Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

So Ticked Off!


Jenybeen

Recommended Posts

Jenybeen Rookie

(For those who don't know, Isaac is almost 5 yrs old with life long chronic diarrhea. We finally got a doctor who agreed that it is not normal, now that his growth is affected. We had bloodwork done over 2 weeks ago, and we're doing an endoscopy/colonoscopy in a couple weeks.)

Here's why I'm ticked off::

Isaac's doctor called me just now to go over the blood work. Well, the most important tests, the ones for Irritable Bowel Disease and Celiac Disease WERE LOST! WTH?! We got everything esle back, the CBC and the chemical panel thing, but they LOST the blood for the most important tests, the reason why we went to the darn doctor in the first place! And they don't even tell me about it for 2 and a half weeks! I am beyond mad! He said they filed an incident report with the lab...whatever. ..Isaac doesn't care about an incident report, he doesn't want to be poked again! Not to mention, they had to stick him twice the first time. I mean, I guess there is nothing I can do about it except complain and have his blood drawn again. Darn it. This is frustrating. It's not just the blood draw, it's the drive all the way down there with 4 kids in tow, too.

Anyhow, there were a couple issues with his blood results so they want him to have a sweat chloride test done to check for Cystic Fibrosis. And he had a high platelet count which the doctor doesn't have any answers for right now. He is not anemic though, which is good. The stool tests were fine, so his issue isn't with a bacteria or anything like that.

We're going to reschedule his endoscopy procedure because we realized his first soccer game is the following day, and I don't know how he is going to react to the test, so we want to be on the safe side and give him a couple days to recover if he has any complications. Hopefully we can schedule it for the following week, we're just waiting for the scheduler lady to call back.

I guess that's all for now...darn it, I am ticked off! Grr..

Jennifer


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

How very annoying, how do they manage to do things like that, and then not let you know right away? But that kind of problem and attitude seems to be rather typical.

I hope having blood taken again won't be too bad, and the next time everything goes as planned. And hopefully you'll get some answers.

Izak's Mom Apprentice

OMG, I'd be so pi$$ed!!!!!!!!!!!!!!!!!!!!!!!! I feel for you...

I hope they find it!!!!!!!

What is it with the docs? Check this out - so I tell my son's (Izak too!) ped. who is really very cool, all about Enterolab and about how I really want to use them, because Ike's been gluten-free for about 4 months and his dietary response has been undeniable (this kid went from chronic yellow squirts to real brown turds!), and I explain VERY SPECIFICALLY that the test is a stool sample, and I need to use their lab because Dr. Fine has patent on his methods and the patient doesn't have to be eating gluten to get an accurate result, whereas a patient MUST be eating gluten to have an accurate antibody blood test. Pretty clear, right? Enterolab, poop sample, ok to be gluten-free. I mean, I get the CPT codes an everything, send her Enterolab's phone number, etc. So she emails me this today:

"I have a lab slip for the labs with the CPT codes and the lab can be done here and mailed out. It is a blood test, not a stool test, so he would come here and have the blood drawn. Would you like me to mail this lab slip to you so you can double check this with your insurance co to make sure this is covered? We could do an IgA test here, which is a blood test, and the test we normally do here."

!?!?!?!?!? I mean, it's a nice email and she's concerned, etc. but DUDE, he's been gluten-free for 4 MONTHS! I don't think a blood test is going to cut it! Grrrrr...

anyway, thanks for lettting me contribute to your rant. ;-)

azmom3 Contributor

I'm so sorry. About a week or two ago, my son had blood drawn for numerous tests. We got the results back on everything except for his mono test. I called my doctor's office to find out the results and they told me they didn't have anything and then asked me if I was sure I had the blood drawn there...I was not too happy about this mostly because it was so traumatic for him to even have it drawn in the first place. We were going to go in and redo it the next day, but they called me back saying they found it. They had misspelled his name. I'm not sure how they managed to get all the other ones right, with just this one off, but that's what they said. Anyways, if your name is easy to misspell, you might want to ask them about this just in case. It saved plenty of tears on our end (from my son AND me!) Good luck!

TCA Contributor
We're going to reschedule his endoscopy procedure because we realized his first soccer game is the following day, and I don't know how he is going to react to the test, so we want to be on the safe side and give him a couple days to recover if he has any complications. Hopefully we can schedule it for the following week, we're just waiting for the scheduler lady to call back.

I just wanted to point out that you probably don't have to worry about moving it. My son was ready to take on the world after a couple hours. I would think that overnight he would be fine.

Sorry about the lost bloodwork. My daughter is a heart patient and has to get stuck ALL the time and it stinks. She is so hard to get a good stick with. Once in the hospital they stuck her 14 times and got nothing. Finally they got a dr. to come do a femoral artery stick. He did and finally got a sample. They put it in the vacuum system to send to the lab. The lab then called and said the lids had come off the samples in the system. I broke down crying. That was so hard, so I can really sympathize. I hope you get it all straightened out soon.

