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Finally Got Into Rheumatology Triage


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#1 nvsmom

 
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Posted 18 April 2013 - 06:15 PM

I know this is waaaaay off topic from celiac, but I am excited because after waiting seven months, I got squeezed in to see the rheumatology triage because of a last minute cancelation. I have had joint pain, sores and rashes that point to a possible rheumatic disease that I have ignored for too many years after being dismissed by doctors.

There is a chance that celiac was responsible for some of my symptoms, or that my Hashimoto's caused it, but my symptoms also point to lupus or mctd, so it is great to have knowledgable people address my issues. They are even arranging for me to see a GI specialist and are checking my thyroid better than it has ever been (my regular doctor wouldn't do it), and sent me for X-rays and more blood tests after meeting with a doctor, psychologist and physiotherapist for ninety minutes (I see a rheumy in two weeks).

It's just so satisfying to feel "heard" for once and to have that much effort put into my care... I have never had a better doctor appointment in my life. :)

Thanks for letting me gush. Lol
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Nicole Posted Image

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Hypothyroid - August, 2012

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#2 GottaSki

 
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Posted 18 April 2013 - 06:27 PM

Oh my goodness...I am so happy for you!!!

 

My experience with Rhuemy sucked because I had not yet been dx'd celiac and all my inflammation blood was "normal" soooo...of course I heard what I had heard many different versions of many times before from different specialties...but this time that I write of was -- the Chief of Rhuematology at UCSD:

 

"I highly doubt you have anything going on related to an Autoimmune Disorder, but do call again if your symptoms should change." -- chased me out of all doctor's office's for over three years.

 

I am curious to hear more -- and very happy you had a great appointment!!!

 

edited to add:  the experience I had was 9 years ago -- I remain ever hopeful that each specialty will fully understand how celiac can play havoc in the body.


Edited by GottaSki, 18 April 2013 - 06:38 PM.

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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 :)


#3 mushroom

 
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Posted 18 April 2013 - 07:40 PM

Oh Lisa, it's a bit too soon for that :wacko:   Maybe one day, but we will have a lot of education to do B)

 

So glad, nvsmom, that you finally found a listening ear.  May it lead to something fruitful :)


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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#4 Takala

 
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Posted 18 April 2013 - 07:47 PM

I am thankful I was diagnosed back in the early '80's by an osteopath, because when we moved to a different state nearly 2 decades later, I was rather shocked at how people who are not classic rheumatoid or lupus types are treated, so I tried seeing a couple of equally clueless rheumatologists, and gave up.  If you aren't a candidate for the newer ATNF drugs they won't diagnose, or they'll finally admit to it after way too much storm and drama, and then tell you tough luck, take something otc and get lost. That's actually in the guidelines for the one HMO I had, the "treatment" was take otc anti-inflammatories like ibuprofen and not bother them.  I'm lucky I didn't fry my kidneys and liver doing that, but that's how I survived for about 3 decades.   I did a huge amount of research and figured if I could stand the discomfort and avoid the real drugs, I might have better chance of living not quite as messed up as the people who were doing the heavy duty drug therapy, anyway.  State of the art American medical care, 20th - 21st century, slightly better than applying leeches. :blink:  Best treatment I had was the lady PCP who sent me for physical therapy, probably a life saver, so I haven't fused up, but I have to be vigilant.  I continue to be amazed that I am this much more flexible off of gluten, even at this age.   


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#5 GottaSki

 
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Posted 18 April 2013 - 08:11 PM

Thankfully...things are improving -- if only slowly -- my daughter recently made it into a specialized Lupus program at UCSF -- those appts have been very fruitful -- and get this -- they listen to my opinion regarding the possibility of her five AIs having a direct relationship to undx'd celiac disease.  Yep...crazy...yet...true. 


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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 :)


#6 mushroom

 
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Posted 18 April 2013 - 08:21 PM

Yes, I fried my kidneys on prescription diclofenac (they did come back although not all the way), and I do do the 'ATNF stuff, but.... funnily enough :D despite how far gone my hands were (I did my own PT on them) I only need them about one month out of every six now, when my hands start going wonky on me again.  Oh, and I have to fly to the US every year for my Humira because I am not sufficiently crippled to qualify under the NZ guidelines :unsure:   I thought this stuff was supposed to keep you from getting crippled :blink:   But then, again, what do I know?? :rolleyes:


  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#7 GottaSki

 
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Posted 18 April 2013 - 08:52 PM

Hands - wonky.  I've got that one - for over ten years now.


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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 :)


#8 nvsmom

 
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Posted 18 April 2013 - 09:07 PM

I have no real idea where the rheumy will want to go with me. I am glad I am in the door though, just in case this moves beyond pain, rages and fatigue. I don't need much for management of that but I want to be monitored in case this starts to affect organs.

My hands are only partly wonky these last fifteen years or so. They don't look different, well maybe older, but they just don't work sometimes....good excuse for not keeping up on my sewing though. :)

It just really is a treat to be...well, treated and not just hustled out the door with the standard toss away reply of "come back in a few months if it doesn't get better".

Lisa - what AI diseases does your daughter have? Five? Wow, that is a lot for a young person to handle. :(
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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

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#9 GottaSki

 
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Posted 18 April 2013 - 09:36 PM

RA, Lupus, Fibromyalgia, Sjogren's, Celiac Disease -- suspect Connective Tissue as a bonus.  We believe long undx'd celiac played a big part in all.

