The topic of vitamin and mineral supplements comes up a lot in counseling sessions with celiac clients. People often wonder if they should be taking something, can they get enough nutrients from the diet, how do they know if they are deficient? These are all questions that came up in my discussion with Sue Jennett on the Canadian Celiac Podcast Episode #41 just released October 17, 2018. If you would like to listen in that way find the show on itunes or any other podcast platform. You can also listen right off this link here. If you are interested in my podcast episode on persistent gut symptoms in people with celiac disease, listen in episode 20.
For those people who prefer an article here is a brief summary of the main points that we discussed. As always these are general guidelines and it’s important to get personalized advice from your doctor or registered dietitian.
Are nutrient deficiencies a concern when someone is first diagnosed with celiac disease?
This is an important question. Consider this statistic:
87% of newly diagnosed people with celiac disease are deficient in at least one or more vitamins or minerals.
A lot of people aren’t aware of that and think they just need to go gluten free when we likely need to also focus on replenishing.
Since that it takes on average 10-12 years for people to get diagnosed it makes sense that we are going to see some significant nutrient deficiencies. As most of us listening already know, by the time celiac disease has progressed to manifesting symptoms that have prompted medical intervention and investigation, usually the villi in the lining of the small intestine are quite damaged.
Just a bit of anatomy background, the small intestine is where the majority of the nutrient absorption happens in our bodies. It is highly folded to make up a huge surface area for the small size. Each square inch of the intestine provides 20,000 tiny finger-like projections called villi that function to absorb the food we eat. In particular the vitamin, minerals, water, carbohydrates, proteins and fats into our body so we can use those nutrients.
If we unfold it and flatten it out, the surface area would be around 60 feet or 18 meters square….around the surface area of a tennis court! The surface of our gut is about 100 times greater than that of our skin.
Why I’m bringing this up is that with active celiac disease and newly diagnosed celiac disease, the villi become stunted or even flattened which drastically decreases the surface area needed for absorption. Therefore that is why we see significant levels of deficiencies with vitamins and minerals because they aren’t being adequately absorbed from our food.
What vitamins are often deficient when someone is diagnosed?
There are a few big ones of concern: iron, vitamin B12, vitamin D, folic acid, zinc and copper. Going a little bit more into the physiology behind celiac disease – usually the damage to the small intestine starts in the duodenum which is the beginning part of the small intestine right after the stomach (around ½ meter long) and then progresses further down with time. Primarily the nutrients we see deficient are the ones that are absorbed exclusively at the top part of the intestine. If these vitamins and minerals don’t get absorbed there, they just pass right on through the body and can lead to deficiencies over time.
Decreased iron stores are seen in 46% of people newly diagnosed around 1/3 of people are anemic
In fact it is the second most common symptom leading to a diagnosis of celiac disease (after diarrhea). In men especially, anemia is uncommon so it indicates something is wrong (my husband, for example, was anemic when he first went to the doctor about his symptoms along with some other red flags which prompted the doc to do another round of blood work which included a celiac screen). Iron is only absorbed in the top part of the small intestine and is a site of storage as well. Damaged intestines do not absorb iron well, if at all.
Vitamin B12 deficiency is seen in up to 40% of people newly diagnosed
B12 is actually absorbed way down at the end of the small intestine, the ileum. The reason why we see this happening is actually thought to be caused by something called small intestinal bacterial overgrowth (or SIBO) which is a fairly common complication with celiac disease. This may be something that needs to be addressed down the road.
Vitamin D deficiency is seen in up to 66%
This is very frequently seen due to a few different reasons. Malabsorption in the small intestine, often elimination of dairy products from the diet due to lactose intolerance that often occurs and also our location (living in Canada puts us all at risk for vitamin D deficiency unless we are supplementing ourselves).
This also goes hand in hand with calcium absorption as they work together and are absorbed in the same area. Calcium deficiency is really hard to assess as the blood levels are maintained at the expense of our bones. Over time if we don’t take in enough calcium, our body density will be compromised and lead to osteopenia or osteoporosis.
Folic acid deficiency is seen in up to 20% (more rare in North America)
Less commonly seen in North America with fortification of wheat flour and wheat based products.
Minerals found to be commonly deficient are calcium, phosphorus, copper, selenium and zinc
The big one in there is zinc, with a deficiency level seen at around 67%. This can be problematic for children and adolescents especially when they are growing as deficiency can lead to short stature. Deficiency can be seen with dry skin, brittle nails and thinning hair and can impair intestinal healing as well.
How do you know if you are deficient in vitamins or minerals?
