Mucus Mucus Mucus Everywhere Help! Inflammation the Cause?

[brookevale]

I apologize as I feel like I’m posting too many questions, but appreciate everyone's insight so very much. It has been five long months since my flare began. For the past two weeks I have finally stuck 100% to the foods I can tolerate with no cheating—pretty much meat and vegetables (I know, about time). I mostly have normans due to the diet and 6mg of entocort. My normans are coated in copious amounts of stringy mucus—something that did not occur during my flares (or maybe it was all mixed in with the D). I also have copious amounts of vaginal leucorrhea/mucus discharge no doctor can figure out--3 months of this crap! I never had vaginal issues before this in my entire 44 years (and I have 3 kids!).

So my concern is the copious amount of mucus and leucorrhea. Obviously there is a lot of inflammation going on. The only thing that somewhat quells the vaginal inflammation is clindamycin cream, which, though it is an antibiotic it somehow has anti-inflammatory properties. I have tested negative for c diff twice and had it before so I know exactly what that is like. I am hoping the body-wide inflammation will cool down with the diet. Any thoughts? Sound familiar from any posts on the forum?

I did narrow down that the vaginal itching, burning, and discharge flares after I eat anything—some things horribly worse than others. I can’t tolerate starches or carbs as they contribute to my female and bladder inflammation. I am one big inflamed mess! I also cannot eat high histamine or high oxalate foods as when I do my foot neuropathy flares (which I acquired thanks to Levaquin in October 2012 and not diabetes). Plus, when I eat these foods I now get burning neuropathy in my genitals—something brand new. So, I think you get it. I definitely can’t tolerate oils—not even ½ teaspoon. Tex was right, oils in any size and form definitely act as a lubricant for me. Lots of TMI! I feel like I am allergic to food and life!

Thank you in advance for being so patient with me and all my questions and concerns. (((Hugs)))

[tex]

Hi Brooke,

The mucus is definitely due to inflammation. It's an automatic response by the mucosa of the intestines, and it's intended purpose is to help protect the mucosal tissues from whatever in the fecal stream might be causing the inflammation. Most of us have that experience at various times during our reactions. Typically it is less likely to be noticed during episodes of D, because it tends to be dissolved/camouflaged by the D.

Your level of inflammation (and the fact that it's so widespread) suggests that you may have systemic mastocytosis. That may be why your colonic biopsies were negative for MC. Systemic mastocytosis trumps MC.

Your best bet (IMO) would be to try to get an appointment to see Dr. Castells, or one of her students/associates at Brigham and Women's hospital. They are the top authorities on mastocytosis, and the place to go for diagnosis and treatment. I suggest that you ask your doctor for a referral to someone in that group. You will need some preliminary testing in order to qualify for acceptance into their program, but I believe that is where you need to be. You clearly have major mast cell issues.

Tex

[brookevale]

Thanks, Tex. I had Dr. Castells' office fax me their requirement for getting in to see her so I can show it to my doctors with the hope one of them can do some of these tests. I thought my GI doc said he also had my biopsy tested for mastocytosis but I could be mistaken. I don't remember seeing it on the pathology report. The serum tryptase test was below normal (<1.0 with normal range being 2.2-13.2). During my last visit I caught my GI doctor googling low tryptase then he said maybe you should try some Axid and some antihistamines anyways. Ok, so every time I try an H2 inhibitor my digestive issues seem to worsen so I took it for only a few days. Maybe because it reduced my stomach acid? I have read online that a very low tryptase throws out systemic mastocytosis. Weird that it was so low. Something to note, Tex, is that my flare was preceded by several incidents of strep (thanks to my 3 year old and day care), antibiotics, and NSAIDs. The antibiotics caused a strange inflammation reaction--like a cytokine storm. I had to be hospitalized as they thought I had meningitis (I had all the symptoms). I never had headaches in my life before and couldn't lift my head off the pillow without assistance. My jaw was inflamed too, hence the NSAIDs. Something happened but it's a mystery. I haven't been the same since. I just went to the bathroom again and the mucus wasn't pouring out like this morning. I am praying this diet kicks in and helps this inflammation!

[tex]

Brooke,

The serum tryptase level peaks about an hour or 2 after a mast cell event is initially triggered, and then it decays fairly rapidly. IOW, if the blood draw isn't made somewhere in that time frame, it probably will not be useful as a mastocytosis marker, because it will not be elevated.

In view of your severe reaction to that antibiotic, there's no telling what it may have done to your tryptase levels (or other markers, for that matter). A troubling thought is that it might continue to cause aberrations in some of your blood markers based on enzymes or who-knows-what-else. Be sure that the doctors at Brigham and Women's are aware of that event if/when you see them (or in preliminary communications), because it sounds suspiciously like a mastocytosis event, to me.

And please be aware that your colon biopsies do not have to show an elevated mast cell count for you to have mast cell activation disorder. or mastocytosis. Even normal mast cell numbers can be associated with reactions when mast cells degranulate inappropriately.

Also, if I were in your situation, I would avoid H2 antihistamines, because as you have found, they can actually increase inflammation (they can increase antibodies, T cells, and other inflammation modulators). IOW, they can have the opposite effect of H1 antihistamines.

Tex

[tex]

Just to clarify my last sentence — that statement is a little misleading. Actually what happens is that H2 receptors, when activated by histamine, suppress the production of antibodies, T cells, and other pro-inflammatory modulators. This is the opposite of what H1 receptors do, when activated by histamine.

So when an H2 blocker (an H2 antihistamine) is used, it attaches to, and thereby blocks, H2 receptors, thus preventing histamine from attaching to them. Since histamine is prevented from attaching to the H2 receptors, that implies that the H2 receptors become deactivated, so that they cannot suppress the production of antibodies, T cells, and various other pro-inflammatory modulators. So in effect, while H2 antihistamines do not actually promote inflammation, they do prevent H2 receptors from functioning normally, and this has the effect of promoting inflammation, in the sense that at least part of the normal function of H2 receptors is to suppress inflammation.

I hope I haven't just confused the issue with this explanation.

Tex

[Leah]

Tex, then why do they help me when I choose to take them?

Brooke, I feel your pain. I've had those vaginal issues for more then 10 years… maybe 15. I don't remember now. To keep things "at bay", I have to use Clindamycin cream plus a hydrocortisone suppository once a week…. sometimes twice if I'm flaring. Try to keep your diet clean and hopefully things will calm down soon. Does taking regular antihistamines help at all? You could try to take a higher then recommended dose to see if you get any relief ( at least until you can get in to see the specialist). It helps me when I need it. I take the higher dose for a few days and the inflammation usually gets much better.

Leah

[tex]

Tex, then why do they help me when I choose to take them?

I can only guess, but maybe this is because for some of us, the problems we are having are due to too much gastric acid upsetting our digestive process.

Tex