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Doctors Who Have No Clue


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38 replies to this topic

#1 BabsV

 
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Posted 21 April 2012 - 01:59 AM

Soooo, in the last couple of weeks I've been having a lot more pain issues -- which none of my doctors seem to be able to address.

Saw my usual gastro (let's call her gastro #1) and she still thinks functional abdominal pain. Won't even listen to me wondering if it could be another food intolerance since I had pain but not the usual symptoms of being glutened. Wants me on TCAs...which requires a visit to a psychitrist.

Psychiatrist tells me it is all due to stress. Only stress. Nothing else. And wants me to take Lexapro (not TCAs.) Not super keen on drugs that mess with brain chemistry...before my Celiac diagnosis they put me on an anti-anxiety med that was hell to discontinue. I had to taper and still had all sorts of issues (brain zaps, tremors, insomnia, dizziness, etc.) I pointed out to him that I had stress because I was in pain and perhaps if we could ramp the pain down a bit I wouldn't be so stressed. He didn't even acknowledge that statement. Grrrrr.

Had a couple really rough days and ended up back at the doc but gastro #1 is at a conference so I get to see her colleague who is a surgeon (let's call him gastro #2.) He has no knowledge of my history so I have to spend a bunch of time catching him up; as soon as he hears Celiac he decides the pain is from having Celiac and that I'm 'cheating' on my diet. Seriously. He literally did not believe me when I told him that I was not cheating. I waved my recent blood work at him and said if I was cheating why are my numbers down so close to negative (not quite there yet but hopefully in another 3 or 4 months I will be)? Oh, he also says he's a surgeon and since he can't find anything acute wrong with me (i.e. I don't have an inflamed gallbladder) there's nothing he can for me. He actually said that, "There's nothing I can do for you." But he does want me to go to the lab for a blood work for colon cancer (?!?!) even though he said he totally doesn't think that is an issue in this case. I swear he felt he needed to throw out an idea so he picked that one?!?!

Then gastro #2 talked with gastro #1 and they think I need another ultrasound. Which I still haven't scheduled because they've all pissed me off so much.

Hoping to rest this weekend and will attack it all again next week. *sigh*

I know I am not alone in this...I know most of you have had similar dealings with doctors who don't know or don't care or don't listen. Honestly, sometimes I think these people are hindering my recovery!

*rant over* :rolleyes:
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#2 mushroom

 
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Posted 21 April 2012 - 02:15 AM

Doctors - an impediment on the path to wellness, because they have the keys that open some of the gates we need to open and pass through. :rolleyes:
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#3 Bubba's Mom

 
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Posted 21 April 2012 - 02:36 PM

Doctors - an impediment on the path to wellness, because they have the keys that open some of the gates we need to open and pass through. :rolleyes:

Yes! Well said.

What sort of pain are you having? It might just be part of the healing process? Maybe we can figure this out?

Do you still have your gallbladder? If so, have you had a HIDA scan to see if it's working properly? They kept telling me my GB was fine, but when the HIDA scan was done they found it wasn't working right.
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#4 IrishHeart

 
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Posted 21 April 2012 - 03:06 PM

I feel your frustration. I lived it for years. I met my share of idiots who could do nothing to help me, only push drugs. I had bad abdominal pain for so long, my pelvic floor was deeply impacted and my SI joints inflamed, pudendal nerve entrapped, etc.

Of course you are stressed, you HURT! :(

I can offer ((hugs))

and a sonuv(*&^$! on your behalf. <_<


Babs, what does she mean by "functional abdominal pain"??
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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


#5 mamaupupup

 
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Posted 21 April 2012 - 08:30 PM

Hang in there! I have a 5.5 year old who had severe nighttime joint pain for three years--two pediatricians called it growing pains, to which I said, "nope--it's something more." I suggested we test for Celiac and one said, "That Gluten Free Thing is a fad." She spent about half her life in pain because doctors didn't step up. I finally pulled her off gluten and when she improved looked for a doctor to help prove my hypothesis. Turns out I was right and my darling Twin2 has been pain free since going gluten-free.

