Renewed Motivation To Strictly Follow Gluten Free Diet

I wrote this blog post a little more than a year ago which detailed my main Celiac Disease side effect, Osteopenia (or lowered bone density). The post goes into great detail about the bone scan process and my resulting test scores which indicated a severe impact to my bone density due to Celiac Disease and it's subsequent nutritional deficiencies. It's pretty clear to see that if you are not correctly absorbing nutrients then there will be a multitude of effects on the body, include loss of bone density.

At the time of my previous post last year, my score of -2.4 was technically Osteopenia, but right on the border of osteoporosis. I was pretty anxious heading into a recent follow-up bone scan to see if my scores had improved after being on the Gluten Free Diet and supposedly curbing the Celiac Disease induced damage to my body. My doctor had told me that correctly following the diet could lead to a recovery of my bone density. For some reason, you never really know if you are following the GF diet correctly or is some small portion of Gluten still contaminating you, anyone else feel like this? I guess tests like this along with repeat antibody tests can really go a long way to building your confidence level that you really are Gluten Free.

I'm happy to report that my bone density scores did improve. While still having Osteopenia, my scores were more toward the middle range, instead of the high/border-line Osteoporosis range. The results were much better in my smaller bones (like forearm) as these are the first to recover while improving only a little in my bigger bones (like hips). These results have definitely renewed my motivation to keep going.

As I have mentioned before, a Celiac Disease diagnosis is the beginning of your journey to healthy living - it's not the beginning of the end of your life. For us, our diagnosis is really our cure... not very many diseases are like that. If you are not getting follow-up care like repeat antibody tests or bone density scans, please check with your doctor or use my Health Network to find a doctor who is familiar with treating those with CD.

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!

Useful Resources - After Diagnosis Follow-up - Nutritional Deficiencies

After I was diagnosed with Celiac Disease this summer, my Doctor informed me that several follow-up tests should be performed to verify if I had any Nutritional Deficiencies. My doctor ordered a few blood tests called "CBC" or Complete Blood Count and a test for Vitamin D levels.

From the results of these tests, my Doctor determined that my Vitamin D levels were too low. Low levels of Vitamin D can lead to many issues in the human body. In Celiac's, it could lead to Osteoporosis/Osteopenia. This ended up being the case for me.

My Doctor did several things as a result of this Vitamin D deficiency.

1. Wrote a prescription for Vitamin D for 6 weeks. The dosage was 50,000 IU. The normal suggested dosage for adults is 400 IU per day. This was to boost as much Vitamin D into my system as quick as possible to try to make up for the deficiency.
2. Ordered me to undergo a Bone Density Scan Test also know as a "Bone Densitometry Test" and/or dual-energy x-ray absorptiometry (DXA or DEXA) . See more about this test here.
   

I had the Bone Density test here in Raleigh at Wake Radiology in their West Raleigh office near Rex Hospital (West Raleigh Office - 4301 Lake Boone Trail - First Floor -Raleigh, NC 27607 - Ph 781-6707 - Mon-Fri 8am-5pm). The procedure took about 30 minutes from start to finish and was completely painless (other than hearing my diagnosis from the technician). Normally, 60 year old women are getting this test so they were a bit taken back to see me and my results. Regardless, I had the following areas scanned: wrists, forearms and ankles in addition to the normally scanned areas of the spine and hips. Patients with Celiac Disease will often see loss of bone density due to malabsorption in the small bones of the body first so it is important to make sure these areas are included in the scan.

The test results will be listed as follows:

• T score — This number shows the amount of bone you have compared with a young adult of the same gender with peak bone mass. A score above -1 is considered normal. A score between -1 and -2.5 is classified as osteopenia, the first stage of bone loss. A score below -2.5 is defined as osteoporosis. The T score is used to estimate your risk of developing a fracture.
• Z score — This number reflects the amount of bone you have compared with other people in your age group and of the same size and gender. If this score is unusually high or low, it may indicate a need for further medical tests.

My results were a T score of -2.4 which is technically classified as osteopenia, but very close to osteoporosis. One Standard Deviation difference in a T-score equals a 10-15 percent decrease in bone density. For example, a person with a T-score of -2.5 has a 10-15 percent lower bone density than a person with a T-score of -1.5. When my doctor reviewed the test results, he called me to recommend I take at least 800 IU daily of Vitamin D and schedule a follow-up appointment with him in 6 months. As a result, I am taking a Gluten Free Daily Multivitamin (found at Whole Foods) in the morning which contains 400 IU Vitamin D and then another 400 IU Vitamin D pill (found at Lowe's foods) in the evening. FYI - Vitamin D only pills are pretty difficult to find in my experience.

The Good news - my Doctor informed me that as time passes and I remain on the Gluten Free Diet, my Nutritional Deficiencies should disappear and my bone density issues should be reversible.

If you are a newly diagnosed Celiac and your doctor has not ordered any follow-up tests, then you should either demand they do or switch doctors. The results of Nutritional Deficiencies is not something to mess around with as you can see in my case.

For more information on Osteoporosis, please visit the National Osteoporosis Foundation website.