Lola and the Gluten

We have new enemy in our house. Gluten. Who knew it could cause so much damage, so much pain, so much physical distress?

My youngest daughter is fifteen and during the lockdown last year she started suffering agonisingly painful periods. She was screaming in pain. Lola is a dancer and in my opinion has a high tolerance to pain. This was out of character and terrifying. We talked to the doctor, over the phone. 

Lola - approximately 6 years old.

They gave her some pain killers. The same pain killers I was given for bad period pains FORTY YEARS AGO! Turns out, the following month, the pain killers she was prescribed didn't help AND weren't as strong as the ibuprofen I could get over the counter at the pharmacy.

I called the doctor again. We spoke to someone over the phone, who suggested, she went on the pill (which is exactly what I had to do in the end - FORTY YEARS AGO!)  I talked it through with my husband, she is a sensible girl and surely that's better than taking pain killers constantly? I also said to the doctor how concerned we were, I suggested a blood test, an ultra sound, a proper investigation.

Lola went on to the pill. She got migraines and the period pain wasn't much better. Migraines are a big no no on the pill they had given her. Another call to the doctor. I mentioned how concerned I was, I suggested a blood test, an ultra sound, a proper investigation - again. 

The doctor suggested she try another contraceptive pill. She also has to have special pills for the migraines she gets now.

The pain continued the periods didn't magically disappear with the new contraceptive pill. I phoned the doctor again. This time they agreed to a blood test 'although I'm not sure what it will show'. By this point Lola had also developed other separate stomach problems. Bloating, discomfort. The doctor said it was probably IBS but he would get a gluten test and test for anaemia on the blood test, he said he would also refer her for an ultrasound. (I was insisting by this point and had a formal complaint in with the doctors surgery). 

Lola doing mixed martial arts with her older sister.

The doctor called us - The blood tests results were in - She showed significant signs of *coeliac disease. A person without Coeliac has a blood test result of 7 - a positive test for gluten intolerance is 10 - Lola's test showed as 128.

How is this all linked to period pain I hear you ask? Well, there has been a small study in the Netherlands that clearly identifies a link - you can read about it here 

The British Medical Journal is currently looking at further research from the Netherlands who are now looking at testing all children for gluten intolerance to avoid further related and more serious problems (thyroid issues, osteoporosis, malnutrition, cancer). I personally think, this would be a brilliant way to avoid the additional pressure this puts on the NHS.

Lola last October still dancing in the Tapathon for Children in Need

We are now optimistic that my intelligent, energetic, lively girl will return to us once we can stop giving her gluten. This diagnosis has taken nearly eighteen months. Admittedly, it has been at a time when the NHS and GP's have been under a huge amount of pressure - BUT - I am hugely disappointed that women's reproductive medicine seems to have not moved on at all and a one size fits all approach seems to be standard.

With a few more questions, a bit more investigation, a simple blood test, this problem could have been resolved over a year ago, instead Lola has suffered from painful periods, fatigue, dizziness, uncomfortable bloating and stomach pain. She is weary. She is fifteen, she should be full of life. 

However, despite all of the above, she continues to dance, she continues to do her drama lessons outside of school and has just had her latest report with estimated grades for her GCSE's, none are under the equivalent of an A grade. Her resilience is inspiring. (She also gave her permission for me to write this as she wants this information out in the world to help other young women).

*Coeliac disease is an autoimmune disease which attacks the small intestine, the body thinks gluten is it's enemy and attacks it, which is what causes the pain and discomfort. 

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