4 months in - still have high gluten count!

[Juliehemann]

I was diagnosed 4 months ago and had recent blood work done and I still have a high gluten count. I have been extremely diligent about my diet. We cleaned out my kitchen entirely and I prepare all meals at home. I have been very careful with all ingredients and have been very mindful of what I’m eating. On the rare occasion i do eat out, I research the restaurant and speak to the waitstaff and try to be as safe as possible. I’m so disappointed with my blood test results!! What am I missing? 

[trents]

Welcome to the forum, Juliehemann!

First, let me correct something you said that is a common misconception. The blood tests don't measure gluten levels. They measure antibody levels in reaction to the ingestion of gluten over time. Gluten causes inflammation in the villous lining of the small bowel for those with celiac disease. The reason is because the celiac's immunes system mistakenly interprets the gluten as an invader when it comes in contact with the small bowel villi.

Second, have your blood antibody counts decreased at all? Can you post the numbers (along with reference ranges for negative vs. positive) for both the initial antibody testing and also the most recent one? Progress is progress but some celiacs respond more slowly to the gluten free diet than others do.

Third, are you taking into account potential hidden gluten sources such as pills, supplements and medications? Chances are you are missing something. Learning to eat totally gluten free requires considerable education and experience because of the many ways gluten is hidden in the food supply. Studies have shown that most people who believe they are eating gluten free are actually eating "low gluten".

Fourth, I will offer this primer for gluten free eating which may help you identify hidden sources of gluten in your daily intake: 

 

[knitty kitty]

Welcome to the forum, @Juliehemann!

I felt much better after I cut out dairy.  Have you tried cutting out dairy? 

Some people have trouble digesting lactose, the sugar in dairy.  This is due to the damage to the villi in your small intestine from CeD.  With time, the villi grow back and can produce the enzyme (lactase) that digests lactose.  

Others develop a reaction to Casein, a protein in dairy, typical of a reaction to gluten.  This is because segments of the casein molecules resemble those of gluten molecules.  This molecular mimicry results in the autoimmune response as would happen with gluten.  

Keep a food diary to help you track down problematic foods, too.

[Wheatwacked]

Are you feeling better? Residual symptoms?

Here is a list of foods to eat and avoid to eliminate hidden gluten.  Products allowed/disallowed in the Gluten Contamination Elimination Diet

Just eating gluten free does not mean you are getting sufficient vitamins.  Especially the ones lost by eliminating the fortified gluten foods.

Increasing your intake of Iodine will help with slow healing.