BLOG 88: HOW I GOT DIAGNOSED AS IRON DEFICIENT AND COELIAC

If you have been around for a while, you might have heard me talk before about finding out I was iron deficient a couple of years ago. I shared some of that story last year, in this podcast episode with my friend, Sally Jacks. Sally also experienced iron deficiency and was responsible for inspiring me to get my own levels checked. 

Since then, there have been a few more developments in my story that have led to me getting diagnosed with coeliac disease. In today’s post, I want to update you on this journey.

Although this is my personal story, I know that many women will struggle with similar symptoms. It is estimated that one in three women experience iron deficiency at some stage in their lives, which is a mind-blowing statistic. And many of us don’t realise what the issue is.

I’m sharing my own experience in the hope that it will encourage you to get checked, especially if you are experiencing symptoms or fall into an at-risk group (which is many women past puberty).

I also want to include information from a medical professional, alongside my personal experiences. I recently welcomed my own doctor, Dr Caitlin Scott, onto the Face Yoga Expert Podcast to talk more about iron deficiency and coeliac disease. The medical information from this post is drawn from that discussion, which you can hear in full here.

Dr Caitlin is an expert in this field. I met her when I had my first iron infusion at the Iron Clinic in London. Since then, she’s moved to the Mews Clinic in Guildford, which is where she helped me discover the underlying cause behind my low iron levels.

She’s an expert in women’s health and has a special interest in iron deficiency and how it impacts our health. The information she has to share on iron deficiency is eye-opening, to say the least.

HOW DO YOU KNOW IF YOU ARE DEFICIENT IN IRON?

As modern women, our lives are so busy. Many of us will be balancing work and caring for your families or other people. Our own needs often get forgotten and it is common for us to ignore when we are feeling fatigued or under the weather. Society expects us just to get on with things.

As a result, we may not realise that what we are feeling is unusual. We know that we don’t feel quite right, but it doesn’t click that our bodies are trying to tell us that there is something wrong.

It wasn’t until I had a phone call from my friend, Sally Jacks, that I realised I might be low in iron. Sally had discovered that she was iron deficient and rang me to share what she had. She knows I share health and wellness tips and wanted my help in getting the word out to more people.

As we spoke, I noticed that many of the symptoms she was describing were things I was experiencing myself. There is a long list of symptoms associated with iron deficiency. Fatigue is the best-known, but other common signs include:

• Brain fog and difficulty thinking or concentrating
• Heart palpitations
• Shortness of breath
• Pins and needles in your hands or feet
• Feeling cold all the time and unable to get warm
• Difficulty sleeping
• Low mood and anxiety
• Restless legs at night
• Hair loss
• A loss in nail quality
• Dry skin

I went to my GP, who confirmed that my ferritin levels were at just 33 ng/mL, indicating that my iron stores might be low. At Sally’s suggestion, I got in touch with Dr Caitlin Scott and had my first iron infusion.

Honestly, I felt awful for a week after the infusion, which is very common. But after that, I felt better than I ever had before. My iron levels remained high when I retested after 3 months and 6 months. 

After that, I stopped testing regularly. And gradually, my symptoms began to creep back.

For a long time, I dismissed the way I was feeling as stress from living in a global pandemic. I’m sure many of you can relate!

Earlier this year I got so dizzy that I almost passed out. This gave me a lightbulb moment – I suddenly had a sense that my ferritin levels had dropped again.

Sure enough, when I went back to have another blood test, my levels had dropped back down to 33 ng/mL, so I went back to see Dr Caitlin and had a second, half infusion.

The trouble is, that first infusion should have lasted me for life. So, Dr Caitlin knew that something else must be going on.

WHAT CAUSES AN IRON DEFICIENCY?

Our bodies aren’t actually very good at absorbing iron from our food and there is a limit to how much we can absorb in a 48-hour window. This means it is hard to replace the iron that we lose.