My question to you is: "What do YOU think it is?" You are probably right! If you don't know, that's ok too...like someone earlier posted, give us a list and let us see if anyone here can shine some light!

Thinking of you! Get good rest!
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#6 IrishHeart

 
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Posted 22 April 2012 - 05:38 AM

Hang in there! I have a 5.5 year old who had severe nighttime joint pain for three years--two pediatricians called it growing pains, to which I said, "nope--it's something more."


:rolleyes:
This was me.

Do you know what my mother told me about my legs aching as a kid/teenager? "It's growing pains".

Do you know her mother told her?
Same thing.

(after my DX, and discussing our life-long symptoms together, my Mom said sadly, "I'm sorry, honey." and I said "Mom, no worries---how could you have known?"

Good for you for making sure your child is not suffering ANY pain!
:)

It's not "growing pains". There's no such thing! It's inflammation that causes pain.
Pain = something is wrong.

It's joint and bone pain from gluten/celiac.

Doctors = Idiots.
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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


#7 Ninja

 
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Posted 22 April 2012 - 06:05 AM

They really don't have a clue! They say they like challenging cases because it gives them something to think about, but then they do stuff like that... and it makes you go :blink: .

I was talking to someone the other day who was telling me about her son (who is now in his 20's) who has Celiac. He was diagnosed when he was 7 I believe. His teachers always blamed his lack of energy on "laziness." So his parents brought him to the doctor who ran a blood test only to discover that his iron levels were nonexistent. The nurse told his mom that he most likely had leukemia. He was rushed to the hospital and found to have Celiac that same day. He's doing great now! :)

Hang in there BabsV *hugs*

~Laura
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#8 BabsV

 
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Posted 23 April 2012 - 12:26 AM

Thanks everyone for the responses. The support and information I find is always invaluable...

To answer some questions:

The pain I have is mostly on on my left side, near my ribs...sometimes it starts under the sternum but usually is lower down than that. It often feels tender to the touch and if it is really bad, it feels inflamed on the inside. It wanders over to my right side sometimes but not always. I think one of the doctors referred to it as "left upper quadrant" pain which makes sense considering the location. OTC painkillers don't touch it when it starts up...nothing makes it better. I just have to gut (hehehe) it out till it subsides a bit. It is like the pain I get when I am glutened BUT when I've had it lately I have absolutely no other symptoms of being glutened (anxiety goes off the charts, insomnia, dizziness, loose stool, etc.)

Gastro #1 told me when she came up with "functional abdominal pain" that it is a pain that they cannot find a solid medical explanation for. Her take is that the nerves in my GI tract have gone haywire, are oversensitive and are sending pain messages to my brain when they shouldn't be doing so. I believe it is also called 'non-ulcer stomach pain' by some. They treat it with very low dose tricyclic antidepressants. No one has been eager to try this route since I have a history of serious side effects to a lot of medicines. Personally, I'm willing to try it to see if it helps with the pain (even for just the next couple of months until I can get back to the States) but the doctors won't prescribe them.

I'm wondering if it is another food intolerance that has cropped up. I was reviewing my food diary and I realized that during the period of the flare up I was eating more brown rice and items made with brown rice. I received a care package with some Lundberg rice cakes and gluten-free Rice Crispies (which I trialled for a couple days but didn't stick with...never really been a Rice Crispies fan)...the brown rice connection didn't hit me until I'd had a relatively good day and after a rice blend for dinner (brown and wild) I felt off the next morning. Had the same leftover rice for lunch and by late afternoon was really unhappy.

