Best And Worst Drs Opinions/advice

[Meemsy]

I have seen so many people here who have struggled to get a diagnosis, and I find myself thinking back to all the ridiculous things I have been told by various doctors over the years. Just wondering what the best advice/opinion you recieved from you doctor, and what was the absolute, most God awful thing you have heard?

The best advice I got was just after I got diagnosed. The doctor told me I need to think about gluten as though I have a peanut allergy. He said the effects of ingesting the gluten are not as immediate or dramatic as it would be were it a peanut allergy, but the long term effects are just as deadly. After hearing that, I have not once had the urge to cheat!

The worst thing I was told (and I can laugh about this now, but at the time? Not so funny) came after my fourth or fifth visit to the doctor several years ago. I was rapidly losing weight, I had such bad D that I was practically housebound, I was fatigued, I was having episodes where my feet and hands were going numb on me, my blood pressure was ridiculously low, a whole laundry list of symptoms. I was 29 at the time. I was begging the doctor for a referral to any one in any department who might be able to help me. Her response was that the only referral I was getting was to a psychiatrist because it was obviously all in my head...that I was just too young to be having all the symptoms I was complaining of!

Your turn!!!

[Cherry Tart]

Amazing - the clueless doctors all read from the same handbook! I have been sick my whole life and the unknowing doctors always attributed my problems to stress. As a child, my parents were told that I was "an anxious child putting to much pressure on herself." As an adult, I was told that my job, commute, and relationships were putting a strain on my health....really?

My doctors were grabbing at straws. And now, all I can do is laugh at the absurdity of their futile attempts. I was put on the BRAT diet (bananas, rice, applesauce, TOAST) because my GI tract was out of balance due to stress. Now I know, the diet didn't work because my body couldn't tolerate the toast! I was given countless medications for that mystery rash (DH) that just wouldn't go away. I was told to drink red wine and to take yoga....Oh ya, and don't worry so much. The best one was when I was put on traquilizers to help me "relax." Boy did I relax! The medication along w/ my constant companion, Brain Fog, made for some interesting commutes to/from work.

Needless to say, I think they would be stressed out too if they had the myriad of symptoms we have, all the while, being told that they were conjuring it all up! Sorry, I think I'm done w/ my rant.

Unfortunately, I'm still waiting to get some good advice from a knowledgable doctor....

[Calle]

I have YET to meet a good GI! I have fired every one I have gone too. The first one had me get my gallbladder removed at the age of 21, which it didn't need to come out. So now I live with not having a gallbladder the rest of my life, which causes problems. Here's a good one for you.....my last GI suggested I change the type of BUTTER I was eating. He didn't even know what digestive enzymes were.

I have struggled for over 20 years with digestive problems, but never giving up to find an answer. I did it on my own by researching and knowing that I was not crazy. The only good thing about all of this is that I turned to natural medicine which has helped me along the way more than any prescription drug ever did! I turned to the Enterolab to get my diagnosis on gluten intolerance. I was finished with all the invasive tests they had put me through in the past. I have had two endoscopies and not once did they look for Celiac by doing a biopsy because you know Celiac Disease is rare. I lost my faith in doctors a long time ago!

Calle

[chatycady]

Do you like your job?

How is your marriage?

Are you depressed?

Do you have teenagers?

I was anemic at age 19; anemic through 3 pregnancies, really really bad. Then I finally was diagnosed, with a hemoglobin count of 7 (transfusion time) with pernicious anemia. Then a month later I was iron anemic again, then an enlarged heart and low blood sugar, and low blood pressure.

And still no diagnosis. After the last specialist didn't even take time to read my file, I quit Dr's. went to the local grocery store Hy-Vee which has a gluten free food list and a nutritionist on staff who was extremely helpful and I am on my way to recovery.

[Adelle]

Smartest thing a doc ever said to me was, "well, you know your body better than I ever could" needless to say, I KEPT that one!!

