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Input on my test results

Boymama
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Boymama Newbie
Boymama
Posted

Can someone please help me understand my results?  I’ve been trying to get answers for almost ten years and I haven’t heard from my doctor yet.  I’d really like to know if celiac is a possible diagnosis. 
 

TISSUE TRANSGLUTAMINASE
IGA (U/ML)
Your value
<0.5 U/mL
Standard range
<=14.9 U/mL
DEAMIDATED GLIADIN
PEPTIDE IGA, QUALITATIVE,
EIA
Your value
149.3 U/mL
Standard range
<=14.9 U/mL
TISSUE
TRANSGLUTAMINASE+DEAMID.
GLIADIN PEPTIDE AB INTPN

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Russ H Community Regular
Russ H
Posted
4 minutes ago, Boymama said:

Can someone please help me understand my results?  I’ve been trying to get answers for almost ten years and I haven’t heard from my doctor yet.  I’d really like to know if celiac is a possible diagnosis. 
 

TISSUE TRANSGLUTAMINASE
IGA (U/ML)
Your value
<0.5 U/mL
Standard range
<=14.9 U/mL
DEAMIDATED GLIADIN
PEPTIDE IGA, QUALITATIVE,
EIA
Your value
149.3 U/mL
Standard range
<=14.9 U/mL
TISSUE
TRANSGLUTAMINASE+DEAMID.
GLIADIN PEPTIDE AB INTPN

Oh yes. Do you have any more information - symptoms, test results (total iGA for example)?

Boymama Newbie
Boymama
Posted
  • Author
2 minutes ago, Russ314 said:

Oh yes. Do you have any more information - symptoms, test results (total iGA for example)?

I think this is all my doctor tested for. It’s the first thing to come up abnormal.  I’ve had neurological symptoms with no answers for many years. Doctors have been dismissive.  They just kept checking for ms but all mri scans have been normal. I’ve had chronic constipation and bloating my entire adult life.  I get those itchy blisters on my fingers and bottom of my feet. Also fatigue, loss of balance, numbness and tingling. Lots of strange symptoms over the years. Am I considered iga deficient? 

trents Grand Master
trents
Posted

The results you posted did not include a total serum IGA so I assume your doctor did not test you for this, which should have been done. It sounds like you probably know already that low total IGA can result in false negative tTG-IGA scores. The tTG-IGA is considered the best one test to order since it combines good specificity with good sensitivity. Was there any m

On the other hand, your doctor did order a secondary test which can also diagnose celiac disease, the DEAMIDATED GLIADIN PEPTIDE IGA, which was unequivocally positive.  And you have several symptoms which are common to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). And your "itch blisters" sound like they could be dermatitis herpetaformis (DH) which is a lock for celiac disease.

By any chance, were you already trying to eat gluten free when your blood sample was taken? Don't try to go gluten free until all testing is complete. Your doctor may want to arrange for an endoscopy/biopsy.

Russ H Community Regular
Russ H
Posted
Just now, Boymama said:

I think this is all my doctor tested for. It’s the first thing to come up abnormal.  I’ve had neurological symptoms with no answers for many years. Doctors have been dismissive.  They just kept checking for ms but all mri scans have been normal. I’ve had chronic constipation and bloating my entire adult life.  I get those itchy blisters on my fingers and bottom of my feet. Also fatigue, loss of balance, numbness and tingling. Lots of strange symptoms over the years. Am I considered iga deficient? 

You could be IgA deficient, but it needs to be tested for. It is also possible to have coeliac disease and test negative for transglutaminase antibodies without being IgA deficient. It is a complex immunological condition. Certainly, your symptoms could be caused by coeliac disease. I had neurological symptoms and unusual skin complaints prior to diagnosis. All resolved now.

Boymama Newbie
Boymama
Posted
  • Author
1 minute ago, trents said:

The results you posted did not include a total serum IGA so I assume your doctor did not test you for this, which should have been done. It sounds like you probably know already that low total IGA can result in false negative tTG-IGA scores. The tTG-IGA is considered the best one test to order since it combines good specificity with good sensitivity. Was there any m

On the other hand, your doctor did order a secondary test which can also diagnose celiac disease, the DEAMIDATED GLIADIN PEPTIDE IGA, which was unequivocally positive.  And you have several symptoms which are common to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). And your "itch blisters" sound like they could be dermatitis herpetaformis (DH) which is a lock for celiac disease.

By any chance, were you already trying to eat gluten free when your blood sample was taken? Don't try to go gluten free until all testing is complete. Your doctor may want to arrange for an endoscopy/biopsy.

Years ago I followed a paleo diet and I definitely felt better but my symptoms didn’t go away completely so I stopped.  But I also wasn’t 100% gluten free.  Lately I have been eating low carb so naturally eating less gluten. I didn’t know he was going to test for celiac.  I started eating gluten these last few days in case a biopsy was the next step.  I definitely don’t feel well, fatigue, brain fog and the itchy rash showed up. 

Mmkay24 Newbie
Mmkay24
Posted

I could have written this myself! My symptoms are the same and I also tested strong positive for gliadin peptide iga. I haven’t spoken to my doctor yet but I am also curious if this is positive. I also have a strong family history or celiac/auto immune disorders. 

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trents Grand Master
trents
Posted

Welcome to the forum mMkay24!

You say that your gliadin peptide IGA was strongly positive but then you say, "I am also curious if this is positive." Those two statements seem at odds with one another. What exactly are you asking about as being positive? Can you please post the whole of the test results, along with reference ranges?

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    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
      Waiting on biopsy results but wanted opinion on bloodwork

      By trents · Posted

      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
    • trents
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      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
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      By Rogol72 · Posted

      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
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