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Doctors Who Have No Clue


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38 replies to this topic

#31 BabsV

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Posted 30 April 2012 - 04:18 AM

Update...I started on 10mg of amitriptyline on Friday evening last week and so far, no terrible side effects (slept like the dead the first two nights but last night it wasn't so coma-inducing!). Best thing is, it has made a dent in the pain; I even went for a short hike on Saturday afternoon and wasn't completely wrecked at the end!

I saw my usual gastro this morning (she's back in town finally) and she recommends giving it at least 2 weeks to really take effect. She also says due to the location of my pain and the fact that I am responding to the medicine already she thinks we should hold off on any more tests for at least those two weeks (she was pretty dismissive of the other doctor who suggested colon cancer -- he didn't even seem convinced but seemed to think he had to suggest something!) This is fine by me because I am sick of dealing with doctors and labs at this point! She still thinks that a big part of the pain issue is my GI tract is hyper-sensitized at this point and is reacting and sending pain signals when it shouldn't.

All I know is so far the medicine has helped me feel a bit better and I can function at a level closer to 'normal.' YAY! I just have to get through the next 3 months and then I've got the appointment with Dr. Fasano. This might just do it for me. Whew.
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#32 IrishHeart

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Posted 30 April 2012 - 04:28 AM

I am very glad you are getting relief and it has not given you any side effects as yet. It takes 2-4 weeks to reach an optimum level in your body.

That is great news!! :) yaaay!!


If it is just a wonky spasming GI tract, in time, you will not need it. yaaay again! :D

When you do go off it, please, ramp down slowly.
Cold turkey w/d is not a good idea.
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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 

"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


#33 BabsV

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Posted 30 April 2012 - 04:39 AM

If it is just a wonky spasming GI tract, in time, you will not need it. yaaay again! :D

When you do go off it, please, ramp down slowly.
Cold turkey w/d is not a good idea.


Yep, she even mentioned that as my body sorts itself out it would very likely become unnecessary in time.

As for discontinuation syndrome...had that experience when a doctor here in Poland tapered me off an anxiety med (prescribed prior to Celiac diagnosis when they were all telling me it was all "in my head" and there wasn't anything actually wrong with me!) too quickly. That was a miserable month of tremors, insomnia, crankiness, headaches, etc. Never doing it that way again!
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#34 IrishHeart

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Posted 30 April 2012 - 04:45 AM

Yep, she even mentioned that as my body sorts itself out it would very likely become unnecessary in time.

As for discontinuation syndrome...had that experience when a doctor here in Poland tapered me off an anxiety med (prescribed prior to Celiac diagnosis when they were all telling me it was all "in my head" and there wasn't anything actually wrong with me!) too quickly. That was a miserable month of tremors, insomnia, crankiness, headaches, etc. Never doing it that way again!



YUP! Same here!!! coming off the amitryptilline without guidance.
I had it when I stopped Ambien years ago too. And I had only tried it for 5 days!

yes, all of this was just "in our heads" Babs. :rolleyes:

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 

"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


#35 celiac custody battle

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Posted 06 May 2012 - 07:22 AM

My six year old had two positive blood tests, and one negative one... no endoscopy... symptoms come and go... father says I am over reacting, sued for aole medical custody, had two lawyers, doctors on his side, threw a lot of money at it. Now I can not even get her care....
I have had the same symptoms all my life... not eating gluten makes me feel fine...no one believes me... I was accused of taking her to the doctor "more than usual." I can not afford a lawyer... :'(
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#36 mushroom

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Posted 06 May 2012 - 08:09 AM

When you say she has had two positive tests and one negative one, can you explain what tests she had and when, and what the results and ranges were? Just so we know what we are discussing here :)

And by the way, welcome to the forum.

A further suggestion - this would be better discussed if you started a separate thread of your own entitled something like "Child custody battle because of food intolerance issues". It would get separate attention from our posters rather than buried in someone else's thread :)
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#37 IrishHeart

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Posted 06 May 2012 - 08:51 AM

A further suggestion - this would be better discussed if you started a separate thread of your own entitled something like "Child custody battle because of food intolerance issues". It would get separate attention from our posters rather than buried in someone else's thread :)



This is a good idea, Shroomie!!!

Others have been in your shoes, hon and may offer you some good advice.
Sorry :( I can only imagine your frustration and sadness while trying to protect your child.
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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 

"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


#38 MitziG

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Posted 06 May 2012 - 08:55 PM

My daughter has this same type of pain, varies from nagging to severe, upper left side but occasionally affects the right side. We have been at a loss too. She has been gluten-free for a year, and was asymptomatic at the time of dx. Stomach pain came AFTER she went gluten-free. Go figure. So, no answers, but she does get a lot of relief by drinking a teaspoon of Braggs apple cider vinegar in water. Wish I had an answer though! Looking at other food intolerances for her too, but so far, have found nothing that stands out.
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#39 Motherbird7

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Posted 10 May 2012 - 05:23 AM

I am completely new to celiac and gluten free diet (3 months) but shortly after I recovered from my initial adjustment symptoms, I started having pain exactly as you describe. This pain is different from being glutened for me too because I don't get the other symptoms along with it. I finally connected it to rice and quit eating it. I still have rice flour in products I buy because I am overwhelmed enough by all the changes but I don't seem to have the same pain, just when I was eating either white rice or, especially, brown rice. Maybe it IS the brand because it was stuff I had in the house from before celiac diagnosis and the gluten free products I have been buying are safer? I don't know but I someday I might be brave enough to try another brand.

I am sorry you are feeling so badly and I hope you find relief soon.
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