Diagnosed November 2020 and new Blood Test Results.

[jackmac32]

Hello,

56 Y.O. Male here.  I was diagnosed about 2 years ago based on Low Iron symptoms (I also have Hemochromatosis) and numb feet and hands.  Endoscopy confirmed the Celiac, but I didn't feel the need to do the blood test at the time.  I've been on the gluten-free Diet since November 2020.  I Still have some numbness so I went to have a blood test 2 weeks ago.  Results are below:

 

Tissue Transglutaminase IgG Ab 4.7 U/mL. (15 Ref)

Tissue Transglutaminase IgA Ab 64.4 U/mL (15 Ref)

Gliadin (Deamidated) Ab, IgA 9.0 U/mL (15 Ref)

Gliadin (Deamidated) Ab, IgG 5.9 U/mLU/mL (15 Ref)

Immunoglobulin A 274 mg/dL (47 - 310 Ref)

 

If I was truly gluten free, would my numbers be zero (0)?    Am I still getting gluten in my body?   Thanks for any commments.

 

 

[trents]

2 minutes ago, jackmac32 said:

Hello,

56 Y.O. Male here.  I was diagnosed about 2 years ago based on Low Iron symptoms (I also have Hemochromatosis) and numb feet and hands.  Endoscopy confirmed the Celiac, but I didn't feel the need to do the blood test at the time.  I've been on the gluten-free Diet since November 2020.  I Still have some numbness so I went to have a blood test 2 weeks ago.  Results are below:

 

Tissue Transglutaminase IgG Ab 4.7 U/mL. (15 Ref)

Tissue Transglutaminase IgA Ab 64.4 U/mL (15 Ref)

Gliadin (Deamidated) Ab, IgA 9.0 U/mL (15 Ref)

Gliadin (Deamidated) Ab, IgG 5.9 U/mLU/mL (15 Ref)

Immunoglobulin A 274 mg/dL (47 - 310 Ref)

 

If I was truly gluten free, would my numbers be zero (0)?    Am I still getting gluten in my body?   Thanks for any commments.

 

 

Welcome to the forum, jackmac32!

No, eating truly gluten free does not equate with "0" antibody scores. But it should equate with negative scores instead of positive scores in relation to the reference ranges.

This one might be cause for concern if you have been truly gluten-free for two years: Tissue Transglutaminase IgA Ab 64.4 U/mL (15 Ref). Th tTG-IGA is the centerpiece of celiac disease antibody testing. Among the various antibody tests that can be run it is considered to combine good sensitivity with good specificity for celiac disease. 

But two things need to be said here. First, without any numbers pre gluten free to compare the tTG-IGA result with, it may not be concerning if before gluten-free it was much higher. Actually, it can take longer to subside than most people realize. Second, there are other medical conditions and some meds and foods that can cause the villi to be damaged and, I assume, would create high antibodies like celiac disease would: https://www.celiac.com/celiac-disease/what-causes-villous-atrophy-besides-celiac-disease-r5550/#:~:text=Small intestine Bacterial Overgrowth%2C or SIBO&text=Other possible causes of villous,pylori%2C also have been reported.

Then there is the fact that most people who think they are eating gluten free really are only lowering their gluten intake because of cross contamination issues and lack of awareness of hidden sources of gluten such as wheat starch being used in pills and oral hygiene products. This might be helpful: 

Studies have shown that eating out is the #1 sabotager of the gluten free effort. Do you still eat at restaurants frequently?

After closely examining your current eating habits for unexpected and hidden sources of gluten, I would suggest you get another antibody test in about a year to see if that tTG-IGA is dropping. If so, take heart. The numbness in hands and feet may be due to celiac neurological damage that may or may not ever be completely reversed.

 

[jackmac32]

Thank you for the reply!  My Iron and Ferritin levels have gone up substantially, so my doctor is confident the Villi are healing.  The issue must be eating out.  I've been ordering lots of dishes with "Gluten Free Pasta" at restaurants... I'm assuming perhaps they use the same water as the regular pasta?!

[trents]

7 minutes ago, jackmac32 said:

Thank you for the reply!  My Iron and Ferritin levels have gone up substantially, so my doctor is confident the Villi are healing.  The issue must be eating out.  I've been ordering lots of dishes with "Gluten Free Pasta" at restaurants... I'm assuming perhaps they use the same water as the regular pasta?!

I would not be surprised at all if they cooked the gluten-free pasta in the same water as wheat spaghetti noodles. Scott Adams, the founder and administrator of celiac.com tells the story of that exact thing happening to him when eating out at an Olive Garden. They boiled the gluten-free noodles in the same pot as they were using for wheat noodles. He got ill from eating there.

Now, going back to your numbness, what vitamin and mineral supplements are you taking to promote neurological health and healing?

Edited August 4, 2022 by trents

[jackmac32]

Magnesium and a multi-vitamin.  

[trents]

Good start. Make sure they are gluten free. But for neurological health you probably should be taking a high potency B-complex and D3 as well. Costco's Nature Made and Kirkland brands are a good choice and will clearly state on the label if they are gluten free. You needn't worry about toxicity when taking high doses of B vitamins as they are water soluble and any excess is peed out.

[jackmac32]

34 minutes ago, trents said:

Good start. Make sure they are gluten free. But for neurological health you probably should be taking a high potency B-complex and D3 as well. Costco's Nature Made and Kirkland brands are a good choice and will clearly state on the label if they are gluten free. You needn't worry about toxicity when taking high doses of B vitamins as they are water soluble and any excess is peed out.

Sounds good.  Thank you for all the help!

[Kate333]

Don't be discouraged that your blood test level isn't yet in the normal range after less than 2 years of a gluten-free diet, esp. if your highest numbers at time of diagnosis were well over 100. Many people (esp. older folks) take a bit longer to heal and flush the G antibodies out their systems.  Just keep in mind the trend (the numbers should show consistent decline with each blood test).   In that context, perhaps 64.4 isn't unusual for you after only 18 months on a gluten-free diet. 

In my case, my G blood test level was 224 at diagnosis (in late 2019) and didn't reach the normal level (under 15) until early 2022.  As Trents said, it is vital to minimize any possibility of CC.  I did that by avoiding all processed/packaged foods and restaurants (even those touting gluten-free labels, gluten-free menu claims) which aren't really regulated, tested to ensure accuracy.  I basically just bought/cooked all fresh foods (meat, veggies, fruits).  After doing that, I noticed my numbers began to more rapidly decline (by 50% with each subsequent blood test every 3-4 months).   Also, if you live with others, make sure you have your own set of plates, pots/pans/utensils, cutting boards and don't eat anything prepared by others who eat G. 

Good luck on your healing journey!