Help Interpreting My Lab Results? (updated)

[Jessica H]

Hello! I'm a new member, 39 years old, just figuring out based on my symptoms through research that I may have Celiac Disease. I took an Everlywell screening at home last week and yesterday had a Celiac panel done at my doctor's office. The results came in today. Are these numbers a pretty sure sign that I have Celiac? My doctor hasn't reviewed the results of the lab yet but I know these are all high. I'm just so worried that I've done so much damage to my body. My symptoms have been pretty mild but are becoming more noticeable over the last year. I just hope I can repair what damage has been done. This is all so new to me. Thank you for any information.

Gliadin Deaminated Antibody IgA - 21.0

Gliadin Deaminated Antibody IgG - 19.0

Tissue Transglutaminase IgA Ab - 128.0

Tissue Transglutaminase IgG - 27.0

Immunoglobulin A (IgA) - 167.0

[trents]

Welcome to the forum, @Jessica H!

We can't comment as you did not include the reference ranges for the various tests and there are not yet industry standards for the various celiac antibody tests that are available. Each lab creates the tests a little differently and uses their own scales. So, can you repost the info but with the reference ranges this time?

[Jessica H]

Hello! I'm a new member, 39 years old, just figuring out based on my symptoms through research that I may have Celiac Disease. I took an Everlywell screening at home last week and yesterday had a Celiac panel done at my doctor's office. The results came in today. Are these numbers a pretty sure sign that I have Celiac? My doctor hasn't reviewed the results of the lab yet but I know these are all high. I'm just so worried that I've done so much damage to my body. My symptoms have been pretty mild but are becoming more noticeable over the last year. I just hope I can repair what damage has been done. This is all so new to me. Thank you for any information.

Gliadin Deaminated Antibody IgA (Normal Value <7.0 U/mL) - 21.0

Gliadin Deaminated Antibody IgG (Normal Value <7.0 U/mL) - 19.0

Tissue Transglutaminase IgA Ab (Normal Value <7.0 U/mL) - 128.0

Tissue Transglutaminase IgG (Normal Value <7.0 U/mL) - 27.0

Immunoglobulin A (IgA) (Normal Range 70-400 mg/dl) - 167.0

[Jessica H]

Sorry about that, I just reposted with the reference ranges. I clearly don't know what I'm doing! : )

[trents]

The < value is the limit of normal. The last one, Immunoglobulin A (IgA) is not a celiac antibody test per se but what we call "total IGA" which is looking for IGA deficiency. If a person is IGA deficient, their IGA celiac antibody test scores will be artificially low which can result in false negatives. Total IGA "normal" is given as a range rather than a less than.

 

 

[trents]

Yes, all your test scores point to celiac disease. I think this is the first time I have ever seen all positives on a full celiac panel. But then, seldom do do physicians order a full celiac panel. Many or most will only order the TTG-IGA. By the way, your score for that one at 128 far exceeds 10x the upper limit of normal. In Europe, many doctors would grant you an official diagnosis of celiac disease on that alone. And diagnosing on high TTG-IGA scores alone is very slowly gaining traction in the USA.

But don't make the mistake of starting a gluten free diet until all testing for celiac is done. It is likely that your doctor may refer you for an endoscopy/biopsy to confirm the results of the antibody testing and you don't want to begin the gluten free diet until that is over or you may invalidate the outcome.

[Jessica H]

Thanks for the reply. I was assuming my score was pretty high and I was probably looking at a diagnosis. Do you think being 10x the upper limit signifies anything I should be more concerned about? I know they don’t use ‘stages’ anymore but would this indicate it’s pretty bad or not necessarily? I just don’t know how to interpret what that number could mean. It’s all kind of scary when I see how high it is compared to the norm. 

[trents]

They do use stages but only when evaluated the damage done to the villi of the small bowel after looking at the biopsy samples. I'm referring to the "Marsh" scale. As far as I know, "stages" has never been applied to blood antibody test scores.

It would not be appropriate to assign stages based on antibody scores as the damage done would depend not only the antibody levels in the blood at the time of testing but the duration of it and the intensity of it over time since the onset. And those are all very subjective things.

I understand your concern about irreparable damage done to body systems but you are fairly young and your body still has very good rejuvenation powers. Is there laboratory or medical evidence that anything other than the lining of your small bowel has been compromised yet? Do you have bone demineralization for instance or unexplained dental decay or neurological deficits? Stuff like that? It took 13 years to arrive at a diagnosis of celiac disease in my case from the first laboratory evidence (elevated liver enzymes) of onset and by that time I had developed osteopenia. I was 50 or 51 at the age of diagnosis.

[Jessica H]

No other testing has been done at this point, though I wonder if my diagnosis will prompt that. My main symptoms have been bowel related and I’ve had severe migraines for several years now but I’ve been seeing a neurologist for that and have it under control, though I now wonder if the migraines have been a symptom of Celiac all along. 

[trents]

Migraines are a recognized symptom of celiac disease. The incidence of it is higher in the celiac community than in the general population. It is one of mine.

Well, keep us posted. Do you have a follow up appointment scheduled yet? Again, let me stress that it is important to not begin the gluten free diet or even a reduced gluten diet until all testing related to celiac diagnosis is complete.

[Jessica H]

I've got my initial appointment with a gastro for a month from now and then I'm assuming we'll schedule my endoscopy from there for a confirmation of the diagnosis. I feel like it's pretty clear since my results are 18x the normal range but I know an endoscopy is the standard. I'll definitely post how that goes.

How are you doing with your osteopenia since your diagnosis? Have you found any relief? Thank you for the support and answering my questions. This is all kind of overwhelming. 

[trents]

Not sure about the state of my osteopenia. I haven't had a DEXA scan done since about age 50 and I'm now 74. No fractures, though. I have significant curvature of the upper spine (kyphosis) but that was well along by the time I was diagnosed with celiac disease almost 25 years ago. So, I think it may have been arrested at least.

[Jessica H]

Hi trents, just an update to my post, I had my follow up with my gastroenterologist. Scheduled my endoscopy for July 17th and got my biopsy results back July 28th. I have my official diagnosis now and I do in fact have Celiac disease. I'm slowly starting to switch my diet over to completely gluten free. My goal is to be completely gluten free after Christmas this year. I know I should be stopping completely now, but I am have a really hard time with change so my doctor told me I could do this gradually if it was easier for me. Now I know though and can make myself better with simple steps, no medication and have peace of mind knowing what I have is not the end of the world. Thanks again for your support. I've learned a lot over the last couple of months.

[trents]

Cutting out major sources of gluten in one's diet is pretty easy. It's the hidden sources where it shows up in products you would never expect to find wheat in (like soy sauce and Campbell's tomato soup, most canned soups, many pork n' bean products), medications, supplements, oral hygiene products, etc. that are the things that trip you up. And then there is eating out in restaurants where you order something that should be gluten free but it's cooked along with things that have wheat. Eating out is the biggest threat to eating gluten free. Achieving a truly gluten free diet involves a real learning curve.

It concerns me that you seem to want to ease into this gradually. That just sounds too casual to me and screams of not taking this seriously. The longer you put off achieving a truly gluten-free life style, the longer your body will continue to be harmed. In your first post in your thread you seemed concerned about harm that already might have been done. Now you seem to be singing a different tune.

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