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

Blood Results


Ilovehorses

Recommended Posts

Ilovehorses Rookie

I've not had the results of my celiac one yet but I called my GP this morning. The receptionist said that my other results have come back ie anaemia/thyroid/liver and kidney function and my doctor has looked at them, because I havn't had a phone call yet they must be fine.

So could it still be celiac, even if my routine bloods are fine???


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Simple answer, yes.

JoshB Apprentice

So... this isn't a popular viewpoint on this forum, but as far as I can tell it is the viewpoint backed up by actual evidence: If you test negative on the blood test you almost certainly do not have celiac disease. There is a 1-2% false negative rate, but these should be flagged by a very low "total serum" or "total IgA". Your doctor should have examined that possibility when he read your lab report. Technically there's also the possibility of a lab mistake -- judging by the testimonials on this forums where several people say that they had completely normal blood tests but abnormal endoscopy this seems to be distressingly common. For the possibility of lab mistake, I've read some recommendations that the test should be done again at another lab when there is very good reason to expect celiac disease.

The most common "false negative" reason really seems to be doctor interpretation. It wouldn't hurt to look at your lab yourself. My doctor, for instance, tried to tell me that although I was high everywhere else, since I had "normal total IgA" he wasn't sure I had celiac disease... So yeah, your doctor could be a moron -- or to be kinder, could be inexperienced in reading celiac labs and dealing with celiac disease. You could also possibly have had a mistake at the lab, or you could possibly be so unique that the tests don't work for you because your body has found a way to have celiac disease in a completely different manor from everyone else in the world... but that's probably not the case.

Open Original Shared Link

ravenwoodglass Mentor

So... this isn't a popular viewpoint on this forum, but as far as I can tell it is the viewpoint backed up by actual evidence: If you test negative on the blood test you almost certainly do not have celiac disease. There is a 1-2% false negative rate, but these should be flagged by a very low "total serum" or "total IgA". Your doctor should have examined that possibility when he read your lab report. Technically there's also the possibility of a lab mistake -- judging by the testimonials on this forums where several people say that they had completely normal blood tests but abnormal endoscopy this seems to be distressingly common. For the possibility of lab mistake, I've read some recommendations that the test should be done again at another lab when there is very good reason to expect celiac disease.

The most common "false negative" reason really seems to be doctor interpretation. It wouldn't hurt to look at your lab yourself. My doctor, for instance, tried to tell me that although I was high everywhere else, since I had "normal total IgA" he wasn't sure I had celiac disease... So yeah, your doctor could be a moron -- or to be kinder, could be inexperienced in reading celiac labs and dealing with celiac disease. You could also possibly have had a mistake at the lab, or you could possibly be so unique that the tests don't work for you because your body has found a way to have celiac disease in a completely different manor from everyone else in the world... but that's probably not the case.

Open Original Shared Link

The posters question was "So could it still be celiac, even if my routine bloods are fine???" as the OP has not gotten the results of the celiac panel.

There is also still much to be learned about celiac and gluten intolerance. My doctors trusting my false negative tests cost me years of my life and permanent damage. IMHO the number of false negatives is much higher than that article suggests and is borne out by the number of folks who have had negative bloods but positive biopsy.

My current GI has anyone whose symptoms suggest celiac go on the diet to see if it helps no matter what their test results are.

pain*in*my*gut Apprentice

I've not had the results of my celiac one yet but I called my GP this morning. The receptionist said that my other results have come back ie anaemia/thyroid/liver and kidney function and my doctor has looked at them, because I havn't had a phone call yet they must be fine.

So could it still be celiac, even if my routine bloods are fine???

There are many autoimmune diseases that can still be present in the absence of positive blood work. It's called being "sero-negative" for that particular disease. Celiac is one of them. Is it likely? No. But gluten intolerance is very possible, and your bloodwork will not necessarily tell you if you have that.

I am reading a good book right now about non-Celiac gluten intolerance (not sure if I can post the name of the book or not)?. It has really helped me understand that Celiac disease is only one manifestation of gluten intolerance. Unfortunately, many doctors won't admit there is a problem unless you have positive tests for Celiac. It's a shame, really. :(

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,542
    • Most Online (within 30 mins)
      7,748

    Carol Zimmer
    Newest Member
    Carol Zimmer
    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

    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
×
×
  • 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.