FPIES & MCAS or MCAD

Are there any families out there that was diagnosed with both FPIES & MCAS or MCAD?  Or... anyone diagnosed FPIES that thought they had MCAD/MCAS but only had the FPIES?

Our son is exhibiting signs of histamine dumping at night w/o being exposed to new foods and I'd love to open a dialog w/ someone who has gone through / is going through something similar.

Thanks,

Mark

Original Post

Hello Mark,

Sorry to hear about your son. 

Can you please expand on exactly what MCAS is?

Our daughter is 2.5 and still has FPIES to egg, unfortunately had accidental exposure recently and went into hypovelemic shock (sad she hasn't grown out if it yet). She has no signs of IGE allergies but strangley has been diagnosed with cold urticaria (the non-IGE form), immunologists believes it's caused from a cutaneous Mast Cell Activation Sydrome. 

So not sure when you say MCAS you are referring to same thing ??

Speak soon

Emmy

My boys 5 and 2 shows signs of histamine dumping issues but I have not made headway with doctors on it and it is in frequent though for a while happened a lot with my 5 year old. Also my 5 year old has over 70 fails and shows no signs of growing out of them which preplexes our medical team. He has 12 safes.

Out youngest displays histamine issues predominately (we haven’t tested yet for MCAS), but displays FPIES symptoms to corn, wuite severely. He also has an iGe dairy allergy. His histamine shows very high on tests but there is not an ‘explanation’ For it. We follow a low histamine diet and freeze all leftovers in individual portions to be reheated. In addition, we avoid dairy, soy, corn and egg. 

The only process food he eats is gorilla munch and simply Tostitos plus chick pea and chickpea/red lentil pasta. He eats strawberries though.

With only twelve things he can eat there isn’t much to examine!

mosquito bites are a trigger.

any suggested reading?

Hi Emmy et al.,

To my knowledge MCAS (mast cell activation syndrome) & MCAD (mast cell activation disorder) are the same or at least quite similar.  Marcus has 10 safe foods (turkey, chicken, rice, coconut, corn, elderberry, raspberry, pears, & probably cauliflower) & 2 safe oils (coconut & sunflower) to date.  His biggest triggers are dairy & beef.  Similar to Murphy's child we have an exhausting list of fails.

Marcus displays typical FPIES symptoms to his fails but also had a weird night thing where he'd wake up like clockwork between 1045 & 1145p, vomit while dripping sweat and w/ extreme, hot flushing on his cheeks & ears.  Upon many late night searches online and discovering there may be some family history w/ the night stuff we discovered MCAS & MCAD being a thing.  We just had our Boston Children's and they did a urine test for MCAS and tried to find a vein for blood work but missed repeatedly till the poor little guy threw up.

Also Murphy mentioned histamines in food. The doctor today mention that ground turkey may have more histamines than regular turkey meat same with chicken. We also came across some information that instapot will not allow histamines to be released and Flash freezing food also prevents histamines and food.

Hi Murphy,
If it turns out he has MCAS don't stress too hard (like I did), its apparently a lot more common than they originally thought In kids and infants. I was told by her immunologist that it is fairly transient and relatively benign, unlike conditions like Mastocytosis. However, even on the pediatric level, it's definitely something you don't want them to have.

Our daughters MCAS comes in the form of Cold Urticaria. This is rare (1:100,000). Her mast cells are activated when she comes in contact with cold stimulus, swimming, aircon, cold wind, ice etc..... she breaks out instantly in hives and welts. Really horrible, but I'm happy to hear immunologist believes it's something that is benign and she will hopefully outgrow. It's only the mast cells on her skin which are being activated she has no systemic issues. (lucky we live in hot Australia).

I would be interested to know if MCAS is connected to FPIES. Seems odd to me our daughter has no IGE allergies yet two very rare non-IGE allergies. I can also see a lot of other parents have kids with both of these conditions as well.

Her MCAS occurred soon after she went into shock second time with FPIES. There is a lot of good information on Pub Med regarding pathophysiological of both conditions if you are keen to read more - but it's complicated and so much is still unknown. The physical proximity between mast cells and T cells has been demonstrated in several T cell-mediated inflammatory processes but her immunologist seems to think different cell process and unrelated (but I just don't know about that! Too coincidental don't you think).

It terms of more readings I would suggest, Pub Med for all your research and learning.

Overall Health advice- I love listening to Chris Kresser (podcast and his books). Incredibly educated ,intelligent guy and a leader in functional and integrative medicine. You will soon feel helpless dealing with conventional doctors with your sons condition. A MD is great to help in an acute fpies or mast cell setting but I found they really offer no gold advice on diet or lifestyle changes to ensure overall health.. but In contrast to conventional care (which is almost entirely focused on suppressing symptoms), functional medicine eliminates symptoms by addressing the underlying cause of a problem. So I couldn't recommend this guy more!

You could also look into GAPS diets down the track to help heal his gut, and have it tailored to low histamine if you feel that's an issue.

With regards to him waking at same time at night and vomiting all flushed. Our daughter did same thing when she was younger had me so puzzled as it wasn't fpies related. Does he get really bad reflux? How rugged up is he at night?
I actually found with our daughter this issue was totally unrelated to anything and was simply from putting her to bed too rugged up in winter, she would wake upset and hot and cry - but due to bad reflux would instantly vomit. Your sons issue probably completely different .....but just thought to share. 

 

 

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