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Why Do I Have To Educate My Doctors?!

wmramsel

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wmramsel Explorer
wmramsel
Posted

AAAAARRRRRRGGGHHHH!!  *Sigh*  I had to get that out.  Still waiting on the immunofluorescence studies of the suspected DH- I explain to the derm's office that if it comes back positive we don't have to do the scope.....

 

She says, "Well don't you think they need to go ahead and do the scope to see what is going on?"

 

 

NO.  No, I don't.  The scope is diagnostic, it doesn't alter treatment!  I proceed to explain that we aren't trying to "find out what is gong on" if we already know what is going on by the positive DH.  That we aren't trying to determine treatment with the scope- there is NO treatment, just a gluten-free diet.  I am not going to put my daughter through a scope if I.don't.have.to.  And who are you to question my judgement for my daughter on something you have proven to me before you don't know anything about????  If the DH comes back positive, we know what Celiac disease does- we don't need to scope her intestines to "see what is going on."  We already KNOW what is going on.  The blood work for the CBC and Anemia is going to tell us "what is going on."

 

**breathe**

 

Off to google immunofluorescence studies.....

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StephanieL Enthusiast
StephanieL
Posted

It's hard. BTDT.  I was the one who had to push for an Endo to truly examine thyroid issues after 2 years of elevated tTG's after going gluten-free.  Once on thyroid meds, his next tTG's were (finally) normal. 

 

3 GI's wouldn't listen to me about the "little bit off" TSH levels being more than a "little" off since changes have been made to that scale and they little was WAY off. 

 

 

It sticks. I try and remind myself that a good Dr. isn't one who knows everything but one who is willing to LISTEN to you as a parent and consumer to help determine the best options.

 

Hang in there. It's a bumpy road for sure but hopefully you'll have your answers very shortly!

Greebo115 Rookie
Greebo115
Posted

I feel your frustration....bearing in mind I am stiil mind-fogged after a cc issue.....I would like to suggest that you donate your "spare" endo to the person at the derm's office, so that she can "see what's going on"!

wmramsel Explorer
wmramsel
Posted
  • Author

It's hard. BTDT.  I was the one who had to push for an Endo to truly examine thyroid issues after 2 years of elevated tTG's after going gluten-free.  Once on thyroid meds, his next tTG's were (finally) normal. 

 

3 GI's wouldn't listen to me about the "little bit off" TSH levels being more than a "little" off since changes have been made to that scale and they little was WAY off. 

 

 

It sticks. I try and remind myself that a good Dr. isn't one who knows everything but one who is willing to LISTEN to you as a parent and consumer to help determine the best options.

 

Hang in there. It's a bumpy road for sure but hopefully you'll have your answers very shortly!

 

BTDT?

 

I am trying to remember that they have been good about listening to me and then trying to find out the best way to do things.  The comments people make get under my skin right now.  I KNOW that I'm being sensitive to it, which is why I come over here and post it where people will understand what we are trying to do, and why the comments agitate me.  I just LOVE (note the sarcasm) how people think they can second guess/question what I feel is the best course of action for my daughter.  Grrrrrr.....

 

 

 

Hehe, Greebo, I'll suggest that to her next time.....

justa Newbie
justa
Posted

disregard.

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    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

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    • trents
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

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