Hugs!

wonkabar Contributor
Well, the most important tests, the ones for Irritable Bowel Disease and Celiac Disease WERE LOST! WTH?! We got everything esle back, the CBC and the chemical panel thing, but they LOST the blood for the most important tests, the reason why we went to the darn doctor in the first place! And they don't even tell me about it for 2 and a half weeks! I am beyond mad!

I guess that's all for now...darn it, I am ticked off! Grr..

Jennifer

I feel your pain. ;) Back in March when we took Zachary to have the Celiac panel drawn, the lab "forgot" to draw 2 of the 5 labs. We didn't find this out until an entire month later and the ONLY reason we found this out is because I became the lab's worst nightmare. I called constantly to get the results for the other two labs and became relentless when I wasn't happy with their answers. We had gotten the first three back in a reasonable amount of time, however when I questioned the other two they just kept telling me the others were in yet. I finally flat-out refused to get off the phone and demanded to speak to a supervisor. This woman researched the "problem" and informed me that she was sorry but it was an oversight b/c they were busy that day...........OMG, I went nuts!! :ph34r: Can you believe that??!!

The problem now was that Zachary had been strictly gluten-free for 4.5 weeks and they couldn't use any of his reserved blood from the other labs b/c they were now too old. :angry: I continued my tirade and contacted the head of the lab for the entire hospital and proceeded to leave him a scathing message explaining my situation. Needless to say, he got back to me ASAP and profusely apologized for the lab's irresponsibility and cavalier attitude. I knew when I called this guy that there wouldn't be a single thing he could do because too much time had passed and Zachary was already gluten-free. But I did want it clearly understood that labs like this CANNOT/SHOULD NOT be an oversight due to the seriousness of them and time needed to prepare for them. I truly do believe that he understood as he had no qualms about telling me that this situation is being "dealt with" as we spoke. He was very pleasant but clearly was not happy with his employees and the error. The fact that Zachary was a 3 year-old made it that much worse. At the end of the conversation, he gave me his full name and direct number to his office in the event I had experienced any other problems or needed additional help.

The funny PS to this story is that my husband is the ISS /Network Manager for the entire organization so he almost had a heart attack when I told him I went ballistic on these people. He obviously agreed, but his heart did skip a beat when he got my voice-mail. :lol:

Jenybeen Rookie
OMG, I'd be so pi$$ed!!!!!!!!!!!!!!!!!!!!!!!! I feel for you...

I hope they find it!!!!!!!

What is it with the docs? Check this out - so I tell my son's (Izak too!) ped. who is really very cool, all about Enterolab and about how I really want to use them, because Ike's been gluten-free for about 4 months and his dietary response has been undeniable (this kid went from chronic yellow squirts to real brown turds!), and I explain VERY SPECIFICALLY that the test is a stool sample, and I need to use their lab because Dr. Fine has patent on his methods and the patient doesn't have to be eating gluten to get an accurate result, whereas a patient MUST be eating gluten to have an accurate antibody blood test. Pretty clear, right? Enterolab, poop sample, ok to be gluten-free. I mean, I get the CPT codes an everything, send her Enterolab's phone number, etc. So she emails me this today:

"I have a lab slip for the labs with the CPT codes and the lab can be done here and mailed out. It is a blood test, not a stool test, so he would come here and have the blood drawn. Would you like me to mail this lab slip to you so you can double check this with your insurance co to make sure this is covered? We could do an IgA test here, which is a blood test, and the test we normally do here."

!?!?!?!?!? I mean, it's a nice email and she's concerned, etc. but DUDE, he's been gluten-free for 4 MONTHS! I don't think a blood test is going to cut it! Grrrrr...

anyway, thanks for lettting me contribute to your rant. ;-)

Sorry you had to deal with such a frustrating situation, too...I mean, it's one thing if it was ME that had to go through it again, but I hate to have so much testing and poking going on with my child, know what I mean?

Jennifer

I just wanted to point out that you probably don't have to worry about moving it. My son was ready to take on the world after a couple hours. I would think that overnight he would be fine.

Sorry about the lost bloodwork. My daughter is a heart patient and has to get stuck ALL the time and it stinks. She is so hard to get a good stick with. Once in the hospital they stuck her 14 times and got nothing. Finally they got a dr. to come do a femoral artery stick. He did and finally got a sample. They put it in the vacuum system to send to the lab. The lab then called and said the lids had come off the samples in the system. I broke down crying. That was so hard, so I can really sympathize. I hope you get it all straightened out soon.

Hugs!

Thanks for the advice...I think we will still try to move the appointment. My husband has a really difficult time with anesthesia and I can't help but wonder if Isaac may have the same problem, so I'd rather be safe than sorry. Also, he is starting Kindergarten next week and I hate to have him miss a day of school so soon in the year...and I found out they have a day off of school on the 22nd, so I am going to see if we can do the procedure then! It would be perfect!

