Hello from new person

MaggieRedwings · Post by **MaggieRedwings** » Mon Sep 29, 2008 5:58 am

Morning Binky and welcome to our ever-growing family. Sorry you had to find us this way but stick around and meet everyone.

Maggie

binky · Post by **binky** » Sat Apr 17, 2010 11:06 am

Hi Everyone,

After such great welcomes, I went away thinking myself completely cured. Cured by colonoscopy! It was really strange, but when the bowel prep diarrhoea went away so did my normal diarrhoea. I had a bit of a relapse a few months later, with D about 20 times a day at it's worst, and I started seeing an acupuncturist, which seemed to really help. I've had a few minor episodes, but have been feeling really very good.

But... about 3 weeks ago I started getting diarrhoea again. Now I'm up to 30 times a day, along with lots of cramping and abdominal pain which I didn't have before. I'm not sure where to turn now. I've just started Pepto-Bismol. As far as diet, I've been completely gluten free for 5 years. My diet is more or less paleo, grain free but with cheese, cream and home made yoghurt.

I don't know if stress is a trigger. I've been through a very painful bereavement recently. Also I've had a recent course of antibiotics, so I'm having a stool sample checked for C diff. Something is going on with my immune system lately, I'm sure. I had a completely out-of-the-blue anaphylaxis, which turned out to be caused by sesame. Did I read somewhere that MC might be a mast cell disorder?

I'd be grateful for any thoughts on how to deal with this.

Thanks,
Binky

Stanz · Post by **Stanz** » Sat Apr 17, 2010 11:17 am

Binky,

Stress is one of the main triggers for many of us, as well as antibiotics. I seemed to have one infection after another and and was tested for CDiff, MRSA, you name it, and had none of them. I did however do a massive 2 wks on antibiotics for what was assumed to be MRSA and recently found that I don't have the markers for ever having had it. It did, however, stop all the weird staph like infections I'd had for years. The drugs I took are the same that they would give you for MAP and rather than go into detail on that, I suggest you search for MAP (Mycobacterium avium Paratuberculous) on this site.

I'm sorry to hear that you have been through a painful time recently.

Connie

teagirl · Post by **teagirl** » Sat Apr 17, 2010 11:49 am

Hi Binky,
We're all different but your middle paragraph made me say 'just like me'. I was not well but managing until I too had a very painful bereavement with long hours for weeks at the hospital, odd eating times, not enough decent food, and the stress of watching a loved one die. Wham ... exactly your symptoms of the cramping, awful pain, and explosive D. I was at 28 bouts of D a day and had to wear a diaper overnight so I know what you are going through. I thought it was C Diff, then EColi.

Going gf was the main thing for me but it didn't do the entire job. Reading the forum, I decided to cut out dairy (that helped a lot) then soy, and bingo, the D totally went away, so did the pain, and I was down to one reasonable bm a day. I have the occasional flare, usually from my bugbears somewhere in the food, but overall I am doing well.

I notice you are still eating dairy products. Have you tried cutting them out?

Sure, I am unhappy with no dairy - I miss yogurt and cheese - but I'd rather do without them than the alternative!

I am a scratch cook and still cook and bake. Rice milk is what I use.

Post by **tex** » Sat Apr 17, 2010 5:16 pm

Hi Binky,

Sorry you needed to return, but welcome back. Many of us have had similar cleanout-induced experiences. I recall that the first time I drank all that contrast solution for a CT scan, it brought temporarily remission of my symptoms for a few days, for some reason or other.

I too would be very, very suspicious of C. diff, under those circumstances, and I'm sure that you're well aware that false negative results are quite common, so retests may be necessary.

Yes, mast cells apparently play a part with this disease, at least for some of us. Here are some research articles on the topic:

http://www.wjgnet.com/1007-9327/13/3027.asp

http://www.ncbi.nlm.nih.gov/pubmed/17718794

http://www.ncbi.nlm.nih.gov/pubmed/12755379

http://www.ncbi.nlm.nih.gov/pubmed/2766913

http://www.ncbi.nlm.nih.gov/pubmed/2661662

And here are some past discussions that we have had about this issue, which also contain links to additional research articles, and other references. The oldest discussions are listed first, and the last one was active very recently, (last month):

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9635

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9582

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9529

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10496

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10302

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11272

Tex

binky · Post by **binky** » Sat Apr 17, 2010 8:32 pm

Thank you for the replies, everyone.

Stanz, my C. diff test just came back negative. I'll look into the things you suggest though.

Teagirl, my painful bereavement was just as you described. I'm nowhere near getting over it although it's been more than 2 months now, but I really think my recent onset of medical problems is connected to it. When I told my non-medical mother about my anaphylaxis she said, "Well, your immune system must be all mucked up by grief."

I'm really resistant to giving up dairy again! I gave it up for 6 months or so, and gradually introduced homemade goat's milk yoghurt, then ghee, then cheese, and now more cow dairy, although not straight milk. I've spent maybe 4 years slowly re-introducing, and never saw any set-backs. It adds a lot of good stuff to my diet. I realize it's the obvious thing to go, though. I stopped eating dairy after positive results from Enterolab, but I tell myself that stopping gluten for so long has healed my bowel, and that I should be able to tolerate it, and the same for yeast, soy and eggs. OK, maybe this needs re-thinking.

Tex, thank you so much for all that information. You're a gold mine. I haven't finished reading it all, and will get back to it shortly. Things that strike me so far:

- The mast cell activation disorder is interesting. I don't think I have that. I was tested after the anaphylactic episode. All the food skin prick tests were negative, but I had a RAST test for sesame, because that's what I thought it was, and sure enough that was positive.

