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How Reliable Is A Blood Test?

DonnaD55

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DonnaD55 Newbie
DonnaD55
Posted

My daughter who is 12 has been dealing with abdominal cramping and diarrhea for about a year and a half. At first we thought it was lactose intolerance as taking her off of dairy helped a lot but not completely. We've rather loosely done a gluten free diet recently and she was better. But sometimes she can eat wheat products with no problems at all. She had a blood test for celiac last week and the test came back positive. Can i trust that it's correct or do we need more testing to confirm the diagnosis?

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Skylark Collaborator
Skylark
Posted

Hi and welcome. There are multiple tests for celiac disease, some of which are more specific than others. Which test was positive?

It is possible for someone with celiac to eat wheat without immediate symptoms. The autoimmune damage is still being done. She also may find that she gets more sensitive to wheat once you get the diet going correctly and her immune system settles down from the constant assault.

lemontree1 Rookie
lemontree1
Posted

Correct me if I'm wrong, but I've never heard of a false positive for a Celiac blood test. False negatives abound, but not false positives.

mushroom Proficient
mushroom
Posted

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One negative aspect of the TTG antibody is that it can be falsely positive in a patient who has another autoimmune condition. TTG false positivity has been described in patients with both type I diabetes and autoimmune hepatitis. Theoretically, it can also be falsely positive in other autoimmune disease.

rosetapper23 Explorer
rosetapper23
Posted

I agree with Mushroom, but at celiac conferences the experts generally say that, while false negatives are common and should be questioned, false positives are rare and you can "take it to the bank" that you have celiac.

Skylark Collaborator
Skylark
Posted

Correct me if I'm wrong, but I've never heard of a false positive for a Celiac blood test. False negatives abound, but not false positives.

The blood tests that really leave no question are anti-EMA and anti-DGP. The old anti-gliadin test is notoriously inaccurate, although if you get a positive result you probably do need to have a biopsy and try the diet.

TTG is a sign of autoimmunity but not specific for celiac as Raven mentioned. As well as type 1 diabetes and autoimmune hepatitis, TTG is common in inflammatory bowel disease like Crohn's.

DonnaD55 Newbie
DonnaD55
Posted
  • Author

Thank you so much for your thoughts. We go to the doctor on Tuesday to discuss the results of the test. I'll find out exactly what the test was. Meanwhile, we'll stay gluten free!

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tristonsdad Newbie
tristonsdad
Posted

With my daughter we did an upper endescopomy (probably spelled wrong) and they also took biopsy at same time to verify. This was recommend by our specialist after the positive blood test.

Di2011 Enthusiast
Di2011
Posted

Thank you so much for your thoughts. We go to the doctor on Tuesday to discuss the results of the test. I'll find out exactly what the test was. Meanwhile, we'll stay gluten free!

Get a COPY of the results. You will need them in coming years and she will need them as an adult.

mushroom Proficient
mushroom
Posted

Thank you so much for your thoughts. We go to the doctor on Tuesday to discuss the results of the test. I'll find out exactly what the test was. Meanwhile, we'll stay gluten free!

If you are going to be referred to a GI you may want to continue eating a full gluten diet because he will probably want to do an endoscopy with biopsy to confirm the diagnosis, which requires a full gluten diet for acccurate results.

sahm-i-am Apprentice
sahm-i-am
Posted

My daughter had tons of symptoms and yet her bloodwork came back negative. She did have the two genes for Celiac (forgot which ones) and both her dad and I tested positive for celiac disease. So, even though her tests came back negative she wanted to try the diet to see if it helped with her GI issues. A few weeks later she was right as rain! :D So, sometimes test results can be wacky, but listening to how your body responds is always a good way to go!

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
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    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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