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Help with test results

Rebekah3

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Rebekah3 Rookie
Rebekah3
Posted

My endocrinologist (I'm a type 1 diabetic) recently ran celiac tests on me, which came back 'positive for celiac'. What I'm curious about is if there is a range to how 'positive' one can be and with my values if there is a chance the biopsy (yet to be scheduled) will come back negative. I'm still eating gluten and my appt with the gastroenterologist is in about 2 weeks. AM i guarenteed to need the biopsy? What should I expect? Please express to me how important it is to not have even 'just a little' or anything like that. With the holidays coming and my pushy family, I need a reality check! My results are as follows:

 

ComponentStandard RangeYour Value
ENDOMYSIAL ANTIBODY IGANegative

Positive

ComponentStandard RangeYour Value
DEAMIDATED GLIADIN ABS, IGA0 - 19 units89
T-TRANSGLUTAMINASE (TTG) IGA0 - 3 U/mL67
IMMUNOGLOBULIN A, QUANT, SERUM91 - 414 mg/dL298
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nvsmom Community Regular
nvsmom
Posted

You are positive in every celiac test given.  (The immunoglobulin A was just a control test.) It doesn't get more positive than that.  The EMA IgA is 98% specific to celiac disease alone.  With two other positives, it is a sure thing that you have celiac disease.  :(

There's a good chance the doctor will still want to biopsy you. You can do it or not.  Three positive and T1D makes it a sure thing though.  Do whatever you are comfortable with.  Be aware though that a negative biopsy will just mean that they missed the damage. It would not mean that you are negative for celiac disease, it just wouldn't support the diagnosis.

You can never have a little bit.  You'll need to skip the butter if it has ever been used on regular bread. You can't use other people's toasters anymore.  You even have to be careful of gluten-free foods that people make for you because the something may have been contaminated or they slip up, like using soy sauce or using suar that had a flour coated measuring cup dipped into it once.  You can't even order french fries that were fried in an oil that was used on the breaded chicken nuggets. We're talking strict strict.  Check all medication strict. :(  It's a hassle but it will improve your health in the long run.

Best wishes.  I hope you have a speedy recovery and are seeing improvements by Xmas

squirmingitch Veteran
squirmingitch
Posted

There is no "I am a little celiac" just like there is no "I'm a little bit pregnant" --- you are or you aren't and you ARE celiac.

Here's a link to the Newbie 101 which will give you details on what you need to do to protect yourself & eat truly gluten free:

You can't have a tiny crumb of gluten - not 1. 

cyclinglady Grand Master
cyclinglady
Posted

Welcome!  I just want to add that all your first-degree relatives should be tested for celiac disease too.  It is genetic and you can be asymptomatic.  Celiac disease can be activated at any age! 

I wish you well!

Rebekah3 Rookie
Rebekah3
Posted
  • Author

Thank you all for the responses and the info! I have two little boys that I am going to push to be tested and I'm also going to let my parents and brothers know to look out for it as well. So it sounds like based on have all positive blood tests, I need to accept the diagnosis and move on to a Gluten Free life. Thanks so much for the support and stressing the importance of not having any gluten. not even a little bit! I'm a people pleaser, so this will be tough. I hate saying no and pushing back.... but I guess I need to learn! Thanks again!

squirmingitch Veteran
squirmingitch
Posted

Learn to say no and push back. Celiac disease, left untreated, can indeed kill you. I know you want to be around for your 2 little boys so for their sakes, learn to say NO firmly.

Also, I want to add to the info. of 1st degree relatives getting tested. Tested every 2 years ~~~ or sooner if symptoms present. Celiac can present anytime & that's why 1st degree relatives need to be tested on a regular basis.

Celiac is a very serious disease and yet we can easily treat it by simply not eating gluten. Amazing isn't it? No pills, no chemo, no shots; just keep gluten out of your diet. At first it's completely daunting & there is a very steep learning curve to the diet but after a while I guarantee it becomes second nature and you can look forward to feeling MUCH better!

squirmingitch Veteran
squirmingitch
Posted

Here are some links for you & you could print these out & give them to your relatives so they will better understand celiac disease and why you must be so vigilant in your diet as well as why they need to be tested and what symptoms are associated with it. Also, there are silent celiacs who present with ZERO symptoms yet still have the disease & damage to their gut so let them know that too.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

And finally, give your family members a copy of the Full, current celiac disease blood panel so they can take it to their doctor & make sure they get the full panel because many doctors don't know (believe it or not) & end up just doing 1 or 2 of the blood tests. They need to do ALL of them:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

The DGP test was added recently to the full panel.


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

 

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Rebekah3 Rookie
Rebekah3
Posted
  • Author

This is very helpful! Thank you! I feel more informed for my upcoming appointment with the gastroenterologist. And also more prepared for asking the pediatrician for testing. Thank you so much!

squirmingitch Veteran
squirmingitch
Posted

You're very welcome!:)

Don't hesitate to ask if you have any more questions. And please let us know how things turn out.

 

OH! And do NOT stop eating gluten until all testing is done & that includes an endoscopy of the doc wants to do one.

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      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
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