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Finally Got Into Rheumatology Triage


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35 replies to this topic

#16 Gemini

 
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Posted 09 May 2013 - 07:54 AM

Ohhhhhhhh...the blood pressure problem.  MY PCP and I butt heads last time over an issue that she puts too much emphasis on and, of course, she then took my BP.  It was 160/100.

When I take my BP at home, in the morning, it's always 115-120/60-70.  It's harder to maintain good BP at times, once you are post-menopausal.  The only time I have a BP problem is when I have a doctors appointment but now that kareng has graciously made it possible for me to think of my doctor in a bathing suit, I will carry that image into my next appointment and hope I don't laugh at her when we start talking...... ;)


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#17 nvsmom

 
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Posted 09 May 2013 - 01:55 PM

I was too nervous again.  :wacko: I swear I turn back into a little kid when I go to the doctor. I feel like I am being talked at, like I have no clue about my health issues, and not trusted.  Sigh.

 

It was a 15 minute appointment of "Your labs are fine. Your Xray is fine. You don't have RA." Yah, I knew all of that.

 

She said it probably is some genetic "autoimmune thing" going on. Because my labs are all negative, that means that what ever it is is not technically getting worse (even though my arthralgias have felt progressively worse, more frequent, and longer lasting over the years). My past positive ANA's (I brought in old labs to show) apparently don't apply.

 

She said she thinks it could be celiac disease causing my problems, although she can't be sure I have celiac because I didn't have the "gold standard" biopsy but my off the chart tTG IgA and EMA mean I "probably" have it.  And my symptoms will most likely improve as time goes on and I "become comfortable" with the gluten-free diet.  :blink:  

 

I was telling her the diet is no problem. I got it. I mentioned how I get tired going up stairs some day and need to catch my breath at the top. How working in the yard in the sun has my hands sore and a 5 day sore throat triggered (again) even though I'm not sick.... I stopped talking at that point and just started nodding at her because it was obvious that she just came to tell me that there is nothing they will do for me. Sigh. She said she would know what to diagnose me with. I just kept nodding as she talked about stress and needing an exercise program. I am really not stressed - I am busy but I'm not stressed (ok, well at the moment I am LOL). As for exercise, I know I need to exercise more but it's tough to get it going when some weeks it hurts to just get dressed... not an excuse for the good weeks but... I just kept nodding and tried not to get teary-eyed out of frustration. :unsure:

 

To be honest, I was expecting them to say that I appear to possibly have UCTD or mild lupus. I have a fair bit of the diagnostic criteria: I have a malar rash, I get mouth ulcers, I've had positive ANA's twice in the past, I have arthralgias following flu-like feelings that last months along with a constant low level of stiffness and pain, I have ITP, and possibly hemolytic anemia that my splenectomy might be keeping under control... Those are all pretty consistant symptoms when it comes to those disorders. As well as fatigue. flu-like symptoms, periodic hair loss, costchondritis....

 

I am disappointed, not shocked but just bummed that there is nothing they will do for me. She told me to go to the doctor when I get a flare of symptoms so someone can see it (and document it I guess). I did that 15 years ago when they said the same thing back then, "Come back if the symptoms persist". 

 

And apparently I don't have hashimoto's. My TPO Ab isn't abnormal so I just have hypothyroidism for no apparent reason.  :unsure: Okay then.  :huh: She had no answer for why I was hypo when I asked, and she gave me a look that I interpretted to mean "What does it matter?"

 

I'm just having a pity party here. I'll cut it out soon. Just having my moment. :unsure:  

 

So my plan now (since I have no other options - LOL) is:

  1. Continue on the gluten-free diet and wait for my arthralgias, rash, fatigue, flu-ish symptoms, thin hair, and the rest to improve.
  2. Get my thyroid treatment to where I want it. I'm almost at a full replacement T4 dose for my size now so I expect my symptoms and labs will cooperate soon.
  3. Work on my patience while I wait for everything to improve hopefully within the next few years. Ugh.
  4. Pester my doctor like a serious hypochondriac every time I have that symmetrical joint pain.

Thanks for the support guys. I appreciated it.  :)


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#18 GottaSki

 
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Posted 09 May 2013 - 02:58 PM

Oh my Goodness -- this was my exact appointment about 8 years ago with UCSD's Chief of Rheumy and the reason I never went back or to any doctor for a couple years..

 

We did have a very good appointment at the UCSF's Lupus clinic with my daughter -- but she has been diagnosed for 17 years before she got in there.

