Question about antibodies

[seerwatch77]

Hello all! Like the title says, I have a question regarding antibodies.

My antibodies are still slightly elevated after almost a year on the gluten-free diet. I’m wondering if I might be getting some low levels of CC or is it normal during the healing process for the antibody concentration to plateau at a slightly elevated level?

Some background:

Blood test in Jan 2015: ATTG < 1

Blood test in Nov 2017: ATTG = 87

Biopsy at beginning of Feb 2018: marsh 3b/c

Blood test in August 2018: ATTG = 14

Blood test in Mid Jan 2019: ATTG = 9.5

The ranges I was given are: higher than 7 is a weak positive, higher than 10 is a strong positive for celiac.

I went gluten-free at the very beginning of February 2018, though still did stuff like eat out at normal restaurants (ordered gluten free and did the spiel but doubt they completely avoid CC). Stopped that in August 2018 that after finding gluten crumbs in my food and now only eat at dedicated gluten-free restaurants. I live with two roommates, one celiac and one not. Everything is separate (food, cookware, counters, cupboards, dishcloths) except we share plates, bowls, and cups which go through the dishwasher. I only buy whole foods and foods labeled as gluten-free, so there shouldn't be CC from any of that.

Because of the significant decrease from February to August and the slow decrease from August to January, I'm wondering if it is CC vs normal healing.

 

[cyclinglady]

It is hard to say.  Many reports indicate that TTG can take well over a year to come down, so you might need more time.  The fact it has come down a lot tells you that you are doing a good job avoiding gluten.    My antibodies (DGP IgA) were very elevated two years ago due to a gluten exposure (got hives, small intestinal issues, etc.). Almost a year later, they were still very elevated (high).  Because I was having new symptoms (GERD) my GI scoped me.  Turns out my small intestine healed (trialed the Fasano diet) but that I had developed chronic autoimmune gastritis.  We think my antibodies for celiac disease may increase due to my other autoimmune issues (Gastritis and Hashimoto’s).  It is an odd situation.  

Are you feeling good?  

[cristiana]

Although I was diagnosed in 2013, for some reason I fell through the system and my TTG levels were only tested again in November 2017.  (At diagnosis they were higher than 100 but I never knew by how much).

When I was tested again, my TTG levels were in the late 80s in November 2017.  I was referred to a nutritionalist, made some changes at home and stopped eating out and by April 2018 they were down to 40 and in October 2018 they were 14.  And during this time I took no risks and was really strict.  

I live in the UK.  Medical opinion may vary from the US but my own gastroenterologist isn't concerned - he says the important thing is that I stick to a gluten-free diet and that over all the levels are going down. 

Interestingly I had an endoscopy with several biopsies in April 2018 and my villi had completely healed (and that was when my levels were still at 40).

Unfortunately I suspect they would be above 14 again at the moment as I was glutened before Christmas.   I won't have my next test til September but hope my levels are as good as yours next time.?

[seerwatch77]

I'm feeling better than I was last year, but not entirely good. I'm planning to cut down on sugar and remove dairy from my diet once I finish the foods I have right now. Currently, I eat cheese and yogurt but will switch to just lactose-free yogurt and no other dairy and see if that helps.

My gastro told me they were still too high but didn't seem overly concerned.

I have a repeat biopsy scheduled for February, so I'll see how my villi are doing then.

[cyclinglady]

I wanted to add that the antibodies tests for celiac disease were designed to help diagnose and NOT monitor celiac disease.  Why do doctors reorder them to check for dietary compliance and possible healing?  Because they are the only non-evasive tool in the tool box.  You know....better than nothing.  

The TTG can remain elevated slightly for other autoimmune disorders.  Not saying you have something else, but it is something to keep in the back of your mind.  

[cristiana]

Thanks for this cyclinglady.  I'd forgotten that.   I wonder how many coeliacs are beating themselves up about cc when in fact it has nothing to do with it.

I've always had a suspicion that I'm not fighting just the one autoimmune issue.

[seerwatch77]

On 1/24/2019 at 4:48 PM, cyclinglady said:

I wanted to add that the antibodies tests for celiac disease were designed to help diagnose and NOT monitor celiac disease.  Why do doctors reorder them to check for dietary compliance and possible healing?  Because they are the only non-evasive tool in the tool box.  You know....better than nothing.  

The TTG can remain elevated slightly for other autoimmune disorders.  Not saying you have something else, but it is something to keep in the back of your mind.  

Assuming a celiac person does not have any other autoimmune conditions, wouldn't testing antibodies be a decent indicator of dietary compliance? Maybe not to the level of detecting small amounts of gluten ingestion, but it should indicate if the person has regular amounts of gluten in their diet (i.e. someone who didn't realize beer had gluten).

[cyclinglady]

Retesting for antibodies can be helpful.  My GI uses the antibodies test to help determine is my celiac disease is active, but they are not perfect.  If you really want to know, the best way is to repeat the endoscopy to obtain small intestinal biopsies.  Looks like you are doing that in February.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5295090/

Your Roomates?  Be wary of flour when they are baking.  Do not drink gluten removed beer!  With all this oat controversy, I would avoid those too no matter how they are processed until you are feeling well.  Avoiding oats was advised in the old days.  I think it is good advice still, but that is my personal opinion.  

 

[seerwatch77]

Whoops, I totally misunderstood and thought you were saying that they were not at all useful. My bad. 

I do avoid oats and gluten-removed beer. I am hoping to introduce oats at some point, but have been following the Canadian Celiac associations guidelines which say your antibodies should have come down and you should be feeling better. Luckily it is mainly me and my other celiac roommate who bake and use flour. When my gluten-eating roommate does, I avoid the kitchen for the next day and then clean the kitchen well and she does all the mixing etc in the part of the kitchen farthest from our food and counter.