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

Gluten Sensitive? Neg Test Results


birdie22

Recommended Posts

birdie22 Enthusiast

Could I still be gluten sensitive with few symptoms and normal test results?

About a year ago (about 6mos after the birth of my 2nd child) I started having daily heartburn. I attributed to hormone fluctuations. In Sept 2010 I had the Mirena IUD inserted and a month or so later started having severe bloating episodes a few times a month, I was also having cyclical headaches, extreme fatigue and canker sores. After about 9mos I had the Mirena removed thinking that it was causing these symptoms. A few months after removed the symptoms continued. The bloating seems to happen about once a week or 1-2x's every other week. The canker sores happen at least monthly. The bloating makes me look pregnant and I feel great discomfort right under my rib cage. The heartburn I notice most at the base of my throat. It isn't severe, but noticeable. Since the symptoms hadn't resolved I took up the issue with my GP. She had me do a 6wk trial of prilosec and an upper GI to rule out GERD and hernia. Prilosec corrected the heartburn, but not the bloating. Upper GI was normal. Had blood tests for liver profile, CA 125, anti-tTG IgA and IgA. All results were normal.

Anti-tTG IgA was <10 (reference range 0-19)

IgA was 221 (reference range 70-400)

Since those tests were normal but discomfort continued I had an abdominal CT done. Results were also normal (aside from a few incidental benign findings).

GP suggested a trial of elimination diet. She first had me do only chicken, rice, banana for a week then slowly add in veggies, meats, dairy, gluten, etc. Right now I am doing gluten-free, but have added in everything else.

Could I be gluten sensitive if only symptoms seem to be bloating that gets worse as day progresses and resolves overnight, plus monthly canker sores? My GI health is otherwise normal. I'm not constipated, nor do I have diarrhea. No cramping. No painful gas. Just stomach bloating that is visible and uncomfortable.


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



Celiac.com Sponsor (A8-M):



nora-n Rookie

The most common form of celiac nowadays is patchy celiac, and the ttg test is known to only be close to reliable with total villous atrophy. even then it misses 20% or more (depending on how hight the trhreshold in the lab is set) of those with severe celiac.

With patchy celiac, only 40% will test positive.

Now the newest test, the deaminated gliadin test, is much better at picking up patchy celiac.

chrissyinnj Apprentice

Also, I have read on several sites (plus my lab) now that the AGA (anti-gliadin antibody) is an indicator of gluten sensitivity (NCGS) You might want that test run as well.

My son's results were negative for the celiac tests and strong positive for the AGA. (He was back on gluten for 9 weeks when the test was run). The lab noted that it was an indicator of gluten sen and he may want to try a gluten free diet. btw- He had responded to the gluten-free diet before we decided to run the tests.

birdie22 Enthusiast

Thank you for those two suggested tests. I am assuming that as with the other tests I would need to have gluten in my diet at the time of testing?

nora-n Rookie

Yes you would still need to eat gluten, but the IgG versions of these antibodies often hang around much longer, up to a year. I can

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,307
    • Most Online (within 30 mins)
      7,748

