Jump to content
  • 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

Nurse Called And Said..


Lifenthefastlane

Recommended Posts

Lifenthefastlane Rookie

That the dr said my celiac lab results were in range. So I guess that is that huh? Lol


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



Celiac.com Sponsor (A8-M):



frieze Community Regular

That the dr said my celiac lab results were in range. So I guess that is that huh? Lol

No, you need to get the actual numbers, and ALL tests that were run. then try the diet for 8-12 weeks.

Ninja Contributor

That the dr said my celiac lab results were in range. So I guess that is that huh? Lol

Unfortunately, the blood tests have a 20-30% false negative rate. The majority of the antibodies in Celiac reside in the small intestine and any they find when testing your blood are "spill-outs."

Before you go gluten-free you should decide whether or not you want to undergo the endoscopy and biopsy. This approach is still considered the "gold-standard" for diagnosis, albeit its relatively high false negative rate (same as the blood tests). Sometimes the damage is patchy and the doctor may miss the section that is damaged. They need to take at least six biopsies of the small intestine.

Otherwise, try a gluten-free diet! Can't hurt. :-)

GottaSki Mentor

Always ask for hard or electronic copy of ALL medical tests. I learned the hard way - mistakes happen - ten years ago I was told all my tests were ok by a nurse. I then asked specifically to double check one that had been abnormal in previous years. She said, "yes, all your tests were normal". Nine months later I get a call to make sure I followed up on my abnormal test result with specialist - huh :blink: End result cancer! Treatable, but during those months the cancer became far worse - since then I get copies of ALL tests and often find that there is interesting information even in "normal" blood results and other medical reports.

Am I remembering you correctly - severe diarrhea for quite awhile along with some other possible celiac symptoms? If so, you could be Non-Celiac Gluten Intolerant or simply not have enough antibodies in your blood yet. Do make sure you get all the results to confirm what celiac &/or nutrient testing was done. It is not common, but you can be low in Total IgA which can make all IgA antibody tests inaccurate.

Completely removing gluten for three months is really a small price to pay to improve your health now and possibly prevent further health problems.

Lifenthefastlane Rookie

Okay, Thanks, I will go see about getting the copies today, I am interested in seeing what they are because I called monday and they said they would get back to me because they just received the preliminary results and they weren't sure if that's all they needed.

kittty Contributor

Like GottaSki I've also been told that blood work was normal when it really wasn't. My doctor's office recently implemented an online system where I can review all past blood work results at any time. Most of these results I'd never seen before, but there were plenty of results that were out of range and no one had ever told me!

Also watch for borderline results. For some of the values there are disputes over what really is low or high, and groups of certain borderline results together can indicate something bad going on.

Lifenthefastlane Rookie

I went to get the results today and they told me (medical records) that the results still said preliminary so they couldn't release them to me! Ugh!! What the heck does that mean?


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



Celiac.com Sponsor (A8-M):



Aprilelayne Newbie

My offices can't provide official results until the are assessed by the specialist.

Like an X-ray, the doctor will tell you their preliminary review, but the radiologist can give you final.

It's probably stuck waiting on someone's desk :(

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,763
    • Most Online (within 30 mins)
      7,748

    Donna Williamson
    Newest Member
    Donna Williamson
    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

    • cristiana
      I cannot tolerate it at all - triggers burning and nausea, ditto aspirin.  Here in the UK I take Paracetamol.
    • knitty kitty
      For back pain, I take a combination of Cobalamine B12, Pyridoxine B 6, and Thiamine B 1 (in the form Benfotiamine), which have an analgesic effect.  These three B vitamins together work way better than those over the counter pain relievers.  Theses are water soluble B vitamins that are easily excreted via the kidneys if not needed.  Thiamine will also help the nausea. Interesting Reading... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/#:~:text=Some of these processes include,Analgesics
    • knitty kitty
      @stephaniekl, welcome to the forum, Is your daughter taking any nutritional supplements?   Weight loss and failure to thrive are two symptoms of thiamine insufficiency.  Thiamine deficiency symptoms are not recognized as such by doctors.   I experienced similar symptoms when I became malnourished.  Thiamine deficiency symptoms can become worse quickly, and can affect one emotionally and mentally.  Although blood tests for thiamine aren't accurate, do have your daughter checked for nutritional deficiencies.  Thiamine B 1 works with the other B vitamins and magnesium.  Thiamine and Niacin B 3 help improve Gerd.  All the B vitamins are frequently low due to malabsorption.  Vitamin D will help calm the immune system.  Thiamine helps the immune system fight off viruses like those tick borne illnesses.   Thiamine Mononitrate, which is in many vitamin supplements, is not bioavailable.  I was taking a multivitamin containing thiamine mononitrate and still became deficient in thiamine. Thiamine in the form Benfotiamine has been shown to promote intestinal healing.  A form called TTFD (tetrahydrofurfuryl disulfide) is also excellent for correcting thiamine deficiency.  A combination of Thiamine, Cobalamine B12, and Pyridoxine B 6 has analgesic properties.  I take it for back pain.   Keep us posted on your progress! Interesting Reading... The importance of thiamine (vitamin B1) in humans https://pmc.ncbi.nlm.nih.gov/articles/PMC10568373/#:~:text=Thiamine absorption in the jejunum,system [51–53].
    • trents
      Has prednisone or some other systemic steroid been tried that might quiet her immune system down for a while? I have two acquaintances with Lyme's disease. It is a wicked condition that has long fingers.
    • stephaniekl
      We have.  She is so limited as to what she can eat.  She has a nutritionist, but they are even at a loss.  Right now, her pain is so significant that she can only eat 5-10 bites a meal.   We just got some labs back today and she is hypoglycemia, anemic and her immune system is shot.  She also is positive for 3 tickborne illnesses.  Thanks for your help! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.