Hi there. I have a diagnosis of HSD but my specialist EDS physio and GP both now think it is actually HEDS due to recent prolapse and confirmation of high narrow palate which mean I now meet the minimum HEDS diagnostic criteria. I also have pots, erythromelalgia and fibro.
It does feel like things are getting worse and over the last fortnight I have started to get allergy-like reactions to food. It’s not clear which foods but essentially I develop an itchy throat then diarrhoea and sometimes large itchy hives within a short time of eating. This is a big change for me as I’ve struggled with constipation for years and rely on Macrogol to keep things moving. I’ve heard MCAS can go hand in hand with EDS & Pots? I also have cystitis which my physio thinks is more likely histamines in my urine (which seems dark at times despite drinking 5l of water each day). Does this sound familiar to anyone!?? Thanks in advance
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So MCAS is defiantly more common with people with EDS (it is a co-morbidity ) but there is a really weird phenomenon with pollen that can actually increase allergies to certain food when you are allergic to the pollen. The best thing is really to get allergy expert there potentially be loads of things going on. I hope it all get sorted soon
Thanks for your reply Fuunycat - I saw rheumatologist on Fri and he said gastro referral will be first step and we’ll see from there… I think you’re prob right about the pollen aggravating it as it’s been worse on days I’ve left the house (I don’t often).
If you can, wearing a good mask when outside and using an air purifier inside may help with the pollen-related symptoms. Even for those of us who don't have the pollen-food symptoms (pollen food allergy syndrome or pfas), being in the middle of reacting to one thing -- so levels of histamines, leucotrienes, and related compounds already are elevated above the reaction threshold -- makes us more likely to react to other things.
Or, as some folks put it, the histamine bucket is full.
I raised MCAS with my GP. Had one blood test and then nothing as the tests came out normal. Symptoms are occasional flare ups for no reasons and reaction to certain foods and meds.
Ive since read that the first line to treatment is just the same antihistamines I take for hayfever. Ive upped my dose and touch wood Ive not had a flare up since. My plan is to mention is to my GP but just see how I go. If it is full blown MCAS the likelihood is it will get worse I guess...
The blog MastAttack has a bunch of good information, including how MCAS gets diagnosed. But yes, first-line treatment is Zirtec (cetirizine) plus famotidine (or one of its relatives), plus avoiding known triggers.
Hi Ginny_Ickle . I had an NHS dermatology clinic a couple of days ago - which I’m under for erythromelalgia- and I raised the issue of my worsening reactions. It was a different consultant to the usual guy and he was very keen to look at the bigger picture, given I’ve been diagnosed with hEDS recently and my allergies have been rapidly worsening. He’s suggested a 4 week trial on a low dose of montelukast. I was more than happy to try - and grateful - but having read a tonne of posts about the mental health side effects many people get I’m now apprehensive. Do you have any experience of it, if you don’t mind me asking? Thanks …
Montelukast is awesome for me. I've never had any trouble with it. Hope it's good for you, too.Z&Z generally is the first-line treatment for mcas: Zyrtec (cetirizine: a cheap "non-drowsy" antihistamine; sadly, one of the ones that doesn't work for me, so I'm on Allegra instead) and Zantac (used to be ranitidine, now famotidine; both are acid-blockers but also a different kind of histamine blocker).
I'm on the antidepressant Doxepin, not just for depression but also for chronic pruritis and urticaria (itching and hives). Another winner for me - replaced three meds.
That’s brilliant to hear Ginny_Ickle - thank you - and helpful to know what other things might be suitable. I thought about asking my GP to prescribe a high dose certrazine or similar as I’m getting through 2 boxes of 30 a week of the OTC ones and it ain’t cheap!
PS Ginny_Ickle - I take Omeprazole daily but I guess if Montelukast starts to have a positive effect then it’s potentially a sign my gastric symptoms are also mast cell related and Zantac is more appropriate…
I looked up your constipation medication to find it’s polyethylene glycol. I have hEDS and became allergic to that substance. I had a rash, itching, a tingling tip of tongue, and I could taste it. All very weird until you learn that it was the worst allergen of 2018 winner of the year. I’m so sensitive I get symptoms which last for days after using a hair coloring product for 20 minutes. My allergist/rheumatologist said, “Yes, that’s a really bad ingredient.” Still it’s put into many products. So I limit my exposure as much as I can.
You might think about taking that medication off of your treatment list and trying something natural, like sauerkraut, live culture yogurt, water soluble high fiber foods which all vastly improves my chronic trouble. Good luck!
Hi jindakay - thank you. I had no idea! My symptoms definitely worsen on days I take cocodamol which I know is a mast cell antagonist too. I tend to use Macrogol the same days (for obvious reasons!) so I probably need to take a break from both to see if that improves things. But I’m torn between that and seeing if the Montelukast helps while I continue with my diet and meds as is, as it’s part of understanding if there is a mast cell problem… even if it’s just a process of elimination. We don’t have it easy do we!!
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