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
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.