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. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      315

      Terrible Neurological Symptoms

    2. - Russ H replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    3. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      315

      Terrible Neurological Symptoms

    4. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      315

      Terrible Neurological Symptoms

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

    • Total Members
      133,586
    • Most Online (within 30 mins)
      7,748

    canmich111
    Newest Member
    canmich111
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • HectorConvector
      These symptoms started initially in 2009/2010 and I've had normal blood sugar readings in all the blood tests - so never been diagnosed with diabetes or pre-diabetes. I did request another blood test recently (yesterday in fact) which I have had, and if the blood sugar looks high it'll come up in my results which I'll be able to see next week. I don't have any other symptoms relevant to diabetes except for the nerve pain, which had been in existence for many years with "normoglycaemia", but we'll see. In terms of my current diet: I get roughly 60% of my calories from fat and protein, and 40% from carbs (an estimation). I'm on currently about 2200 calories per day, which is too low for someone of my size, so I've been slowly losing weight that I want to put back on again. But I don't want to do that without using weights, which flare my pain up unfortunately. 
    • Russ H
      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
×
×
  • 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.