 

Hang tough Nicole -- you will keep improving -- my thyroid numbers were a mess several times -- but never threw antibodies -- ummm barley threw celiac antibodies at age 43 -- you may be on this same path -- for which I am sad BUT (yes big butt there) it does get better...it took me four years but I am better than i have been my entire life -- still have crappy days and sometimes just crappy hours but sooooooooooo much better. 

 

Here is hoping you keep healing and a bit more quickly than I am :)


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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 :)


#19 Gemini

 
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Posted 09 May 2013 - 02:59 PM

You know...I feel like beating up a doctor for you right now.  :o   I have had so many of those appointments myself, when I was trying to find out why my stomach hurt so bad after eating and why I couldn't get above 105 pounds, all the while eating like a teenage quarterback.  That was the reason my BP skyrocketed the last time because my first visit with my new PCP went so well, I was excited.  She is a good doctor and thinks outside the box but when I have important issues I wish to discuss about my present health problems, I don't need to be side tracked with lectures about stupid screening tests I really don't need right now.  She let me down on the second visit but I will give her another chance.

 

It is so hard when the labs do not match symptoms because if the labs don't come back with anything positive, they have no clue what to do and then they turn off to your needs.  I am so sorry it turned out like this and can understand your reaction.  Been there, done that.  Sometimes you just have to nod your head so you can remain in control and not burst into tears.  They ought to take that gold standard and shove it. How dare a doctor doubt Celiac when blood work is sky high?  I did not have a biopsy either, because I was too sick at the time but I failed all the tests by HUGE numbers.  I have to say no one doubts me because I am small and fit the description of a classic Celiac, not to mention all those other AI problems I have.  What other disease makes people jump through so many hoops for a diagnosis?  :angry:

 

How long have you been gluten-free?  I know it took me 3 years to completely rid myself of all symptoms and pain so maybe you haven't given it enough time?  Although, if someone presents with a malar rash, what other disease causes that?

None, that I know of.  I do know others who have lupus symptoms but no diagnosis because blood work was negative.  My niece has lupus and I should ask how she was diagnosed.  She is young.....mid 20's. 

 

I think YOUR plan of action is a good one and you certainly know your stuff when it comes to thyroid and celiac......even though the doctors do not.  It is so very hard to realize that it may take such a long time to see improvement...we all know what that feels like.  You need a cupcake.  Go do something you enjoy or eat something you really like.  Wine is good too.  ;)  If it makes any difference, the doctors in America do the same thing so we all feel your disappointment and pain.  This is why I have consistently refused to go see a rheumy to "monitor" my 4 AI conditions.  This is all I hear from people about them. 

 

Tomorrow is another day!


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#20 ravenwoodglass

 
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Posted 09 May 2013 - 03:24 PM

Gee sounds like you saw the same Rheumy I did. :(

Sorry that she could not be more helpful. For me cutting out soy in addition to the gluten made a big difference. Don't know if that would be the case for you or if you already have.

Healing can take a long time but I hope you are feeling better soon.


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#21 powerofpositivethinking

 
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Posted 09 May 2013 - 03:44 PM

sending you positive thoughts right now!  I'm sorry your appointment did not go as planned, but I like how Gemini thinks, "Tomorrow is another day!"  

 

I tend to revert back to being a little kid in a doctors office too and feeling inferior, but with the past few appointment I've gotten better.  Something that is really helping me is writing out all of my questions, concerns and observations.  I totally suggest doing that if you don't already  :) So far I've done that with my ob/gyn, GI and dentist.  They've all been really receptive to it.  I've had a few weird reactions at the dentist's office with materials, and the latest one was yesterday.  When he asked what was going on, I brought out my list, and he was really happy I wrote everything down.  He thinks I reacted to the adhesive holding on my temporary crown.  I tend to get flustered easily, and writing things down helps me hold it together and give all the facts.  Well most of the time.  I get overly emotional when I don't feel well, and I have cried twice in a doctor's office...not my finest moments  :P 

 

 Something else is the obligatory blood pressure check at the beginning of appointments.  My bp tends to be really high at the doctor's office.  In fact my ob/gyn made me come back for a 3 month recheck, but I had bought my own home blood pressure machine, and it's always normal at home, so we concluded it's white coat syndrome  :P  then they usually make a joke about why don't I like doctors, and it leads me into this story.  One time in high school my ear began hurting, and I went to my GP.  He made me feel stupid for coming in after it had only been hurting a few days, but because my sister is one of those people that had lots of ear infections and has tubes in her ears, I don't take ear pain lightly.  I think he was just having a bad day because every other time I've seen him, I've gone to him since I was two, he's been so helpful.  That one time he made me feel so stupid, and I still remember how he made me feel.  That appointment is what led to me now dragging my feet every time I think I should go to the doctor.  I've never been a person to run to the doctors for a sniffle, but sometimes I wait too long and am in such pain, I'm crying.  Gotta find that happy medium  :) 

 

When I tell current nurses/doctors of my one bad experience, I don't go into the details above, they have been more receptive and understanding.  In turn, I feel much more comfortable sharing my symptoms with them.  I've been able to have better conversations with my doctors instead of it being so one sided.  

