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

Crazy Update; Waiting On Tests For My Daughter Now


MissyShelle

Recommended Posts

MissyShelle Rookie

Well, got insurance settled and I head to the doctor first thing Monday morning. 

 

However, today has been a rollercoaster. My oldest twin wakes up screaming that her legs hurt. Head to doctor. They do a routine blood panel (but N.P. throws in a few extra tests on a hunch) and we just suspect maybe a low potassium level. Get an urgent call 2 hours later that her hemoglobin is at a 7. So now waiting on the Children's Hospital to call to see if we are being admitted for testing/blood transfusion or just making an appointment. 

 

Her other blood work panels didn't show anemia, so we have to figure out what this is from. Then the doctor asks me "Aren't you being tested for Celiac?" I tell her yes and she said to definitely mention that to the drs when we go to the specialist because that's an important consideration in how they proceed. 

 

So, I sit and wait on a phone call, my daughter is in pain and exhausted. I figure with a hemoglobin of 7, we'd already be at the hospital but I guess there are procedures. 

 

UGH! But isn't a low hemoglobin tied to Celiacs? 


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Not that i'm aware of. :(

Good luck.

ruthie-ray Newbie

I don't have a lot of info to provide, since I was only diagnosed on Monday, but I have two small children and feel for you.  Hope you get it figured out soon and your daughter's pain goes away.  Good luck.

Well, got insurance settled and I head to the doctor first thing Monday morning. 

 

However, today has been a rollercoaster. My oldest twin wakes up screaming that her legs hurt. Head to doctor. They do a routine blood panel (but N.P. throws in a few extra tests on a hunch) and we just suspect maybe a low potassium level. Get an urgent call 2 hours later that her hemoglobin is at a 7. So now waiting on the Children's Hospital to call to see if we are being admitted for testing/blood transfusion or just making an appointment. 

 

Her other blood work panels didn't show anemia, so we have to figure out what this is from. Then the doctor asks me "Aren't you being tested for Celiac?" I tell her yes and she said to definitely mention that to the drs when we go to the specialist because that's an important consideration in how they proceed. 

 

So, I sit and wait on a phone call, my daughter is in pain and exhausted. I figure with a hemoglobin of 7, we'd already be at the hospital but I guess there are procedures. 

 

UGH! But isn't a low hemoglobin tied to Celiacs? 

bartfull Rising Star

Open Original Shared Link

kareng Grand Master

B12 and iron and folate anemia a are common in Celiac if that is what you are asking. Seems like the doctor knew that, too?

1desperateladysaved Proficient

My low iron, I suspect, is tied to celiac.  Yeah, low iron just doesn't feel good.  So, I hope you can get help and definative answers soon.

 

Diana

MissyShelle Rookie

The thing is, the doctor said her overall blood work looked good, it was just her hemoglobin that was so low. So we are heading to hospital tomorrow for more tests and possible transfusion. Man, it's been a long 2 weeks in my household. 


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,163
    • Most Online (within 30 mins)
      7,748

    Estee
    Newest Member
    Estee
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...