We naturally lose some iron when we sweat, which is why athletes and very active people need to be alert to their iron levels.

However, it is women who are most at risk because we bleed each month. It only takes one day of your period being especially heavy to lead to you losing more iron than you can replace through your food.

Multiply this iron loss by twelve months for twenty plus years and it is easy to see why so many of us end up with low iron levels. Because we lose the iron over a long time, symptoms often creep in slowly and it can be a while before we realise there is an issue.

Pregnancy also contributes to our low iron levels. Miscarriage and birth both result in a loss of blood, and therefore iron. If we have pregnancies close together, say two in three years or three in five years, we struggle to replace the lost iron.

Iron deficiency can affect women at any age. Dr Caitlin has seen teenagers with especially heavy periods, as well as post-menopausal women who no longer bleed, but who are still dealing with the consequences of years of iron loss.

At first, I put my own iron deficiency down to these factors. I’ve had two pregnancies and two miscarriages, plus one of the days of my period is always heavy.

But when my iron levels dropped so dramatically after my first infusion, it was clear that something else was going on.

Another thing that can cause an iron deficiency is inflammation in our guts. This is because nutrients from our food are broken down by enzymes. They are then absorbed through the cells in our gut lining and pass into our bloodstreams.

Inflammation interferes with this process and stops us from efficiently absorbing all nutrients, not just iron. Conditions like ulcerative colitis and coeliac disease can result in low iron levels because we can’t easily absorb iron from our food.

I’ve known for years that I have an issue with gluten. Whenever I eat it, I get swollen and painful joints and bloating. So, I was already avoiding gluten 90% of the time. But I wasn’t 100% gluten-free.

Based on my history, Dr Caitlin was able to diagnose me with coeliac disease. Fortunately, avoiding all gluten should mean my iron levels don’t drop so rapidly in the future.

GETTING A DIAGNOSIS

Unfortunately, the standard range used by most GPs to check our iron levels is drawn from an average of a large number of people. When that average was calculated, it didn’t consider whether any of the people sampled had symptoms of an iron deficiency.

Dr Caitlin and other experts in this area believe that the normal range used by the NHS sometimes misses correct diagnosis for some women as a result. Dr Caitlin says that she can only eliminate the possibility of someone’s symptoms being caused by an iron deficiency if their ferritin levels are at least 100ng/mL.

My iron levels were low for years but fell within the range that most GPs consider normal, so it wasn’t flagged up as an issue. 

If you are having symptoms, I encourage you to ask your doctor to do some blood tests. Ask them to test your iron levels and include an iron study, which will give your ferritin levels.

Also, ask to be tested for folate and vitamin B12. These work together with iron and often cause similar symptoms. Include a test for vitamin D at the same time – many of us in the UK are deficient in vitamin D and the symptoms can overlap. Finally, ask for a full blood count to check your red blood cell levels and a bone study to look at your bone minerals.

Then, ask for a printout of all your results so you can look at them yourself at home and ask a specialist for a second opinion. Doctors within the NHS must work to their procedures, so will only recommend treatment if your ferritin score drops below a certain level. 

If you can afford to seek a private specialist, you can access treatment earlier and optimise your health. They’ll help to diagnose what is causing your symptoms and discuss your options for treatment.

MAKE YOUR HEALTH A PRIORITY

If any part of my story has resonated with you, I encourage you to get a blood test and find out if you are deficient in iron or any other vital nutrient.

Don’t be tempted to ignore symptoms and carry on regardless – treatment can help you feel so much better. And you never know when a deficiency might indicate an underlying issue, as mine did.

For other health hacks, including Face Yoga routines, follow me on Instagram or explore my YouTube channel. Or why not dive deeper by enrolling in one of my courses? As well as the two teacher training courses, in Face Yoga and Facial Gua Sha, I offer a ten-day course for personal use, which comes with a free digital copy of my first book, Danielle Collins’ Face Yoga.