Finally Got Into Rheumatology Triage

[nvsmom]

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

[GottaSki]

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.

[mushroom]

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

 

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

[Takala]

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.  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.   

[GottaSki]

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. 

[mushroom]

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 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    I thought this stuff was supposed to keep you from getting crippled    But then, again, what do I know??

[GottaSki]

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

[nvsmom]

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.

[GottaSki]

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.

[GF Lover]

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 

[nvsmom]

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.

[Gemini]

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. 

[GottaSki]

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

[nvsmom]

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.

[kareng]

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!

[Gemini]

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......

[nvsmom]

I was too nervous again.  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.    

 

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.

 

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.   Okay then.   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.   

 

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.  

[GottaSki]

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

[Gemini]

You know...I feel like beating up a doctor for you right now.     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? 

 

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!

[ravenwoodglass]

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.

[powerofpositivethinking]

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   

 

 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    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   

[Deaminated Marcus]

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.

[nvsmom]

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

[nvsmom]

You know...I feel like beating up a doctor for you right now.     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? 

 

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.  

 

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

[nvsmom]

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...

 

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.

 

Thanks for the good wishes.