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Just A Little Bit Angry

ravenwoodglass

By ravenwoodglass
in Coping with Celiac Disease

Recommended Posts

ravenwoodglass Mentor
ravenwoodglass
Posted

Okay I know we always tell people to get copies of all lab reports from your doctors and read them. I wish I had. I just found one of mine and am so mad I could spit nails, as my Mom used to say. Almost a year before I was finally diagnosed, a year filled with so much pain my DD told me the family would understand if I committed suicide, my then doctor did a celiac panel on me. I had always been told my celiac tests came back negative and they were done repeatedly by different doctors. Well I came across the lab report today during a futile search for my Social Security card. My anti-gliadin IGA was positive. I guess I am not a sero-negative celiac after all. Just one with stupid doctors. The only thing I can figure is since the IGG was negative he didn't think the positive IGA was significant. Or he was so busy writing scripts for me for drugs that did no good at all that he didn't read the report.

Well I won't let this bring me down. I finally found a job and start tomorrow and I am not going to let this find ruin my happy day.

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shadowicewolf Proficient
shadowicewolf
Posted

Same happened to me with the genetic test. It was played down.

Oh well :/

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Great to hear you have a new job, I truly wish you a fantastic 1st day tomorrow.

I'm sure you will get your head round this other stuff in time. Sure we'll be here for you.

Very good luck, yeay you. Love to know how the job goes, be sure to let us in on it

Mw x

kareng Grand Master
kareng
Posted

Yeah! I hope you like your new job!

ignoring the not happy stuff so you don't dwell on it and ruin your first day

bigbird16 Apprentice
bigbird16
Posted

Congrats on your new job!!

mushroom Proficient
mushroom
Posted

My goodness, what a revelation after all these years :o As you say, sure reinforces what we preach to newbies.

Fabulous news about your job - best of luck to you. :)

Lisa Mentor
Lisa
Posted

As frustrating as it may feel K, you must have a sense of comfort and affirmation. :)

AND great news about your new job. What will you be doing?

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cahill Collaborator
cahill
Posted

Okay I know we always tell people to get copies of all lab reports from your doctors and read them. I wish I had. I just found one of mine and am so mad I could spit nails, as my Mom used to say. Almost a year before I was finally diagnosed, a year filled with so much pain my DD told me the family would understand if I committed suicide, my then doctor did a celiac panel on me. I had always been told my celiac tests came back negative and they were done repeatedly by different doctors. Well I came across the lab report today during a futile search for my Social Security card. My anti-gliadin IGA was positive. I guess I am not a sero-negative celiac after all. Just one with stupid doctors. The only thing I can figure is since the IGG was negative he didn't think the positive IGA was significant. Or he was so busy writing scripts for me for drugs that did no good at all that he didn't read the report.

Well I won't let this bring me down. I finally found a job and start tomorrow and I am not going to let this find ruin my happy day.

I have tried to reply to this post and honestly I am having difficulty doing so. So many thoughts and feelings running ramped inside my head and heart.I dont know where to start.

Just know that I understand and know I am sending (( HUGS)) your way .

Good luck with the new job,,, I hope it is something you will love doing :)

ravenwoodglass Mentor
ravenwoodglass
Posted
  • Author

Thanks for the well wishes everyone. I will be working at a home improvement store. It is a family owned business that has been around since the 60's. I have shopped there for 20 years and some of the folks working there have been there since the place opened. It's a good company to work for although the starting wage is low. They do have plenty of opportunity to increase your wages though with in store classes and such. I have been working as a volunteer at a food bank/thrift store for a couple years now and loved the place and the people and am sad to leave but my budget demands paid employment. It will be nice to be able to keep my heat above 59 to 60 degrees this winter LOL.

