Lola and the Gluten - Part 2

I can't believe I haven't blogged since June. I apologise. It has been a hectic few months.

Life can be like that sometimes, busy, stressful and hard. 

Over the last couple of months, in order for Lola to get the formal diagnosis of Coeliac Disease we first had to see a consultant. This took eight months to happen.

The consultant was lovely, extremely apologetic for the delay etc etc - and I understand, Covid has messed everything up. I was hoping that her first blood test which showed her gluten levels at 128 (a positive for intolerance to gluten is between 7 - 10) would be enough, apparently not - In order for them to formally diagnose her she needed two blood tests both showing a similar result. Fortunately, they no longer needed to do a endoscopy as well. This meant that Lola would have to eat (as the consultant put it) more gluten than she ever normally would. 

They took a blood test before she started to get a base line, and then she started eating gluten. We went to Macdonalds (who don't offer any gluten free options, unless you count the salad things - they also say the chips, but I think there is a risk of cross-contamination), her favourite pasta places and she ate loads of toast - which she isn't particularly keen on, but she was going for it. We all hoped two weeks would be enough, because she instantly started to struggle with stomach pains and became too ill for school.

Two weeks wasn't enough and school started to be, em... more challenging. I had to agree a part time programme - Even though, prior to this,  I asked for work to be sent home, they couldn't/didn't and seemed to have forgotten all the things available to them that they used through Covid.

This involved me taking her and picking her up for the next two weeks. Fortunately, because I work for myself from home, I could do this - but I would be lying if I said my work didn't suffer. (Although, my mind wasn't really on work as I was very concerned for her - she had a constant headache and was very poorly, she started to look very thin and unwell again). 

Fortunately, after four weeks we finally got the formal diagnosis - we have a date to see a dietician and once we have seen them, I will book her an appointment at the doctor so we can get all the free prescriptions for various gluten free foods. 

What I have learned through all this, is people don't really understand what Coeliac disease is - so here is a quick explanation. 

Coeliac disease is an autoimmune disease with no current cure. It is a life time diagnosis. Lola can never eat gluten again. If she does her body attacks itself, stopping food being absorbed causing at worst, malnutrition and organ failure. Imagine having to deal with that when you have just turned sixteen - It's a lot. She has been incredibly stoic throughout and I am very proud of her. 

Below are some of the things she has learned:

She can't just pop to Maccy's with her friends for a snack. She has her own snacks she carries with her.

She will need to ask a person, before she kisses them, what they have been eating because she is that sensitive to gluten. 

Lola won't be able to just go and have a mad night out - for example, at freshers week when she starts university. Of course, she will be able to go out, but have to stick to certain drinks she knows are safe - some mixers in cocktails have gluten in them - she doesn't want a hangover AND feel terrible because she has accidentality consumed gluten. 

These are just three examples of how this disease will affect her throughout her life. So when a teacher asked me - when she was eating gluten and feeling terrible, 'if this was the right time to do this?' I was furious - Of course it's not the right time. She is just about to start her mocks in preparation for her GCSEs - but when is the right time to poison her with gluten, when is the right time to make my daughter ill? Just before her 'A' Levels maybe or when she starts Uni?

No time is a good time, but by doing it now she can now get all the support she needs. 

Hopefully, now she can start moving forward - she has always been a great cook so she has been experimenting with gluten free baking - here are a couple of the things she has made (and they were delicious!)

Chelsea buns

Cheese crackers

Okay - well that's it from me for today but I do have loads more to update you all on so, hopefully, I'll be back soon. 

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