the full picture and I keep forgetting things. I hand over the list....doctor reads it...

Doctor: Well, it's obvious, you are depressed. I'm going to give you anti-depressants.

Me: no thanks.

Another doctor....

Me: I'm now morbidly obese, I really need help to lose weight.

Doctor: Wouldn't we all.

Another doctor...

Me: I have all these things wrong with me, nothing gets better and now I've found this pea sized lump under my armpit, and the milk that used come out when I squeeze my nipple has turned to blood!

Doctor: Show me. Right, I'm making you an urgent CANCER REFERRAL.

Me: scared!!!!!!

At cancer referral, mammogram and scan done.....

Me: so, what is the diagnosis?

Consultant: You have a swollen lymph node, we don't think it is cancerous.

Me: so what does that mean?

Consultant: you need surgery to remove you milk ducts.

Me: really, why?

Consultant begins to explain the procedure......but I had done my research, I knew the procedure, but I wanted to know WHY I needed it.

He refused to answer me and continued to say how "simple" it was.

So, I changed tact. Me: What will happen if I don't have surgery?

Consultant: Here, have some antibiotics and I'll see you in 5 weeks.

Huh???

Antibiotics worked. Infection (that I was never actually diagnosed with!) cleared, swollen node remains, along with all the other swollen glands that I have gained through the years.....surgery? NOT NEEDED.

I have many more........I don't go to doctors anymore.....unless I know what is wrong with me and need something that is not available OTC.

You must live near me because that sounds like some of the doctors I have visited and some of my conversations, I was told to eat more yogurt too, I  know take a lactaid on the rare occasion that I have dairy.  

 

The really stupid one though.

 

Lose of "desire"  doctor.."sometimes you just have to take one for the team"  I had a serious problem and I needed help!  Another side effect.  My husband is happier these days. ;)

0

Share this post


Link to post
Share on other sites

With the benefit of hindsight.....

Me: I'm so constipated, I only go once per week and it's like trying to pass a house brick.

Doctor (without asking me anything about my diet): eat more wholemeal bread.

I was already eating 8+ slices per day!

Next visit....

Me: I have terrible heartburn and keep getting acid/vomit coming up into my mouth, still have terrible C.

Doctor: Have this repeat prescription for mucaine (antacid).

Next visit....

Me: I still have the same problems as before, but I'm also really, really tired all the time and have painful itchy spots/sores all over my scalp and on my face.

Doctor: I have just the thing! There is a new birth control pill that is specifically for acne, here you go.

Next visit......

Me: I still have all the other problems, nothing is helping, and now my weight is getting into the obese category. I know I eat a healthy diet, but I just can't lose weight, and I'm just so exhausted ALL THE TIME.

Doctor: You should eat less cake, do you know how many calories there are in cake.

Me: GOBSMACKED. I don't eat cake regularly,I told you I eat healthily, in fact I have been vegetarian for 8 years.

Doctor: You can't be vegetarian or else you wouldn't be obese and constipated.

Me: speechless.

Doctor: You should eat a whole head of lettuce, a tomato, and maybe an egg for protein, but be careful not to eat too many eggs because there are a lot of calories in eggs.

Me:You are talking rubbish, there are no more than 90 calories in an egg!

Another visit..... different doctor.

Me: I have a list of on going problems that just are not getting any better (every thing already mentioned, plus more weight gain, pain in joints since age 7, plus more, and more).....I wrote it all down because I want to give you the full picture and I keep forgetting things. I hand over the list....doctor reads it...

Doctor: Well, it's obvious, you are depressed. I'm going to give you anti-depressants.

Me: no thanks.

Another doctor....

Me: I'm now morbidly obese, I really need help to lose weight.

Doctor: Wouldn't we all.

Another doctor...

Me: I have all these things wrong with me, nothing gets better and now I've found this pea sized lump under my armpit, and the milk that used come out when I squeeze my nipple has turned to blood!

Doctor: Show me. Right, I'm making you an urgent CANCER REFERRAL.

Me: scared!!!!!!

