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My Doctor Doesn't Know Anything About Celiac Disease...do I Even Have It?/

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42 replies to this topic

#31 GFinDC

 
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Posted 13 June 2014 - 12:23 PM

Yeah...my doctor had never heard of other AI'S being associated with celiac including thyroid. When he called me after talking with a GI he admitted that the GI had confirmed what I said. He told me he learned something from me. Should I ask for my money back? Should he pay me? Lol

 

I don't think your doctor is unusual in being out of the loop on celiac disease.  I doubt he will pay you back but, can't hurt to ask right?  :)  You can find lists of related conditions by searching on "celiac disease related condition" or "celiac disease associated" condition".

 

Celiac disease was considered a rare condition until the last few years.  So lots of doctors are not up to speed on it.


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

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#32 HavaneseMom

 
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Posted 13 June 2014 - 02:00 PM

I think he should definitely pay you for the lesson. At least give you your co-pay back :). Just kidding, we know that's not going to happen.

After I saw your posts about getting your kids tested, I remembered something my GI doctor told me right after he gave me my diagnosis.

He told me that all of my first degree relatives should be tested now, and if they come back negative at this time, they should all be tested again every 2 years going forward. I think it will be easy breezy to get your kids test approved. Your GI doctor may even be able to set it up for you.

Good luck!


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Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#33 icelandgirl

 
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Posted 13 June 2014 - 05:43 PM

I think he should definitely pay you for the lesson. At least give you your co-pay back :). Just kidding, we know that's not going to happen.
After I saw your posts about getting your kids tested, I remembered something my GI doctor told me right after he gave me my diagnosis.
He told me that all of my first degree relatives should be tested now, and if they come back negative at this time, they should all be tested again every 2 years going forward. I think it will be easy breezy to get your kids test approved. Your GI doctor may even be able to set it up for you.
Good luck!

I'm definitely going to ask the GI. Out of curiosity...how old are your kids and did they test positive?
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August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#34 HavaneseMom

 
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Posted 13 June 2014 - 07:56 PM

I'm definitely going to ask the GI. Out of curiosity...how old are your kids and did they test positive?

Hi Icelandgirl,
I just realized I should have put more thought in to my user name. I just have the two Havanese (that's the name of their breed) dog fur kids you see in my profile picture. I don't have any kids otherwise. Sorry for the confusion!
But as far as testing goes, my mom and my sister have both been tested and their results came back negative. My dad and two other siblings choose not to be tested. I do have a friend at work who's dad has Celiac and three out of the six children in their family have it. I think that is much higher odds than usual in their case. I just did a quick search and read on the University of Chicago site that the rate in first degree relatives for Celiac is 1 in 22.
Here's the link if you are interested:
http://www.uchospita.../uch_007937.pdf
  • 0
Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#35 icelandgirl

 
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Posted 13 June 2014 - 08:17 PM

Hi Icelandgirl,
I just realized I should have put more thought in to my user name. I just have the two Havanese (that's the name of their breed) dog fur kids you see in my profile picture. I don't have any kids otherwise. Sorry for the confusion!
But as far as testing goes, my mom and my sister have both been tested and their results came back negative. My dad and two other siblings choose not to be tested. I do have a friend at work who's dad has Celiac and three out of the six children in their family have it. I think that is much higher odds than usual in their case. I just did a quick search and read on the University of Chicago site that the rate in first degree relatives for Celiac is 1 in 22.
Here's the link if you are interested:http://www.uchospita.../uch_007937.pdf

Sorry to assume...your kids are cuties!
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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#36 nvsmom

 
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Posted 13 June 2014 - 08:23 PM

It can be a good idea to test the TSH, free T3 and T4 for thyroid issues too. My TPO Ab never tested as abnormal so they won't call it Hashi's, but my thyroid barely works anymore.... Lazy thyroid?  Idon't know.  LOL

 

Congrats on your successful  doctor training.  ;)


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#37 HavaneseMom

 
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Posted 13 June 2014 - 08:26 PM

Sorry to assume...your kids are cuties!


