Test results question

[asaT]

Just got ttg iga back. 14.8. Reference range gives under 15 as negative. When I look online, I see the range as under 4 negative, 4-10 weal positive, over 10 positive. Waiting on full panel results. I am 54, HLA DQ 2+, iron deficiency (ferritin 3) vitamin d deficiency (17), high homocysteine (B12, folate deficiency), symptoms:joint pain started with hip (had hip replacement) then all my other joints started hurting, fatigue, headaches, neuropathy. All other major diseases have been ruled out. I cut ot gluten a week ago and 90% better in every way. Thanks for your input!

[trents]

Welcome to the forum, asaT!

When you say you look online and get different range values for positive than what was stated for your test results, do you mean you looked at your own medical record report for this test?

You need to know that different labs use different reference ranges. There is no standard. You would need to compare your test result with the reference range being used by the lab that did the analysis.

Anyway, you should know more when you get the full panel results back.

[asaT]

Thanks for reply! Yes the range for the lab that did the test (quest) was under 15 negative and I was 14.8. I just thought there would be a standard so to speak and if other labs have over 10 as positive why would this lab use 15? Not sure how they arrive at these ranges as it seems to be the same test. It's all in their own interpretation of what is "normal" based on all of their test results using standard deviation and mean, that's what I thought anyway. I've never had the test before. More results are coming soon hopefully so will have a better idea of what is going on. I will probably have more questions, thanks for your help!

Asa

[asaT]

Actually the test was tissue transglutaminase IgG not igA and my test was 14.9 and under 15 is negative.

[trents]

Actually, I don't know why they don't have a standard reference range for each of these celiac antibody tests. But I know they don't. Someday there might be a standard but for now it may be a legacy phenomenon left over from the early days of when these tests were first developed which I believe was in the early 90's and everybody was sort of doing their own thing. We have a couple of forum moderators who have experience in medical laboratory settings who can probably give you a better answer.

[T burd]

5 hours ago, asaT said:

Actually the test was tissue transglutaminase IgG not igA and my test was 14.9 and under 15 is negative.

Did they do a full celiac panel or just Ttg iga? When I got my ttg iga the reference range was 1-3, and mine was 109… you are within range, so they would not diagnose you with that. After gluten free for 3 months my test showed 5, so slight positive. I had not really eliminated all gluten as I thought I had. 
 

having a negative ttg iga doesn’t mean you don’t have celiac for sure though. 
make sure to get high doses of vitamins until you build back up. My D was only at 24 when under 30 was low. Eating food cooked on cast iron pans can help your iron once you build it up. 

[asaT]

3 hours ago, T burd said:

Did they do a full celiac panel or just Ttg iga? When I got my ttg iga the reference range was 1-3, and mine was 109… you are within range, so they would not diagnose you with that. After gluten free for 3 months my test showed 5, so slight positive. I had not really eliminated all gluten as I thought I had. 
 

having a negative ttg iga doesn’t mean you don’t have celiac for sure though. 
make sure to get high doses of vitamins until you build back up. My D was only at 24 when under 30 was low. Eating food cooked on cast iron pans can help your iron once you build it up. 

Thanks for reply! It was the Ttg IgG, which I guess has a lot less sensitivity then the IgA as long as you are not IgA deficient. I have more bloodwork pending. I'm not sure why my  doctor (NP) ordered the IgG as that is usually only done if you are IgA deficient? Anyway, will have more info when the rest of the bloodwork comes in. I thought it was the Ttg IgA, which is a much better test. The results are taking forever though, it's been over a week.  super stressed just sitting around waiting. 

[RMJ]

The ranges are different because the units in which results are reported are different.  It is as if one test manufacturer used micrograms and one used ounces, but the celiac test units are arbitrary and there is no conversion factor for comparing them.

The reason?  There is no standard with known mass of antibody per volume of liquid.  To have a standard someone would have to purify a large enough quantity of the specific antibody in question, then determine very accurately how much they had. These antibodies are present in blood in very small amounts so purifying enough would be difficult, and really isn’t necessary. When the tests were developed they chose a cutoff value where most people with celiac disease tested positive and most people without tested negative.

[Scott Adams]

14 hours ago, asaT said:

Actually the test was tissue transglutaminase IgG not igA and my test was 14.9 and under 15 is negative.