Worst thing was "at 17 (18, 19, 20, 21) what could you have to be so stressed about?" 1st they assumed it was stress, then they assume that all of my symptoms (weight gain, narcolepsy, numbness/pain in my feet, breathing problems, brain fog) couldn't POSSIBLY cause stress!!!

[Adelle]

Smartest thing a doc ever said to me was, "well, you know your body better than I ever could" needless to say, I KEPT that one!!

Worst thing was "at 17 (18, 19, 20, 21) what could you have to be so stressed about?" 1st they assumed it was stress, then they assume that all of my symptoms (weight gain, narcolepsy, numbness/pain in my feet, breathing problems, brain fog) couldn't POSSIBLY cause stress!!!

[little d]

My family doc is great I told him that I think that I night have celiac disease and he said to be honest I have not a clue as to what that is and this last time that I went to him he looked at the record sent over by my GI and said I still don't know what I could do for you and I told him that the diet helps and then he said well if the diet helps continue and you know your body better than anyone else so keep on going with you diet. He is the only doctor that I still go to except for my Ortho doc for my foot which I don't have to anymore because my foot is better, well kinda of anyway.

donna

[Di-gfree]

Hi, I'm new here! The best advice my doctor ever gave me was about 15 years ago when he told me that my bloodtests kept indicating that I had low iron, and since I 'never felt good', I should get tested for Celiac. Eventhough I suspected this even before then, I resisted for several years (can you say denial? I didn't *want* to have Celiac - lol!), but finally got tested when my body started to basically fall apart, and I couldn't even get out of bed any longer. (It's amazing how much you will tolerate in the name of denial.)

Anyway, over 12 years ago, I was diagnosed through endoscopic biopsy with celiac disease - and I do thank my family doctor for actually recognizing the symptoms! Unfortunately, the same family doctor told me years later that I could eat a little bit of gluten here and there, and it wouldn't hurt me! Of course, I corrected him on this right away. But, I think I know more about celiac than he does, at this point - and, sadly, I guess this is the norm for most of us with celiac disease, though?

[sneezydiva]

I've been told a lot of stupid things by doctors but my "favorite" and the one that makes me angriest is a pediatrician who when I was 12 and complained of headaches and stomach aches, especially in the afternoon during and after school asked me to stand on the floor and he held his hand up and told me to touch it. Then he held it higher, and higher until I had to jump up and touch it, and then he said "See, she isn't sick, this is psychological, it's all in her head." I held back the tears, but my mom could tell I was ready to cry, and she wasn't at all impressed with that test. She always requested someone else in the practice after that!

Although I have been cared for by many kind doctors too, sadly I can not think of any wonderful advice. Even the ones who believe me are at a loss to help me.

[gfgypsyqueen]

My favorite stupid doctor comments:

"Babies can't get Celiacs before age 3!" So I explained celiacs to him and never went back.

"Can she eat beef? Yes, then she can't have a dairy allergy. Milk and beef both protein from cow, therefore if she can have one without a reaction she can't have a dairy allergy." Too dumfounded for words on that one. And he is a well respected GI. BTW a Dairy allergy is different than a beef allergy. You can be allergic to one or the other or both!

"You have Celiacs? Yes. How do you know? From the positive biopsy and now the reactions to gluten accidents!" And in sheer disbelief and amazement they ask "And...you can eat like that? Yes. How do you eat?" I feel like telling the dr I just stuff the food through a new hole in my belly button! Idiot! And you are supposed to care for my kids???

Pharmacists: "Medications can't contain gluten!" I found a new pharmacy.

Positive Doctor comments:

These are few and far between. I had one dr who was excited that I was a new patient and I had Celiacs. Like he had heard about this disease and now he has a real live patient with this. Yippie. He asked smart questions about celiacs and always double checked before prescribing meds. Every visit we had a brief chat about Celiacs, new gluten-free foods he had seen, good restaurants, overall health and lifestyle related to celiacs. Plus he always asked if I was having any problems managing the celiacs or any new issues that were celiac related. Great caring understanding doctors should not be this hard to find!