Although I had a definate diagnosis it is nice to see something in lab work that actually supported it. I am however glad I didn't find this just a couple of years after diagnosis since I would have been much more emotional then and might even have considered sueing. I know I would have regretted that though as it wouldn't have changed anything in the amount of time it took to heal or the pain I and my family endured. In 5 days it will be my 10 year anniversary of diagnosis. Hard to believe how fast the time has gone by. I'll have to celebrate with a cheesecake and maybe PF Changs.

love2travel Mentor
love2travel
Posted

Oh, wow. That is quite the story. I'm so happy for this new opportunity. Who knows? It could be THE job you've been looking for. Tell us all about it, ok? Have a wonderful first day, and next day, and next day... :)

cahill Collaborator
cahill
Posted

Although I had a definate diagnosis it is nice to see something in lab work that actually supported it. I am however glad I didn't find this just a couple of years after diagnosis since I would have been much more emotional then and might even have considered sueing. I know I would have regretted that though as it wouldn't have changed anything in the amount of time it took to heal or the pain I and my family endured. In 5 days it will be my 10 year anniversary of diagnosis. Hard to believe how fast the time has gone by. I'll have to celebrate with a cheesecake and maybe PF Changs.

This may be why your story hit a nerve for me . I am only 18 months into my " official " diagnosis ( even though I have been gluten free for 3 years)

The pain and suffering is still quite fresh in my mind ( and body). I am still too close to the pain and suffering not to be emotional. And the anger, the anger of going 40+ years mis and un dignosised still lingers,,, and some days like today it is quite intense

GottaSki Mentor
GottaSki
Posted

Yay! New job - that deserves a nice dinner out - double celebration for your 10 year Silly Yak Birthday - you deserve an extra slice of that cheesecake :)

I know how angry you are. Ten years ago my Primary doc's nurse told me over the phone all my tests results for a multitude of annual tests were "normal" - I asked her to double check as I had prior "abnormal" results on a test we women love each year. Yep, everything absolutely 100% normal. Fast forward nine months - I got a call from my docs office make sure I had followed up on my abnormal test :blink:. They said oh not to worry these things are very slow to develop into something more serious...well once again I was in the unlucky, abnormal 5% of cases that are agressive -- those abnormal cells turned into cancer during the nine month mistake - I am thankful there was a checks and balance in place that caught the error (quite surprised given everything I've learned about modern medicine since then) and was even more thankful that it was treatable. Regardless of good outcome, it put my family through absolute hell. Ever since I chase down written/electronic results for everyone in my family -- even my sister and parents -- yep I'm a little hyper-sensitive on this particular issue.

At least on the flip side we can finally - ten years belated welcome you to the "positive, is positive" club!

Thank you for helping so many during these past ten years - including me :wub:

Lisa Mentor
Lisa
Posted

written/electronic results for everyone in my family -- even my sister and parents -- yep I'm a little hyper-sensitive on this particular issue.

At least on the flip side we can finally - ten years belated welcome you to the "positive, is positive" club!

Thank you for helping so many during these past ten years - including me :wub:

YES indeed! :D SO many you have helped as they traversed their new lifestyle.

GFinDC Veteran
GFinDC
Posted

Wow Raven, bummer and anti-bummer in the same day! :) It's no surprise you didn't catch that little blip of numbers on the lab report back then. Heck, they told you it was negative after all. And we all know how untreated brain fog, or celiac, affects our thinkers.

Many congrats on the new job! That sounds like an interesting one. Workng with people in a setting like that seems like a nice way to spend the day to me.

Geez Lisa, guess we all should be checking everything our doctors say. It's hard to understand that kind of mistake. :(

gatita Enthusiast
gatita
Posted

Wow. Just wow.

I want to say "unbelieveable" but I am learning fast that nothing is unbelievable when it comes to doctors and celiac.