At cancer referral, mammogram and scan done.....

Me: so, what is the diagnosis?

Consultant: You have a swollen lymph node, we don't think it is cancerous.

Me: so what does that mean?

Consultant: you need surgery to remove you milk ducts.

Me: really, why?

Consultant begins to explain the procedure......but I had done my research, I knew the procedure, but I wanted to know WHY I needed it.

He refused to answer me and continued to say how "simple" it was.

So, I changed tact. Me: What will happen if I don't have surgery?

Consultant: Here, have some antibiotics and I'll see you in 5 weeks.

Huh???

Antibiotics worked. Infection (that I was never actually diagnosed with!) cleared, swollen node remains, along with all the other swollen glands that I have gained through the years.....surgery? NOT NEEDED.

I have many more........I don't go to doctors anymore.....unless I know what is wrong with me and need something that is not available OTC.

OH and I only go to doctors when I must now too.  Same for my kids.  

0

Share this post


Link to post
Share on other sites

Happy to find this thread since this is a very annoying issue to me!

 

I'm sick and tired of any doc I see asking me "how do you know?" after they hear celiac in my medical history. It's like I can feel them trying not to roll their eyes!!

 

After having microscopic blood in my urine for 3 years that was unexplainable, which went away when I gave up gluten, my urologist told me "eh, you're overthinking this, you can eat gluten" (because he had no idea about celiac related kidney damage.)

 

And I saw a dermatoligst for an unrelated problem and he asked me the same "how do you know" question, which I answered by saying I was diagnosed by GI. This dermatologist tested me for some of the gluten antibodies along with my other blood tests (without telling me he was going to test for them). Then when the tests came back negative he announces proudly "you don't have celiac, your antibodies were negative!".....and I had to tell him, "that's because I've been gluten free for a year you moron!!!!"

 

 

1

Share this post


Link to post
Share on other sites

Happy to find this thread since this is a very annoying issue to me!

 

I'm sick and tired of any doc I see asking me "how do you know?" after they hear celiac in my medical history. It's like I can feel them trying not to roll their eyes!!

 

After having microscopic blood in my urine for 3 years that was unexplainable, which went away when I gave up gluten, my urologist told me "eh, you're overthinking this, you can eat gluten" (because he had no idea about celiac related kidney damage.)

 

And I saw a dermatoligst for an unrelated problem and he asked me the same "how do you know" question, which I answered by saying I was diagnosed by GI. This dermatologist tested me for some of the gluten antibodies along with my other blood tests (without telling me he was going to test for them). Then when the tests came back negative he announces proudly "you don't have celiac, your antibodies were negative!".....and I had to tell him, "that's because I've been gluten free for a year you moron!!!!"

Because you are self- diagnosed, you will hear that from doctors for the rest of your life. If they don't have an official diagnosis on record, they likely won't treat you as if you have Celiac disease.

1

Share this post


Link to post
Share on other sites

This morning while trying to explain my symptoms; the Dr. cut me off with this gem...

"gluten intolerance only gives you diarrhea....can't be that"

Frustrating.

0

Share this post


Link to post
Share on other sites

Sounds like the so called expert at our local kids hospital, your daughter has constipation not diarrhea so she has reflux not any gluten issue

I was unaware that reflux gave you constipation

0

Share this post


Link to post
Share on other sites

I really thought I had found a gem of a doctor. I am not ready to give up but I left my last appointment pretty mad. He talked about his doctor freind who has celiac and knew so much at my first appointment. Then, at my second appointment he actually said to me "everybody cheats." Um.... sorry, apparently you never met someone who takes having a serious autoimmune disease seriously before now. You would think of all the people that would understand how serious this is, a doctor with celiac would. Apparently not.

0

Share this post


Link to post
Share on other sites

I just had to add to this.

 

A negative biopsy after 6 years gluten free means that you don't have celiac disease.  This is after hearing that they don't count the lymphocytes.  (Which would be all that might be expected on the gluten free diet.)

 

There is no connection between celiac disease and GERD.

