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CottenCandyDream

I feel as though doctors don't take my Celiac seriously

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Whenever I tell a doctor I have Cealic I feel brushed off like they think I'm some internet nut who googled her symptoms. About a month ago I told the doctors I had Cealic and she offered me crackers. I had a biopsy around 5 years ago, went through years of puking, wasn't able to eat real food for nearly a year as my stomach heal then I have "doctors" not taking me seriously when I tell them. I recently went to an allergist person I asked her could she check some of my vitamin levels as my previous post someone posted that cealic's are low on vitamins sometimes and she kind of threw it under the rug and was like  yes for people who have been cealic for years. I dont know how many times I told her I've been gluten free for years, I feel like I'm not being heard and this happens with multiple doctors, when this virus ends I'm going to try to find someone who will listen and check my vitamin levels.

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I have a letter from my diagnosing GI and all my lab records.  I give copies to every new doctor I have met since my diagnosis.  This has worked well for me.  Hard to argue with a lab result.  

I have also shared the standard follow-up care recommendations for celiac disease with my PCP who has in turn, been good about ordering the necessary tests.  It sounds like you need to find a supportive doctor.  I hope you find one soon.  In the meantime, try to follow the gluten free diet diet and focus on eating real foods and avoiding processed foods as much as possible.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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I get that a lot.  I don't really even discuss it much anymore.  my gp loses my records every time they switch computer systems, lolz, I could tell her I have leprosy and they would put it in my records.  then lose them next year ?  I go to my g.i. to keep up one prescription, he takes blood, tells me to eat activia ?  check.

my gp does full blood workup once or twice a year.  last year my cholesterol/triglycerides and liver enzymes were all high.  did a couple small diet changes, this year everything's pretty normal.  I need to go see her to get my blood pressure meds.  otherwise, she shows me pictures of her baby (cute!) and she doesn't try to push medication on me to control my 'ibs', like my old gp <who didn't 'think' I had celiac for 20 years.....  the guy before him, also clueless.  good luck, but I would keep all copies of all tests for the naysayer docs that are out there.  remember, you know your body.  I hope you find a doc who speaks celiac :) 


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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I know it's extremely frustrating, but if you keep looking you should be able to find a doctor who will take your Celiac seriously. I've had many doctors ignore my symptoms as being caused by celiac when I was trying to get a diagnosis. I've learned you really have to advocate for yourself because some doctors just don't want to believe us for some crazy reason. 

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I too am over the lack of compassion with physicians not listening.  I know there are great ones out there but apparently those aren't educated in rare diseases like DH.  I have another urological condition called VUR that is typically outgrown by the time you are 12 y.o.  I, however, did not outgrow it.  The only doctors I can find that treat it are pediatric urologists and they won't see me because I am over 18.  I went to an adult urologist and he laughed at me when I told him I thought I still had it.  I kept asking for the test and he finally agreed.  He was shocked to find out that it was positive.  When I asked what the next course of treatment was he told me that he didn't know because only pediatric urologists deal with it.  I almost made an appointment with one for my child just to get in the door to talk to one about it but figured that wouldn't have been met positively.  So I just add it to my list of conditions that no doctors will/can help me with.  What makes it even more frustrating is that my insurance premiums continue to rise despite the fact that I can't get any medical help.

Hang in there!

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