I figure stress could be adding to it all as I'm in a foreign country with less than stellar medical care. All the doctors specialize to the nth degree which would be awesome if I could find a Celiac specialist but I just haven't been able to do so. I think it is way too "new" for any doctors here to have really paid attention to it. So I have to drag myself from doctor to doctor and they each want to give me some sort of prescription plus an herbal medicine -- they all look shocked when I tell them I'd prefer to be on as few medicines as possible because sometimes they just seem to be throwing meds at me because they don't know what else to do. Prior to diagnosis the various doctors had me on about 6 different prescription meds which honestly were making me feel even worse...not to mention when I showed them to an American doctor he was shocked that one doctor would prescribe two meds that both caused blood pressure issues (no wonder I was dizzy and had to be careful when I stood up!)

Plus, I do not trust food quality here. Ingredients labeling is hit or miss or nonexistent. I've actually seen imported items from the UK that say "suitable for Coeliacs" but the Polish label says "may contain gluten"?!?!? I have been made sick from meat (most is injected with fillers, additive, broths, etc.) here so many times I am reduced to eating fish (frozen, from EU, marked for allergens) and some canned tuna and chicken ordered from the States. At least I can eat beans! I try to stick to as natural as possible plus I've found a few items at TESCO that I can tolerate. Thank God for TESCO and their allergy labels!

I still have my gallbladder. They've talked about a HIDA scan but are having trouble finding a place that can do one. Seriously. I swear the healthcare here is worse than 3rd world at times (I've lived in 3rd world countries and had better care!)

On a positive note there are many health issues that have resolved since I went gluten free -- brain fog is gone, dizziness is gone, I have a lot more energy, nails and hair are growing and strong, my skin no longer looks like paper, I've started to gain some weight (I was skeletal by the time of diagnosis), I'm not nearly so cranky, etc. Plus my 6 month blood tests show a big drop in antibodies...I am close to negative/normal although not quite there yet. Now if the pain issue could just be addressed...I'm confident it will eventually be resolved but sometimes I feel that being in Poland is really hampering my recovery. Very frustrating.

Thanks for listening to my rant.
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#9 IrishHeart

 
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Posted 23 April 2012 - 05:03 AM

Since the pain is in your left side, it is not probably your gall bladder.I had continuing abdominal pain in my abdomen for at least 9 months after DX. I could not, for the life of me, figure out why. The GI did a barium GI study and it revealed nothing.
He said "give it time. Stay off gluten and dairy."

I did and it's gone. But a lot of muscle, tissues, tendons and nerves are involved in the pelvic floor and our abdominals. Strain, stress, inflammation can cause pain that is not detectable on MRIs or Xrays. It can refer pain to the ribs and sternum (mine felt like I had been run over by a car--repeatedly :blink: )

If you think brown rice may be the culprit, you should of course, take that food out for awhile. Since it is sporadic, that seems to be something you can trace.

Your first GI's opinion makes the most sense to me. Pain is generated by bundles of nerves and the GI tract has been inflamed for so long and is trying to calm down.

I am sorry you are in so much pain, especially away from home, and I hope it resolves for you quickly. The fact that your are having so much symptom resolution (yaaay!) shows you are healing and that is wonderful news!

May I offer one last thought? It could be occasional trace gluten getting in you --since you mention the labeling issues? Not enough to hamper test results or your recovery overall, but enough to maybe spark this one annoying/painful symptom from time to time?

I do not get the whole myriad of symptoms like I used to when glutened. I get plenty, :rolleyes: but not all of them and other members report a quicker recovery with fewer symptoms if they are CCed. So maybe you are having the GI pain, but nothing else.?

Just a suggestion. Best wishes.
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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


#10 Bubba's Mom

 
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Posted 23 April 2012 - 05:26 AM

If the pain were from your GB it would be URQ, same with liver or pancreas, not ULQ. That's good! :D
It may just be the intestine having a sluggish spell now and then, as it heals, or maybe the rice IS something to look at? Some people just don't handle any grains well at first.
I've gotten pain in that same area and it generally just resolves on it's own..with no other symptoms. It's perfectly normal to get these odd pains now and then as everything is "rebooting". It may be that it's hard for you to digest the brown rice, so it sits there a bit? Take it away for a few days and retry it, but with a digestive enzyme? If you don't have enzymes, try eating it with pineapple or papaya.

