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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Mast Cell disorder or Severe Histaminosis/Histamine Intolerance http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1296681524 Message started by missmarple on 02/02/11 at 09:18:44

Title: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by missmarple on 02/02/11 at 09:18:44

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.

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by Starflower on 02/02/11 at 11:36:12

My understanding is that histaminosis is caused by a deficiency of DAO, the enzyme that breaks down histamine. I wouldn't be surprised if some people with MCAD also have this problem, but there are other ways to have problems with histamine. In my disorder, for example, my immune system is making an autoantibody that triggers the high-affinity IgE receptors on my mast cells and basophils. The symptoms are exactly like a peanut allergy, but I'm allergic to myself. Gulp.

I haven't experimented with enzymes... I have no idea if I'm deficient in DAO or not... I just know that's not the only answer in my case. If you suspect this is a problem for you, the low-histamine diet should help! There are also supplements (like one called "Histame"), but I think prevention is more effective and less expensive...

http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm

Heather

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by missmarple on 02/02/11 at 13:07:59

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....

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by Starflower on 02/02/11 at 13:17:38

What is HIT? :-?

My allergist ordered the antibody testing... I had never heard of it before I was tested. I can't tell you how GRATEFUL I was to finally get some kind of explanation for my symptoms. It also turned out to be the key to getting my diagnosis. Here's an article about the antibody:

http://www.nejm.org/doi/full/10.1056/NEJM199306033282204#t=article

Since you're on a strict low-histamine diet, there has to be something else going on besides the low DAO level... just my opinion.

Heather

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by missmarple on 02/02/11 at 15:03:07

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 .....

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by missmarple on 02/02/11 at 15:06:03

That article is sooo hard - but incredibly useful, thank you. Funnily enough I have just ordered a basophil release test...

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by Lisa on 02/03/11 at 01:49:21

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

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by missmarple on 02/03/11 at 07:43:53

I don't WANT to be unqiue!

There is definutely something else going on with me but no one seems to be able to find it....maybe it is lupus??

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by mikev on 02/03/11 at 07:59:24

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

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by missmarple on 02/03/11 at 10:51:17

First of all Lisa - thank you for your insight - I may have more questions later!

Mike - I think I am just SICK of doctors not taking me seriously because I do not fit into a box. I have just had a gastro enterologist saying that my food intolerance is all in my head and I should just eat anything. When i said i woke up in the middle of the night from a sound sleep with near anaphylaxis he said it was a bad dream!!!!

You gotta laugh

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by Starflower on 02/03/11 at 12:28:47

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

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by chaco on 02/03/11 at 15:22:17

missmarple wrote on 02/03/11 at 07:43:53:

I don't WANT to be unqiue!

There is definutely something else going on with me but no one seems to be able to find it....maybe it is lupus??

Or maybe it's EDS 3? Once that turns inflammatory, YIKES!

Hope you get some definitive answers soon.

Deb Mc

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by Sandi on 02/03/11 at 17:43:17

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. ::)

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by Sandi on 02/03/11 at 17:45:44

Oh and a lot of us have had lupus testing, it's one of the things they've checked me for many times thinking this time "I'll fit the bill" Hang in there!

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by missmarple on 02/05/11 at 08:42:51

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....

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by Kim on 02/05/11 at 21:16:49

I am curious. We are in the process or already have ruled out almost all other causes for Brieann's issues. Should I push Brie's Dr.'s to check for DAO disorder? Could her issues be just from a Histamine disorder vs. MCAD. I have not done much research into HIT and she really doesn't seem to have a lot of food triggers (but maybe a few that I have detected at a slight level). For those of you who have followed Brie's story I would appreciate any input into this.

Thank You! Kim

Title: Re: Mast Cell disorder or Severe Histaminosis/Histamine Intolerance
Post by Starflower on 02/06/11 at 01:51:46

Hi Kim,

Metabolic disorders are real, the problem is... you can't always fix them. I think (and honestly, I'm not sure) that you can overcome a DAO deficiency with the low-histamine diet. Two questions you want to ask yourself before testing...

1. Will this tell us something we don't already know? (Do we need this piece of information?)

2. How would the result affect her treatment plan?

These are good questions for any kind of testing, keeping in mind that people have different levels of curiosity, desperation, etc... A few of my tests have been just for peace of mind. That's OK too as long as you can afford it.

Heather