Hi - does anyone know the difference between MCAD and severe histaminosis?

I was diagnosed with histamine intolerance a while back and many symptoms seem to correspond.

I don't want to offend anyone - I am not talking about the type of histamine intolerance where someone has a mild flush after drinking red wine!

It doesn't really make much difference but am curious. Histaminosis is practically unknown (by doctors) in the UK but is much bigger in Europe particularly Austria, Germany and Spain.

Hi Heather

I may be worng but have you posted on some HIT forums?

How did you get tested for the autoantibody - sounds intriguing? What is the test called?

I have been tested and have low DAO.......but I suppose I could have MCAD too. Trouble is I am on a low histamine diet - ie the five foods that i eat (!) are all low histamine and yet I am still poorly....

Heather - sorry - have replied to you on the other thread.....HIT is histamine intolerance and I think I have you muddled up with someone else on those forums sorry!

In a nutshell I may have lupus .....

Hi Sarah,

Histamine intolerance is very different from a mast cell disorder.  A histamine intolerance merely means that you don't process the histamine properly due to the DAO disorder and so after a while your histamine levels build up and will then cause the constant reactions.  In theory, in the elimination of the histamine from your diet and the use of antihistamines when things get overwhelmingly full to help reduce the levels, you should be doing okay.  The key to this kind of disorder is to be very faithful to the diet so as to not build up the levels.  

This is different from a mast cell disorder for the problem isn't due to a buildup and inability to process the histamines, but is that the histamines are in chronic release within the system.  The body is able to process the histamines like any other normal person, but due to the malfunction of the mast cell, or the over triggering of the mast cells and perhaps basophils the histamine is constantly being released and the body is constantly dealing with it but it's sometimes just too overwhelming and floods the body and thus triggers all the reacting.  

So, although the patients may come off seeming the same, they are in essence very different due to the mechanisms behind it all.  For these patients drugs like Singulair and Ketotifen and Chromolyn won't be of any help whatsoever!  For the HIT patients don't have anything wrong with their mast cells.  Stabilizing the mast cell won't do anything to improve the patient.  A leukotreine blocker is useless for it's not being produced.  Aspirin treatment won't help because there are no prostaglandins either.   The HIT people have ONLY an overabundance of histamines and in dealing with this, they should have marked improvement.  

Another note.  Sarah, I don't believe these people have issues with angioedema.  They may have hives and stomach issues and itchiness and flushing, but I don't think they have any angioedema.  However, I may be totally mistaken.  

I'm sure that Dr. Grattan was right in his diagnosis of you in that you don't seem to be responding well to the masto treatment, so as Heather says, there seems to be something more going on with you.   It would be totally possible to have a DAO disorder and angioedema as well!  It would make you to be one very unique patient if you did!!

Hope this helps!

Lisa

miss m:
I had a blood test that ruled out lupus, so I would think that you could have that done. But the reason for posting is your not wanting to be unique. I have been searching world wide for someone like me for over 3 yrs & found some close like a guy in Chicago who has the same skin pain but heat is a trigger for him & he loves the cold. I am the opposite. I think because of our natural uniquesness our masto or MCAD is also unique. That is why I get upset with my doc who continues to treat me as a shocker & when I mention trying gleevac or mastinib in the future he gives my that look like I'm the most stupid person in the world & when he introduces me to a new intern of his as the expert on masto, although he doesn't mean it, I tell them no I'm not an expert on masto, I'm an expert on my masto. So sorry to say you may be unique. What that forces each of us is to be our own investigator & own recommender of treatment and that is a huge responsiblity especially when your ill like we are.
Mike V

OK... well obviously that wasn't just a "bad dream."  But... that doesn't mean the anaphylaxis was caused by food.  There are LOTS of other degranulators.  Also, our bodies make histamine (just like all animals) and our natural level peaks in the middle of the night.

Seriously... what were you expecting a gastroenterologist to say?  Even a lot of allergists would blow off that kind of symptom.  That doesn't mean it's not real.  It just means that a lot of doctors don't know that much (if anything) about "allergic" reactions that are not IgE-mediated... especially if nothing shows up on lab tests.

Heather

Miss Marple, the gastro of course didn't mention that the food allergy tests are not at all accurate! They only test the protein of the food thats it, food is comprised of enzymes and all sorts of other things we can be totally allergic to. They are very very inaccurate, they can help to pinpoint but are in no uncertain terms accurate. I've got paperwork to prove it, within months two different physicians tests one sky high to a food and the other no reaction to the same thing. I confronted him on this and that's when he spilled the beans..... From someone who has battled food for quite awhile, I've proven it time and time again or should I say my body has. Eosinophills also peak 7pmish to 2 am ish.
The last mentally challenged supreme physician I saw, profoundly said  well if I told you, you were not allergic to say sesame seeds yet every time you eat them you throw up, would you continue to eat them because of what I said? Of course I followed that up with no. Been there done that, state of denial re-testing of known food sensitivities have never proved me wrong! Every time I re-try something I'm hoping this is the time I won't have a problem and will be able to add another food. Someone once said you just chose to be like this.... Yeah, eating absolutely nothing, and having a rumbling stomach, spending ridiculous amount of time preparing the next meal and figuring out the next meal and  what I can have ,is sure the easy way out, rather than having the spaghetti,meatballs and dessert that I also made for the family.

Starflower - I should make it clear I did not WANT to go to the gastro - my GP insisted. I don't get gastro symptoms, just a bit of constipation. My food reactions take the form of angioedema and tachcardia, intense muscle pain and low bp. I agree he did not know much about allergy. I told him I felt so bad i was thinkong of using my epipen (this was for low bp and tachycardia) and he told me, no, it should only be used if I had angioedema in my throat or breathing issues. Hmmmmm.

Sandi - I so hear you on food. I hate going to supermarlets now and I used to like shopping. Watching my husband eat chocolate is torture....