This is where I say that you may still want to consider yourself a possible celiac. I say this because normal people would never score 14.9 on this test. You have the genetic marker for celiac disease, AND, more importantly, you have symptoms of it, including low iron and vitamin D.

Were you eating at least 2 slices worth of wheat bread per day for 6-8 weeks before the test? If not, this could be why your level was not higher, as that is the standard protocol for a celiac disease blood test.

[Wheatwacked]

On 10/4/2022 at 8:48 PM, asaT said:

high homocysteine (B12, folate deficiency)

Homocysteine is the toxic sludge of our metabolism. It is broken down (methylated) by Folate with B12  as a helper, Choline, and vitamin B6. 

Here's an interesting article. Association of metformin, elevated homocysteine, and methylmalonic acid levels and clinically worsened diabetic peripheral neuropathy

[asaT]

9 hours ago, Scott Adams said:

This is where I say that you may still want to consider yourself a possible celiac. I say this because normal people would never score 14.9 on this test. You have the genetic marker for celiac disease, AND, more importantly, you have symptoms of it, including low iron and vitamin D.

Were you eating at least 2 slices worth of wheat bread per day for 6-8 weeks before the test? If not, this could be why your level was not higher, as that is the standard protocol for a celiac disease blood test.

I was eating my "normal" diet. Which was in my mind not very low gluten. Pasta, whole wheat crackers, baked goods on a regular basis. Yeah calling my test negative at 14.9 when 15 is positive is not very comforting. I'm going a little nuts waiting. Hopefully my ttg iga will be back tomorrow. It will be 9 days which seems very long time waiting for the rest of the results of the panel. Is that normal for it to take this long?

[asaT]

23 minutes ago, Wheatwacked said:

Homocysteine is the toxic sludge of our metabolism. It is broken down (methylated) by Folate with B12  as a helper, Choline, and vitamin B6. 

Here's an interesting article. Association of metformin, elevated homocysteine, and methylmalonic acid levels and clinically worsened diabetic peripheral neuropathy

I have had high homocysteine for decades which makes sense with celiac, as that would explain why I have B12 and folate deficiency. Also have had low ferritin for 20 years, first time it was checked it was 6 in 2003. So this has been going on for a long time. Thanks for article! 

[Wheatwacked]

8 hours ago, asaT said:

that would explain why I have B12 and folate deficiency.

Malabsorption syndrome due to Celiac Disease would cause the deficiencies and the deficiencies in B12, Folate, Choline and/or B6 the reason for insufficient methylization of homocysteine. Take B12, eat beans for folate, take choline (or eat lots of eggs, milk and lean beef) and take B6. 

why folate from food, not folic acid supplement?

"a 2018 prospective study found that folic acid intake from fortified foods and supplements was positively associated with a risk of cancer recurrence among 619 patients with non–muscle-invasive bladder cancer, whereas natural folate intakes showed no significant association [73]. Higher plasma folate concentrations have also been associated with an increased risk of breast cancer in women with a BRCA1 or BRCA2 mutation [74]. A secondary analysis of the study by Cole and colleagues [70] found that folic acid supplementation significantly increased the risk of prostate cancer"   Folate Fact Sheet for Health Professionals

Those that tell you not to worry about high homocysteine are likely the same ones mistakenly implying that gluten free is a fad.

[asaT]

1 hour ago, Wheatwacked said:

Malabsorption syndrome due to Celiac Disease would cause the deficiencies and the deficiencies in B12, Folate, Choline and/or B6 the reason for insufficient methylization of homocysteine. Take B12, eat beans for folate, take choline (or eat lots of eggs, milk and lean beef) and take B6. 

why folate from food, not folic acid supplement?

"a 2018 prospective study found that folic acid intake from fortified foods and supplements was positively associated with a risk of cancer recurrence among 619 patients with non–muscle-invasive bladder cancer, whereas natural folate intakes showed no significant association [73]. Higher plasma folate concentrations have also been associated with an increased risk of breast cancer in women with a BRCA1 or BRCA2 mutation [74]. A secondary analysis of the study by Cole and colleagues [70] found that folic acid supplementation significantly increased the risk of prostate cancer"   Folate Fact Sheet for Health Professionals

Those that tell you not to worry about high homocysteine are likely the same ones mistakenly implying that gluten free is a fad.