 

I really think having everything written down is the best thing I've done.  It shows them I'm prepared and trying to find a solution.  

 

As upsetting as today was, don't let today get you down because you're better than that  :) 

 

I think of this quote often,

 

 

“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

-Maya Angelou

 

I think doctors should read it before going in to see every new patient  :) 


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#22 Deaminated Marcus

 
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Posted 09 May 2013 - 04:18 PM

I'm sorry to hear about your bad experience with the Rheumatologist.

 

I saw a gastro enterologist last week and he dismissed any links with pain and Celiac.

He said I don't have the Celiac profile.

 

My kind PCP wants to send me to a rheumatologist  but I was hoping to be scoped at both ends

in case I have intestinal inflammation as an explanation for my pain.

 

The specialists are so focus on the one organ that they don't see how it connects.

 

Your positive EMA says you have Celiac.

You should read more about the positive ANA.

 

Eat well and good luck.


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#23 nvsmom

 
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Posted 09 May 2013 - 06:47 PM

Oh my Goodness -- this was my exact appointment about 8 years ago with UCSD's Chief of Rheumy and the reason I never went back or to any doctor for a couple years..
 
We did have a very good appointment at the UCSF's Lupus clinic with my daughter -- but she has been diagnosed for 17 years before she got in there.
 
Hang tough Nicole -- you will keep improving -- my thyroid numbers were a mess several times -- but never threw antibodies -- ummm barley threw celiac antibodies at age 43 -- you may be on this same path -- for which I am sad BUT (yes big butt there) it does get better...it took me four years but I am better than i have been my entire life -- still have crappy days and sometimes just crappy hours but sooooooooooo much better. 
 
Here is hoping you keep healing and a bit more quickly than I am :)


Thanks a bunch, Lisa. :) I have been keeping your story in my mind knowing that there was a good chance my rheumy visit would lead no where. I will keep plugging along and hopefully I will get to "healthy" sooner rather than later.

It's that whole "patience" concept that I was hoping not to bother with. LOL
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Nicole Posted Image

"Acceptance is the key to happiness."

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

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#24 nvsmom

 
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Posted 09 May 2013 - 07:57 PM

You know...I feel like beating up a doctor for you right now.  :o   I have had so many of those appointments myself, when I was trying to find out why my stomach hurt so bad after eating and why I couldn't get above 105 pounds, all the while eating like a teenage quarterback.  That was the reason my BP skyrocketed the last time because my first visit with my new PCP went so well, I was excited.  She is a good doctor and thinks outside the box but when I have important issues I wish to discuss about my present health problems, I don't need to be side tracked with lectures about stupid screening tests I really don't need right now.  She let me down on the second visit but I will give her another chance.

 

It is so hard when the labs do not match symptoms because if the labs don't come back with anything positive, they have no clue what to do and then they turn off to your needs.  I am so sorry it turned out like this and can understand your reaction.  Been there, done that.  Sometimes you just have to nod your head so you can remain in control and not burst into tears.  They ought to take that gold standard and shove it. How dare a doctor doubt Celiac when blood work is sky high?  I did not have a biopsy either, because I was too sick at the time but I failed all the tests by HUGE numbers.  I have to say no one doubts me because I am small and fit the description of a classic Celiac, not to mention all those other AI problems I have.  What other disease makes people jump through so many hoops for a diagnosis?  :angry:

 

How long have you been gluten-free?  I know it took me 3 years to completely rid myself of all symptoms and pain so maybe you haven't given it enough time?  Although, if someone presents with a malar rash, what other disease causes that?

None, that I know of.  I do know others who have lupus symptoms but no diagnosis because blood work was negative.  My niece has lupus and I should ask how she was diagnosed.  She is young.....mid 20's. 

