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

Celiac Panel Blood Tests


sMann

Recommended Posts

sMann Newbie

How accurate are they? I've been gluten-free for about 18 months, and the doctor said my blood shows no sign of antibodies (or something like that). Does this necessarily mean I am safe to have gluten, because I know for a fact that it causes me to have bloody mucus.

Thank you,

Steve


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



Celiac.com Sponsor (A8-M):



Sharon C. Explorer

A blood test now should show no antibodies if you've been gluten free 18 months. Going back to gluten knowing it causes bloody mucus seems like a bad choice.

tarnalberry Community Regular

The blood tests are tests for antibodies to gluten - reactions to gluten. If there's no gluten in your body, there's no resonse, and no antibodies to find. That's why they often test in 6- or 12- month intervals in order to verify that blood tests show no antibodies.

If you originally tested gluten free, or know otherwise from your symptomatic history, that you are gluten intolerant, then you need to remain gluten free for the rest of your life.

sMann Newbie

Thanks guys, I knew something wasn't right. Are doctors honestly that ignorant to things like this or what?

CMCM Rising Star

If there's one thing that characterizes celiac disease, it's that of near total ignorance about it. I have yet to meet a doctor who knows anything at all about it. My own GP told me "You know a lot more than I do about celiac disease." And this state of ignorance has persisted for DECADES......it's just not taught in medical school in this country. Doctors in Europe are quite knowledgeable, though. Since very few doctors know about it in the U.S., relatively few people are diagnosed. It's pathetic, but has meant that those of us with celiac disease tend to diagnose ourselves thru various means. Unfortunately, huge numbers of people suffer throughout their lives and never learn what their problem is/was. Knowledge is everything, so my advice is always to read read read and learn learn learn. "Dangerous Grains" is a good place to start (it's on Amazon for about $10).

Thanks guys, I knew something wasn't right. Are doctors honestly that ignorant to things like this or what?
happygirl Collaborator

I think about Celiac testing like diabetes testing.

When a person with diabetes who doesn't know it yet is tested, their blood sugar levels are all out of whack.

When a person with Celiac who doesn't know it yet is tested, their Celiac blood panel is (often-not definitively) out of whack.

When a diabetic gains strict control of their diet and learns to manage their diet, when they test their blood sugar, it is normal. It doesn't mean that they dont have diabetes anymore. It means that they are doing the necessary steps to prevent problems. When they start eating bad, their sugars would go up again.

When a Celiac is in strict control of their diet, when they test their Celiac panels, they return to normal (may take a little while for some, but in general, on a strict gluten free diet, they return to 'normal ranges.') It means they are doing the necessary steps to prevent the Celiac reaction (i.e., the celiac reaction only occurs when gluten is ingested). When they start eating gluten again, their numbers would go up again.

Hope that clarifies. And yes, in terms of Celiac, doctors can certainly be that ignorant. We could write a book on the ignorant things GIs have said to us....and your experience mirrors MANY MANY others!

Having negative blood work to a Celiac on a strict gluten free diet does not mean that you can eat gluten again. It means you aren't eating gluten and causing a reaction---which is a good thing!

sMann Newbie

I'm just confused as to the whole antibodies thing. If your body produces antibodies for something, do they not stay in your system forever? Isn't that how vaccines work? Thanks for the support thus far.

-Steve


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Not all antibodies work the same way, and no - not all antibodies stay in the system for ever. There isn't enough 'space' in the body (and I mean that literally) to hold antibodies to *everything* that your immune system produces an antibody to. It may produce antibodies for a while, but the immune system is somewhat intelligent (no, I don't mean 'intelligent' in the conscious way, but chemically clever, if you will) in that it doesn't continually produce antibodies without a catalyst in all situations. In the case of some diseases, some portions of the immune system will 'keep on file' (in various cells designed for the purpose) antibodies, but even this isn't forever, and isn't in all cases, and is more the case is diseases. (The actual chemical process involved in celiac disease is a bit different, which may be the reason for the misunderstanding, now that I think about it.)

sMann Newbie

Makes sense. Celiac disease isn't a traditional disease after all. Thanks for clarifying.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,838
    • Most Online (within 30 mins)
      7,748

    Adorabaloo
    Newest Member
    Adorabaloo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Dawn Meyers
      Hi I have celiac disease and the dermatitis herpetiformis rash Also other autommune diseases.  I have had bad side effects to all the vaccines I have had and now my Doctor wants me to have the pneumonia vaccine.  I am concerned because of some of the bad side effects I have had in the past example Hep B after shot couldn't  move arm for several months.  Flu shot and COVID was sick right after shot. Told not to get anymore. My lung is inflamed and have a cough I can't seem to get rid of. Very concerned 😟. 
    • knitty kitty
      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
×
×
  • Create New...