Jennifer

I feel your pain. ;) Back in March when we took Zachary to have the Celiac panel drawn, the lab "forgot" to draw 2 of the 5 labs. We didn't find this out until an entire month later and the ONLY reason we found this out is because I became the lab's worst nightmare. I called constantly to get the results for the other two labs and became relentless when I wasn't happy with their answers. We had gotten the first three back in a reasonable amount of time, however when I questioned the other two they just kept telling me the others were in yet. I finally flat-out refused to get off the phone and demanded to speak to a supervisor. This woman researched the "problem" and informed me that she was sorry but it was an oversight b/c they were busy that day...........OMG, I went nuts!! :ph34r: Can you believe that??!!

The problem now was that Zachary had been strictly gluten-free for 4.5 weeks and they couldn't use any of his reserved blood from the other labs b/c they were now too old. :angry: I continued my tirade and contacted the head of the lab for the entire hospital and proceeded to leave him a scathing message explaining my situation. Needless to say, he got back to me ASAP and profusely apologized for the lab's irresponsibility and cavalier attitude. I knew when I called this guy that there wouldn't be a single thing he could do because too much time had passed and Zachary was already gluten-free. But I did want it clearly understood that labs like this CANNOT/SHOULD NOT be an oversight due to the seriousness of them and time needed to prepare for them. I truly do believe that he understood as he had no qualms about telling me that this situation is being "dealt with" as we spoke. He was very pleasant but clearly was not happy with his employees and the error. The fact that Zachary was a 3 year-old made it that much worse. At the end of the conversation, he gave me his full name and direct number to his office in the event I had experienced any other problems or needed additional help.

The funny PS to this story is that my husband is the ISS /Network Manager for the entire organization so he almost had a heart attack when I told him I went ballistic on these people. He obviously agreed, but his heart did skip a beat when he got my voice-mail. :lol:

Dang...sorry about that! It maddening, isn't it? I think I am going to call them before I take him to get it drawn again just to find out exactly what they think happened to the "lost" tubes of blood. Maybe also have them check to make sure they just didn't label his name wrong or something. I also want to file my own complaint, the doctor said they filed an incident report, but I don't think that's as good as hearing from the patient's mother...I have a few things to say! And I'll bet they try tp bill my insurance again, too!! I'm going to keep an eye on that, my insurance company shouldn't have to pay twice, should they?

Jennifer


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Jenybeen Rookie

Isaac was pretty upset about the thought of going back to have more blood drawn, so I called the GI doctor to ask if they can just draw the blood when he goes in for the endoscopy. They said yes! Woohoo! So they'll draw the blood for the celiac and Crohn's tests right before they pull his IV out in the hospital. Perfect. Endo is scheduled for 7am on Oct. 3rd.

Jennifer

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,365
    • Most Online (within 30 mins)
      7,748

    Shraddha
    Newest Member
    Shraddha
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • aperlo34
      @cristiana Yes - just to add to this: my ferritin went down after my first 2 infusions (which were 8 months ago), so I got more infusions a couple of weeks ago. From those alone, I'm feeling better. It's a work in progress! Be patient! I was also taking iron supplements the entire time.  
    • cristiana
      @OlafAndvarafors  I just wanted to reassure you that I had these same issues for a while before and after diagnosis but they did settle.  I think the deficiencies and anxiety that are very common in undiagnosed/newly diagnosed coeliacs are a perfect mix for twitching!  I cannot say exactly how long you will experience this but my feeling that once you are properly diagnosed and it is found to be that gluten is an issue, get your vitamin/mineral levels assessed and if they are low/low normal, don't hesitate to supplement until the levels normalise.   I was Iron anaemic, and low normal with B12.   Once my levels of iron were normal, and B12 nearer 500, my symptoms reduced greatly, and I found magnesium helped A LOT with twitching face muscles in particular.  However - word of caution with iron: if you do need to supplement, have regular blood tests to check levels as too much iron can be dangerous.      
    • Wheatwacked
      a deficiency in thiamine (vitamin B1) can contribute to muscle twitching, especially in more severe cases of thiamine deficiency. Thiamine is crucial for nerve function and energy production, and its deficiency can disrupt muscle contraction and nerve signals.  Lots of Thiamine a day, several hundred mg, to reverse thiamine deficiency.  The usual dose for adults is between 25mg and 100mg, taken once a day. Severe thiamine deficiency The usual dose for adults is 100mg, taken 2 or 3 times a day.  
    • Ccoast Celiac
      Hi @Mettedkny I’ve had the same problem with Xiromed Progesterone 100 Caps. I’m very careful about gluten and only have had gluten “gut issues” since starting these. I previously had another brand, and no problems. So, even if Xiromed says “gluten free” perhaps in the manufacturing process there is gluten cross-contamination. I’m already requesting a different manufacturer to see if there is improvement.  
    • Scott Adams
      I thought I'd share this article about recent findings that not enough gluten is transmitted during kissing to be concerned about: https://www.eurekalert.org/news-releases/1082120  What do you think?
×
×
  • Create New...