After Diagnosis Follow-up: Retesting Antibody Levels

I have chronicled my personal journey with Celiac Disease a few times on this blog and I recently received some good news I thought I would share. I have been Gluten Free for 9 months now since my CD diagnosis last summer. I really had the impression that I was doing the diet correctly but you always wonder in the back of your head just how good you are following the diet. We all know the repercussions of not following the GF diet, right?

The last time I saw my doctor and was diagnosed with Osteopenia, he ordered me to come back and see him in 6 months for a follow-up. At that time he said I would be retested for the Celiac antibodies as well as my Vitamin D levels. At the time of my original CD diagnosis my Tissue transglutaminase (tTG) IgA Antibody level was at 123 (< 10 is normal range) and my Vitamin D levels were extremely low. I was very anxious for that tTG score to come way down on my retest - proof positive that I was indeed doing a good job following the GF Diet.

I'm happy to share that the retest is complete and my new tTG level was 1.1 - a vast improvement over 123! My Vitamin D levels are within the normal range as well. Without doing another endoscopy to be 100%, I feel as though my gut has healed nicely and I'm again properly absorbing nutrients. I have also gained about 30 lbs over these last few months - everything I lost when I first got sick (and then some). I'm feeling pretty confident that my method of following the GF Diet has worked well and that I have not been "glutened" very much if at all. Below you will find my Gluten Free Diet Methodology - I thought I would share since it has been successful for me.

My Gluten Free Diet Methodology
After diagnosis, I dove right in on learning what ingredients and food contained gluten. I developed a nice document containing safe and unsafe ingredients and food which you can find here. We then completely scoured our kitchen, pantry and fridge and removed all sources of gluten. We then changed out cooking utensils and appliances that we felt (and heard) could not be cleaned of Gluten (toasters, wooden utensils, sandwich maker, bread machine, baking supplies, cutting boards, colanders, etc...). A thorough cleaning of the kitchen is recommended as well after all Gluten is removed.

We then began to learn how to grocery shop for gluten free items so we could then cook gluten free at home. See my grocery store reviews here. If you don't have any idea on recipes, see my post on GF menu planning services or you can search the internet for numerous GF Recipe Blogs. We didn't really attempt to eat out (restaurants or friends/family homes) for quite some time as we thought it was important to learn the diet ourselves first. For the grocery shopping, we purchased some handy grocery guides - many companies make these - I highly recommend you pick one or more up. Your first grocery trip will take you about 4 hours and you'll probably end up with a bunch of products from companies you've never heard of and have no idea if they taste good. Check out the GF Product Reviews and Locator post where many readers have chimed in on numerous GF products and their experiences. Feel free to add your experiences!

For Gluten Free products, my strategy was to obviously eliminate any product that had wheat, barley, rye or oats in it. After that, I went with eliminating any product that was made on shared production equipment. I don't believe that the production lines can be cleaned of gluten. However, I also adopted the "made in a shared facility" is okay strategy for a few reasons. First off, there are not that many 100% dedicated gluten free facilities. Secondly, it is pretty difficult to regularly locate a wide variety of dedicated facility products. I took the approach of eating items in a shared facility (even though there will certainly be atmospheric gluten) as a first step. I thought I would try this approach first and see how effective it was when I was rested for the antibodies 6 months later. As I mentioned above, apparently this strategy (albeit risky) has worked for me. You will have to take your own path based on your experiences and own retesting results of course.

Once we felt pretty good about being able to cook gluten free ourselves, we shared our lessons with family and friends. We also began exploring the restaurants again as you can see here in my numerous reviews. Also, please feel free to use my Gluten Free Dining Cards which you can find here. Here are some lists of local sit-down restaurants as well as fast food places. It's an ever-evolving process (see my useful resource posts here) but can be done.

This post pretty well sums up the last few months of my life as I learned how to be Gluten Free. Everyone is different of course - so please feel free to leave a comment about your Gluten Free Diet methodology!