It really could be "functional abdominal pain"? :blink: I know that sounds like a BS DX..but it really could be the case?
The healing process is an amazing miracle..with all sorts of quirks!
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#11 pricklypear1971

 
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Posted 23 April 2012 - 06:00 AM

I'm sorry you're going through this. I don't really have anything else to say.... I hope you get relief soon. I know it's terrible to be in pain without understanding why.
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#12 BabsV

 
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Posted 23 April 2012 - 06:17 AM

May I offer one last thought? It could be occasional trace gluten getting in you --since you mention the labeling issues? Not enough to hamper test results or your recovery overall, but enough to maybe spark this one annoying/painful symptom from time to time?


Yep, I've thought of this. Gluten is everywhere in this country...seriously EVERYWHERE. I've been glutened by plain white rice...could not figure out why I was feeling so cruddy until I realized that it was a different brand of rice and the same company sells a lot of barley (another staple in the Polish diet!) and barley products. I figure it was cross-contamination at some point in processing. Switched back to the old brand and the problem went away.

I honestly felt better after 5 days in Italy and we were eating out twice a day there. The food quality was just so much better there.

Thanks for your input. I just get soooo worn down from the pain and it gets really old. On a happy note I've got confirmation of my appointment with Dr. Fasano at the University of MD Celiac Center on 31 July -- that was his first available but is perfect timing for me! I'm just going to start a countdown to that date to keep my sanity...
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#13 Bubba's Mom

 
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Posted 23 April 2012 - 06:23 AM

Yep, I've thought of this. Gluten is everywhere in this country...seriously EVERYWHERE. I've been glutened by plain white rice...could not figure out why I was feeling so cruddy until I realized that it was a different brand of rice and the same company sells a lot of barley (another staple in the Polish diet!) and barley products. I figure it was cross-contamination at some point in processing. Switched back to the old brand and the problem went away.

I honestly felt better after 5 days in Italy and we were eating out twice a day there. The food quality was just so much better there.

Thanks for your input. I just get soooo worn down from the pain and it gets really old. On a happy note I've got confirmation of my appointment with Dr. Fasano at the University of MD Celiac Center on 31 July -- that was his first available but is perfect timing for me! I'm just going to start a countdown to that date to keep my sanity...

Congrats on the appointment! He's the best. :D
I'm counting down to my visit with Dr. Murray from Mayo Clinic. I go Apr. 30 for the week.
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#14 BabsV

 
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Posted 23 April 2012 - 06:27 AM

If the pain were from your GB it would be URQ, same with liver or pancreas, not ULQ. That's good! :D
It may just be the intestine having a sluggish spell now and then, as it heals, or maybe the rice IS something to look at? Some people just don't handle any grains well at first.
I've gotten pain in that same area and it generally just resolves on it's own..with no other symptoms. It's perfectly normal to get these odd pains now and then as everything is "rebooting". It may be that it's hard for you to digest the brown rice, so it sits there a bit? Take it away for a few days and retry it, but with a digestive enzyme? If you don't have enzymes, try eating it with pineapple or papaya.

It really could be "functional abdominal pain"? :blink: I know that sounds like a BS DX..but it really could be the case?
The healing process is an amazing miracle..with all sorts of quirks!


The issue is the pain is ever-present, it just worsens at times. Very frustrating. I'm totally willing to go with the functional pain idea if anyone would actually be willing to treat it...they all want to take a wait and see approach before they give me TCAs. I think they hope it will either go away OR I will! :rolleyes:
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#15 BabsV

 
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Posted 23 April 2012 - 06:28 AM

I'm counting down to my visit with Dr. Murray from Mayo Clinic. I go Apr. 30 for the week.


Oh, I hope that goes well! Post and let everyone know about your experience.
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