Thanks! :-)
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Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#38 icelandgirl

 
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Posted 13 June 2014 - 08:34 PM

It can be a good idea to test the TSH, free T3 and T4 for thyroid issues too. My TPO Ab never tested as abnormal so they won't call it Hashi's, but my thyroid barely works anymore.... Lazy thyroid?  Idon't know.  LOL
 
Congrats on your successful  doctor training.  ;)

Why, thank you! I wish I had told him more of what I've learned but when he told me I needed to stop reading all this stuff I just gave up. Sad...he's been my doctor for 16 years. Hopefully the next time he gets someone in there with celiac he will do things differently.
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January 2014-Celiac
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"You never know how strong you are, until being strong is your only choice."
Bob Marley

#39 IrishHeart

 
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Posted 14 June 2014 - 04:47 AM

Why, thank you! I wish I had told him more of what I've learned but when he told me I needed to stop reading all this stuff I just gave up. Sad...he's been my doctor for 16 years. Hopefully the next time he gets someone in there with celiac he will do things differently.

 

If it makes you feel any better, my PCP doctor symptom-treated me for 12 years. When I was deathly ill, he kept trying to help me, sending me to all kinds of specialists. I dropped 90 lbs, lost my hair, cognitive function, developed painful neuropathy & ataxia, anemia and a few dozen other symptoms until finally, I was the one who  figured out that I had celiac. 

 

The story is long, but the point is: when he realized that is what I had, he went pale and was fumbling around and finally said, "I have 3 children with celiac. I just did not know how it manifests in adults."

 

If I had the strength, I may have gotten off the exam table and strangled him to death. Instead, I found a good celiac GI doctor to take over my care.

 

Another celiac told me her husband refused to see the failure to thrive in their son--and he was a leading pediatric gastroenterologsit. Tunrs put both she and the kid had celiac and the husband thought she was just being too worrisome. Yeah, they are divorced.

 

Doctors make mistakes. Doctors did not study celiac in med school. At least your doctor admitted he was not aware enough.

 

Time for you to see a GI with some celiac-savvy. 

 

Be your own best advocate. Get the genetic testing done. It's worth it for bolstering your diagnosis and skipping the biopsy.

I had a biopsy well after the fact because I was too weak and ill at diagnosis. It showed some intestinal scarring and patchy minor villi damage and inflammation--but nothing to worry about.  I was healing and my doctor and I were afraid I had refractory sprue, so we took that as a good sign !

The kicker is: I had negative blood work. I was told I could not possibly have celiac and I was left to suffer for another year .I knew in my heart this thing was the culprit. .So, you see sometimes, there is no "set protocol".

 

P.S. I agree with everything Gemini and Gottaski said, so I will not not say it all over again, I will just say "ditto". 


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#40 computerHack

 
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Posted 14 June 2014 - 05:53 AM

You definitely have to be your own champion. I've always had a gluten allergy for which I had to self diagnose.  Once i eliminated wheat/gluten i was fine. Average time to diagnose is about 10 years. That is 10 years of suffering with no answer.  Oddly enough I ended up being cured of my gluten allergy. I've always had a gluten allergy since I was a child in Jamaica. Living in the US now since high school.  Last year I traveled to El Salvador for vacation and somehow picked up a parasite; probably from being bitten by mosquito or tick (babeciosis). After taking 2 doses of the parasite medication the gluten allergy seems to have disappeared.  And this was a gluten allergy that ranged from being unable to focus/concentrate, unable to absorb vitamins, rashes, etc.  Only being 100% gluten free helped me to be functional. Now, it seems like it may have been triggered by something else since the parasite medication made a huge difference. Oh, and it took about 6 months and 2 doctors to find a parasite in my system, even after losing 30 pounds because I kept getting neuropathy when I ate anything. Definitely be your own champion and always get second or third opinion. 


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#41 icelandgirl

 
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Posted 14 June 2014 - 07:26 AM

If it makes you feel any better, my PCP doctor symptom-treated me for 12 years. When I was deathly ill, he kept trying to help me, sending me to all kinds of specialists. I dropped 90 lbs, lost my hair, cognitive function, developed painful neuropathy & ataxia, anemia and a few dozen other symptoms until finally, I was the one who  figured out that I had celiac. 

 

The story is long, but the point is: when he realized that is what I had, he went pale and was fumbling around and finally said, "I have 3 children with celiac. I just did not know how it manifests in adults."

 

If I had the strength, I may have gotten off the exam table and strangled him to death. Instead, I found a good celiac GI doctor to take over my care.

