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help interpreting results?

love2craft
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love2craft Rookie
love2craft
Posted

Hello everyone!

I am wondering if someone could help me interpret my celiacs blood test results. The blood tests were ordered by my PCP who is not knowledgeable on celiacs and I had to really push for the tests. It will take a few months to see a gastro so I am hoping someone with a bit more knowledge can help me out in the event that my PCP is unable or unwilling to explore a celiac diagnosis further. 

DEAMIDATED GLIADIN ABS, IGG - 23 units (standard range: 0 - 19 units)

DEAMIDATED GLIADIN ABS, IGA - 12 units (standard range: 0-19 units)

T-TRANSGLUTAMINASE (TTG) IGA - 5 U/mL (Standard range: 0 - 3 U/mL)

I also have the HLA-DQ2.5 haplotype on the HLA-DQA1 gene. I do not have the HLA-DQ8 gene.

Based on this information, should I seek out a gastro for further testing? I fear my PCP will not know how to interpret these results. Thank you. 

 

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trents Grand Master
trents
Posted
  • Solution

Two out of the three antibody tests are positive and you have one gene indicating the potential to develop celiac disease. Yes, I would seek further testing for confirmation but since you have already had the antibody testing done the next logical step is an endoscopy with biopsy. You also have the option of going on a gluten-free diet up until at least two weeks before the endoscopy when you should then go back on a gluten containing diet represented by 2 pieces of wheat bread daily or the gluten equivalent, according to the Mayo Clinic guidelines for the pretest gluten challenge for those having an endoscopy/biopsy. By that time, however, you might find that gluten will cause stronger reactions than before.

What are your symptoms? Can you live with them until the endoscopy?

love2craft Rookie
love2craft
Posted
  • Author

My symptoms are mainly 

1 minute ago, trents said:

What are your symptoms? Can you live with them until the endoscopy?

My symptoms are primarily gastrointestinal and some brain fog. I was actually gluten free for the last 18 months after identifying a sensitivity via an elimination diet. My PCP ordered the blood test without telling me about the gluten challenge so this is actually my second test, but the only one I have done since reintroducing gluten. Symptoms lately have been fine but I have admittedly not been eating a ton of gluten, only the 2 slices of bread a day as generally recommended. 

I am also still waiting for my Endomysial antibody IGA results. 

trents Grand Master
trents
Posted

So, how long were you back on gluten before the second antibody test?

love2craft Rookie
love2craft
Posted
  • Author
Just now, trents said:

So, how long were you back on gluten before the second antibody test?

3.5 weeks

trents Grand Master
trents
Posted

According to the Mayo, the gluten challenge preceding the antibody testing should last 6-8 weeks and two weeks for the endoscopy/biopsy.

love2craft Rookie
love2craft
Posted
  • Author
2 minutes ago, trents said:

According to the Mayo, the gluten challenge preceding the antibody testing should last 6-8 weeks and two weeks for the endoscopy/biopsy.

What does that mean for my results? Could/should they be higher?

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Scott Adams Grand Master
Scott Adams
Posted

Given the two positive blood test results it is likely that you do have celiac disease. The results would likely have been higher had you followed the 6-8 week protocol.

The normal next step would be an endoscopy to confirm, and you should continue eating gluten until all tests are completed. Here is more info on what your blood test results mean:

 

trents Grand Master
trents
Posted
(edited)
10 minutes ago, love2craft said:

What does that mean for my results? Could/should they be higher?

Yes, likely higher. Believe me, we get this same story over and over on the forum. I mean, docs failing to warn their patients not to go on a gluten-free diet until testing is complete. It's very frustrating because it often creates test results that are not definitive. Many docs are just ignorant about gluten related disorders or they have an attitude about it being the latest healthcare scare craze or fad disease.

Edited by trents
love2craft Rookie
love2craft
Posted
  • Author
10 minutes ago, trents said:

Yes, likely higher. Believe me, we get this same story over and over on the forum. I mean, docs failing to warn their patients not to go on a gluten-free diet until testing is complete. It's very frustrating because it often creates test results that are not definitive. Many docs are just ignorant about gluten related disorders or they have an attitude about it being the latest healthcare scare craze or fad disease.

Do you think I should ask my gastro to re-do the blood test?

trents Grand Master
trents
Posted
Just now, love2craft said:

Do you think I should ask my gastro to re-do the blood test?

No. I would move onto the endoscopy/biopsy.

love2craft Rookie
love2craft
Posted
  • Author

Would the Endomysial antibody IGA results change the two positive results? Indicate higher likelihood or is it already high?

love2craft Rookie
love2craft
Posted
  • Author
34 minutes ago, trents said:

No. I would move onto the endoscopy/biopsy.

I just received the results of my Endomysial Antibody IgA test and it was negative. How does this impact the rest of my results? Thank you so much for all your help!

trents Grand Master
trents
Posted
(edited)
1 hour ago, love2craft said:

I just received the results of my Endomysial Antibody IgA test and it was negative. How does this impact the rest of my results? Thank you so much for all your help!

The EMA is a less sensitive test than the tTG-IGA but it does carry a very specific affinity to celiac when it is positive. A negative for that one doesn't change my opinion. Your next logical step is to go back on regular amounts of gluten and arrange for an endoscopy with biopsy. Does the prospect of an endoscopic procedure make you nervous?

Edited by trents
love2craft Rookie
love2craft
Posted
  • Author
3 minutes ago, trents said:

The EMA is a less sensitive test than the tTG-IGA but it does carry a very specific affinity to celiac when it is positive. A negative for that one doesn't change my opinion. Your next logical step is to go back on regular amounts of gluten and arrange for an endoscopy with biopsy.

 

Thank you for the explanation. This has been so overwhelming as my PCP has been unhelpful but I have an appt with a gastro who can hopefully provide clarify and arrange a biopsy. 

Not nervous about the endoscopy, just dreading additional weeks of gluten. I tried to start gradually but my symptoms are really catching up with me. 

  • 3 months later...
love2craft Rookie
love2craft
Posted
  • Author

I wanted to share an update with everyone regarding my results in case this is helpful to anyone. I have been biopsied and received an official Celiac diagnosis today. 

trents Grand Master
trents
Posted

Thanks for the update. You have a leg up on this as you were already eating gluten-free before beginning the gluten challenge in preparation for the testing. Let us know if we can help with anything.

love2craft Rookie
love2craft
Posted
  • Author
2 minutes ago, trents said:

Thanks for the update. You have a leg up on this as you were already eating gluten-free before beginning the gluten challenge in preparation for the testing. Let us know if we can help with anything.

Thank you. I posted in the post diagnosis section that I am now looking for book/research recommendations and supplement recommendations. The switch to being SUPER strict with cross contamination is very daunting. 

Scott Adams Grand Master
Scott Adams
Posted

This article has some detailed information on how to be 100% gluten-free, so it may be helpful:

 

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      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
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