Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Just A Little Bit Angry
0

19 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

Oh well :/

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Congrats on your new job!!

0

Share this post


Link to post
Share on other sites




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. :)

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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... :)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. :(

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

(((((((((((((((((((((((((((((((((((((((((((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:

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,146
    • Total Posts
      919,572
  • Topics

  • Posts

    • Hi, I am 20yrs old and have had this weird stomach pains on and off for 2 years. They started by just having pains on my left side when I sucked in or pressed on my tummy. In the last 3 months they have gotten really bad, with a lot of bloating and used to occur almost every time just before bed I would get bloated, and feel constipated like I just needed a hole in my stomach to release the pressure. I have had tests for lactose and gluten, and they both came back negative. I was not having any gluten at the time of the test which I have read can affect the results. I had little help from my doctor so I went gluten free which was working really well and I would only have pain once every two weeks. The last three nights were awful, I was in so much pain I struggled to walk, and again they would go away in the morning. I looked like I was pregnant and relief was only through passing wind (sorry for the detail!). I was wondering if anyone has had similar experience, or could point me in a direction to help me. The weird thing is that I did have gluten one day and that didn't seem to affect me at all. Then I will have something like vegemite (I'm from Australia) and this is the only thing that I can think off that would set me off (it contains wheat). So I don't really know what do to or where to go, these stomach pains have been heightened since I had a horrible gastro for a week, and went to hospital. Could it be possible that my gut lining has been damaged? I have become really stuck on what I should do next, as tonight my stomach is fine, I actually feel hungry (previously I have felt super full as a result of being bloated), so I have no idea what triggered that horrible episodes before I went to bed for the last few nights. Any thoughts or suggestions would be amazing, thank heaps
    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,178
    • Most Online
      1,763

    Newest Member
    Sarah.e.may9602
    Joined