When going gluten free is just the beginning

Vitamin deficiencies are often discovered alongside a new celiac disease diagnosis. I'm three years gluten free and experiencing vitamin deficiencies. I’d like to start with an apology. It’s Friday, and today’s post should be a recipe. I’ve been feeling really unwell over the last few weeks, and this week has been the worst yet. I simply haven’t had the energy to test recipes. I’ve barely had the energy to write my blog posts and I haven’t been doing a good job promoting them on social media. I went to see a doctor on Monday and finally got some answers this week. It turns out, it’s just another page in my health saga since going gluten free. I’m sharing my story in the hopes that it will help others with celiac disease be aware of what can happen even years after giving up gluten.

A bone fracture and vitamin deficiencies

This really started last year, a year to the day after moving to Scotland from sunny New Mexico. That evening after work, I met Legend between our offices and we were on our way to go have dinner to celebrate my year “anniversary” in the country. We were walking down the street when my foot started to hurt – nothing happened, I didn’t trip or get stepped on. It progressively hurt more and more and by the time we finished dinner and left to head home, I had a noticeable and painful limp. I missed work the next day but had to go back in to run a conference after that, which I did with a terrible and painful limp. I went in to see the doctor, who referred me to a nearby hospital to get an x-ray. They didn’t see anything and sent me home. My foot continued to hurt and I called my doctor back a few days later – they said that they suspected I had a small fracture and that sometimes they don’t show up on x-ray until they start to heal. They suggested I get a second x-ray in a week or two. I was leaving for the United States the following Monday, so I ended up waiting until I got back two weeks later for the follow up x-ray. In the end, I did have a fracture in my second metatarsal. By the time they found it, it was well on its way to healing, so there wasn’t really any additional treatment required.

I thought it was strange that a bone in my foot would fracture just from normal walking, so I looked into fracture causes. We all know that calcium is related to strong bones, so I started there. Pretty soon I learned that low calcium was often linked to celiac disease due to malabsorption. However, I’d been on a gluten free diet for nearly three years at that point, so I thought it was unlikely that I was still experiencing issues with this. Then I learned the link between calcium and Vitamin D, the so-called sunshine vitamin.

Vitamin deficiencies are often discovered alongside a new celiac disease diagnosis. I'm three years gluten free and experiencing vitamin deficiencies.

Click the image to view it full-size. Information source: National Osteoporosis Foundation

According to the National Institutes for Health, “Vitamin D plays an important role in calcium absorption and bone health.” The National Health Service (UK) says “our body creates most of our vitamin D from direct sunlight on our skin.” They go on to say “a lack of vitamin D – known as vitamin D deficiency – can cause bones to become soft and weak, which can lead to bone deformities.” It was then that I realized that I was getting nearly no sun – between the perpetually cloudy days and cool temperatures, even if the sun was out, I was still in long sleeves and trousers or tights. My face was the only thing getting any sun exposure and I always wear sunscreen. Last “summer” was a joke in Scotland – we had one week of sun in May and very little nice weather after that. I was definitely not getting enough sun for my body to produce Vitamin D, and I concluded that it must have been a factor in my bone fracture.

Note: there is a simple blood test for Vitamin D. I asked my doctor to do it and he wouldn’t. I think they just assume everyone in Scotland has low Vitamin D. If you suspect your Vitamin D levels are low (it’s very common – one study estimated ¾ of American teens and adults are deficient), talk to your doctor about arranging a test.

After some further research, I added a calcium/magnesium/zinc supplement to my daily diet as well as Vitamin D. I haven’t had any trouble with my bones since! However, my calcium and zinc supplement may have contributed to my next issue, which I’ve just discovered.

Why am I so tired?

For several months, everything was fine. I’d been exercising pretty regularly (though I can always do better) and feeling pretty decent. Legend and I traveled to Italy and walked more in three days than I was remotely used to. When we got home, I felt super tired, but just thought it was due to all the extra walking. Plus, my calves were very tight and sore, but I just blamed the 900+ stairs we walked down on Capri. I took it easy for a few days, but still wasn’t feeling better by the weekend.

I just kept thinking I’d feel better if I slept – I was constantly tired, feeling like I could lay down and sleep at any time of the day. It didn’t make sense because I was sleeping 9+ hours a night – how could I still be so tired? Then other weird things started happening. Over the last few weeks, I have had three instances of heart palpitations – my heart felt like it was fluttering, like when something startles you, then ba-BUMP! – a really hard beat that felt like getting punched in the throat. Then, I’d be typing away at my computer when my fingertip would get super cold and numb – just out of nowhere. That happened a few times – once two of my fingertips turned blue under the nail. That was pretty disturbing. After several minutes I was usually able to warm them back up and get them back to normal, but it just didn’t make sense.