[irish daveyboy]

Hi all,

Here are some bad experiences that I've cut and pasted from the Irish Coeliac Site.

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These would be funny if they weren't sooo true !!!

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1.

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My Mum (diagnosed at 86, only a month ago) was given gluten-free bread that needs toasting, when in the hospital.

Tastes gross unless toasted.

Only problem: the hospital has no seperate toasters for gluten-free bread.

So her introduction to gluten-free bread was really bad.

Worse than that,she was repeatedly offered non-gluten-free bread, sausages, croquette potatoes etc, even though there were signs everywhere on her bed, chart, and in the 'kitchen' to say she was coeliac.

AND, to cap it all,the registrar said that she probably has 'mild' coeliac disease, since she made it to 86 undiagnosed. That's more to do with bad medicine than anything else!

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She's been on B12 injections for 30-40 years, has osteoporosis, bad anaemia, and so on, all of which should have suggested celiac disease. Was never investigated.

A truly great medical system? I think not.

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I'm not coeliac, but my boyfriend is.

Just before Christmas, he was in a nasty car crash and had to stay in hospital for a while.

He was brought in semi-conscious, and by the time I got in, he was doped up on morphine,

so I had to go to give his medical details to the nurses.

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I told them that he was coeliac, and did they need me to bring anything in for him.

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They said no, they could provide stuff for him. Went away happy.

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Next day, arrived in to see him again, he'd been given regular cornflakes and normal toast for breakfast, so he had no brekkie.

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Ok, I thought, it's a busy hospital, I'll just mention it again.

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Went to the nurses, told them that he was coeliac (deja vu), and they said that they knew that.

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I said that he'd been given an unsuitable breakfast, so one nurse went to get the person in charge of food.

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Told her that he was coeliac, and her reply was:

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"yeah, I know, he can't have salt, isn't that what coeliacs are,

we've a nice chicken breast here for his lunch, he'll be grand"

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Shocked ...I ended up bringing in his meals to him...Grr!

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Hmmmmmmm. I didn't think that my Mum's experience was the only bad one.

I spoke to a coeliac yesterday who said that her GP tested her for EVERYTHING under the Sun,

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and when the patient suggested he check in case she might be coeliac,

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the doctor said that she couldn't be a coeliac because:

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(wait for it)

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"YOU DON'T LOOK LIKE A COELIAC"

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So, we've a new test for celiac disease: a mirror.

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If you look like a coeliac, you must BE a coeliac.

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Imagine, a double blind study on the use of doctor's eyes to diagnose celiac disease!

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Come to think about it, the fact that most coeliacs are diagnosed in middle years, after years of ill-health, is probably more to do with bad medical practice than anything else.

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[rsm]

I have had this condition for 26 years, I'm now 49, no doctor figured it out. My grown daughter diagnosed our problem and we are both doing much better gluten free. I have been told many, many times it's stress, been put on tranquilizers, told to eat wheat bran, drink wine, take a hot bath and try to relax. I've had my gall bladder removed, been on b-12 for over a decade, been tested for ms and just generally run through a maze by 6 or 7 doctors and have not found one yet who knows anything about this. I told my current doctor I was gluten free and thought I was a celiac, he said he was impressed, didn't see much of that anymore, it's not in vogue right now. Anyway, he thought the diet was a good idea. I have learned more here than anywhere else. After 4 months gluten free I'm starting to feel like a normal person again.

[chrissy]

i had an endoscopy done in october. i told the surgeon that 3 of my children had celiac disease and wondered if he would do biopsies to check for celiac. ( i mean, as long as you are already down there....) he told me that he usually only did that if someone had active celiac disease. i keep wondering how he would know if i had active celiac disease UNLESS he did a biopsy.

i took the lab report with me to the girls' ped gi to have him interpret it for me. after looking it over, he said, "how come he didn't biopsy the duodenum?"