Thanks Wheatwacked!!! I've always known the hcy is a problem, but doctors don't care about it because they don't have a pharma pill for it. thanks for reminder about folic acid. i was taking folinic acid, not sure if that is better, but methlyfolate always gave me headache. i'm going to stop though. i do eat beans everyday so hopefully folate will come up with just that and cutting out gluten. i'm glad to know the root cause of all my problems and blood work abnormalities. everything makes sense now and while i don't want to have celiacs, i'm sure that's what it is. the lab said it could take up to 16 days for the panel to come back. so i won't know for another week. is that a normal turn around time, 16 days????

[Scott Adams]

14 hours ago, asaT said:

I was eating my "normal" diet. Which was in my mind not very low gluten. Pasta, whole wheat crackers, baked goods on a regular basis. Yeah calling my test negative at 14.9 when 15 is positive is not very comforting. I'm going a little nuts waiting. Hopefully my ttg iga will be back tomorrow. It will be 9 days which seems very long time waiting for the rest of the results of the panel. Is that normal for it to take this long?

Let us know how that turns out, but not matter the results, it seems like trying out a gluten-free diet, at least for a few months, should be in your future. The time period on test results can vary a lot, so two weeks might be still in the normal range for some doctors/areas.

If your diagnosis isn't celiac disease (which I would still lean towards based on what you've shared here), then most certainly it would fall into the non-celiac gluten sensitivity area, and the outcome is the same--a gluten-free diet.

[asaT]

On 10/6/2022 at 1:47 PM, Scott Adams said:

Let us know how that turns out, but not matter the results, it seems like trying out a gluten-free diet, at least for a few months, should be in your future. The time period on test results can vary a lot, so two weeks might be still in the normal range for some doctors/areas.

If your diagnosis isn't celiac disease (which I would still lean towards based on what you've shared here), then most certainly it would fall into the non-celiac gluten sensitivity area, and the outcome is the same--a gluten-free diet.

Just got ttg iga back. It's 42.4 (reference range less than 15.) Ema was positive with titer 1:20 (reference less than 1:5). Is there any point in doing the scope with biopsy? I don't have appointment with g.i. doc until middle of Nov. I think the blood work is enough? Not sure how much my primary can help and not sure where to go from here. First symptoms were almost 40 years ago and feeling quite overwhelmed right now.

[trents]

I see no reason for you to go forward with the biopsy. When you look at the celiac antibody test scores, other subpar labs that point to celiac and classic symptoms, and improvement with the gluten-free diet, everything points to celiac disease. Unless, that is, psychologically you would need the additional confirmation in order to stay on track with the gluten-free diet.

[Maja57]

I was diagnosed in May 2022 with a antibody test with a reading of greater than 250. Had another bloodwork antibody test 5 months later and still reading greater than 250. Following gluten free diet. Why doesn't test show actual reading if above 250? I was so disappointed it hardened come down but without knowing how high it was to start with it could of come down but not enough to be below 250. Anybody else experience this?

[trents]

Welcome to the forum, Maja57!

Can you be more specific about which celiac antibody test was gave the 250 score? And can you also post the reference range for that test? Without the reference range used by the lab the raw number of 250 is not that meaningful. There are a number of antibody tests that can be run for celiac disease. Was the one you reference the tTG-IGA?

[Maja57]

Sorry newbie at this stuff. Tissue Transglutaminase Ab IgA

Range <12.0 U/ml

Result A >250.0 U/ml

 

[trents]

Thank you for the additional information. Your antibody numbers are still higher than what I would have expected after five months of truly gluten-free eating. But truly gluten-free eating is much more difficult to accomplish than most celiacs realize at the outset of the journey. It's easy to cut out the major sources of gluten in our diets such as bread and pasta but it's the hidden sources and cross contamination that are harder to get a handle on. As it turns out, studies have shown that most people who claim to be eating gluten free are actually eating lower gluten diets but not gluten free. This is especially true of those who continue to eat out as you have little control of cross contamination going on back in the kitchens of eateries. To eat truly gluten-free demands education and diligence. Gluten is found in places you would never expect like soy sauce and canned tomato soup (most all canned soups, actually), salad dressings, seasonings, some chocolate syrups and I could go on and on. It can also be found in pills and medications as wheat starch is sometimes used as a filler. A small amount of gluten make not be enough to make you feel ill but may be enough to keep the inflammation in the lining of your small bowel smoldering. This might help:

Having said all that, are you still consuming dairy products and oatmeal (even gluten free oatmeal)? The protein casein in dairy causes villi blunting in a significant percentage of celiacs and the protein avenin found in oats causes gluten-like reactions in about 10% of celiacs. You need to consider this, especially if you are eating truly gluten free.

