Mast Cells . . . again

[mbeezie]

Hi Everyone,

I am finally going to see a mast cell researcher/allergist next week in Boston. I am hoping to get some answers, finally. As it turns out, Joe works only a short distance from where I will be and we plan to meet for lunch

I am not flaring at the moment, so I am going to use my visit with the doctor to learn what I can from an expert. As I've mentioned before I think many of us have mast cell activation secondary to our inflammatory bowel disease. Mast cells won't necessarily be elevated and all lab tests could be normal. Here is an article in the December 2010 issue of the Journal of Allergy & Clinical Immunology....

http://www.jacionline.org/article/S0091 ... 3/abstract

Akin, Valent & Metcalfe authors

Mast cell activation syndrome: Proposed diagnostic criteria

The term mast cell activation syndrome (MCAS) is finding increasing use as a diagnosis for subjects who present with signs and symptoms involving the dermis, gastrointestinal track, and cardiovascular system frequently accompanied by neurologic complaints. Such patients often have undergone multiple extensive medical evaluations by different physicians in varied disciplines without a definitive medical diagnosis until the diagnosis of MCAS is applied. However, MCAS as a distinct clinical entity has not been generally accepted, nor do there exist definitive criteria for diagnosis. Based on current understanding of this disease "syndrome" and on what we do know about mast cell activation and resulting pathology, we will explore and propose criteria for its diagnosis. The proposed criteria will be discussed in the context of other disorders involving mast cells or with similar presentations and as a basis for further scientific study and validation.

I have been doing some reading on how mast cells are recruited in inflammatory bowel disease and it seems to be related to beta defensin 2, which can attract and activate mast cells. The science is a bit over my head here, but it seems to make sense from what I've read. Once mast cells are activated it takes a while for them to calm down, which is why I think diet doesn't always work immediately, but eventually does once mast cells relax. It could also explain how some of us have immediate reactions to offending foods (immediate mast cell degranulation versus slow leaking and delayed reaction). The symptoms of activated mast cells extend beyond D and include itching, nausea, GERD, hives, flushing, headache, dizziness, parasthesisas/paeripheral neuropathy, tachycardia, chest pain etc. (lots of symptoms).

I could be way off on the mechanism by which mast cells are activated, but I do believe they are with intestinal permeability and IBDs. Those of us affected may have a genetic predisposition. I really don't know.

Stay tuned for more info. . . if she gives me more than 5 minutes of her time I plan to ask many questions.

Love,

Mary Beth

[JoAnn]

Mary Beth, what a great opportunity for you and how wonderful that you are sharing all this with us. When I was first diagnosed, I noticed I would get hives at times but never connected it to mc. I had some other weird stuff too that might be connected to mast cells. Two years later most of that has calmed down, but sometimes I get a strange allergic reaction and am not sure why. How fun that you and Joe will meet and have lunch. Thanks for being such a great resource to those of us on this board. JoAnn

[Polly]

Mary Beth,

Interesting..............I will definitely look forward to what you learn. The science is way beyond me, too. What have you learned about the role of beta defensin 2 in IBD? Are the molecules in the gut lining as well as the skin epithelium? How is leaky gut involved, do you think?

I know you and Joe will have a fun lunch! Wish I could be there........

Love,

Polly

[mbeezie]

JoAnn,

Thanks JoAnn. I suspect many of us at some point in a flare have experienced symptoms of activated mast cells and once things calmed down those symptoms went away. That has been true for me. Because this is poorly understood and not even an official diagnosis yet, doctors completely miss the mark and do not connect the dots with symptoms.

I beleive your hives were an early warning sign. I also had early warning signs. A year before my flu shot I developed unexplained chest pain, GERD, knee pain, and insomnia. I was also becoming increasingly intolerant to wine, blue cheese and a few other high amine foods. I believe these were early signs of gut permeability, gluten intolerance, and inflammation. In retrospect my mast cells were starting to act up, but my symptoms were nothing out of the ordinary, according to doctors, for a 46 year old woman. The night before my flu shot I ate sushi (spicy tuna rolls) and wine. Tuna can be very high in histidine (which turns to histamine), so I suspect I already had a high level (histamine symptoms are dose dependent). My flu shot triggered an enormous mast cell response for some reason and I remained very sick with mast cell symptoms for 2 months but then I returned to baseline except for peripheral neuropathy. Because I made no diet changes I continued to damage my gut. 17 months later I developed chronic D. Now I avoid known triggers for my mast cells, which are mainly food and drugs, but when flaring can extend beyond that to smells (lots of mast cells in the lungs).

I am not currently flaring so I debated about keeping my appointment. It took forever to get an appointment with this particular doctor (started the process last February). I think I decided to keep it so she can tell me I'm not crazy. Doctors have been downright nasty to me when I tell them I suspect mast cells. I think I need a little validation. I worry about having another huge mast cell crisis like I did with the flu shot but I am hoping that by keeping my gut in good shape I can keep my mast cells in line.

Mary Beth

[JoAnn]

Mary Beth, a few weeks after I was diagnosed with mc, I had an MRI done. I had been seeing a neurologist for muscle problems (twitching, restless leg) which I now believe were due to gluten "poisoning" of my system and probably malabsorption of vitamins/minerals. My thyroid was malfunctoning and I was a mess. No one connected any of this and I had never heard of mc. I was seeing a specialist for each issue and no one connected anything. It was on this board that I was able to connect the dots and with help from my integrative nurse practitioner regain my sense of well being for the most part. Anyway back to the MRI, when I was injected with the contrast, gadolinium, I went into anaphylactic shock because of a severe allergic reaction. I'm just curious if you would connect this to mast cells in some way. At that time I was not doing anything diet wise for mc (I didn't know what I was supposed to be doing) and I seemed to react to every medication I took. That was 2 years ago last Sept. Just curious if you see any connections. Thanks, JoAnn

[mbeezie]

Polly,

Beta defensin 2 has been shown to be elevated in inflamed colons but not in normal ones. I suppose this supports the theory that IBDs are caused by an infection of some sort. I have read that mast cells are also recruited and this is where the problem could originate. Again, way over my head, but I do believe we see symptoms of histamine and other mediators in various ways with this disease. Something recruits them and causes them to behave badly and symptoms seem to come and go.

