Complicated Celiac Disease – What Happens When You Don’t Improve on a Gluten Free Diet

Celiac disease is tough enough to manage, but in some cases it gets even more complicated.  In this description of complicated celiac disease, I am not saying it is complicated, difficult, frustrating, or hard to figure out: like celiac disease is hard to understand.

In this article the term complicated celiac disease is used to more accurately explain that celiac disease has become more complicated to treat than most.  Basically, when the gluten-free diet just isn’t working.

Research published in BMC Gastroenterology this month, looks into two patterns and two prognoses when celiac gets complicated: why and how, in some rare cases, it can have a very high mortality rate.

What is complicated celiac disease?

The research explains that complicated celiac disease happens in fewer than 1% of celiac patients.  So it is rare.  

It also describes two clinical subtypes of complicated celiac disease:

Type A:  Celiac disease is diagnosed and the patient never gets better on a gluten-free diet.  Enteropathy Associated T-Cell Lymphoma (EATL), small bowel carcinoma (SBC) and ulcerative jejuno-ileitis (UJI) are most commonly associated with this type.  In the end these conditions either are cancer or lead to cancer. 

Type B: Celiac disease is diagnosed in the patient and there is improvement on the gluten-free diet, but after a period of time, the symptoms reappear even though the patient is gluten free.    Refractory Celiac Disease Type 1 is the most common form of this.  

The more quickly you are diagnosed with celiac disease and the more dedicated you are to the gluten-free diet are ways to avoid these complications.  But a quick diagnosis may not always be possible. The National Foundation for Celiac Awareness reports on average a person waits 6-10 years to be correctly diagnosed with celiac disease. 

History of complicated celiac disease

The new research investigated the natural history of the two types of complicated celiac.  And here is what it found.

Researchers also reported that most complicated celiac was confirmed shortly after a celiac disease diagnosis, but for some it can take many years for the complications to emerge. “This confirms the well-known importance of maintaining a regular clinical follow up in all coeliac [sic] patients, especially those diagnosed in adulthood,” the research said.

There is much more detail written in the study.  Click here to read more. 

So what can you take away from this research?  In my layman’s opinion:

1. Be vigilant in maintaining your gluten-free diet (maybe go through your foods with an experienced GF dietitian to ensure you’re not missing something)
2. Get you blood work/celiac panel done each year (even if you think you’re doing fine).  If your blood work comes back elevated– see point #1 again.
3. If you think you are not getting better on the gluten free diet or may be having more complications despite going gluten free, see your gastroenterologist.  A GI with strong interest or concentration in celiac disease would be a good person to consult on this very specific topic of complicated celiac disease.

*As a reminder, if you have celiac and are doing well on the gluten-free diet, you are likely not someone who has complicated celiac.  Fewer than 1 percent of celiac patients have this .  

**I am not a medical professional.  Please consult with your medical professional for any questions you have about celiac disease or the gluten-free diet. 

Tags: celiac, complicated, diagnosis, diet, disease, free, gluten, gluten-free, refractory, research