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 Tests- Half Positive, Half Negative


arkoflove

Recommended Posts

arkoflove Apprentice

Hi there,

I'm brand spankin new to all of this...I went to the Dr 3 weeks ago for tummy troubles that I have noticed since January, and then as I thought on it more, have had to some degree for the past 1.5 years.

My Dr decided to run a Celiac panel on me, to my suprise, and when the test results *finally* came back, they were half positive, half negative. :huh: The Gliadin IGA and IGG werre both positive. The other tests were negative. I've been suffering extreme consitpation that would turn into diarreah, massive bloating (looked 6 months pregnant by the end of every day) and very embarrasing constant gas. Also fatigue, depression, irritability...The Dr also found I had extremely low blood sugar even though I'd eaten that day...So in addition to the Gluten Intolerence/Celiacs, I seem to have reactive hypoglycemia where I crash after eating a simple carb/simple sugar food.

I went off gluten when I was waiting on the test results after reading so much info on it. One day I forgot and ate a half a piece of cake at church- up until then I had been improving, but that day was bad all over again. After that I stuck to it better, and now am at a full week off gluten. I am feeling 90% better, things are moving appropriately, bloating is gone, depression lifted, fatigue gone, irritability gone...it's amazing! (I am also eating every 2 hours for the blood sugar issue) I've gone down 5 lbs also.

My friend who is a nurse talked to the GI Dr at her work, and she really thinks I should proceede with the "Gold Standard" of testing by getting my biopsy done. My Dr's thoughts are why go through the extra testing if my tests indicate that I do have a gluten issue going on, and if the diet changes things? I'm feeling my Drs suggestion the most. It is hard though to live in a time where we can get a diagnosis confirmed and re-confirmed....I am an info-holic so I am tempted, but I in no way want to eat all that stuff again just to go get testing!

Here is the funny thing. I only started to have the extreme issues after I started dieting in January...I went low carb high protien, and then started the medditerranian diet (with lots of whole wheat). Whenever I broke my diet I always felt worse and immediately went up 5 lbs...One time I went and had pizza (after being 'good' for a week) and ended up in the bathroom all evening.

Anyways, I'm at the one week mark gluten free and see a great difference. Any thoughts to share with me? Thnaks for your time!!

-Megan


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

Hi Megan,

Tissue transglutaminase and endomysial antibodies are more specific for celiac disease than anti-gliaden, but it's not "normal" to be making antibodies against gluten, so... at the very least, you're definitely intolerant to it. That's not uncommon in people with other autoimmune disorders like type I diabetes and Hashimoto's disease. If a positive biopsy would help you stick to a gluten-free diet then you might want to pursue that. However... if you're feeling better that might be incentive enough! It was for me. You could also think about doing a genetic test. When I found out that I have the DQ8 gene I felt like I made a really smart decision to stay on a strict gluten-free diet. The important thing is just to feel confident about your decision... you'll need it when you eat outside of your own home!

ps - Welcome to the group ;)

ravenwoodglass Mentor

I agree with your doctor. You eliminated gluten and felt better, you get sick when you eat it and you have positive blood work. You would need to go back on gluten for a couple months to get the biopsy done and even then it could be a false negative. Personally I would consider myself diagnosed and get on with healing.

Gemini Experienced

My Dr decided to run a Celiac panel on me, to my suprise, and when the test results *finally* came back, they were half positive, half negative. :huh: The Gliadin IGA and IGG werre both positive. The other tests were negative.

Megan...what your testing shows is you are reacting to gluten. These are the two tests that are used to monitor adherence to the gluten-free diet and these need to be as low as possible. The fact that the others were negative most likely means you have not accumulated enough damage to your intestines YET to show on the other tests. This would be the natural progression if you continued to eat gluten. If you decide to have the endo done to satisfy your mind, there is a very good chance that it will come back negative, which in no way means you do not have Celiac. You may have caught it very early, which is a good thing but be prepared that the endo may be negative. You never know but don't base your decision on whether to go gluten-free or not, for the rest of your life, on a negative biopsy. If you are symptomatic, then a dietary trial is as good as any endo in backing up your blood work.

tarnalberry Community Regular

If banging your head into a wall hurts, would you choose to continue banging your head, just because your doctor said you hadn't suffered any brain damage yet?

(I'm not a fan of the "well, you do better on the diet, obviously, but maybe you can still eat gluten" line. Why the heck would I, if it makes me feel bad?)

If it makes you feel any better, my tests were far more inconclusive than yours. The lab would not give me specific numbers (I called them, and said "they didn't know the actual numbers if the tests were negative"! WTF?!), and only my anti-reticulin antibodies were positive. (Not exactly classic diagnostic use here.) But gluten-free made me feel better, gluten made me feel worse. I've been gluten free for nearing six years now.

arkoflove Apprentice

Wow, thank you for all the responses!!!

Now for another little question- If I am feeding my kids, and have touched their food, and then eat something, would that cross contamination be enough to have a reaction? I gave my one year old some french bread, which she gave back to me half chewed, and then I ate some grapes (church potluck). That evening I had the bloat and gas again (although not as extreme as before) and the next day it lingered, feeling fine today. Is that really enough to cause a reaction? (Its those mind games, you know? As a woman (sorry guys) and being on my cycle IYKWIM...)

I was thinking in regards to my tests that we did perhaps catch it very early on, becasue my vitamins were great. Although I take a ton of vitamins that could make up for it. Oh, and I also suffered 2 miscarriages between my 2 children, and then infertility when trying to concieve again. I am currently wading through more infertility challenges, along with wierd cycles and messed up hormones. All perhaps tied to Celiacs possibly?? I had a thyroid problem after I had my son, but it went away after about 8 months. Ever since my tests have been normal but on the "high" end...

Thank you again for all your help and welcoming me!!!

-Megan

ravenwoodglass Mentor
Wow, thank you for all the responses!!!

Now for another little question- If I am feeding my kids, and have touched their food, and then eat something, would that cross contamination be enough to have a reaction? -Megan

Short and sweet, yes. Make sure you wash your hands immediately if you have to handle gluten .


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



Celiac.com Sponsor (A8-M):



dream77 Apprentice
My Dr decided to run a Celiac panel on me, to my suprise, and when the test results *finally* came back, they were half positive, half negative. :huh: The Gliadin IGA and IGG werre both positive. The other tests were negative.

Gemini,

Your lab results look exaclty like mine.

What are your symptoms ?

Mine are

neuropathy, parasthesias.. fatigue.

I have hashimotos as well.

My lab work only shows deficiency for Vit D and Ferritin but everything else looks great.

I decided to no do a biopsy but just start on a gluten free diet.

tarnalberry Community Regular

Yes, contamination is going to cause intestinal damage. Think of it as poison - you don't really want to get any in you.

And yes, celiac disease is connected in higher rates of infertility as well as other auto-immune conditions (some of which can affect the thyroid).

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,670
    • Most Online (within 30 mins)
      7,748

    CDR40
    Newest Member
    CDR40
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.