 

I think YOUR plan of action is a good one and you certainly know your stuff when it comes to thyroid and celiac......even though the doctors do not.  It is so very hard to realize that it may take such a long time to see improvement...we all know what that feels like.  You need a cupcake.  Go do something you enjoy or eat something you really like.  Wine is good too.  ;)  If it makes any difference, the doctors in America do the same thing so we all feel your disappointment and pain.  This is why I have consistently refused to go see a rheumy to "monitor" my 4 AI conditions.  This is all I hear from people about them. 

 

Tomorrow is another day!

 

LOL You made me laugh, I DO need a cupcake.  ;)

 

I am pretty fed up with the system. The only time a doctor has done anything for me in the past 20 years is when I have diagnosed myself, I tell the doctor what is wrong, the labs get run or the prescription is written and that's that. This time, the doctor doesn't think it matches up, and unfortunately with our system I can't request another rheumy. That was the end of the road. I can try and restart the rheumy referral process... OH! Maybe I should see a GI specialist and tell him what the rheumy said and maybe get in that way. LOL  Oh wait, I forgot the referral time to see a GI specialist is about a year too.   :rolleyes:

 

I have only been gluten-free for a year this June, so not very long at all. I probably do need to give it more time. My thyroid meds still need tweaking too so maybe that along with time is all it will take. Now, if someone could just guarantee me improved health in the long run, I would be happy to give it more time.  LOL ;)


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Nicole Posted Image

"Acceptance is the key to happiness."

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

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#25 nvsmom

 
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Posted 09 May 2013 - 08:01 PM

Gee sounds like you saw the same Rheumy I did. :(

Sorry that she could not be more helpful. For me cutting out soy in addition to the gluten made a big difference. Don't know if that would be the case for you or if you already have.

Healing can take a long time but I hope you are feeling better soon.

Maybe they went to school together... B)

 

I am discovering new sensitivities to foods, I'm trying to pinpoint what it is in my protein powder, which I add to all of my boys' baking that causes me issues now... A year ago, I really thought this celiac thing was going to be simpler. :rolleyes:

 

Thanks for the good wishes.  :)


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Nicole Posted Image

"Acceptance is the key to happiness."

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

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#26 nvsmom

 
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Posted 09 May 2013 - 08:14 PM

sending you positive thoughts right now!  I'm sorry your appointment did not go as planned, but I like how Gemini thinks, "Tomorrow is another day!"  

 

I tend to revert back to being a little kid in a doctors office too and feeling inferior, but with the past few appointment I've gotten better.  Something that is really helping me is writing out all of my questions, concerns and observations.  I totally suggest doing that if you don't already  :) So far I've done that with my ob/gyn, GI and dentist.  They've all been really receptive to it.  I've had a few weird reactions at the dentist's office with materials, and the latest one was yesterday.  When he asked what was going on, I brought out my list, and he was really happy I wrote everything down.  He thinks I reacted to the adhesive holding on my temporary crown.  I tend to get flustered easily, and writing things down helps me hold it together and give all the facts.  Well most of the time.  I get overly emotional when I don't feel well, and I have cried twice in a doctor's office...not my finest moments  :P 

 

 Something else is the obligatory blood pressure check at the beginning of appointments.  My bp tends to be really high at the doctor's office.  In fact my ob/gyn made me come back for a 3 month recheck, but I had bought my own home blood pressure machine, and it's always normal at home, so we concluded it's white coat syndrome  :P  then they usually make a joke about why don't I like doctors, and it leads me into this story.  One time in high school my ear began hurting, and I went to my GP.  He made me feel stupid for coming in after it had only been hurting a few days, but because my sister is one of those people that had lots of ear infections and has tubes in her ears, I don't take ear pain lightly.  I think he was just having a bad day because every other time I've seen him, I've gone to him since I was two, he's been so helpful.  That one time he made me feel so stupid, and I still remember how he made me feel.  That appointment is what led to me now dragging my feet every time I think I should go to the doctor.  I've never been a person to run to the doctors for a sniffle, but sometimes I wait too long and am in such pain, I'm crying.  Gotta find that happy medium  :) 

 

When I tell current nurses/doctors of my one bad experience, I don't go into the details above, they have been more receptive and understanding.  In turn, I feel much more comfortable sharing my symptoms with them.  I've been able to have better conversations with my doctors instead of it being so one sided.  

 

I really think having everything written down is the best thing I've done.  It shows them I'm prepared and trying to find a solution.  