 

Another celiac told me her husband refused to see the failure to thrive in their son--and he was a leading pediatric gastroenterologsit. Tunrs put both she and the kid had celiac and the husband thought she was just being too worrisome. Yeah, they are divorced.

 

Doctors make mistakes. Doctors did not study celiac in med school. At least your doctor admitted he was not aware enough.

 

Time for you to see a GI with some celiac-savvy. 

 

Be your own best advocate. Get the genetic testing done. It's worth it for bolstering your diagnosis and skipping the biopsy.

I had a biopsy well after the fact because I was too weak and ill at diagnosis. It showed some intestinal scarring and patchy minor villi damage and inflammation--but nothing to worry about.  I was healing and my doctor and I were afraid I had refractory sprue, so we took that as a good sign !

The kicker is: I had negative blood work. I was told I could not possibly have celiac and I was left to suffer for another year .I knew in my heart this thing was the culprit. .So, you see sometimes, there is no "set protocol".

 

P.S. I agree with everything Gemini and Gottaski said, so I will not not say it all over again, I will just say "ditto". 

Thanks Irish.  When I went through all of the stuff years ago that led to brain surgery I thought I had learned to be my own advocate...but in this situation I completely forgot it.  I have to do that.  Doctors do not know everything and the only person that knows what's going on with me is me.  

 

When I read what others have been through, it makes me cry.  It's so sad that so many people suffer for so long before getting the correct diagnosis.  When I look at my own life and all of the stuff that's happened it's crazy.

 

I'm going forward...fighting for myself.  Thanks again!


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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#42 icelandgirl

 
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Posted 18 June 2014 - 11:57 AM

Hey all...just a little update...

 

I went to see the GI doc yesterday...he was very nice and very helpful.  :)   I told him my story and ended with so I want to talk to someone who knows something about celiac disease.  He looked at me totally seriously and said, "What's celiac disease?"  And then laughed.   :)  

 

Anyway, it was really nice to talk to him.  He did know lots of stuff.  He said that of course my PCP should have referred me after my bloodwork came back positive and ideally he'd like me to eat gluten for a few weeks and get scoped.  I told him what happens when I get glutened and I wouldn't do that he understood.  He did also mention that I could get scoped anyway to see what kind of damage there was although after 5 months gluten free we couldn't be sure what we would see.  I told him that I've had several surgeries and I really don't want to have to go under again if I don't have to.  So, he asked me if the results of a biopsy would change anything that I'm doing.  And I said no...so there was my answer.  My PCP screwed up...I may never know exactly how bad things were inside.  But I feel better than I did...a lot better.  And I'm not going back.

 

He then had me tested for all of the deficiencies talked about on here, b12, d, etc.  And he knew all of them!  Woo hoo!  He said normally he would refer someone to a nutritionist but he could tell from talking to me that I already knew what I needed to know.  

 

Anyway...I think that's it.  I feel better just having talked to him.

 


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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#43 GottaSki

 
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Posted 18 June 2014 - 12:23 PM

Hey all...just a little update...
 
I went to see the GI doc yesterday...he was very nice and very helpful.  :)   I told him my story and ended with so I want to talk to someone who knows something about celiac disease.  He looked at me totally seriously and said, "What's celiac disease?"  And then laughed.   :)  
 
Anyway, it was really nice to talk to him.  He did know lots of stuff.  He said that of course my PCP should have referred me after my bloodwork came back positive and ideally he'd like me to eat gluten for a few weeks and get scoped.  I told him what happens when I get glutened and I wouldn't do that he understood.  He did also mention that I could get scoped anyway to see what kind of damage there was although after 5 months gluten free we couldn't be sure what we would see.  I told him that I've had several surgeries and I really don't want to have to go under again if I don't have to.  So, he asked me if the results of a biopsy would change anything that I'm doing.  And I said no...so there was my answer.  My PCP screwed up...I may never know exactly how bad things were inside.  But I feel better than I did...a lot better.  And I'm not going back.
 
He then had me tested for all of the deficiencies talked about on here, b12, d, etc.  And he knew all of them!  Woo hoo!  He said normally he would refer someone to a nutritionist but he could tell from talking to me that I already knew what I needed to know.  
 
Anyway...I think that's it.  I feel better just having talked to him.


That is excellent news. Thanks for the update :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)






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