[JNBunnie1]

My GI doctors actually did a small intestine biopsy and it came back negative, so they didn't explore it any further, I figured it out on my own. But the smartest thing I ever heard from a doctor (my GP) was "You feel better? Good! Dont ever eat wheat again!"

[sfm]

I have seen so many people here who have struggled to get a diagnosis, and I find myself thinking back to all the ridiculous things I have been told by various doctors over the years. Just wondering what the best advice/opinion you recieved from you doctor, and what was the absolute, most God awful thing you have heard?

The best advice I got was just after I got diagnosed. The doctor told me I need to think about gluten as though I have a peanut allergy. He said the effects of ingesting the gluten are not as immediate or dramatic as it would be were it a peanut allergy, but the long term effects are just as deadly. After hearing that, I have not once had the urge to cheat!

The worst thing I was told (and I can laugh about this now, but at the time? Not so funny) came after my fourth or fifth visit to the doctor several years ago. I was rapidly losing weight, I had such bad D that I was practically housebound, I was fatigued, I was having episodes where my feet and hands were going numb on me, my blood pressure was ridiculously low, a whole laundry list of symptoms. I was 29 at the time. I was begging the doctor for a referral to any one in any department who might be able to help me. Her response was that the only referral I was getting was to a psychiatrist because it was obviously all in my head...that I was just too young to be having all the symptoms I was complaining of!

Your turn!!!

I saw a G.I. for my symptoms in 2005 - even mentioned that I usually felt sick after eating, and thought I might be reacting to certain foods. He did an upper endoscopy but no small bowel biopsy, told me I had reflux and gave me prilosec. When I asked him if the reflux accounted for the episodes of vomiting, diarrhea, etc., he looked at me like I had two heads. P.S. - I was already on prilosec.

I went gluten free on my own in November 2006, then saw a D.O. after my dietary response was so obvious. He blood tested me for celiac, which came back negative (because I was already gluten free, probably), but said, Just because you tested negative for celiac does not mean you aren't intolerant to gluten. I decided to stick with the D.O. -but found a new G.I. who is much more with it.

I went to a D.O., who I asked to send me for blood tests for celiac (I was gluten free about 3 months).

[Gonbad]

One of my best friends is a G.I. Unfortunately not local to me anymore. I told him I had a positive blood test and he refered me to the head of his old practice. That Dr. has been mostly great. His stepdaughter is Celiac and apparently very sensitive so his advice is some what slanted by that experience. He feels that nothing should be chanced but that it is also impossible to keep gluten completely out of your diet here in the U.S. unless you prepare all of your own food. He and I don't see eye-to-eye sometimes as I eat oats and he says I shouldn't etc.... but overall a good experience.

I was fairly knowledgable about Celiac before I was diagnosed and it was that knowledge that led me to diagnose myself and ask my family practitioner for the tests.

[JennyC]

My best experience is from my son's current pediatrician. She was not his doctor at the time and had only seen him twice, but when she reviewed his charts, listened to his symptoms and examined him he referred us for celiac testing! I never went back to his old doctor, who offered no help whatsoever regarding his symptoms. When I asked him about my son's distended malnourished-looking belly he said some kids are just like that. And to stop his diarrhea he told me to stop giving him so much juice, even though I had just told him that I give him 1-2 servings a day. Sorry for rambling, I'm just so grateful for his new pediatrician, I feel like she saved his life.

Well the worst comment, other than demanding the gluten challenge, was also by my son's wonderful pediatrician. My son was sick with a horrible stomach bug and she was giving me advice on his diet. She told me to feed him bland food, then she said "well, he eats like that all the time." I was mildly offended. I told her that my son eats everything that he ate before and much more, but gluten free!