Real Stories: Parenting a Child With Coeliac Disease, Hypothyroidism and T1D

When your child is diagnosed with more than one lifelong health condition- like coeliac disease, hypothyroidism, and Type 1 Diabetes- it can feel overwhelming, isolating and relentless. Here we share the real life experiences of a family who are navigating this complex mix of daily management, food restrictions, medications and emotional ups and downs.

Their story offers practical insight, encouragement and reassurance that while the road may be demanding, you are not alone. These words of strength, adaptability and fierce love are here to remind you that others have been where you are and are walking alongside you.

1. What co-occurring conditions does your child have in addition to Type 1 Diabetes?

Coeliac Disease and Hypothyroidism

2. How old was your child when they were diagnosed with each condition?

Type 1 at 10 months old. Hypothyroidism around 18 months old. Coeliac disease at 4 and a half years old.

3. What were the biggest challenges you faced when managing both conditions at the same time?

Age, her lack of understanding and trouble reasoning with were the biggest challenges for all three conditions. With Hypothyroidism- liquid thyroxine is not greatly absorbed, so we used tablet form from day 1. She was too little to swallow them so I had to grind them into her food. It meant poor absorption (and levels off for years) until she was old enough to take tablets AND to take them 30 minutes before breakfast which is very challenging for Type 1. Repeated blood tests were also challenging for her at her age. Her TSH and t4 were not right for years and it impacted her mood greatly which then impacted her bg control. I am convinced of that.

Coeliac made me rethink all I knew about Type 1 as gluten free food behaves differently as it has a different GI. We had poor control for a long time. Emotionally it was super hard on everyone. After telling her for years, she could eat anything she liked, she suddenly had restrictions.

4. Are there any tools, apps or routines that have helped you manage these conditions more effectively?

Coeliac UK app is amazing as it has a barcode reader and it tells you if food is okay or not okay to eat. So great for shopping in the early days of management. Some food chains have well managed allergen charts, but still a huge nightmare for eating out. Especially for healthy, savoury options. You can find a gluten free cake anywhere, but a sandwich is a big problem. I always keep a gluten free roll in my bag.

5. How do you communicate your child’s needs to school staff, babysitters or extended family?

They are all hit and miss. Type 1 at school is managed okay due to communicating with me during the day. I make the decisions and they follow my instructions.

Coeliac at school is also good as the catering company is knowledgeable about gluten free foods. I pick her lunches in advance from their gluten free options and they send me the carb counts. I even introduced them to 0g carbs jelly!

Babysitters we are very limited on. I only have two friends that are Type 1 savvy and can take care of her needs. Food wise is easy. I prepare gluten free meals before I go out.

Regarding family options, we have no family in the UK. My family is Czech and scared of all conditions. Partly due to not being around her more often and partly that they don’t want to get it wrong.

Understandably, Type 1 Diabetes can feel daunting and even a bit scary to those who haven’t been around it. It’s complex and the responsibility can feel overwhelming- I truly get that and felt it myself at the beginning.

Still, there are moments when it feels very isolating. Friends are often quick to offer help with other children, which means so much- but when it comes to my daughter, there’s often hesitation. Not out of unkindness, but uncertainty. And while I completely understand why, it’s also a quiet reminder of how different our journey can feel at times.

I’m not sharing this to blame or shame anyone- just to gently open a window into this part of life with Type 1. My hope is that, over time, more curiosity, confidence and inclusion might grow, not just for my daughter, but for all children navigating this condition.

6. What strategies have helped your child understand or cope with having three chronic conditions?

It’s a rough ride most times. For the first few years my daughter knew nothing different as she ‘always had it’. Over the last two years, she’s getting frustrated at times mainly about food options rather than diabetes. We received counselling as she refused to have jabs (she has been on a pump for 5 years) and it was becoming a huge problem for emergencies. Our hospital psychologist was amazing.

7. What kind of support (emotional, logistical, medical) has been most helpful for your family?

Medical support has been great. I personally can not fault our Diabetes team. However, I have found the GP, Emergency Department and pretty much any other doctor or nurses knowledge to be shocking. The lack of understanding of Type 1 is a huge problem and I’m having to advocate for her at all times. My daughter and I have both sought emotional support. My daughter for her fear of needles and I received PTSD treatment and then help with rebonding with her, as I became a nurse not a mummy.

Logistical help is ok. I get help with her siblings and often meals arrive out of the blue from my neighbours- which I am so grateful for.

8. What advice or tips would you give to another parent just starting out on this journey with multiple diagnoses?

Ask for help. People will fear the two conditions so ask for help and greatly receive any that you get.

We didn’t tell our daughter she was coealic for about three weeks after her diagnosis. We slowly replaced food for gluten free items. Talked about whether it was nice or not. If it wasn’t nice we never gave it again. Once we had enough gluten free food under our belt we had a chat about whether she was feeling better. I knew she was as her tummy stopped aching. I then told her I knew why it was hurting and that we knew how to “fix” it.

Be cautious with insulin if diagnosed with Coeliac Disease. It will absorb differently and the foods have a different GI. Try eating as many natural gluten free foods as possible i.e. potatoes, rice, etc, rather than gluten free pasta and gluten free bread. Keep checking for Vitamin D and Iron. My daughter dislikes most gluten free cereals and gluten free bread. Those two are heavily fortified with iron so she’s always on the lower side with iron. Get good vitamins containing iron.

9. Are there any specific resources you recommend?

A whatsapp group I set up called T1Warriors has been a Godsend. Unfortunately, none out of 50 families have Type 1 and Coeliac Disease, but some have one child with one and another with the other. So we often share tips on gluten free foods/ restaurants.

10. Is there anything else you’d like other parents in the Type 1 community to know about managing multiple diagnoses?

You are not alone. As my daughter didn’t understand due to her age, I took it all on me and I was a mess for a while. Seek help either with your teams psychologist or a service called icope- they both helped me tremendously. Educate yourself and get cooking and get your children involved in cooking. We find making positive noise around food helps the diagnoses.