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

Miscellaneous Labs For My 4Yo

megsybeth

Recommended Posts

megsybeth Enthusiast
megsybeth
Posted

I'm feeling a bit blue this morning for myself and my little boy. I can't seem to focus on my work at all. This is part rant and pity party and part a question about his labs over the years and seeking any input. To give a summary of our situation, I'm sure my 4yo has celiac (small stature, attention and motor problems, lethargy, anemia, and now horrendous daily diarrhea directly related to eating gluten-one more week until biopsy). I have celiac which just got diagnosed.

My son hasn't had a positive celiac blood test. Some people on the board said the test recently given wasn't complete but he's going to be gluten-free either way and I'm 95% sure that will help. He's getting the endo in a week. But I wanted to go back over some of his labs just to see about his other celiac tests. Realized the first round at age 1.5 was actually just a stool test for fats (grrr).

Anyway, some things have shown up over the years:

-Extra protein in the urine

-Anemia (I know that can be a celiac related issue)

-High esinophils

-Low neutrophils

-Low creatinine

-High BUN/Creatinine ratio

I just feel like the multiple doctors we've seen have looked at this and sort of thought, well he's not in distress or maybe he just had a cold. But my son is so tiny and I just feel like someone should have cared. For example low neutrophils can mean a severe autoimmune issue like leukemia, it can also be related to having the flu. Why didn't his doctor test again to make sure levels evened out? I just feel so sad and angry for my little boy, like it would take both of us being passed out on a gurney to get any doctor to think twice.

Any input would be appreciated.

Thanks,

Megan

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,161
    • Most Online (within 30 mins)
      7,748
    DAR girl
    Newest Member
    DAR girl
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      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
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      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
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      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
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      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/   
    • trents
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By trents · Posted

      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
×
×
  • Create New...