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Autoimmune disease

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Allergies or something else?

4 replies

Lemon8 · 05/05/2024 16:33

My ds15 has been very ill with various allergy symptoms for over 4 years and is pretty much housebound. Not responding to any treatment and now on the waiting list for desensitisation for house dust mite.

He does have positive tests to many allergens but I am worried something else is going on too and feel like this needs more investigation. Would anyone be able to signpost where best to go for possible autoimmune or allergy type conditions?

He has severe eczema, multiple allergies, rhinitis, hives, allergic conjunctivitis, fatigue, insomnia, swelling in eyes and face, flushing (bright red skin on face), rashes, headache, whole body ache, brain fog, gastric issues, loss of appetite, nausea, diarrhoea and all happening in massive flare ups that have him in bed for a week and take a few more to recover. He is only ok for a couple of weeks at a time at the most (still has mild symptoms but is able to function) then it all starts again.

Any ideas would be really appreciated, we are desperate and not sure who else to try - have seen an allergist and dermatologist.

OP posts:
ILikePistachios · 05/05/2024 16:36

I have those exact symptoms, thankfully controlled by medication and I have mast cell activation syndrome, has the immunologist done a genetic test?

Lemon8 · 05/05/2024 16:45

@ILikePistachios I have just recently read about this and was wondering. No genetic tests, just allergy tests and general blood tests through the Gp. Do you know where best to go for investigating this kind of thing? We are seeing an allergist privately while on waiting list as our first hospital was hopeless. Do you know if the Gp can order the right tests or would we need to go through a consultant?

OP posts:
TryingAgainAgainAgain · 05/05/2024 16:51

Poor lad, that's terrible. I also immediately wondered about MCAS. This support group is worth a look, they have a youth section too: www.mastcellaction.org/about-us

ILikePistachios · 05/05/2024 17:02

Lemon8 · 05/05/2024 16:45

@ILikePistachios I have just recently read about this and was wondering. No genetic tests, just allergy tests and general blood tests through the Gp. Do you know where best to go for investigating this kind of thing? We are seeing an allergist privately while on waiting list as our first hospital was hopeless. Do you know if the Gp can order the right tests or would we need to go through a consultant?

Mine was done through my immunologist so that's all I know who can do it I'm afraid, if you tell your GP that's what you suspect, they might be able to give you more accurate referrals to specialist who can help

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