Adherence to a strict gluten-free diet is currently the only treatment for Celiac. It is important to educate yourself on the diet immediately after diagnosis to learn which foods are allowed and which are not (see What Can I Eat, What Can’t I Eat) sections). Most people will feel better soon after starting the GF diet, however it can take anywhere from a few months to a few years for the intestines to heal, depending on the severity of the initial damage. If symptoms persist after being gluten-free (recommended 6 months), consult your health care provider. While the majority of people will respond well to the gluten-free diet, some will not. Individuals with continuing symptoms may have sensitivities to other foods. Lactose intolerance often accompanies Celiac, so be sure to ask your doctor for a lactose test. Other foods which may cause sensitivities include: soy, fructose, corn, and carbohydrates, among others (read article on FODMAP foods here). Other conditions such as Colitis, SIBO (Small Intestinal Bacterial Overgrowth), Gastroparesis, Pancreatic Insufficiency, Parasites, among others, may be the reason for continued symptoms.
Once a diagnosis of Celiac is confirmed, the following is recommended:
– Begin a gluten-free diet immediately
– Schedule an appointment with a registered dietitian, preferably one who is well versed in the gluten-free diet
– Meet with Primary Care Physician to schedule blood work to check for nutritional deficiencies (Iron, Calcium, Folate, B-12, D, K, among others). You may need to take additional supplements & a daily multi-vitamin is recommended by celiac experts. Monitor until deficiencies are back to normal ranges
– Consider digestive enzymes or probiotic supplements
– Consider testing for other food sensitivities, especially lactose intolerance – as often times this accompanies Celiac
– Schedule a bone density exam to check for Osteopenia or Osteoporosis (at any age, not just if over 50!) Your body may not have been absorbing the important calcium, vitamin D and magnesium required for healthy bones!
– Elderly may want to consider a vaccination for hyposplenism
– Join a local Support Group
– Educate yourself via books written by leading celiac researchers, visit our book review section.
Tip for the Newly Diagnosed (with a confirmed biopsy): The University of Chicago Celiac Disease Center offers a Gluten-Free Care Package – a basket filled with resources & food samples! Contact the center at 773.702.7593 or http://www.celiacdisease.net/care-package
Even though the American College of Gastroenterology’s issued recommended guidelines for Diagnosis and Management of Celiac Disease in 2013, not all health care professionals may be on board. The majority of Celiac experts suggest an appointment be made with primary care physician twice in the first year of diagnosis. The first appointment should be scheduled three to six months after diagnosis for follow-up antibody levels testing, and the second should occur after one year on a gluten-free diet.* Here is a more recent “Celiac Disease Clinical Practice Guidelines (2019)” from the European Society for the Study of Coeliac Disease (ESsCD), which has a section on management/follow-up.
Recommendations for management and follow-up based on various expert’s recommendations:
– Meet with Primary Care Physician to schedule blood work to check for antibody levels and any
nutritional deficiencies (3-6 months after diagnosis, and then again after 1 year on gluten-free diet)*
– Schedule Bone Density exam (if not performed earlier on)
– Be sure Primary Care Physician is monitoring for any associated illnesses (especially other auto-immunes)
– Continue strict adherence to gluten-free diet
Follow-up blood tests should then be repeated annually. Discuss whether a follow-up biopsy is needed with your physician/gastroenterologist.
(From American College of Gastroenterology: “There is universal agreement on the necessity of long-term monitoring of patients with CD (212). The number of patients with CD who receive follow-up is unknown. In the United States, follow-up appears to be suboptimal in practice (213). A systematic review supports the role of strict adherence to the GFD to control symptoms, improve quality of life, and decrease the risk of complications (214). Normal growth and development are achievable on a GFD and should be goals for monitoring children with CD (215). Control of symptoms (if present), facilitation of adherence to GFD, and avoidance or early detection of complications should be the general goals of monitoring after diagnosis of CD (Figure 3).” Open ACG link above to read more on management & monitoring of Celiac Disease.
Note: Untreated Celiac puts people at an increased risk of cancer of the intestines or any surrounding organ, due to chronic inflammation which can lead to various abnormalities which then become precursors to malignancy. If you think you may have Celiac, do not delay your diagnosis – get tested; If you think you can “cheat” on the gluten-free diet, resulting in continuous inflammation, read this: “Celiac Disease Patients with Ongoing Intestine Damage at Lymphoma Risk“. A Swedish study showed that patients with mucosal healing had a malignancy risk similar to that found in the general population.
Additional Reading:
*The University of Chicago Celiac Disease Center’s article on Monitoring for Celiac Disease, particularly “What problems might I develop in the future”
* “Can Blood Tests Accurately Predict Intestinal Healing in Children with Celiac Disease?”, by the Celiac Disease Foundation (August 2014)
A recent study indicated that even trace amounts of gluten (well under the “allowable” 20 ppm) can cause symptoms in some Celiacs who are highly sensitive. If you are following a strict gluten-free lifestyle, and still feeling unwell, consider that you may not be able to tolerate even the smallest amounts of gluten which may be found in gluten-free foods (mainly due to cross-contamination). Read more information on this study here.
A small percentage of people still experiencing symptoms even after following a 100% gluten-free diet may have other medical conditions such as small intestinal bacterial overgrowth, microscopic colitis, pancreatic insufficiency, or autoimmune enteropathy, or as mentioned above other food intolerances. Also, according to the Celiac Center at Columbia University “Approximately 5% of patients may develop refractory celiac disease or refractory sprue. Refractory sprue is defined as a condition in which villous atrophy and symptoms persist despite a gluten free diet.”
Most certainly if you are continuing to consume gluten, whether intentional or by cross contamination, you will continue to experience symptoms. The gluten-free diet must be adhered to 100% in order to eliminate symptoms and decrease the risk for developing other serious health complications.
Healing should be your ultimate goal and this can only occur when gluten is completely eliminated.
