Newly diagnosed coeliacs: when will life get better?

March 12, 2019

I can clearly remember the first day I felt better after going gluten-free. The realisation was euphoric: finally, I no longer had a massive pain in my belly. I could stand up straight. I was happy.

 

 

But that didn't happen overnight. A coeliac diagnosis currently means abstaining from gluten for life and the time it takes for your insides to heal isn't always quick.

 

According to Coeliac UK, "It can take between six months and up to five years (in some cases longer) for the gut damage caused by eating gluten to fully heal." That's a l-o-n-g time when you're going through it, even if it's "just" 6 months.

 

But what does "going through it" actually mean? The trouble is, it can differ greatly from person to person. Coeliac UK has listed a range of symptoms but (a) it's not an exhaustive list and (b) they're so different it's difficult to argue which would be worse.

 

Some symptoms of coeliac disease:

 

  • severe diarrhoea

  • nausea & vomiting

  • recurrent cramping & bloating

  • depression

  • repeated miscarriages

  • mouth ulcers

  • fatigue

 

It's easy to see why you'd be happy if these symptoms disappeared.

 

If you don't feel better:

 

But what about when you've been diagnosed, you're following a strict gluten-free diet and nothing seems to have changed?

 

The first thing I'd suggest is making a doctor's appointment. Take a food & symptoms diary with you. Make it clear when the symptoms are happening and what you've eaten. If you can prove you're not eating gluten, it makes it easier for the doctor to help.

 

Secondly, make sure you're getting enough of the right nutrients. A common culprit for many coeliacs is lack of iron. Another is lack of vitamin B12.

 

Thirdly, it's important to check whether you've also got any other issues, like IBS (Irritable Bowel Syndrome). 

 

Finally, if this approach doesn't help or you don't feel you're being listened to, you're entitled to a second opinion and can ask to see a different doctor or gastroenterologist. 

 

Checklist

 

  1. Eat only gluten-free and wait 6 months. (Unless your symptoms are completely unmanageable, in which case an appointment at the doctor's would be wise.) 

  2. Make a food & symptoms diary. Be thorough.

  3. Make sure you're getting enough of the right nutrients such as iron and vitamin B12. Your coeliac diagnosis should entitle you to an appointment with a registered dietitian who'll be able to tell you which foods you can eat.

  4. See the doctor/gastroenterologist again. Check you haven't got another condition (like IBS).

  5. Get a second/third/hundredth opinion. No, no-one wants to be labelled a hypochondriac, but if your symptoms aren't getting better and your doctor's not found a solution, you need to find the root cause.

  6. Get hugs. Plenty. Having sympathetic family and/or friends is a must when you're ill and feel down about things.
     

Know that things will get better

 

I couldn't bear it when I was constantly going to the doctor's but not getting better. I just wanted to know what was wrong with me. When I finally got a diagnosis, it was something I could manage. The pain hadn't gone but I knew it would, which was comforting. I believe the mind can be very powerful in helping (or hindering) progress. 

 

Are you newly diagnosed? Have you any struggles or tips you'd like to share? Please let me know below and I promise you'll be heard!

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