Finally after three weeks of all this weird stuff, I’d reached the point where I could only sit at my desk for a couple hours before I needed to lay down. As someone who is generally very self-motivated, I knew something was really wrong at this point. Because of some medical history in my family, I was particularly concerned about the heart flutters – I wanted to make sure there wasn’t anything wrong there. Since heart attack symptoms in women are typically harder to detect, I didn’t want to risk the possibility of something being very wrong.

I visited my doctor on Monday with a list in hand of the weird symptoms I’d been having and a few questions. She ordered a bunch of blood work, including blood sugar and thyroid tests, and referred me to get a 24-hour heart monitor test (that is still pending). On Wednesday, I got a call from the doctor’s office saying that the blood tests had shown I had low ferritin levels, meaning my body’s iron stores are too low. I immediately looked up iron deficiency symptoms and found out that tiredness/lack of energy and heart palpitations are two major ones. According to the NHS, “iron is used to produce red blood cells, which help store and carry oxygen in the blood. If you have fewer red blood cells than is normal, your organs and tissues won’t get as much oxygen as they usually would.” This could also explain my random cold fingertip problems.

Iron deficiency & celiac disease

Vitamin deficiencies are often discovered alongside a new celiac disease diagnosis. I'm three years gluten free and experiencing vitamin deficiencies.

Click the image to view it full-size. Information source: National Health Service (UK)

Iron deficiency is commonly detected alongside a celiac disease diagnosis, with as many as half of new celiac diagnoses coming with iron deficiency anemia. However, most people can recover from this simply by removing the gluten from their diets within 6-12 months. I never got a celiac diagnosis but suspect that this all rings true for people with non-celiac gluten sensitivity too.

Getting enough iron in your diet after going gluten free can be a little more difficult, as one major source of iron in our diets is fortified cereals, breads and pastas. One bowl of bran cereal, for example, can have your whole day’s worth of iron included. With wheat removed from your diet, access to enriched grains is not as easy. There are fortified rice and corn products, but it’s not as common to see fortified gluten free products (one exception I’m aware of: 1-2-3 Gluten Free fortifies some of their mixes, like these pancakes.) Gluten free vegetarians can have an even harder time without meat, and vegans struggle even more without eggs in their diets.

I was prescribed an iron supplement to treat my iron deficiency, and now need to take an iron tablet three times a day. I’ll need to go back and have my blood tested again in two months to see if my iron levels have improved. I found an interesting study that showed oral iron therapy reduced unexplained fatigue in women with similar ferritin levels, so I’m hopeful that I’m on the road to recovery.

I looked into possible interactions between iron and the other vitamins and medications I take and found out that calcium and zinc can both interfere with the absorption of iron. I took the label of my calcium, magnesium and zinc supplement with me to pick up my iron prescription so I could ask the pharmacist what I should do. She recommended I take the calcium supplement first thing in the morning before eating, and then take the iron supplements with my three meals throughout the day. She said as long as I left an hour or two in between taking the calcium and iron supplements, I should be fine. I wonder, though, if adding the calcium and zinc supplement back in October might have contributed to my new low iron levels. I also learned that Vitamin C helps with iron absorption, so I am looking at adding a supplement with one of the three iron tablets daily.

As of this writing, I’ve taken my first three iron tablets. I don’t really feel any different yet and suspect it’ll be a few weeks before the difference is noticeable. Since I eat mostly vegetarian at home, I suspect I’m not eating enough meat to keep my iron levels where they need to be. I am going to pick up some groceries later and will be adding iron-rich red meats along with spinach, nuts and seeds to my list. I’m also going to pick up some Vitamin C-rich foods like broccoli, tomatoes and oranges. Hopefully by better addressing my nutritional needs through food, I won’t need the iron supplements for too long.

Bonus round: reading my blood test results

Vitamin deficiencies are often discovered alongside a new celiac disease diagnosis. I'm three years gluten free and experiencing vitamin deficiencies.

Click the image to view it full-size. Information source: Celiac Disease Foundation

I just picked up a copy of the results from Monday’s blood work and noticed that my ferritin levels are still within the “normal” range, but on the very low end of it. I also noticed that my B12 levels are on the low end of their range, though my doctor didn’t say anything about this. Low B12 is also linked to fatigue and palpitations. Food sources of B12 are animal products – meat, eggs and dairy. Since I’m already aiming to increase my meat intake for the iron, I’m hoping I’ll be able to improve my B12 levels through diet changes as well. I do eat a fair amount of dairy and eggs, though, so I’m a bit surprised to see this one.

So again, I’m sorry for deviating from the regularly scheduled broadcast, but I thought it was important to share what I’ve been going through with my health, in case it can help someone else get answers. Vitamin deficiencies and celiac disease are closely linked, so if you’ve just been diagnosed with celiac disease, you might want to ask your doctor to test your Vitamin D, calcium, iron and B12 levels – especially if you also follow a vegetarian or vegan diet.

If anyone’s been through iron deficiency, I’d love to hear about your experience (especially the part where you felt better!) Please tell me all about it in the comments.

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