 

So glad you have docs listening -- work with them - and in some cases teach them -- yep, we can make a difference.


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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 :)


#10 GF Lover

 
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Posted 19 April 2013 - 03:59 AM

I guess I'm one of the lucky ones as far as Rheumatologists go.  He was the one who discovered my celiac.   He consistently monitored my other immune issues for years and never stopped trying to detect small changes in blood work and symptoms to pinpoint my issues.  We did have stumbles along the way but he never gave up on me.

 

I hope you have a good response.

 

Colleen 


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#11 nvsmom

 
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Posted 08 May 2013 - 08:37 AM

Well, I get my actual rheumy appointment tomorrow...

 

I feel like I'm working through a job application process. After 20 years of symptoms and doctors not figuring it out, I finally compiled my old labs and symptoms, connected the dots and 8 months ago Iasked my doctor for a rheumy referral. He agreed and referred me to the rheumatology triage which I got into last month. Those doctors really listened, checked me over well, and requested more tests and Xrays.  Now, tomorrow, I actually get to see the rheumy... I feel like I have been dubbed "worthy" of being in a rheumy's presence.  LOL

 

I am nervous that I'll blow it (I have pretty serious "white coat" anxiety) but I'm also excited... It is wierd to be excited to find out that something is wrong.  I should rephrase that, I know something is still wrong but I'm excited for to possibly get a label and be treated.

 

I know that celiac disease can cause a huge variety of symptoms, as can my Hashi's (which is not ideally treated yet but it's getting closer), but there are some issues that are still cropping up new or haven't got one bit better after being gluten-free for almost a year.  My latest issue is cognitive issues. I have had a sudden explosion of... I don't know what to call it - cognitive farts? I forget words or completely mix them up so sentences make no sense. I forget what I am doing, or drive the wrong way. The other day I went outside and completely forgot why... I still haven't figured it out. It is sort of comical but it has increased noticeably lately - even my hubby has noticed. It's a bit disturbing, especially when you consider that I homeschool my kids!  LOL

 

I just have a gut feeling that it's not celiac or Hashi's related. I would guess it is lupus or UCTD based on my symptoms and history. I hope it's not, but I think it is.

 

Anyway, I just had to type out my nervous energy. Thanks.  :)  And wish me luck tomorrow.


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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

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#12 Gemini

 
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Posted 08 May 2013 - 11:00 AM

Best of luck to you, nvsmom!  I give you tons of credit because I also have white coat anxiety but can you blame us?  Actually, judging from all your posts on this site, I think some of the doctors might have trouble keeping up with YOU!  They are going to be impressed with your knowledge...or feel threatened that you know so much.  Let us know how it goes because I share some of your medical problems so will be interested to hear what they have to say.  :)


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#13 GottaSki

 
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Posted 08 May 2013 - 12:27 PM

Yes...I had a small version of white coat -- my mom has full blown where her bp skyrockets -- mine was more mild and came from decades of dismissive doctors that never ran the correct tests.

 

Celiac can be a factor in all AIs -- I remain hopeful that all of your symptoms will continue to improve with time -- but am hopeful that the Rhuemy clinic will be able to help you as well.

 

Well done getting everything together -- the best antidote for white coat is knowledge and preparation --- you've got both.

 

Hang in there and breath -- in thru the nose and out thru the mouth -- this is my chant to calm my mom and it does help -- us both ;)


  • 0

-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 :)


#14 nvsmom

 
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Posted 08 May 2013 - 01:25 PM

Thanks ladies. I think I am ready, I have old labs copied and a timeline prepared... I shouldn't forget too much.  LOL

 

I agree that the celiac (and possibly hashi's) is a factor and probably bothered my body more. Sometimes I wish I could jump ahead 5 years and see how I'm doing so I know what paths to pursue now.   ;)

 

My bp jumps a bunch too! When I take it when running errands (in drug stores) it is usually 90 something over 60 ish with a pulse below 70. At the Doctors office a few weeks ago it was 120 over 80 something and my pulse was 80 something too!  LOL  And it was a good thing I brought pictures of myself with my (suspiciously malar looking) facial rash because my face was so flushed the entire time (I have some rosacea too) that it couldn't be seen well... I don't know why I get nervous... Ugh, You should see me in job interviews, I'm amazed anyone ever hired me!  LOL

 

I will breath...and report back here. It always helps me cement facts in my head when I can tell others about new information.


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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

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#15 kareng

 
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Posted 08 May 2013 - 02:28 PM

I have worked with doctors and live in a neighborhood with doctors and my kids have friends whose parents are doctors - they are idiots sometimes, just like the rest of us. They forget to put the trash out for trash day, their kids get suspended for drinking, they have kids with perfect ACTs, they coach 1 st grade t ball, they buy Cheetos at the grocery. Hard to be scared of them when I've seen them in a bathing suit at the neighborhood pool!

Sometimes, I get nervous because I want to be sure I remember everything I want to say and that I will think of questions to the doc's answers before I leave. ( not an hour later at home).

Anywayz... The purpose of this post is to tell you not to be too nervous & good luck!
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LTES

 
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