It’s hard to actually tease out what symptoms may be caused from a nutrient deficiency. A lot of those symptoms go hand in hand with how someone feels when they are first diagnosed – tired, fatigue, poor skin, hair and nails.
The best way to figure out if you have a deficiency is to do blood work as ordered by your doctor. A registered dietitian can help suggest certain vitamins and minerals to test according your specific symptoms and medical story. A bone density scan would be a way to assess calcium requirements moving forward but can sometimes be hard to have access to and patients need to meet a certain criteria to have that done.
By contrast, healthy people often do not have any of these nutrient deficiencies. Your doctor may not be used to testing for nutrient deficiencies or consider them.
It’s important to work with your doctor and dietitian to correctly identify any deficiencies and work to restore them quickly as it can negatively affect our body of course, we won’t feel our best and can inhibit healing.
Once a gluten free diet is started what vitamins and supplements should be started?
So after a diagnosis of celiac disease, it’s usually safe to say that the body has a lot of healing, repair and replenishing work to do. We want to make sure that our bodies have the tools it needs in order to do that.
A good starting place is a multivitamin and vitamin D.
Ideally when someone is diagnosed they will see a dietitian knowledgeable in this area and have some blood work done by their physician to assess the level of deficiency we need to correct.
But starting with a multivitamin is a good way to boost the nutrients you are taking in to start replenishing your body, aids in better gut healing and starting to reverse some deficiencies. Vitamin D is definitely a must as many people are deficient at deficient and it helps with healing of the intestine.
An omega 3 supplement from a high quality fish oil is something to consider as well which helps decrease inflammation in the body and promote healing. Encourage getting more in the diet is important too, I encourage increase intake of fish.
Depending on blood work, if iron or vitamin B12 are deficient an additional temporary supplement will be recommended to correct that as well.
Calcium is something that might be considered too depending on the diet history, bone density (if available) and willingness to incorporate calcium rich foods into the diet.
In terms of gut healing there are other supplements that might be recommended on a case by case basis. There are other natural health supplements like probiotics, gut healing supplements like L-glutamine, slippery elm bark and some others.
Do these requirements change over time as the patient becomes healthier on a GF diet?
That’s a good question and as dietitians we approach someone who is just diagnosed and is in that first difficult year of healing/replenishing stage as different than someone who is stable and has their celiac disease managed.
I see these as two different things because at diagnosis we are dealing with certain deficiencies that are common in people at that stage. Once people are eating a gluten free diet, there can be other issues that come up after some time on the diet.
Supplements are NOT meant to compensate for poor diet quality. They will never do that. We need to make sure that we are eating well and a supplement is really meant to fill in the gaps of our diet.
For everyone eating gluten free, we need to focus on diet QUALITY. By this I mean the following:
- Highly nourishing and naturally gluten free foods because GF products aren’t necessarily going to be nutritious and can be low in fibre, vitamin, minerals, high in fat, salt and sugar.
- Consuming whole or enriched labeled gluten free grains and products for B vitamins and fibre
- Lots of vegetables and fruits for vitamins, minerals and fibre
- Getting enough calcium rich foods in (often this is lacking)
- Choosing foods that are high in iron (50% of women are not getting enough iron rich foods in daily)
- Fermented foods (source of probiotics as tolerated like yogurt with active bacterial cultures, kimchi, sauerkraut, kombucha, etc)
Unless people are eating very well and putting a lot of intention into their diet, I do recommend ongoing multivitamin supplement usually and always along with vitamin D (I recommend that for everyone). Other supplements might be recommended on a case by case basis.
How do these recommendations change for children or adolescents?
It would be approached the same. Blood work would provide the basis for supplements and vitamin or mineral correction right after diagnosis. Mostly a focus on diet quality with the support of a multivitamin and vitamin D. Other supplements would be recommended on a case by case basis.
What is the best way for celiac disease patients to monitor their vitamin levels, is this something we should be concerned with?
The only way that we have to assess vitamin levels in our body is through blood work. And we can see how they change over time as well.
There is a great document on the Canadian Celiac Association website that was developed by the professional advisory counsel called “Celiac Follow Up Care Resource” and it outlines basic blood work that is recommended at diagnosis and at different intervals after that. It’s very helpful to have a document like that to advocate for yourself with your physician who may not be familiar with this suggested protocol.
Print it off and bring it in to your doc appointment if you feel this is relevant to you.
Or have the dietitian you are working with send a letter to the doc suggesting some levels checked if it’s relevant as well.
Wierdsma NJ et al. (2013). Vitamin and mineral deficiencies are highly prevalent in newly diagnosed celiac disease patients. Nutrients 5(10):3975-92.