Here is a recent article on gut permeability and food allergy /mast cell recruitment. . . seems to be genetically driven

Clin Exp Allergy. 2010 Nov 11. doi: 10.1111/j.1365-2222.2010.03639.x. [Epub ahead of print]
Gut permeability and food allergies.
Perrier C, Corthésy B.
Division of Gastroenterology, University Hospital, Catholic University Leuven, Leuven, Belgium R&D Laboratory of the Division of Immunology and Allergy, Centre Hospitalier Universitaire Vaudois, Lausanne, Switzerland.
Abstract
Intestinal permeability is a critical feature of the gastrointestinal epithelium as it must allow an efficient passage of nutrients and restrict the entry of larger molecules, such as protein antigen, in order to facilitate appropriate immune responses towards food antigens. The proper regulation of the epithelial barrier relies on multiple, intricate physiological and immunologic mechanisms, in terms of which recent progresses regarding the cellular and molecular components have been unravelled. In genetically predisposed individuals, breakdown of oral tolerance can occur, leading to the inadequate production of allergen-specific IgE and the recruitment of mast cells in the gastrointestinal mucosa. Under such conditions, the intestinal permeability towards allergen is altered via different mechanisms, with IgE-CD23-mediated transport across the mucosa playing an important amplification role. Additionally, during the effector phase of the allergic reaction, when mast cells degranulate, a series of inflammatory mediators, such as proteases and cytokines, are released and further affects...............

Looking forward to my trip . . .wishing all of my PP friends could join us.

Mary Beth

[mbeezie]

Oh yes JoAnn, contrast dyes are a big problem for people with mast cell issues. Other drugs that cause problems are beta blockers, plasma expanders, NSAIDs, narcotics, some antibiotics and anesthesia. I had contrast dye twice and didn't react. I get sick very sick from anesthesia and have reacted horribly to beta blockers and NSAIDs.

Gluten and other lectins are part of the problem as they cause mast cell degranulation.

Mary Beth

[tex]

Doctors have been downright nasty to me when I tell them I suspect mast cells.

That may be a defensive mechanism. They probably know so little about mast cell issues themselves, that they feel intimidated and/or frustrated by any patient who appears to know anything at all about them, so a natural reaction is to lash out at the patient who brings up the topic.

Tex

[Linda in BC]

Very interesting, Mary Beth. Thank you for sharing your knowledge of mast cells, and I look forward to hearing about your visit with the specialist. Since I seem to have multiple intolerances too, and my mother was very allergic to milk (major sneezing -- which I understand to be indicative of mast cell involvement), and I also had a citric acid allergy that caused me to get hives as a child, I think I might have mast cell issues too. Reading what your post has brought back a memory of a huge reaction of hives that I had around the time my D. started 13 years ago, the only one I have ever had as an adult. I ate something at a work Christmas party, (and to this day I don't know what it was which is scary!), and I was covered in hives from head to toe for three days afterward. It was awful!

I guess I should be paying more attention to this issue and do some reading up on (hist)amines. Any suggestions for introductory (light ) reading on the subject?

Linda

[mbeezie]

Linda,

I don't know how light this is but it's an excellent overview of the problem with mast cells in GI disease http://alford.grimtrojan.com/Mast_Cells ... isease.htm The author addresses the possibility of an autoimmune problem, which I believe is a most likely scenario in genetically predisposed individuals.



Tex,

I think you are right about the defense mechanism. Patients are more educated than ever and it's impossible for a doctor to know as much as their patient in some cases. I wish they would just admit this though . . . I still can't get over the smartass gastroenterologist asking me "if I could tolerate water" when I gave him my long list of food intolerances.

Mary Beth

[Linda in BC]

Thank you , Mary Beth. That's exactly what I was looking for. Quite clearly explained.

Linda

[Ginny]

Mary Beth, so glad you are exploring this further. We will all be in your debt. I am going to my GI next week just for a renewal but am going to attack him again about his knowledge of Mast Cells. I stopped taking Zyrtec about a month ago when I was doing well, and am now wondering if this did not have a greater impact on my gut. The roof of my mouth itches constantly and particularly after eating and more so with certain foods; almonds as an example. My PCP wants me to see an immunologist. Probably feel like it is a waste of time if they do not understand our disease and in reality who does??? Ginny

[Kari]

Hi Mary Beth,

I'm also a "newbie" on the topic of mast cells, and will definitely take the time to educate myself on it, since I believe both my son and I have suspicious symptoms (allergy triggered skin rashes, etc.). Thank you so much for being such a great resource for us by sharing your knowledge.

Have a wonderful, successful trip, and a fun lunch with Joe.

Love,
Kari

P.S. Don't blame you for being upset about that GI's remark - how incredibly RUDE. I'd pity him (or her) for the lack of sensitivity!!!

[Gabes-Apg]

Mary Beth
cant wait to hear how it goes.....
I have been sharing the information you share with us on this subject with my dear friend who is a naturopath.
She also has a son who is allergy reactive

your statement

Something recruits them and causes them to behave badly and symptoms seem to come and go

.
explains why people can go years before there is a reasonabley acurate diagnosis.

[Gloria]

Mary Beth,

How terrific that you've been able to get an appointment! Good luck - we'll be anxious to hear about the visit.

Gloria