 

As upsetting as today was, don't let today get you down because you're better than that  :) 

 

I think of this quote often,

 

 

“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

-Maya Angelou

 

I think doctors should read it before going in to see every new patient  :) 

Thanks for the positive thoughts.  :)

 

I actually did have all of my symptoms with dates, labs and treatments typed up on a two page time line, along with photocopied pages of old labs (ANA's, coombs test, blood counts, celiac and thyroid) for her. Unfortunately, she refused take or look at my time line, although she did look at the old labs... I think she is a "live and die by the labs" sort of doctor (based on my 15 minute first impression).  :rolleyes: 

 

When I saw the rheumy triage group weeks earlier, I also had all my history written in notes, and the said I gave a good history, I just didn't have it all typed up as it was a last minute cancellation that I got in on.

 

I don't know why I get flustered. I haven't had a negative experience like yours, just lots of the non-helpful variety. I think it maybe comes from having to go and ask for help - putting yourself in someone else's hands... I HATE doing that. I'm not good at asking for help so going to a doctor s putting myself out there in a way I am not comfortable doing. KWIM? I come from stoic German and Ukrainian stock.  LOL  B)


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Nicole Posted Image

"Acceptance is the key to happiness."

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

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#27 nvsmom

 
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Posted 09 May 2013 - 08:20 PM

I'm sorry to hear about your bad experience with the Rheumatologist.

 

I saw a gastro enterologist last week and he dismissed any links with pain and Celiac.

He said I don't have the Celiac profile.

 

My kind PCP wants to send me to a rheumatologist  but I was hoping to be scoped at both ends

in case I have intestinal inflammation as an explanation for my pain.

 

The specialists are so focus on the one organ that they don't see how it connects.

 

Your positive EMA says you have Celiac.

You should read more about the positive ANA.

 

Eat well and good luck.

Thanks Marcus.  :)

I agree, I am a celiac and have been for my entire life. I have absolutely no doubt about it, and I don't plan on ever doing a gluten challenge so I can be scoped for that "gold standard" proof.

 

I know that my ANA could have been caused by ITP. I was going to say it could be caused by my Hashimoto's too but apparently according to her, I don't have that now, so I guess hashimoto's could NOT have caused my positive ANA.   :lol:  :P LOL

 

Good luck with your scopes.


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Nicole Posted Image

"Acceptance is the key to happiness."

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

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#28 powerofpositivethinking

 
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Posted 10 May 2013 - 02:34 AM

i'm glad you had everything written down  :)  I agree about giving someone else the control...it's hard <_<  I respect doctors and all the training they've gone through, but you are the only person that knows your own body, no matter what those labs say!  

 

Hope today is better!!

 

Thanks for the positive thoughts.   :)

 

I actually did have all of my symptoms with dates, labs and treatments typed up on a two page time line, along with photocopied pages of old labs (ANA's, coombs test, blood counts, celiac and thyroid) for her. Unfortunately, she refused take or look at my time line, although she did look at the old labs... I think she is a "live and die by the labs" sort of doctor (based on my 15 minute first impression).  :rolleyes:

 

When I saw the rheumy triage group weeks earlier, I also had all my history written in notes, and the said I gave a good history, I just didn't have it all typed up as it was a last minute cancellation that I got in on.

 

I don't know why I get flustered. I haven't had a negative experience like yours, just lots of the non-helpful variety. I think it maybe comes from having to go and ask for help - putting yourself in someone else's hands... I HATE doing that. I'm not good at asking for help so going to a doctor s putting myself out there in a way I am not comfortable doing. KWIM? I come from stoic German and Ukrainian stock.  LOL  B)


  • 0

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#29 GottaSki

 
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Posted 10 May 2013 - 05:36 AM

It's that whole "patience" concept that I was hoping not to bother with. LOL

 

 

I often joke that I was being taught patience -- it's not funny at all, but it was either laugh or cry -- now my parents ask how did I become so patient -- I tell them I didn't have a choice. 

 

Keep smiling...makes folks wonder what you have been up to ;)


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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 :)


#30 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

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Posted 10 May 2013 - 05:48 AM

A year ago, I really thought this celiac thing was going to be simpler. :rolleyes:

 

 

Us too....I was so happy at diagnosis when we finally had a name for what was going on with me and that all I had to do was remove gluten to become healthy!!!!  :lol: 

 

Just realized the smilys on this forum are perfect for describing the emotional roller coaster of the celiac that takes longer to heal:

 

:rolleyes: :rolleyes: :rolleyes:  :o :o :o  :huh: :blink: :blink: :wacko: :unsure: :angry: :wacko: :angry:


  • 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 :)





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