    JenLo
    Newest Member
    JenLo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • TheFuzz
      I had similar pains after going gluten-free.  Turns out it was more related to undiagnosed rheumatoid arthritis and fibromyalgia.  Because celiac is an immune dysfunction disease, it's possible you have another underlying one.  I wish mine had been identified much sooner, so you may want to look at symptoms of diseases like RA and lupus to see if you have other symptoms that might point you in the right direction to ask the right questions.
    • lmemsm
      When they give you a blood test, there's a range they consider low to high from the results.  It's not based on how much vitamin you're taking.  My blood tests were low and then I took 5000 IU and they went too high on the blood test.  I also get exposed to D from the sun and I live in a very sunny area and I get D in some foods I eat.  I was very annoyed with the doctors because they weren't paying attention to the blood test results in order to help me figure out the optimum dose for me.  They just told me to take it when it was low on the blood test and didn't pay any attention after that.  Too much of a good thing is not a good a thing.  I hope the medical field knows enough to really know what the safe range is.  However, I would not go by just intake or sun exposure since how much each person can absorb is different.  That's why I wanted actual testing to determine my levels. Also, interesting points, about the choline.  I just saw some information about it yesterday and was thinking I'd better check if I'm getting the RDA.  This is the second mention I've seen on this in two days, so maybe the universe is trying to tell me something. If I get cramps in my feet, salt usually helps with it.  It usually means my electrolyte levels are off somehow.  I bought some electrolyte water from Sprouts.  I also try to add salt (Himalayan or sea) to my meals.  I always hear cut out salt from medical professionals.  I don't think they realize that when you make things from scratch and eat unprocessed foods, you've probably cut out a lot of the salt in an average American diet.  It can be easy to be too low on salt if you make things yourself. I've read selenium is important to balance iodine intake and one shouldn't have too much of one and not enough of the other.
    • Wheatwacked
      How high is too high?  I take 10,000 IU vitamin D3 every day.  My blood is stable at 80 ng/ml (200 nmol/L).  Even at 10,000 a day it took 8 years to raise it to 80.  Higher levels of 25(OH)D in blood can moderate the autoimmune attack.  Vitamin D Is Not as Toxic as Was Once Thought Lower vitamin D levels have also been associated with increased OCD symptom severity.  This is a most dangerous popular belief. As mentioned you are suffering from vitamin and mineral deficiencies.  Part of the recovery, that is never explained by doctors, is replenishing your deficits.  Celiac Disease is a disease of malabsorption.  The Western diet is a diet of deficiency.  That is why many processed foods are fortified.  Gluten free foods are exempt.   "I’ve been completely asymptomatic since diagnosis."  There are 200 symptoms that can be caused by Celiac Disease and the malabsorbtion it can cause.     • "Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). " Many are misdiagnosed as gall bladder disease.  Choline is needed to create the bile salts needed to digest fat.  90% of our population is deficient.  Eggs and beef are the best source.  The RDA (minimum daily allowance is 500 mg to 3500 mg daily.  One egg has 27% DV.  Broccoli, chopped, boiled, drained, ½ cup only has 7%.  Low choline can cause Non Alcoholic Fatty Liver Disease.   Choline and Risk of Neural Tube Defects in a Folate-fortified Population; Could we be overlooking a potential choline crisis in the United Kingdom?;   Choline was formerly called vitamin B4.  I prefer phoshphatidyl choline for supplementation as it is the form we get in food.   • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds.  Vitamin D deficiency may be linked to chronic back pain, But I took levothyroxine for slightly low FT4 levels.  I supplement Iodine by taking Liquid Iodine.  50 mcg per drop.  The RDA is 150 mcg to 1000 mcg in the US.  In Japan it is 150 mcg to 3000 mcg.  I take 600 mcg a day. Since 1970 the intake of iodine has decreased in the US by 50%.  Hypothyroidism has increased 50%.  Insufficient iodine leads to the thyroid gland working harder to produce these hormones, and if it cannot keep up, hypothyroidism can develop, according to the Mayo Clinic.   Iodine Insufficiency in America: The Neglected Pandemic.   I see improvement in muscle tone, healing, brain fog since taking the Liquid Iodine.  I could not eat enough seaweed. B1 stops the cramps in my feet B6 speeds up gastric empying and works on my freezing toes at night.  250 mg several times a day sometimes.  Also seems to be helping bowel regularity. 5 mg Lithium Orotate helped me with overthinking.   10,000 IU vitamin D to control autoimmune, mental health. 500 mg Thiamine - neurologic symptoms 500 mg Nicotinic Acid - increase capillary blood flow 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle 1000 mcg B12 - creates hemoglobin for oxygen transport 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.). 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine. Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  600 mcg of Liquid Iodine.  Sometimes twice a day, usually added to a drink.
    • Scott Adams
      I completely understand the frustration of finding reliable gluten-free ingredients—it's exhausting when trusted products disappear or companies don't respond to safety inquiries. For teff flour in bulk, check out Azure Standard or Bulk Foods; both often carry gluten-free grains in larger quantities and clearly label dedicated facilities. For soy flour, Anthony's Goods tests for gluten and offers bulk options, though always verify their current certifications. For beans, peas, and lentils, Palouse Brand is a great choice—they're GFCO-certified and transparent about their farming practices. As for lentil elbow macaroni, Explore Cuisine offers similar pastas, though cross-contact policies vary. When companies don't respond, I lean on third-party certifications (GFCO, NSF) or stick with brands like Jovial or Edward & Sons that prioritize allergen safety. It's a constant hunt, but hopefully these leads help! Have you tried local co-ops or ethnic markets for teff? Sometimes they stock bulk African or Indian brands with clear labeling.
    • Scott Adams
      Beans in desserts are a fantastic way to add moisture, structure, and protein while keeping recipes gluten-free. Black bean brownies are a classic, but other beans like adzuki and pinto can also work well—adzuki beans are naturally sweet and often used in Asian desserts, making them great for cookies or cakes. Lentils, especially red lentils, blend smoothly into batters and can replace flour in recipes like blondies or muffins. Since you’re allergic to chickpeas, you might try navy beans or cannellini beans for a milder flavor in vanilla-based desserts. For less crumbliness, blending cooked beans into a paste helps bind the dough, and adding a bit of xanthan gum (if tolerated) can improve texture. If you’re experimenting, start with recipes that replace half the flour with bean purée before going fully flourless. Have you tried using aquafaba (bean liquid) as an egg substitute? It works wonders in gluten-free baking too!
×
×
  • Create New...