Where can you get information on unusual allergies?

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R2D2 JKLW
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by R2D2 JKLW on Wed Feb 01, 2017 3:17 pm

Where can you get information on unusual allergies?

My son has a top-14 allergy but, like many, also some more unusual ones. There is a wealth of information, and provision for the top-14, but finding information on the others is really tricky. Trial and error always feels risky when anaphylaxis is a potential, but things constantly come up that the charities, doctors and forums have difficultly answering. An example: my son seems to be having frequent minor reactions - and I'm wondering if Limonene could be a problem as he has citrus fruit and citrus pectin allergy. Although we can (and probably will) start excluding it for a time to see if it helps, it would be great if there was more information about the likelihood it would be a problem...
Last edited by R2D2 JKLW on Thu Feb 02, 2017 1:03 pm, edited 2 times in total.

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Dr Chris Rutkowski
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by Dr Chris Rutkowski on Wed Feb 01, 2017 9:19 pm

Re: Where to get information on unusual allergies

what symptoms does he get when exposed to common food allergens? Has he been skin or blood tested yet?
Dr Chris Rutkowski
Consultant Allergist, MD, MRCP

http://www.talkhealthpartnership.com/on ... kowski.php

R2D2 JKLW
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Joined: Wed Feb 01, 2017 3:05 pm
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by R2D2 JKLW on Wed Feb 01, 2017 11:09 pm

Re: Where to get information on unusual allergies

BRIEF HISTORY: First clear reaction was tingly tongue, itchy mouth and throat, then from about an hour later several bouts of vomiting (2013 - cashews) - one week later admitted to hospital with asthma that wouldn't respond to his normal steroids. Skin prick positive to 3 nuts - admitted to hospital same week as test with asthma again. Continued to have reactions to jelly sweets, amongst other things, with nut warnings, mainly minor and then extensive face swelling and generally feeling unwell inside. 'May contain nuts' cut out, but reactions continued. Nov 2015: having collected all ingredients lists our NHS allergist, amazingly, was able to suggest, accurately, it could be either pectin or gelatine; at same appointment blood tests positive to all nuts tested. January 2016: Anaphylaxis to a yoghurt drink containing pectin confirmed diagnosis - accidental exposure (tongue itch, throat tight, stomach hurt, sudden wheeze requiring ventolin, sometime later face swelling and itchy hives all over body progressing - ambulance to A&E, 24 hours before face swelling subsided, should have had Epipen earlier but paramedics with us suggested not). Follow up appointment skin prick test positive to the yoghurt and blood test positive to citrus fruits... Currently experiencing similar small reactions to those leading up to pectin allergy diagnosis - odd spot, itchy patch of skin, sometimes tongue tingling, frequently with stomach cramps - antihistamines help, followed by careful monitoring as prone to delayed symptoms. Be great to find others with similar allergies or doctors who treat them/research them, so can exchange notes on things like limonene and unexpected places you may run into allergens e.g. medicines.

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Dr Chris Rutkowski
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by Dr Chris Rutkowski on Fri Feb 03, 2017 9:10 am

Re: Where can you get information on unusual allergies?

you are correct - he should see an allergist as his reactions are quite unpredictable. Pectin can be found in many different foods and medication; pectin is commercially extracted from citrus fruits. Gelatin allergy (oral) is very rare. Allergy to gelatin in medication - more common. Limonene causes mainly contact dermatitis.His asthma control is a priority
Dr Chris Rutkowski
Consultant Allergist, MD, MRCP

http://www.talkhealthpartnership.com/on ... kowski.php

R2D2 JKLW
Posts: 5
Joined: Wed Feb 01, 2017 3:05 pm
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by R2D2 JKLW on Fri Feb 03, 2017 10:37 am

Re: Where can you get information on unusual allergies?

Many thanks for your reply. However, I think I need to be clearer on the question as it seems to have been mixed up with discussion around my son’s known allergies and asthma. As you will appreciate in the UK much of the research for managing allergen avoidance, and identifying allergies themselves, falls to the patient/carer with infrequent visits to an NHS allergist. So the question is are there any ways to identify patients (and their clinicians) that share unusual allergies in order that they can compare notes and exchange information between themselves to further knowledge?

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Dr Chris Rutkowski
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by Dr Chris Rutkowski on Fri Feb 03, 2017 11:28 am

Re: Where can you get information on unusual allergies?

charities involved in this online clinic can offer support (see their logos - top section of this page)
Dr Chris Rutkowski
Consultant Allergist, MD, MRCP

http://www.talkhealthpartnership.com/on ... kowski.php

R2D2 JKLW
Posts: 5
Joined: Wed Feb 01, 2017 3:05 pm
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by R2D2 JKLW on Fri Feb 03, 2017 12:16 pm

Re: Where can you get information on unusual allergies?

Thank you. We are well known to the Anaphylaxis Campaign and Allergy UK (my sons are Allergy UK Heroes this year) and regularly post in forums, but it seems identifying people with experience/knowledge in specific unusual allergies is no easy task. I think it's one of those things we just have to keep putting feelers out for.

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Dr Sian Ludman
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by Dr Sian Ludman on Wed Feb 08, 2017 12:50 pm

Re: Where can you get information on unusual allergies?

Hi R2D2

I think Dr Rutokowski has covered most things, but I don't believe there is a parental forum where you can pool information on more unusual allergies, Allergy UK might be open to such a suggestion....
Dr Sian Ludman
MBBCh, DRCOG, MRCPCH, MSc Allergy, European Diploma in Allergology

http://www.talkhealthpartnership.com/on ... ludman.php

R2D2 JKLW
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by R2D2 JKLW on Wed Feb 15, 2017 2:57 pm

Re: Where can you get information on unusual allergies?

Many thanks for your reply. Allergy UK has a useful Facebook group where we often exchange information and also a forum, which I haven't been on lately so certainly worth a try. These type of things do identify some with the same or similar allergies, but the response to questions can be quite diverse as regards quality. It would great if there was a UK database where patients and clinicians could identify others with similar allergies and pool resources and information - it could also further research.
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