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

Waiting on Blood test results…


ChrisSeth
Go to solution Solved by ChrisSeth,

Recommended Posts

ChrisSeth Rookie

Hi I finally visited with the Dr today and she ordered labs to be done. Not just for celiac disease but about 7 blood tests in total including iron levels. I’m 30 years old.  My symptoms are 

-Chronic diarrhea. In the last month and I half I had it multiple times a day, everyday. Pretty often occurrences  before I really started paying attention. 

-frequent headaches 

-fatigue

-had my appendix removed 1 year ago due to appendicitis (not sure if this is related)

-frequent stomach rumbling and gas

-sleep disturbances-waking up multiple times a night (3-5 times a night)

-severe restless leg syndrome 

-generally just don’t feel well on a daily basis

-hands and feet get cold very easily tingly feet

-anxiety/depression/mood swings/irritability . I take medication for bipolar disorder and anxiety but still have anxiety 

-sometimes get acid reflux. And sometimes it’s really bad. Like wake up choking on vomit thinking I’m gonna die bad. 

My son is 6 and has excema, is anemic, is on 2nd percentile for growth, gets constipated, and is at risk of having seizures…

My Dad was diagnosed with ulcerative colitis as a kid 50 years ago, and has a non alcoholic fatty liver, is anemic, and is fatigued. 
 

I’ll post my results as soon as I get them. To be honest I’m hoping it is celiac disease as it could explain so many things I’m dealing with. 


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



Celiac.com Sponsor (A8-M):



Celiacandme Apprentice

Keep us posted on your results. I hope you don't have to wait too long. Are you planning to have your son tested? Do you feel your father might get tested? Wishing you all better health.🍀

Scott Adams Grand Master

Welcome to the forum, your symptoms are certainly consistent with possible celiac disease. Were you eating lots of gluten daily in the 6-8 weeks before the test? If not it could lead to false negative results. When you post your results please also include the reference ranges, as each lab uses their own. Good luck!

ChrisSeth Rookie

Thanks guys. I just got my results but I don’t know what they mean… 

celiac disease reflex panel

Immunoglobulin A 
normal range 66-433 

my results are a score of 358. Is this normal? I have no idea what to make of it…

ChrisSeth Rookie

I’m reading that some sites list a high Immunoglobulin A result for my age above 300, another site says above 356, and other sites are saying above 400. I don’t know what to make of this result 🤷‍♂️

ChrisSeth Rookie

Test results came back for everything that was tested now. Cholesterol is off the charts high. Not sure if that’s related to celiac, I have no idea how it could be so high. Also tested positive for H pylori  infection… is there a link to celiac and H pylori? Or am I just experiencing symptoms of the H pylori infection? 

Scott Adams Grand Master
12 hours ago, ChrisSeth said:

Thanks guys. I just got my results but I don’t know what they mean… 

celiac disease reflex panel

Immunoglobulin A 
normal range 66-433 

my results are a score of 358. Is this normal? I have no idea what to make of it…

This is not a test for celiac disease, but your total IgA levels. This test is usually done with other celiac disease blood tests to make sure the results are accurate. Did they do a tTg-IgA test as well? Were you eating lots of gluten in the 6-8 weeks leading up to your blood tests?

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.

 

 


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



Celiac.com Sponsor (A8-M):



ChrisSeth Rookie

Hi thanks for your response! This is the only other info that’s on my test results for the IgA.

The initial testing performed in the Celiac Disease Reflex Panel is the total IgA. If the total IgA is <10 mg/dL, the reflex tests that will be ordered are the Tissue Transglutaminase IgG Antibody and the Deamidated Gliadin Peptide IgG Antibody. If the total IgA is >=10 mg/dL, the reflex test that will be ordered is the Tissue Transglutaminase IgA Antibody.

Does that give some insight? 
following up with my Dr early next week…

thanks again. 

And I didn’t eat more gluten than usual during the last 6-8 weeks on purpose. Just a normal diet prior to testing. I had gluten everyday for 6-8 weeks though I’m sure.

Scott Adams Grand Master

Yes, this sounds right. Let us know when you find out your results.

ChrisSeth Rookie

Okay thanks Scott. So based on my results will they order more tests to be done? Kind of confused.

