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Member Since 24 Feb 2009
Offline Last Active Oct 19 2014 10:17 PM

Posts I've Made

In Topic: Trying To Figure Out My 4 Year Old's Joint Pain/body Pain Issues

19 October 2014 - 10:13 PM

One of our children has joint pain issues, and they seem to be greatly worsened by gluten exposures.  She has been gluten free for most of her life.  She presented with horrible joint issues following prolonged, chronic exposures at school that resulted in chronic, painful skin rashes.  Her first hospitalization resulted in testing for several tick-borne diseases.  In her second hospitalization (it was immobilizing and sometimes roving joint pain - the hospitalisations were due to severe joint pain that settled in her hip leaving her unable to walk - different hip each time). The second hospitalization put us in with a rheumatologist that agreed strict gluten elimination seemed most effective for her.  Eventually, the schools became more accommodating, and the rashes and joint pain abated.  We have since gone to another rheumatologist for a check-up on her progress, as we were overdue for rheumatologist follow-up.  He explained that she has joint hypermobility that lends itself to easy injury, and he also believes that gluten making it worse is a very likely and understandable issue.  He is helping us to address some of the things that we can do to help her manage the joint hypermobility condition.


So, all that to share our experiences and suggest that in addition to a gluten connection, you may also want to consider tick-borne diseases and joint hypermobility syndromes.


Someday, I want to spend some time researching the joint hypermobility issues.  I want to understand if joint hypermobility is related to connective tissue disorders and understand if those are likely presentations of celiac/gluten issues.

In Topic: Feeling Angry!

13 October 2014 - 05:37 PM

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.

In Topic: Helppppp

07 October 2014 - 07:35 AM

One of our kids gets chronic cough with gluten exposure. Last episode was triggered by an orthodontic appliance in her mouth. A few years ago we had issues with her chronic cough when we were still trying to sort out diet and protocols. Sometimes I wonder if the cough is GERD related, or perhaps EE. I just don't understand it! And it is debilitating! I hope you figure out something. We have to keep very strict home and school protocols in place. I am happy to answer questions about our experiences and help brainstorm possible gluten sources if you want.

In Topic: Australians And New Zealanders Hellooooooo :)

01 October 2014 - 12:25 AM

It turned out to be pretty easy to find a gluten free hairspray here.  Most of the ones that I looked at (not that many, but a few) did not list gluten ingredients.  Bedhead (what family member had from USA, and it was available in the shop here) had wheat in it.

In Topic: Australians And New Zealanders Hellooooooo :)

30 September 2014 - 08:28 PM

My family has coeliac and gluten/wheat allergy.  I am suffering from an allergic reaction after exposure to someone who is using hairspray with wheat in it.  It seems the most obvious place to start - find a gluten/wheat free hairspray (found wheat in hairspray when I was trying to figure out what was causing my allergic reaction that is customary to my airborne gluten/wheat exposure - hairspray is from USA, but we are in Australia).  In addition, the accommodations are not spacious, and the hair spray is used in a bathroom that is close to eating and food preparation areas.  While not ideal, it will most likely be a common occurrence as we travel around in holiday accommodations.  I hope the coeliac society can broaden their vision in helping ALL people with gluten issues find safe and applicable information about living gluten free in Australia.


I just don't shop for hairspray (don't use it ever) and was hoping someone here could tell me a good gluten free brand to get - thanks!  Perhaps there is no gluten in hairspray here, but after my experiences looking at shampoos and conditioners here. . . I assumed that it would be common in hairspray here.