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We Need To Start A Thread On Stupid Stuff Doctors Say!
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A lady on a different, unrelated forum just told me her nephew was diagnosed with 50% Celiac. :blink:

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This thread is scary or hilarious, or both.

I just emailed my doc about a severe allergic reaction during my recent gluten challenge and also mentioned the constant, chronic diarrhea I've had since June. Another doc was filling in for mine, and today she wrote, "It sounds like you're getting better."

(*pulls hair out with both hands*) !!!!

Then she said to check in again when my regular doc is back in December. Sheeeeeesh!!

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A lady on a different, unrelated forum just told me her nephew was diagnosed with 50% Celiac. :blink:

HAHAHAHAHAHAAAAA!!!!!!

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A lady on a different, unrelated forum just told me her nephew was diagnosed with 50% Celiac. :blink:

Did she say what the other 50% was? IBS maybe??

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

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Wow a quad - high fives all around!

50% made me snort my nettle tea - unfortunately it is more sad than funny.

Here's hoping we find a few more Hawkeyes and TJs rather than Frank Burns out there ;)

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50%. That means the kid can have a sandwich made with one slice of Udi's and one slice of Wonderbread? Or maybe it means the kid only has celiac from the waist down? Celiac on Monday's, Wednesday's, Friday's, and from noon to midnight on Saturday's?

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OK nowwww I get the Frank Burns thing... doh!

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50%. That means the kid can have a sandwich made with one slice of Udi's and one slice of Wonderbread? Or maybe it means the kid only has celiac from the waist down? Celiac on Monday's, Wednesday's, Friday's, and from noon to midnight on Saturday's?

:lol: :lol: Barty made me snort my nettle tea too.

OK nowwww I get the Frank Burns thing... doh!

....and....she's got it!! ;)

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Wow a quad - high fives all around!

50% made me snort my nettle tea - unfortunately it is more sad than funny.

Here's hoping we find a few more Hawkeyes and TJs rather than Frank Burns out there ;)

OK, I was waithing for someone else to chime in, but I guess they didn't notice. GottaSki (and the rest of you) must be suffering from glutenhead right now ;) because she forgot - it's BJ, not TJ.

Sorry, I just had to say it. :lol:

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Nope...Trapper John was on duty before BJ - although I am a touch froggy today ;)

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Oooh! I forgot all about him! I guess I'M the one with glutenhead! :blink::lol:

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Nope...Trapper John was on duty before BJ - although I am a touch froggy today ;)

TrapperJohn is correct....

Oooh! I forgot all about him! I guess I'M the one with glutenhead! :blink::lol:

nope, not at all hon.....BJ was the obvious thought.

and I liked him more that trapper anyway. :lol:

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I can't stand it when a doctor doesn't listen. The doctor-before-last let me ramble on about my problems, and didn't take in a word of it.

Doc "How have you been feeling?"

Me "Well, I have diarrhea every single day, my migraines are getting more frequent, and the anxiety is still crippling. I've tried everything I can think of to help the anxiety, but still get no relief."

Doc "Oh okay" (looks at paperwork) "And how has your anxiety been?"

DOH!!! :angry:

Her solution to my textbook GI symptoms was to lose weight. All my medical problems would be solved by losing just a few pounds. So she prescribed Phentermine, and called it "A Magic Pill". After a single dose I thought my heart would explode, and I couldn't sleep for a week. Who is training these idiots??

THIS - who teaches them to look at the paperwork and not at the patient?

Non-celiac related, but:

"I don't know what's happening, I'm losing weight, I'm 82 lbs, I sleep about 3-4 hours per night, everything I eat gives me diarrhea, especially baked items, I break out in blotches when I eat cheese/butter, and I am constantly jittery."

"Do you exercise?"

"Why, yes, always have. I do ballet classes and walk every day."

"You're very skinny. You have an ED."

:blink:

Note #1: I have a palsied arm because of a birth f***ing trauma, and if I don't exercise I'm basically disabled.

Note #2: my medical history said "autoimmunity in the family, mother's side" and "grandmother in lifelong therapy for thyroid nodules"

Note #3: it is turning out that every family member on my mother's side has some wheat-related problem and GI symptoms, but none has been diagnosed with gluten intolerance?

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Dumb things doctors say-

It was a bone specialist who had me tested for celiac. When it came back positive, he referred me to a GI for an endoscopy. When I told this to my primary care physician - she responded, saying that I have a high anti-body count - that I should just go gluten free and not to bother with the endoscopy. When I explained that the first doctor wanted to see if it is celiac, to know if celiac was contributing to my osteoporosis - she responded " I don't agree. Celiac and osteoporosis have nothing to do with one another"

At that point I had already read enough to know that she was WRONG!!