Scott Adams Grand Master
19 hours ago, ChrisSeth said:

The initial testing performed in the Celiac Disease Reflex Panel is the total IgA. If the total IgA is <10 mg/dL, the reflex tests that will be ordered are the Tissue Transglutaminase IgG Antibody and the Deamidated Gliadin Peptide IgG Antibody. If the total IgA is >=10 mg/dL, the reflex test that will be ordered is the Tissue Transglutaminase IgA Antibody.

It looks like they will now order the Tissue Transglutaminase IgA Antibody test, but verify this with your doctor.

  • Solution
ChrisSeth Rookie

My test results for TissueTransglutaminase IgA Antibody test came back normal. Like spot on normal. I do not have celiac! My problems are stemming from this H Pylori infection. I think I’ve had it for years. We’ll see if the doctor wants to do an endoscopy to see how extensive the damage is. Otherwise just a regimen of antibiotics will do the trick. The thanks for your guys’s help! 

Scott Adams Grand Master

Good news! Keep in mind that approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fruits & Veggies

    2. - Scott Adams replied to yellowstone's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Cold/flu or gluten poisoning?

    3. - Scott Adams replied to hjayne19's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Screening

    4. - Scott Adams replied to Jmartes71's topic in Related Issues & Disorders
      2

      New issue

    5. - Scott Adams commented on Scott Adams's article in Diagnosis, Testing & Treatment
      4

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,092
    • Most Online (within 30 mins)
      7,748

    LVanderbeck12
    Newest Member
    LVanderbeck12
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
    • Scott Adams
      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a hypersensitive system. This ambiguity is a significant source of anxiety. The key differentiator often lies in the symptom pattern and accompanying signs: gluten reactions frequently include distinct digestive upset (bloating, diarrhea), neurological symptoms like "brain fog," or a specific rash (dermatitis herpetiformis), and they persist without the respiratory symptoms (runny nose, sore throat) typical of a cold. Tracking your symptoms meticulously after any exposure and during illnesses can help identify your personal patterns. Ultimately, your experience underscores the reality that for a sensitive body, any immune stressor—be it gluten or a virus—can trigger a severe and similar inflammatory cascade, making vigilant management of your diet all the more critical. Have you had a blood panel done for celiac disease? 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
      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is important for your lifelong medical record, can rule out other issues, and is often needed for family screening eligibility. The conflicting advice from your doctors creates understandable anxiety. The challenge, of course, is the "gluten challenge"—reintroducing gluten for 4-6 weeks to make the biopsy accurate. Since your symptoms resolved, this will likely make you feel unwell again. You must weigh the short-term hardship against the long-term certainty of a concrete diagnosis. A key discussion to have with your GI doctor is whether, given your clear serology and clinical response, would be getting a diagnosis without the biopsy.
    • Scott Adams
      Your experience of being medically dismissed for decades, despite a clear celiac diagnosis since 1994, is unacceptable. It is a tragic common thread in our community that the systemic failure to understand celiac disease leads to a cascade of other diagnoses—like SIBO, IBS, depression, and now the investigation of MS or meningioma—while the core autoimmune condition is neglected. The constant, severe flu-like symptoms and new neurological concerns are absolutely valid and warrant serious investigation for connections to celiac-related autoimmunity or complications like refractory disease. It is enraging that you must fight so hard to be heard. While I don't have a medical answer about MS or meningioma links, your instinct is correct: relentless symptoms require a specialist who understands celiac disease beyond the gut. Regarding the California proclamation, it is a symbolic advocacy effort; reaching out to the women mentioned may provide supportive community, but your advocacy with your local representative is the most direct action. 
    • trents
      @Peace lily, can you be more specific about which coffee manufacturers have told you that their coffee is probably not safe for celiacs? What you say is contrary to just about everything I find when I research this issue on the internet, even taking into account cross contamination. The exception seems to be when flavorings are added that may contain grain products made from wheat, barley or rye. This individual tested numerous coffees with a Nima gluten sensor and found no issues: https://www.goodforyouglutenfree.com/is-coffee-gluten-free/. There may also be an issue with cross reactivity for some celiacs:  https://www.glutenfreesociety.org/is-coffee-safe-on-a-gluten-free-diet/ . Keep in mind that when you ask questions of food companies concerning whether or not a product is gluten free or "safe for celiacs" you may be getting an ultra-cautious response due to the fact that they are careful to cover their backsides when the product hasn't been specifically tested for gluten content or is not being marketed as such. 
×
×
  • 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.