Still feeling unwell after celiac diagnosis and completely gluten free diet

[User492919129]

I’m 17 currently and I was diagnosed with Delian disease in December 2023, since my diagnosis I have gone completely gluten free, with no cross contamination. Initially I started to feel a lot better and was getting sick less recently and my immunity was generally getting better. HOWEVER around late February I started feeling very unwell again having celiac like symptoms again despite not consuming gluten. I sort of put this aside but these past few weeks I have been feeling awful and my bloating is so bad. I cannot eat without feeling sick and like I am going to throw up. I am constantly tired and exhausted cannot make it through most days without napping. I was just word wrong if anyone had experienced a similar thing and how they improved it? 

[trents]

Welcome to the forum, @User492919129!

Are you still consuming dairy and oats (even gluten free oats)? It is common for celiacs to "cross react" to these two foods (and others like soy and eggs and corn) because their proteins are similar in structure to gluten.

And perhaps you have developed another food intolerance, also common among celiacs. You might consider keeping a food diary to spot any patterns between what you eat and symptoms.

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[ShelaghD]

Other responses covered the main concerns. Definitely keep a food diary and consider the elimination diet to pinpoint where things are going awry. 

Make sure you take a daily multivitamin. Also, reach out to your doctor for follow-up blood testing, you might be anemic or lacking various vitamins like folate or vitamin D that can really have an impact on energy levels.

I’ve had to avoid a lot of the gluten free goodies out there because they are usually using sugar or high carb ingredients to make things tasty. That might be affecting you as well… bloating and general blech were my symptoms.  

It can take many months to feel well again, so hang in there.