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Well, I think I have finally have something to add.

So, I saw a GI for the first time on Friday (only 4 years into this thing), mostly because I've been having other issues lately and wanted to make sure it's nothing more serious. (I recently had my first endoscopy/biopsy as well, which was of course negative for celiac, having been gluten-free for 3.5 years, but did show some mild gastritis that I don't know has healed or gotten worse or what)

After a debaucle with my referral, and waiting 2 hours for my appoitment (so much for all the work I was going to do that day), i finally got in and he had my referral letter and all was good.

So, Celiac eh? Actually, he was really nice, and had good textbook knowledge of the disease, but didn't seem to get the fact that I have considered myself Celiac (diagnosis or no) for the past 4 years and have been as strictly gluten-free as possible without becoming a complete anti-socialite. I do not cheat. For me, "accidental getting into something" does not mean giving in and having a piece of pizza. It means eating something I didn't know was ccd

GI (paraphrasing): "Well, the problem is that since you didn't do a biopsy in the first place, there's really no way we can monitor it. Of course, maybe someday you'll be on vacation and not sticking to your diet and eating gluten for a few days, and we could get you straight in to do a biopsy then."

Me (more or less): "Ahh, Doc, that ain't going to happen."

And besides, he should know that you have to be eating a gluteny rich diet for a good month before a reliable test can be taken. And I'd be dead by then.

Aside from that, he didn't seem particualry concerned about the gastritis thing, which I'm pretty sure still hasn't healed up completely.

So, it looks like I'll be GI shopping. Anyone know someone good in Toronto?

Oh well. I got half a hat knit in the waiting room, and he was kinda hot, so I didn't completely loose out...

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Oh well. I got half a hat knit in the waiting room, and he was kinda hot, so I didn't completely loose out...

Peg, dear girl---cheers for seeing the bright side of life!!! ;)

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Doc brought food to a potluck meeting. Set down a bag of pita chips and said "these are gluten-free"...

Never seen gluten free pita chips.

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I've had who knows how many specialists before finding out I had Celiac. After my first doctor tested me for two years for various things he told me (I was 17 or 18) I have done every test in the book and cannot find anything wrong with you. As far as I know it's a mystery why you're so sick. Get out of my office. I don't want to see you again. I can't do anything for you.

He started testing me when I was 16 I think and come to find out there was a load more tests he could have run. He never even checked my gallbladder or for Celiac Disease or for Crohns or Colitis. According to him I was a mystery and there was nothing wrong with me.

I had my gallbladder removed two years later b/c the next doctor I went to decided to do a Hida Scan and tell me my gallbladder is severly damaged and doing no good for my body. My gallbladder with no gallstones was causing my pain. I was still in excrutiating pain after that. I did see that my gallbaldder was damaged.

The doctor I had after that went to touch my stomach but pulled my shirt up over my boobs and started touching where he shouldn't have. Never went back.

The doctor after that didn't test me for celiac, just told me if it makes you sick don't eat it. You probably have celiac disease.

The next doctor, I thought would be better b/c she was a woman. She looked at me and said, "you are under weight, you need to eat." before she weighed me. She spent most of the visit telling me how I needed to eat more. She finally did a test for celiac, I was still eating gluten free. The test came back negative. I had been off of gluten of course it will come back negative. She said, "even though you are 100% gluten free the test would still show that you have traces of gluten or damage to your intestines.

Where do these doctors get their degrees?

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I have 100 stories about stupid things I've been told over last 20 years of being sick but recently I heard something else and so I'll tell you the smartest thing a doctor has ever said. My current Doctor said to me.. I really don't know what is wrong with you, but you do know about permeable gut?. He then said, you have to realise I did all my training in the 60's and none of this existed then and you really need to go and see a specialist that knows more than the average GP.

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I have 100 stories about stupid things I've been told over last 20 years of being sick but recently I heard something else and so I'll tell you the smartest thing a doctor has ever said. My current Doctor said to me.. I really don't know what is wrong with you, but you do know about permeable gut?. He then said, you have to realise I did all my training in the 60's and none of this existed then and you really need to go and see a specialist that knows more than the average GP.

A doc without an ego problem!  lucky for me i was sitting down......

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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 :-(

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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 :-(

 

 

Oh honey, try not to worry too much. If it were me, I'd get him a quick note, email or phone message mentioning in a friendly way that you recall some strange bits of conversation and just want to clarify that you respect him and are grateful for his abilities. You can use the pretext of thanking him for conducting a safe procedure. Then he'll know but you don't have to spend your whole appointment talking about it.

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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".  

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    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
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      1 magnesium pill every day.
      St Johns Wort daily.
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      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
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