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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

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

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

    KABoston
    Newest Member
    KABoston
    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

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.