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MCAS / Histamine Intolerance Help?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Nothanks, Nov 3, 2016.

  1. Nothanks

    Nothanks Mum of child with CFS, 10 years old.

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    Perth, Australia
    Hi, new to the forums and haven't posted before but have spent ages trying work through research. I'm stuck. I have a 10 year who is chronically ill but just doesn't 'fit' in anywhere in terms of diagnosis - although due to fatigue issues, chronic fatigue has been bandied about. He got sick at 3 - constant nasal drip leading to ongoing ENT issues. A minor operation to remove tonsils and adenoids ended up with him being bed bound for almost a year. Nothing found. Doctors thought we were crazy - all tests normal and he 'looked' ok despite me telling doctors he wasn't - he couldn't function. It took around 12 months for an almost full recovery before he relapsed - which he does around every 12-18 months.

    Over the years he's had pain so bad I couldn't touch him - he had to sit in my lap and touch me but non-specific, no EDS. He's had gastric issues -from chronic constipation to IBS culminating in a eosinophilic esophigitis - despite no known allergies. Got sicker following EoE protocol, top 8 elimination made no difference.

    He's now 10 years old. The only time we have had some 'respite' from a constant stream of 'general' symptoms - from skin tingling, head aches (regularly), nausea (daily), stomach pain (daily), body pain (regularly), failure to thrive, chronic fatigue, reflux, sensitive to heat/cold, his body temperatures can vary over 4-5 degrees in a day with no known infection etc etc, is when we have done an 'elimination' diet - the RPAH Failsafe diet. Got him almost better in a matter of weeks.

    The only symptom he doesn't have is a skin condition - at all. And he doesn't flush - just gets hot - his temp can spike to 40 degrees in a matter of minutes.

    Hospital didn't believe in food intolerances and was accusing us (mostly me) of child abuse instead (despite not presenting with typical symptoms or having any evidence besides a sick child they can't diagnose). I have been researching for years - it's not mitochondrial although there is an energy connection there. He can produce energy but cannot replace it at the rate he uses it. He's been on the receiving end of CBT and pacing - yeah, doesn't work. And because he has no allergies, needs to eat normally. He can't.

    We found the MCAS info through a friend (who has a child with serious systemic masto) and it appears to fit. We've been on a low histamine diet for around 2 weeks. The first few days were hideous and we were both so sore. But I had breathing issues that cleared up in 4 days. My son clears up on plain rice, bread, potatoes but any time another food is introduced, we are back to square one.

    I have no idea how to deal with this now - is it MCAS? Is a DAO? Or histamine intolerance? I have ordered Histamine Block as that appears to be what everyone recommends. What else can I do to try and manage or identify what we're dealing with? I have a general practitioner who will help if I ask - but i have no idea what to ask for? I live in Perth, WA - the hospital here will not help us. Because all the testing they have done is clear, they stand by the theory his condition is somatic. I have argued that testing for kidney disease when the issue clearly something on a deeper level is negligent. They won't listen.

    We have been working with a friend who is a psych for over 2 years - his condition isn't simple. He's anxious and fearful, he gets depressed. He first wanted to die because of the pain and nausea when he was just 8 years old. It's not somatic.

    Any ideas would be greatly welcomed - even on what I can read. I did download the work by Dr Afrin but I'm afraid I just feel overwhelmed by it all and not enlightened.
     
    Marc_NL likes this.
  2. Nothanks

    Nothanks Mum of child with CFS, 10 years old.

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    Perth, Australia
    Whoops - forgot to add that my son has been bed bound pretty much since June this year. It took 6 days on low histamine diet and he's up and out of bed. Definitely looking better but still a long way to go. Almost 100% pain free on bread, potatoes and rice - functions much better but still feels sick. Any time any other food is introduced, he goes backwards - pain, nausea. So it looks like this is the right path to be on?
     
  3. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    My heart goes out to you and your son. You are having such a hard time and are clearly a very caring and intelligent mother trying to do your best for your son.

    I guess you've tried introducing tiny amounts of other foods one at a time to see what happens. I wonder whether there are any other doctors in Perth you could find who do believe in food intolerances and can help you with testing and advice. Or maybe even in other states who you could consult over the internet. There must be some good allergy specialists who understand multiple allergies. I'm sure you've thought of all this already. I hope someone else in here can offer more useful advice.

    I'm sorry I can't help. I hope someone else can.

    Hugs to you and your son.

    :hug::hug:
     
  4. Nothanks

    Nothanks Mum of child with CFS, 10 years old.

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    Perth, Australia
    Trish, thanks so much. I'm just tired - and more than a little confused. I have a few allergist / immunologists I'm going to call next week to see if any of them understand this or would be willing to help.

    I do the tiny bits of foods but he needs two days between them to recover. So that's what I'll do I think. Going to keep it minimal.

    I have the number for a support group so I will call and discuss with them too.

    We had a new food yesterday afternoon (fresh green apple) and he was sore overnight. Did paracetamol at midnight. He whined all night in his sleep then woke at 430am in pain. This time I tried clarintyne. Pain gone in 10-15 mins. So there's something going on...
     
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  5. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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