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Waiting on Blood test results…

ChrisSeth
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ChrisSeth Rookie
ChrisSeth
Posted

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. 

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Celiacandme Apprentice
Celiacandme
Posted

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
Scott Adams
Posted

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
ChrisSeth
Posted
  • Author

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
ChrisSeth
Posted
  • Author

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
ChrisSeth
Posted
  • Author

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
Scott Adams
Posted
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.

 

 

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ChrisSeth Rookie
ChrisSeth
Posted
  • Author

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
Scott Adams
Posted

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

ChrisSeth Rookie
ChrisSeth
Posted
  • Author

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

Scott Adams Grand Master
Scott Adams
Posted
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
ChrisSeth
Posted
  • Author
  • Solution

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
Scott Adams
Posted

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.

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    • trents
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      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
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      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
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      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
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      Small Bowel Resection 12 inches

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      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
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      Small Bowel Resection 12 inches

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