Really high celiac test results; what do the numbers mean beyond diagnosis?

[bwells]

I am 56 years old.  I have Hashimoto's Thyroiditis. I am quite overweight.  Genetic testing results indicated I am at-risk for Celiac Disease.  I am asymptomatic for Celiac, but asked for Celiac testing due to family history of Celiac Disease. The test results are as follows:

Deaminated Gliadin IgA Antibodies     59.8 U/ml

Deaminated Gliadin IgG Antibodies    >2500.0 U/ml

TTG IgA Antibodies   447.9 U/ml

TTG IgG Antibodies   589.0 U/ml

Do these numbers have implications beyond the need to eat gluten-free? Why am I still asymptomatic when the numbers strongly suggest Celiac Disease?  I appreciate you taking the time to explain this to me. Thank you. 

[Scott Adams]

Welcome to the forum! 

Can you also share the cut off markers of each test results for their positive level? Each lab uses a different scale so it's hard to tell exactly where you fall based on just the numbers you shared.

To answer your main question though, many celiacs are asymptomatic, or have symptoms that may seem unrelated, but go away once someone goes gluten-free. 

Before you go gluten-free ask your doctor if they want to do an endoscopy and biopsy to confirm the results. Going gluten-free before the biopsy can cause false negative results, as any villi damage might heal once you go gluten-free.

[bwells]

The lab reference range is <15.0 U/ml for each of the 4 tests. The  doctor mentioned to me she had never seen test result numbers so high and emphasized the need to eat a gluten free diet.  Although I remain unsymptomatic, sister has celiac and is highly symptomatic if she accidentally ingests gluten. I had an upper GI biopsy 12 years ago when my sister was 1st diagnosed and the biopsy results indicated some blunting of the villi tips though my intestines appeared healthy (not inflamed).  My GI doctor told me that I could possibly have celiac but I did not have to go gluten free until I manifested symptoms, and then I would need to remain gluten free for the rest of my life.  My GP doctor who has since retired told me that if I truly had celiac, I would be rail thin (definitely not me). Since then, I had the genetic testing to try to rule out the possibility of celiac only to find out I had 2 copies of the HLA-DQA1 gene.  That was a bummer.  I could get another upper GI biopsy, but given the preponderance of evidence I am not sure another biopsy is necessary to convince me I have celiac disease.  

[Scott Adams]

Unfortunately your doctor was incorrect about celiacs all being skinny, actually many can be obese because they overeat because they feel like they are starving due to vitamin and mineral deficiencies. 

Because your sister has it means your chance of having it is around 44%. Given your test results, which are incredibly high, and your family history and genetic markers, I agree that you may not need a biopsy to confirm this, but be sure to discuss this with them. Even without symptoms your health risks are the same.

[MADMOM]

23 hours ago, Scott Adams said:

Unfortunately your doctor was incorrect about celiacs all being skinny, actually many can be obese because they overeat because they feel like they are starving due to vitamin and mineral deficiencies. 

Because your sister has it means your chance of having it is around 44%. Given your test results, which are incredibly high, and your family history and genetic markers, I agree that you may not need a biopsy to confirm this, but be sure to discuss this with them. Even without symptoms your health risks are the same.

i would say the blunting is a clear indicator of celiac - your levels are extremely high as well - id urge u to start eating gluten free and see how healthy you will become 👍🏼i saw my GI  on 8/13 to get my blood work done - 7.5 months post dx - my IgG and IgA levels initially were 156 and 106 and today i’m happy to report that they’ve dropped to 31.2 and 51.5 -the normal range is <19.9 on both  also my iron and ferritin saturation which used to be so low 7-8% is now 27% - all of my levels on my cbc panels are all normal where they were always abnormal - i feel better my skin and eyes look healthier and i’ve gained weight which is the only thing i didn’t want because i wasn’t underweight before! my GI dr says i look so much better and impressed with my hard work / in 3-6 months i’m hoping i get into the normal range - i had to share because i’m so happy 😌

[bwells]

Thank you for your words of encouragement.  It is reassuring know that eating a gluten-free diet is effective and your body is healing.  

[Eugenia Carvalho]

I am also had ferritin low <30 (funcional ferropenia) and ferritin saturation < 19%, my family doctor initially said it was ok, and I couldn't almost walk. 

Then the celiac disease doctor gave me folate, B12  and Iron, the ferritin is already 38% and Ferritin saturation 21%, and I already feel a lot  better. 

But because I took probiotic before testing, may villy are already recovering the gastroenterologist didin't said right away she's celiac. I have 3 HLA positive genes for celiac, with I prevalence. 

And I'am a bit overweight......

 

[Beverage]

Before I was diagnosed, I was 30 lbs overweight. Dropped it all and more in a month after going gluten free, I was a skeleton underneath. It's taken me 5 years to put back on muscle after that.  The naturopath that diagnosed me said that he regularly has patients that are 100 lbs and MORE overweight, some even 300 lbs overweight before diagnosis. So yea, your doctor is not knowledgeable about Celiac's, so take that as a strong sign that you need a new doctor, it will save you with misdirection or bad information in the long run.