Gluten is everywhere. It can sneak into someone’s diet in places nobody would even consider. The most unusual place I found gluten was plain vanilla ice cream. Once while at the beach, my in-laws wanted to treat the family to ice cream. I explained I couldn’t go to an ice cream shop, so they went to the grocery store. When they got back, I casually looked at the ingredients for the vanilla ice cream. Wheat was the first ingredient – in ICE CREAM!!! The gluten contamination elimination diet might help.
Non Responsive Celiac
Many, many people believe that their celiac disease is not responding to the gluten free diet. According to this study, up to 30% of celiac patients have persistent intestinal damage after a year of the gluten free diet. I’ve written a lot about celiac patients ingesting gluten inadvertently. Gluten sneaks into the diet through a variety of methods – mislabeled products, eating out, etc.
Studies have shown that refractory celiac disease is rare. Currently, science says it but my gut says no, but that is a different topic all together. And it if the science says its true, I’ll let it ride for now.
Anyway, refractory celiac is rare. Why would someone not heal or not feel better on a gluten free diet? The gluten is sneaking in. In order to avoid an invasive endoscopy, a gluten contamination elimination diet can be implemented to determine the cause of symptoms.
Gluten contamination elimination diet
Warning, this diet is restrictive and extreme. The diet should really only be undertaken with the supervision of a registered dietician with doctor’s orders. Furthermore, the diet is not recommended for those that are less than 12 months after confirmed celiac diagnosis and on repeat biopsy have Marsh 0, 1, or 2 scores.
In the gluten contamination elimination diet the goal is to get gluten exposure to 0. With normal gluten free diets, people are exposed to at least 50ppm of gluten a day and often times more. This diet gets the exposure to gluten to zero but it is a lot of hard work.
During the first 1-2 weeks of the diet, the ONLY the following foods are allowed – All fresh fruits and vegetables (no frozen or canned), Gluten free labeled rice, chicken, turkey (not self basting), fresh fish and seafood, eggs, coffee, gatorade, 100% fruit and vegetable juices, 100% black or green tea, Boost or Ensure, fresh herbs, and salt. Nothing more.
The idea behind the extreme restriction is to stop the immune system and give it a break. Removing lactose from the diet helps the immune system calm. If lactose is a problem, this diet should find it.
Over the next 2-3 weeks, additional foods can be added every 2-3 days to determine if they are well tolerated. The additional foods are butter, plain yogurt, plain cream, cheese, cottage cheese, and carefully sorted dried beans.
That’s it. Continue the diet for approximately 3 months and retest. If the changes in the small intestine are resolved, then the diet worked. Gluten contamination can be eliminated as a source of the issues. Other issues may be the cause of ongoing celiac-type symptoms. If the diet didn’t work, then refractory celiac must be diagnosed.
Because of the restrictive nature of the diet, it should not be implemented for longer than 3 months. A “normal” gluten free diet can be reintroduced slowly and methodically. Again, the help of a registered dietician is very, very important here.
More information regarding this diet can be found here.
Less complex gluten contamination elimination diet
For me, that diet would be exceptionally difficult to implement. So, I do my own version by primarily eating whole foods and carefully reading labels. Do I occasionally make a peach cobbler with gluten free Bisquick and frozen peaches – yes. But for the most part, I eat whole foods. I rarely eat processed foods and when I do they are out of convenience. Since this COVID thing, we have drastically cut back on eating out as well, too. All have helped my health and wellbeing.
Conclusion
The reality of having celiac disease is that we are going to get contamination with gluten. Even in the most careful places, its still is there. So, if symptoms are ongoing talk to your doctor. Remember, that the celiac blood tests are designed for diagnosis not for monitoring gluten ingestion. Talk to your doctor about the potential for a gluten contamination elimination diet and a referral to a registered dietician.