[Maja57]

I guess I was just surprised that there wasn't any decrease in the reading even if there was an occasional contamination. I am lactose intolerant so have not consumed excessive amounts of dairy. Some cheese but no milk, yogurt, ice cream. Have had gluten free oatmeal once in 5 months. Read labels on everything. Buy from a gluten free only bakery. Checked with pharmacist for meds. Was also wondering if that bloodwork test ever shows an actual number if above 250 so I would know how far I have to go before I can see results thats its coming down.

[asaT]

54 minutes ago, trents said:

Thank you for the additional information. Your antibody numbers are still higher than what I would have expected after five months of truly gluten-free eating. But truly gluten-free eating is much more difficult to accomplish than most celiacs realize at the outset of the journey. It's easy to cut out the major sources of gluten in our diets such as bread and pasta but it's the hidden sources and cross contamination that are harder to get a handle on. As it turns out, studies have shown that most people who claim to be eating gluten free are actually eating lower gluten diets but not gluten free. This is especially true of those who continue to eat out as you have little control of cross contamination going on back in the kitchens of eateries. To eat truly gluten-free demands education and diligence. Gluten is found in places you would never expect like soy sauce and canned tomato soup (most all canned soups, actually), salad dressings, seasonings, some chocolate syrups and I could go on and on. It can also be found in pills and medications as wheat starch is sometimes used as a filler. A small amount of gluten make not be enough to make you feel ill but may be enough to keep the inflammation in the lining of your small bowel smoldering. This might help:

Having said all that, are you still consuming dairy products and oatmeal (even gluten free oatmeal)? The protein casein in dairy causes villi blunting in a significant percentage of celiacs and the protein avenin found in oats causes gluten-like reactions in about 10% of celiacs. You need to consider this, especially if you are eating truly gluten free.

when you remove casein from your diet, does it have to be as strict as gluten? is cross contamination and minute/trace amounts, accidental ingestion also a problem? would gee be oK because it is just the fat or would that be cross contaminated and therefore not allowed? I guess I have to give up dairy and that is going to be way harder then gluten!!

[trents]

42 minutes ago, Maja57 said:

I guess I was just surprised that there wasn't any decrease in the reading even if there was an occasional contamination. I am lactose intolerant so have not consumed excessive amounts of dairy. Some cheese but no milk, yogurt, ice cream. Have had gluten free oatmeal once in 5 months. Read labels on everything. Buy from a gluten free only bakery. Checked with pharmacist for meds. Was also wondering if that bloodwork test ever shows an actual number if above 250 so I would know how far I have to go before I can see results thats its coming down.

Since your test results were worded "greater than 250" I would assume 250 is the upper limit of whatever testing protocol that particular lab uses. What you need to know is that there are no standards for these celiac antibody tests. Each lab cooks up their own recipe. So, in that scenario it would be impossible to know if you have made significant progress in reducing your antibodies because you don't know what you started with. We sometimes see posters on this forum report higher numbers than yours but it's hard to compare since the labs all use different ranges. I can tell you that it typically takes two years or more for the SB villi to completely heal on a gluten free diet. By the way, there is a practical reason the labs all use difference reference ranges and why there is no standard. One of our forum moderators is a micro biologist and familiar with how medical labs do these things. She has explained the reason to us for it to be impractical to develop standards for antibody test ranges across laboratories but I didn't understand it. I think you would need to have been doing these things hands on as a lab tech in order to understand how they arrive at these protocols.

[trents]

26 minutes ago, asaT said:

when you remove casein from your diet, does it have to be as strict as gluten? is cross contamination and minute/trace amounts, accidental ingestion also a problem? would gee be oK because it is just the fat or would that be cross contaminated and therefore not allowed? I guess I have to give up dairy and that is going to be way harder then gluten!!

Lactose is the sugar in milk products and many celiacs are lactose intolerant. This intolerance often disappears once the villi have healed. Casein is one of the two major protein components in dairy, the other being whey. Sometimes people who have dairy intolerance do better with fermented dairy products such as yogurt and hard cheeses. The fermenting process breaks down some of the lactose and may alter the proportions of proteins.

I would suggest a trial period of say, two months, of giving up dairy altogether and see if symptoms improve. Then consider adding back in small amounts of fermented dairy products to see how well you tolerate them.