Understanding test results

[Rosie282 0]

Hi, I'm new here. I was diagnosed 5 months ago. I have a question about interpreting my test results.

Originally, my TTG IgA was 130 (normal is below 15),  deamidated gliadin IgA was 50 (normal below 15) and deamidated gliadin IgG was 22 (normal below 15).

I asked my doctor, if I needed a biopsy, but he said it was unnecessary.

4 1/2 months later my TTG IgA was 30,  deamidated gliadin IgA was 7 and deamidated gliadin IgG was 6.

From what I have read, it is pretty normal for the TTG to take a while to go down to normal, but my doctor insisted it was elevated because I'm still ingesting gluten. I've been very careful and read a lot about celiac disease. I'm confused about whether I'm not strict enough or I just need to wait for it to go down?

What does it mean that the deamidated gliadin antibodies are now normal? Can they be normal even if I ingest gluten?

The only stomach problem I have is bloating, which is better, but not gone. So I can't tell if I get glutened.

Thanks, I would really appreciate an answer. I'm pretty confused :-)

[cyclinglady 1,663]

Welcome!  Congratulations!  You are doing a great job on the gluten free diet.  Really.

The celiac antibodies tests are not perfect, it is one reason a biopsy is normally recommended by most gastroenterologists who are celiac-savvy.  But your numbers were quite high in the beginning and they have gone down.  It can take  year or longer for them to hit the normal range and no one ever hits zero (the tests are not that accurate).  

https://gi.org/guideline/diagnosis-and-management-of-celiac-disease/

The goal is to keep your antibodies on a downward trend.  If glutened , they will increase again.  Just keep moving forward and do not beat yourself up over an accidental glutening.

It takes most of us a year or more to recover.  Why?  Accidental exposures to gluten, extensive damage to areas even beyond the gut, and intolerances to Foods other than gluten (a temporary lactose intolerance is common). 

Keep up the good work!  

 

[Rosie282 0]

Thanks a lot for your swift answer. It was very encouraging to hear what you had to say! I look forward to reading the linked-to article.

On one hand, it's good to have something wrong that one can actually fix via one's diet, on the other hand it sometimes seems like a major production and a pain in the neck. Especially socially and while travelling. I also wonder, if I can trust restaurants with gluten free menus. At home it's not so hard, and I actually eat healthier now than I used to. It sounds like I'm on the right track, so that's good.

Thanks again!

[cyclinglady 1,663]

I do not trust restaurants with gluten free menus -- not without grilling the waiter, manager and chef.  I literally get up and head to the kitchen.  If I have any doubts, I just order a drink.   I often try to investigate the restaurant in advance or look at "Find Me Gluten Free" website, but even then, I look for reviews and ratings posted by celiacs.  

I always have food with me just in case! 

 

[Rosie282 0]

Thanks for the advice! I just started using the app for Find Me gluten-free, and it's helpful. 

I went to dinner with friends the other day and the restaurant had no gluten free desserts. (They seemed serious about the gluten free issue in general). I should have ordered a cup of tea or something else to drink instead, as you suggested. My friends seemed awkward enjoying there food with me just sitting there not doing anything. Lots of little things to learn :-)

[Gemini 871]

You know, Rosie, it is perfectly OK to eat out when gluten free but it does take awhile to learn the ropes as far as what is safe.  I would not recommend eating out on a regular basis but occasionally or when traveling, it can be done quite successfully.  The FindMeGlutenFree site has reviews by other Celiac's and they do a pretty good job of helping to make that decision on whether or not a place is safe, easier. With each passing year, if you do your homework and ask questions, it becomes easier and easier to do. Just make sure to identify yourself as a Celiac when ordering so they know to take you seriously. I find that makes a difference because of all the fad dieters...or the Celiac's who cheat. They will not take you seriously if you order a gluten-free meal and then eat the bread and that happens often enough that servers tell me about it.

Your doctor is wrong...you are doing great! Having your DGP go down so well means you are not ingesting any gluten. You have brought your antibodies down well from very high in only 5 months so pat yourself on the back!  I, too, was diagnosed with blood work only because all my numbers were in the ridiculously high range.....no need for a biopsy. The bloating you are having may be from dairy.  Have you cut that out or cut way back on it?  I can still only eat dairy lite but am comfortable with that. The ability to digest dairy is compromised in many Celiac's due to villi damage but some get it back once they heal.  That may be what's causing it. Dairy is a known bloater! 

[Rosie282 0]

Hi Gemini, thanks for the encouragement! I don't know anybody with celiac disease that I know of, so it's nice to hear from people who have experience with it.

I have cut way back on eating out, but it's still nice to know I can go out once in a while. At least the cutting back has saved me quite a bit of money to offset the extra cost of the celiac diet :-). 

You are the first one I have heard of who also didn't have a biopsy to confirm celiac disease. Everywhere I read it said that you have to have one, except, I think, little children. I could only find one article where some researchers were debating if the right combination of tests above certain values may be enough for adults in the future. It did sound like that may be the case, but didn't really fit with my doctor saying that nobody uses biopsies anymore.

Thanks for the info about dairy. I happen to love dairy and use it a lot as a quick source of proteins since I'm vegetarian. I have noticed though that if I eat eggs and potatoes or fish, I don't have the bloating. So I think I will try leaving it out. Do I have to cut all dairy out for a while or can I still use yogurt-like products?

Another thing I have wondered about is whether it's necessary to see a dietitian? I have rearranged my diet so much that I wonder if I'm getting all the nutrients that I need now. (I asked my doctor to check my B-12 which was okay, but had nothing else checked). It's just that I frequently feel very tired for no reason. I had hoped that the celiac disease diet would have helped, but don't really feel that it has much. I do have a greater sense of well-being than before I was diagnosed, so that's good. Maybe I just need to be patient.

 

[squirmingitch 696]

You can try just eating aged cheeses & yogurt & see if you still get the bloating. With yogurt & the aged cheeses, the enzymes have pretty much taken care of the lactose in the milk so many find they can tolerate those kinds of dairy. 

[Rosie282 0]

Thanks, squirmingitch! I will try that first.

[squirmingitch 696]

YVW! I would hate to see you do without all dairy if it isn't necessary. I love dairy!!!!