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


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#226 mushroom

 
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Posted 20 February 2013 - 08:13 PM

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:


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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#227 sisterlynr

 
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Posted 21 February 2013 - 06:59 AM

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."    ;) 

 


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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#228 frieze

 
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Posted 21 February 2013 - 08:46 AM

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.


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#229 Just another Celiac

 
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Posted 21 February 2013 - 11:42 AM

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......


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#230 Just another Celiac

 
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Posted 21 February 2013 - 11:48 AM

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!!!!


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#231 Adalaide

 
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Posted 22 March 2013 - 11:54 AM

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? 


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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#232 Adalaide

 
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Posted 25 March 2013 - 12:57 PM

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.


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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#233 maximoo

 
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Posted 25 March 2013 - 07:24 PM

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.


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#234 Adalaide

 
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Posted 25 March 2013 - 09:34 PM

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.


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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#235 IrishHeart

 
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Posted 26 March 2013 - 04:16 AM

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


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#236 Greebo115

 
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Posted 26 March 2013 - 05:20 AM

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.
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Obvious symptoms started as a baby with gastroenteritis....
Self - diagnosed celiac at age 41 - Gluten-free since December 2012, shortly after realised in needed to avoid:
Dairy, soy, all grains, all pseudo-grains, nightshades, legumes, MSG, xantham gum, all sugar alcohols.
Low sugar/refined carbs since Aug '08 due to reactive hypoglycemia.

22/03/13 Mung beans and blackeyebeans reintroduced successfully!

26/06/13 Some symptoms mysteriously returned - found loads of CC in my nuts and dried beans!! (verified by food/symptom journal and emails to companies)

26/11/13 After 2 weeks on crutches (again) realised that legumes cause my joints to inflame - it's undeniable....legumes gone!


#237 surviormom

 
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Posted 12 April 2013 - 04:37 AM

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. ;)


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#238 surviormom

 
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Posted 12 April 2013 - 04:39 AM

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.  


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#239 Maxi

 
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Posted 12 April 2013 - 07:23 AM

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!!!!"

 

 


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#240 kareng

 
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Posted 12 April 2013 - 08:04 AM

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.
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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