1 Year Post-Diagnosis/ Lab Results :-(

[veruca]

I was diagnosed last year with celiac disease.

These are my results from one year ago:

Test Results:

IgG DGP IgG 143.0 EU/ml

IgA DGP IgA 65

IgA ELISA TTG IgA >128.0 U/ml

EMA IgA positve

total IgA 83 mg/dl

I just got results from Monday:

EMA IgA positive

tTG IgA 9 which is a weak positive

IgA serum 72

I feel like I've done so much to change my eating habits in the past year and this is so frustrating. I just found out so I'm feeling pretty helpless.

I cook most of my own foods, but I live in NYC so I also eat out a few times per week. I only eat at "gluten-free" places or I just have salads. I'm thinking that "gluten-free" isn't really gluten free enough for me and that I need to be more insistent about keeping my food safe.

I contacted the dietician today whom I met with soon after my diagnosis to see if she has any ideas. Of course I also contacted my GI Dr. to follow up. My plan is to cut out everything and try to schedule another blood test in 3 months.

I'm sure there are others who've had a similar experience and I was hoping for advice on dealing with all of it.

[archaeo in FL]

hello veruca,

i'm just starting my journey down this path but i just finished reading a book that was helpful (celiac disease: a hidden epidemic) and have a stack of others to get through... but it was interesting to learn that, depending on how long you've had active celiac, and just generally on your body's composition, you may take longer to heal. as long as your numbers are going down, that's good - i know at a year it's probably really frustrating, but to have weak positives is better than blow-it-out-of-the-water positives.

also (and you may know this) be sure to check all supplements, vitamins, lip gloss - even prescription medicine, since gluten is often a binding agent.

it might be worth seeing a nutritionist and keeping a good food journal to potentially help ID some hidden gluten...

[MitziG]

Those actually aren't bad numbers. Your TTG has gone way down...it can take over a year to get the numbers all the way down when it was as high as yours. As for EMA, I am not certain, but I believe that if you have celiac, EMA stays positive. Again, not certain on that. The big question is, how do you FEEL? If you are feeling better then you ARE healing- it just is going to take a little more time. Don't be discouraged!

[veruca]

Thanks so much for the helpful words, suggestions and encouragement. I have a really great GI and when he got the results he called right away. I'm going to meet with him next week, but his advice was sort of the same as above. He felt that my numbers were okay and that we will go over in detail where I may be picking up the low level exposure.

When I was initially diagnosed I was so great about advocating for myself and never eating anything unless I had package or internet documentation that it was gluten-free. As time went by I think I became lax and just made sure gluten was not listed in the ingredients. At restaurants, I wasn't as vocal about expressing my needs.

I'm going to try and eat out only once or twice a week and only go to restaurants that are set up to be gluten free for real. I'm going to check all the products that I use regularly for gluten as well.

Thanks.

[nvsmom]

*hug* I'm sorry you're numbers were not quite what you expected. I can imagine that would be disappointing (I'm new to the diet still).

I hope you find the source of your exposures. Best wishes.