 

There is no connection between celiac disease and learning problems with children.

 

This was the GI.

0

Share this post


Link to post
Share on other sites

This morning while trying to explain my symptoms; the Dr. cut me off with this gem...

"gluten intolerance only gives you diarrhea....can't be that"

Frustrating.

 

Yep...been there...heard that until I made it to Celiac specialist -- sad that primaries along with many gastros are still operating off -- three symptoms of celiac disease:  childhood, short stature and the big D --- there are 100 times as many symptoms associated -- educate them with printed info from the University of Chicago.

0

Share this post


Link to post
Share on other sites

educate them with printed info from the University of Chicago.

 

You forgot one of the previous gems -- they don't have the 'time' (read 'interest') to read stuff that patients bring in for them :angry: (especially if it won't help their golf game.)

2

Share this post


Link to post
Share on other sites

You forgot one of the previous gems -- they don't have the 'time' (read 'interest') to read stuff that patients bring in for them :angry: (especially if it won't help their golf game.)

This is one of the many reasons why I LOVE my GI  doc. He asks me " How are you" and actually listens to my answer.

He finishes our meeting with an eager smile and  "well, do you have any articles for me to read and give to my patients?"   :) And, I always do!

I know, he's an enigma .....and I'm keeping him for the rest of my days. (even when I move to another state, I am coming back to see him for my annual checkups. I am not kidding)

0

Share this post


Link to post
Share on other sites

You forgot one of the previous gems -- they don't have the 'time' (read 'interest') to read stuff that patients bring in for them :angry: (especially if it won't help their golf game.)

That's why I print them off ( showing that they are from U of C) and highlight the 2 or 3 sentences that support my issue. I show them to him/ her during a visit.

0

Share this post


Link to post
Share on other sites

So we were at the doctor's office today for my husband to have a checkup. He has diabetes so this is a pretty regular thing we go through. He has had some elevated liver enzymes and they are rechecking that to see if it has changed or not since last fall. I asked if they could do a full celiac panel since they were already drawing blood. The doctor then looked me straight in the eye and said "we would need a valid medical reason to test for that."

 

Really? REALLY?!?!?! You mean aside from the elevated liver enzymes that could be linked to celiac? Or the fact that he has been diagnosed with IBS and frankly I think that is a load of horsecrap? I pointed out that the elevated liver enzymes can be linked to celiac. I also pointed out the IBS and the doctor asked if he has D. (As if that is the only symptom of celiac, I swear to God going into a doctor's office and knowing more about a disease than them in so infuriating I could scream!) My husband explained the alternating C and D and the doctor automatically dismissively said "sounds like classic IBS." Yeah, and you sound like a classic asshat.

 

The doctor is convinced my husband needs to pay out of pocket for an ultrasound of his liver. Because I guess he needs to pay for that in office machine somehow. But a simple blood test, which will be billed out of office by a lab and covered by insurance, could diagnose an underlying disease which if treated would likely fix the whole liver problem. And it isn't exactly a stretch of the imagination since he has diabetes, which is autoimmune and as a doctor he should know they tend to cluster. (I of course am making the leap of logic that he even has a clue that celiac is an autoimmune disease which is a hell of a leap.) Why do I know this and a doctor doesn't? Why.... why.... why......

 

I hate doctors so much.

1

Share this post


Link to post
Share on other sites

Well before I had my thyroid out I was having a pre discussion with the surgeon about the procedure and what to expect. He seemed to bounce around the office like zebedee and proceeded to explain how he just "whips out the thyroid and lobs it into a bucket" ... no wonder I was extra nervous and was right to be so when he woke me up in the middle of surgery to explain how he'd cut a vocal cord! Everytime I think of him, I imagine him not having a steady hand cos of all the jigging about he does :( grrrr, luckily with alot of vocal therapy and praying my voice is finally back, no thanks to him!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,703
    • Total Posts
      921,801
  • Topics

  • Posts

    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,705
    • Most Online
      3,093

    Newest Member
    imissdonuts
    Joined