At the International Celiac Disease Symposium 2015 in Prague there was consensus on the need for follow-up and monitoring by medical professionals once a patient has been diagnosed with celiac disease. Dr. Pavel Kohout of the Czech Republic recommends that celiac patients undergo repeat tTG blood test once a year to ensure compliance with gluten-free diet. Dr. Joe Murray of the Mayo Clinic recommends a follow-up biopsy 12-18 months after a celiac diagnosis to ensure healing has taken place. If you’re undergoing a biopsy for an unrelated reason, it is a good idea for the gastroenterologist to also check on the condition of the villi in the small intestine.
Adherence to the Gluten-Free Diet. This must be ensured, especially for asymptomatic celiac patients. It can be hard to convince them (and their families) that the gluten-free diet must be strictly followed. Failure to respect the diet can lead to debilitating health complications down the road.
Symptom Resolution. Dr. Daniel Adelman of the US has found that up to 60% of adult celiac patients remain symptomatic despite being on the gluten-free diet for years. Adults do tend to have slower intestinal healing than do children, but there may be other issues at play as well. Regular physicals and blood tests for key vitamins and minerals are advisable.
People who are diagnosed celiac as children may find that during puberty or later they may suddenly be able to “tolerate” gluten. However, this is highly misleading and these people still have celiac disease – the nature of their symptoms has simply changed. Once a celiac, always a celiac!
A celiac child, following diagnosis, may quickly feel better on the gluten-free diet but this does not mean that the gut has already healed. Be vigilant in ensuring kids stick to the diet. Proper support for a celiac patient means consultation with a knowledgeable registered dietitian. This applies to adults as well as children. Unresponsive children with short stature must be assessed for comorbidities, as there could be something else going on.
Complications of Celiac Disease. Middle-aged celiac patients with persistent iron deficiency anemia should have their colon looked at, as there could be additional issues. With celiac patients, UK research found a 10x increase in inflammatory bowel disease – mostly microscopic colitis. Around 5% of IBS patients also have celiac disease, and all should be screened for it. Celiacs are also more likely than the general population to have cystic fibrosis, according to a Spanish study. Psychiatric symptoms of celiac disease may actually take the longest to resolve even with the gluten-free diet.
Complicated Celiac Disease. An estimated 2-5% of celiac adults tend to have what Dr. Chris Mulder of the Netherlands calls “complicated celiac disease.” These would generally be “slow responders” to the gluten-free diet, and tend to be adults over 50 years of age. In his study of 125 non-responsive celiac patients, some had complicating conditions such as colitis, while around 25% had “refractory celiac disease”, a dangerous condition that is normally able to be diagnosed through the presence of malabsorption and persistent villous atrophy despite 12 months on a strict, gluten- free diet. Further investigation of non-responsive celiac disease is important given the high risk of lymphomatic cancer. Dr. Carlo Catassi suggests that probiotics are a good idea for celiac patients, especially those still experiencing symptoms. Alteration in the microbiota has been found in celiac patients that are still experiencing symptoms on gluten-free diet. As well, celiac patients with anemia were shown to have slower intestinal healing than those without anemia, according to one Finnish study.
T-cell lymphoma has a 5-year survival rate in the area of 10%, so we must do what we can to prevent its development. Diagnostics need to be undertaken to ensure “non-responsive” patients actually had celiac disease and not another condition that may look similar. For example, a presentation of jejunal stenotic lesions, which can be present in celiac patients, looks the same as Crohn’s disease.
Proper diagnosis and follow-up care can mitigate much of the risk. The consensus is that the risk over time seems to decrease from the point of initial celiac diagnosis. “Switching that inflammation off at an early stage” seems to have huge positive effects, according to Dr. David Sanders of the UK. Patients who strictly adhere to the gluten-free diet can see their risk of malignancies normalize within 1-5 years. One nice addition is that, for some reason, celiacs seem to be less likely than the general population to develop breast cancer. We also seem less likely to have problems with high cholesterol.
Non-Responsive Celiacs Dr. Lori Welstead of the University of Chicago advises that “nonresponsive” patients should perhaps be assigned a “naked” gluten-free diet. Her “gluten contamination elimination diet” cuts out millet, sorghum, buckwheat, canned fruit, processed meat and more. This is intended to minimize the chances of cross-contamination, avoiding potential sources of gluten, and eating a basic diet. In her experience, most “nonresponsive” patients showed improvements on this diet. Dr. Markku Mäki of Finland suspects that a long-term lack of mucosal healing is likely gluten-induced.
Infertility and Celiac Disease. Couples wanting to conceive also need to be aware of the potential implications of celiac disease. Dr. Zdenka Ulcova-Gallova of the Czech Republic has been studying celiacs and fertility. There continues to be a link between celiac woman and infertility, but celiac men do not seem to be affected to the same degree. Due to malabsorption, celiac disease may have implications early menopause, infertility, miscarriages, amenorrhea, and more, but the risks can be minimized through strict adherence to the gluten-free diet. A Swedish study found an increased risk for malformation among the offspring of mothers or fathers with celiac disease. Untreated celiac women have higher risk of pre-term babies and other development problems of the fetus. The gluten-free diet must always be followed!
Thankfully, a massive study out of the UK found that, for most women with celiac, there was no increased risk for fertility problems. For undiagnosed women presenting with unexplained fertility, silent celiac disease should be considered.
Canadian Celiac Association (CCA) Board Member Mark Johnson and Operations Manager Sue Newell represented the CCA at the 2015 International Celiac Disease Symposium (ICDS) held in Prague in June 2015. This report represents their learnings on the Role of Follow Up in the Treatment of Celiac Disease. Want to join the Canadian Celiac Association? Visit www.celiac.ca or email [email protected]