Well, here we go again, my other daughter, who is currently 8 years old, was diagnosed
with Coeliac Disease three weeks ago, and I am devastated.
Hers was an interesting one, as it took a few leaps to get to the diagnosis. Here's an insight into how it happened.
When my eldest daughter was diagnosed in June last year (2023) we were all tested for CD by bloods. My youngest at the time had a slightly elevated level, and as such we kept her on gluten and repeated the blood test 3 months later. At this stage she was still slightly elevated, and we were told an endoscopy would be required for a definitive diagnosis. So we took her in for an endoscopy, and had the follow up appointment post biopsy pathology. No - she's not Coeliac, there was no evidence of the disease. It was recommended we follow up bloods in 6 months.
Fast forward 6 months and bloods were taken again, only to show again some funny levels. Keep her on gluten, and let's retest in another 2 months. (So much fun for an 8 year old - but she handled it well!). These results showed still elevated levels, but they were jumping around a lot, up and down, so much so even the gastroenterologist was a bit perplexed. So it was decided she would have another Endoscopy to be sure what's going on. When the Doctor saw us after theatre, he said he couldn't see evidence of the disease, but we would need to wait for the biopsy results to come back. One week later, and he called with the news. Half of the biopsies showed evidence of the disease, and he could now officially say she has Coeliac disease.
The news hit me so hard. It's like grieving through the whole process again - a year later. I'm devastated, and to be honest, have not received much support from people, which is probably why I'm finding writing about it so helpful. So many people say 'oh well that's easier now to have both gluten free'. There is nothing easier about having two kids with Coeliac Disease. It's now double the worry about their long term health implications, double the logistics of when they go to parties, school events, social gatherings, extra curricular activities and everything that comes with it. Double the gluten free food bills, because of course my two children eat completely differently. Double the mental load on me and my husband. Not to mention the "Oh how strange, you and your husband don't have Coeliac disease, but both of your daughters do?" comments.
In a view to try and feel positive, what is easier is that now it's not just my eldest daughter who misses out, her younger sister is with her for the ride. They are calling themselves the 'Coeliac Sisters' and are supporting each other, so that is beautiful to see. I'll just quietly cry in the corner away from them and try not to spiral about the enormity of it all. I think that's where the second time is harder, I'm more aware of how difficult it is parenting a child with Coeliac Disease, I have no ignorant filters on like I did the first time when my eldest was diagnosed. But as always, we as parents put one foot in front of the other and carry on, and hope that we can educate our kids to be the healthiest they can be and make the best choices for their bodies, so that once they are out of our care they know what to do.
Don't get me wrong, I'm incredibly grateful for the diagnostic tools available for us and that we were able to pick this up early. Which is what the gastroenterologist has concluded with my youngest daughter. The fact that her damage was minor, and that she won't have a long time to repair is excellent, and without her sisters diagnosis we may never have found that. I feel good knowing that the dignosis means a healthier child, and a healthier long term outlook for her and that's the main outcome.
It just doesn't stop the 'unfair' feeling of our kids being stuck with this lifelong condition.
In the meantime, I'll just keep trying to find alternatives for gluten free food that they like, and learning to create more dishes from home, seek out the safe restaurants and hope that this trajectory of coeliac safe food continues to increase.
If anyone feels the same or wants to vent, please do reach out to me, I'm always keen to talk to others in the same boat.
Much love,
Marissa
Kommentare