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Date: 05.11.2014
From: Emma

Subject: Any advice what be appreciated

Hi everybody hope you are all keeping well, I'm writing on behalf of my sister who has a son who is 10, since the age of 2 yrs when he had a cold he used to get a rash on knee and looked a bit swollen, this has got a lot worse now he is older ,he is always off school with pain and redness on knee cannot not put weight on it and stiff in the mornings and if he is able to do exercise he feels extremely tired and flare the next day, his ra factors have come back normal, been to gp which referred us to great ormand street which were useless. He has not been treated by anybody and we are going round in circles but in the meantime this child is getting worse,could anybody advise what we should do next or if anybody knows a good consultant in the Kent area. Any help would so much appreciated.
Many thanks
Emma xx
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Date: 05.11.2014
From: Sean

Subject: Re: Any advice what be appreciated

Hi Emma,

I have a 12 year old and a 15 year old - and with an autoimmune disease myself (Ankylosing Spondylitis) I keep a close eye on their health to see any signs.

My daughter was tested last week for anti-TTG antibodies and also for HLA-B27 gene (for AS) - as she is tired a lot the time and exercise (after breakfast) sometimes triggers asthma. She get some back pains. I am sure it is related to the food she eats...but it is hard to change a diet without evidence.

I am going to suggest something that your doctors may not even consider - but believe me this is not an off the wall suggestion. It is based on JIA and other forms arthritis now being a common initial presentation in Celiac and also in Non Celiac Gluten Sensitivity and other food allergies especially Casein protein from cows milk. Doctors will not even think of this until there is a gastro-intestinal problem - but there doesn't always need to be one. Even if tests are negative for Celiac it is worth trying as there is no accurate test for Non-Celiac Gluten Sensitivity.

http://www.rheumatologynews.com/index.php?id=8929&type=98&tx_ttnews[tt_news]=92534&cHash=da03e20e36

https://www.patrickholford.com/advice/is-your-food-allergy-causing-you-pain

Evidence is that a number of factors increase the chances of getting an autoimmune disease, casearian birth, not-breast feeding and over use of anti-biotics at a young age. These dictate how your protective "gut based" immune system develops - and this is where 75% of all of our immune systems reside.

A diagnosis would be great for your friends son - and the drugs that they might prescribe once diagnosed might work. However these treatments are completely at odds with some of the causes of the disease - and will lead to a lifetime on these drugs.

There are now better skin prick tests for food allergies - and there are also private blood testing for reactions to food.
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Date: 05.11.2014
From: Colin W

Subject: Re: Any advice what be appreciated

hi Emma , dont know why but people with Juvenile Arthritis dont have positive rheumatiod factor , but he needs to be refered to a rheumatoligist , most have juvenile clinics & run hydrotherapy sessions for juniors
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Date: 05.11.2014
From: Emma

Subject: Re: Any advice what be appreciated

Hi Colin,thank you for reply he has been seen by rheumatologist at great Ormand street they were not very good, he has classic signs for some form of arthritis as I have ra myself and his mum has m.e. We have been round the houses of consultants but they are just not grasping the fact that arthritis is in the family and he has had this since he was 2yrs and now it's got a lot worse. If anybody knows of a good child rheumatologist in Kent would be much appreciated. Many thanks .
Emma xx
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