I wholeheartedly ditto the thank you's for all the help and common sense and support you give everyone here.

ravenwoodglass Mentor
ravenwoodglass
Posted
  • Author

This may be why your story hit a nerve for me . I am only 18 months into my " official " diagnosis ( even though I have been gluten free for 3 years)

The pain and suffering is still quite fresh in my mind ( and body). I am still too close to the pain and suffering not to be emotional. And the anger, the anger of going 40+ years mis and un dignosised still lingers,,, and some days like today it is quite intense

(((((((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))))))))))

I know that pain lingers. The impact on our families and ourselves for all those years can be significant. I live with the what if's every day and it is hard. I try not to think too much of all that I missed as my children were growing up, all the things I couldn't do with them or for them. Somedays are harder than others but I try to think of what is ahead as much as I can. I am one of those annoying people that think everything we go through has a purpose and makes us the person we are today. I may have lost a lot but I gained patience and empathy and I think all those years spent slowly dieing has given me an ability to really enjoy and appretiate each day I have now.

I hope you are able to see the light at the end of the tunnel, forgive those idiot doctors and those that did not understand how sick you really were. For me the hardest part was and is forgiving myself for not being the person I knew was hiding behind all that pain. Since diagnosis I have slowly been able to recover who I really am but it took time. You also will get to be that person that this disease hid for years but it does take time.

nvsmom Community Regular
nvsmom
Posted

Okay I know we always tell people to get copies of all lab reports from your doctors and read them. I wish I had. I just found one of mine and am so mad I could spit nails, as my Mom used to say. Almost a year before I was finally diagnosed, a year filled with so much pain my DD told me the family would understand if I committed suicide, my then doctor did a celiac panel on me. I had always been told my celiac tests came back negative and they were done repeatedly by different doctors. Well I came across the lab report today during a futile search for my Social Security card. My anti-gliadin IGA was positive. I guess I am not a sero-negative celiac after all. Just one with stupid doctors. The only thing I can figure is since the IGG was negative he didn't think the positive IGA was significant. Or he was so busy writing scripts for me for drugs that did no good at all that he didn't read the report.

Well I won't let this bring me down. I finally found a job and start tomorrow and I am not going to let this find ruin my happy day.

Congrats on the new job! I hope it's going well.

...and (hugs) about that lab. :( Geez. How frustrating for you. No wonder doctors get sued, eh? Humph.

My doctor did that to me with my TSH test over the last 10-15 years. I undertsand your bitterness. Knowing you have lost years to poor health needlessly is incredibly maddening. :angry:

cahill Collaborator
cahill
Posted

(((((((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))))))))))

I know that pain lingers. The impact on our families and ourselves for all those years can be significant. I live with the what if's every day and it is hard. I try not to think too much of all that I missed as my children were growing up, all the things I couldn't do with them or for them. Somedays are harder than others but I try to think of what is ahead as much as I can. I am one of those annoying people that think everything we go through has a purpose and makes us the person we are today. I may have lost a lot but I gained patience and empathy and I think all those years spent slowly dieing has given me an ability to really enjoy and appretiate each day I have now.

I hope you are able to see the light at the end of the tunnel, forgive those idiot doctors and those that did not understand how sick you really were. For me the hardest part was and is forgiving myself for not being the person I knew was hiding behind all that pain. Since diagnosis I have slowly been able to recover who I really am but it took time. You also will get to be that person that this disease hid for years but it does take time.

Thanks for the (( HUGS)) they are greatly appreciated :)

I am gratefull most days but when I see my 3 children ( 2 are diagnosed the other refuses to be tested) and 4 of my grandchildren ( they are not YET dagnosed) stuggling it breaks my heart . :(

My anger is ( mostly :P ) towards the chemical and food companys that in their GREED decided to put crap ( gluten,soy ,chemicals , GMO) in our food supply.

I join the others that have said , you have inspired and encouraged me with your wisdom,patience and generous heart :wub:

beachbirdie Contributor
beachbirdie
Posted

Mind-boggling. I'm so glad you found the information though, it is awesome to have the validation. It is also affirms strongly why we need to be our own best advocates and NEVER, EVER accept the words "you're perfectly normal" without putting our own eyes on the information.

Good luck on the new job, and congratulations! Hope it is going well for you so far!

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