Feeling Angry!

[*charliesmum*]

Hi I haven't posted for a while as since me and my son have been diagnosed and on a gluten free diet for almost 3 years now we have been virtually problem free!

However, my son started school last month and all had been fine until he needed to go to The Base which is the wrap around care at school. My partner picked him and up and received a phone call soon after apologising saying she had fed my son gluten noodles!!

After trying so hard to keep his diet gluten free this had not only disappointed me but my son was also extremely upset. He got his self so wound up the he threw up. Since then (just over a week ago) his stools have been very loose wit him making in the night with tummy ache and needing to go to the toilet. Today I am unable to send him to school because of this. He has been well in his self but his tummy doesn't seem to have settled.

Does anyone know how long these symptoms can go on for?? I feel awful for him.

I got myself so upset about it that I haven't been able to approach the club but do need to go in and speak to them and make them aware of how serious the situation is! If this was a child with a peanut allergy they could have ended up in hospital or worse!

I filled in the forms properly and stated that Charlie was coeliac and had to have a gluten free diet. I also spoke to the manager in person and was assured they had gluten free food to offer him so how this has happened is hard for me to grasp!!!

Any comments would be much appreciated x

[seejenrun]

Personally I wouldn't trust the school to know what to feed my child. My son brings all of his own food whenever he leaves the house. That's the only way be sure especially if your son is younger and unsure of what he can and cannot eat.

[*charliesmum*]

The school itself is briliant. He has all gluten free dinners there and has had no problems (school lunches are free for all infant children so the scholl must cater to dietry requirements). The base is a separate run after school club but she assured me that other children attend that follow a gluten free diet and they could cater for his needs. I understand what your saying about taking your own food etc. I did ask if I needed to take him something in.

Do you think these symptoms are from eating the noodles with it being over a week ago? I have rang the dietician but could only leave a message and wait for a call back. How long do symptoms go on for? I myself am coeliac and gluten free but we havent had an 'accident' like this before x

[cyclinglady]

Everyone handles a glutening differently. A few days to a few weeks. Hope your son feels better!

About the school.... Just because they can or must accommodate does not mean that it will always be safe. Cross contamination and not following procedures can and does happen. Ask to be walked through gluten-free food handling procedures and offer suggestions. Our local university claimed to be gluten free, but they baked and mixed dough on pans that previously held gluten (and the mixer was not clean!). They did not change gloves or used utensils (knives and spoons that had contact with gluten.). The head chef was so proud and told me they even had a gluten free employee advising them. I questioned her and she did not have celiac disease nor any health issues with gluten!

[julissa]

I can't imagine having a child with this issue. in the past before I figured things out I could be sick up to a week after a glutening. hope your son feels better soon

[nvsmom]

I agree with cyclinglady, it usually takes a few days to a few weeks to feel better. Two weeks seems the average for starting to feel well again but quite a few are still fatigued and "off" a month later.

 

I also agree that he should have his own packed food at the base. They've proven that they can mess it up.  It is better to be safe than sorry, so if it is feasible I would pack him food to eat out of school in re-heatable containers.  If having different food is an issue for him you can always get their menu and try to co-ordinate with what they are serving.

 

Hope he is better soon!

[*charliesmum*]

Thank you very much for your replies. Much appreciated x

[weluvgators]

Hi charliesmum!  We allow our children (coeliac and gluten allergy) to eat food that is prepared by out of school hours care providers.  One requirement that we have is that they eat on their own dishes, using their own utensils.  They have a well labeled "gluten free" plastic container with lid that is used to store their dishes and emergency snacks in a separate, gluten free part of the kitchen (we maintain a "no gluten flour" policy as well).  Their dishes are also washed separately (our current carer insisted on buying a separate tub to wash their dishes which I appreciate).  These procedures force the provider to recognize the gluten allergy each time the children are fed.  There are also designated serving utensils, cutting boards and serving platters that are used for gluten free.  We also keep a dedicated toaster when the kids need toast.  We have found multiple providers that find it easier to take the whole group gluten free when our kids are in attendance.  It really is not a big deal to do such, and I am happy to help you brainstorm ways to nudge them in that direction.  I did forward the coeliac society's recommendations for serving from shared kitchens, and they appreciated the guidelines.

 

And I understand being angry.  I would be furious.  I think it is a normal and healthy reaction to what happened.  But learning to navigate coeliac can be a hard, frustrating and confusing process for everyone involved.  I hope that your care providers take this incident to heart and implement processes and procedures to help ensure that it never happens again.  Keep after them.  We have had good results and bad results trying to communicate our needs with others.  I just try to keep it kind and gentle while trying to include educational bits.  I would encourage that they all get a refresher course in caring for children with food allergies....I know it is not an allergy, but our best successes have been with carers that are well trained in food allergies.

 

As for the timeline of your son's recovery, everyone is different.  Our recovery from exposures usually takes weeks, and it certainly depends on the source of exposure.  Good luck!  I hope your son is feeling better soon.

[*charliesmum*]

Thank you for your message weluvgators, very helpful

I have taken Charlie to the doctors this morning for reassurance as his stools are still far from solid  She said it sounds a bit too much of a coincidence for it to not be the noodles that have caused his tummy troubles but we are to take in a stool sample just to check for bugs!

Charlie has made it clear he doesn't want to go back to the base which is understandable but there are occasions when he is going to need to go. I may send him with a pack up. The doctor seemed to think this was a good idea not only to ensure the food he eats is gluten free but also for him to regain confidence in what he is eating is ok.

[BlessedMommy]

I think that's the best plan, is just to send him a packed lunch. I hope that he feels better soon!