- When I was tested I had several environmental allergies. My reaction to dust mite was as positive as possible. In fact, the immunologist stopped the test early, and gave me an antihistamine and prednisolone to calm down the reaction. He said my mast cells were "twitchy". It may be that I reacted to sesame because of "twitchy" mast cells, and it might never happen again. Now I'm wondering if twitchy mast cells are giving me diarrhoea.

- I've been taking anti-histamines on and off. My D has been worse some days than others. I don't know if there's a pattern, but I'll be writing it all down from now on.

- At one point I saw an intergrative medicine physician. She recommended taking quercetin, which is a mast cell stabilizer. Does anyone take that and find it helps? I tried it before, but I took a combined quercetin/vit C, and the vit C gives me D and firey bottom so I gave up. I'm going to try it again.

- Has anyone asked to have their histology slides stained for mast cells?

Thanks for all your help. I'm feeling more positive that maybe more is being learnt about this condition. At least I'm learning more.

Best wishes,
Binky

Post by **tex** » Sat Apr 17, 2010 9:43 pm

True food intolerances, (specific protein intolerances), are claimed to be permanent, but I have a hunch that molecular mimicry is sometimes involved, and in those cases, healing of the gut, might possibly have a "mitigating" effect, but those are uncharted waters, for the most part. Sometimes, when we avoid a food intolerance for years, antibody production eventually totally ceases, and it can take a significant amount of time for the immune system to recognize it as a potential "threat", and to begin producing antibodies at a sufficiently high level to exceed the threshold at which a reaction will be triggered. Some doctors claim, for example, that kids will "outgrow" gluten-sensitivity, when celiac disease is diagnosed at a very young age, and gluten is avoided for a decade or two. Not many data are available, but based on what I have seen, once gluten is reintroduced into their diets, (as adults), it may take a period of years for the disease to begin to produce clinical symptoms again, but in most cases, relapse will eventually occur.

Quercetin has been mentioned here a few times in the past, but I'm not sure if any one has actually tried taking it.

Incidentally, in case you've never seen it, Dr. Fine's list of suspect foods is included in a post in this topic:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8324

Tex

binky · Post by **binky** » Sat Apr 17, 2010 10:21 pm

Hi Tex,

Antibodies to yeast in celiac and IBD do seem to go away. For example:

http://www.ncbi.nlm.nih.gov/pubmed/16357623

My thinking was that casein and soy would probably behave the same way when the leaky gut is healed, assuming that the intolerance to them is caused by the gluten-induced leaky gut, and not vice versa. Maybe just wishful thinking.

Thanks again,
Binky

Gabes-Apg · Post by **Gabes-Apg** » Sat Apr 17, 2010 10:34 pm

G'day Binky
greetings from Australia

you will fit in well here.... there are quite a few of us that like to research and try and piece together the puzzle of what caused MC, and what causes flares.

I think the only conclusion we have come up with is everyone of us are different. Different triggers, different intolerances, different treatment regimes,

the other conclusion is that research and proactive self management is important, it is rare to find a proactive doctor or specialist.
mix the MC managment in with management of the various other health issues we have and it is a bit of a full time hobby (that and poo watching!)

welcome to the family, this family has been an important part of my transition and acceptance of MC. We share the good days, and the bad days and it is the one place you can discuss gas, poo and various other health situations without embarrassment, one some stage at least one of us has probably come across the same thing.

take care - and good luck getting control of the demon.

Post by **tex** » Sat Apr 17, 2010 11:23 pm

Binky wrote:Antibodies to yeast in celiac and IBD do seem to go away.

Candida is a very interesting organism. It has amino acid sequences that include peptides that mimic the alpha gliadin and gamma gliadin peptides to which celiacs are sensitive, thus making it capable of confusing any immune system that is sensitive to gluten:

http://www.ncbi.nlm.nih.gov/pubmed/1282 ... t=Abstract

Presumably, that is the reason behind the concept discussed in the article that you cited. IOW, once the immune system stops producing antibodies to gluten, it will no longer recognize yeast as a "foreign invader", and it will cease producing antibodies to it, also.

Regarding the article that you cited, in fact, not only is gut permeability slower to resolve in adults with CD or MC, but intestinal damage in general is slower to heal for adults, and in the case of many adults, mucosal cellular histology never completely returns to normal.

http://www.medscape.com/viewarticle/717949

Not everyone who is gluten-sensitive, tests positive to yeast antibodies, of course. It has long been my theory that one can only show a positive result to a yeast antibody test, if a yeast overgrowth exists, (IOW, if Candida roots are penetrating the mucosa of the intestines, or it's peptides are otherwise entering the bloodstream, by way of the leaky gut syndrome), (LGS). Without the presence of a Candida overgrowth, (or LGS), the test result for yeast antibodies, will be negative, (or at least, that's my theory). That opinion is based on the accumulated experience of members of this board. IOW, a positive result to a yeast antibody test is meaningless, once MC is brought to remission.

Unfortunately, however, that exception only apples to yeast - it does not apply to casein or soy, for example.

Tex

Polly · Post by **Polly** » Sun Apr 18, 2010 11:52 am

Hello, Fellow M.D.!

My bet is on the casein.....sigh. I loved dairy products too, but after 10 years of avoiding all of them, (and being gf) I still cannot tolerate them. I also can't tolerate ghee, sheep or goat milk, cheeses, etc. Casein is the 2nd most common intolerance here after the gluten.

Sorry to rain on your parade.

I had dreams about grilled cheese sandwiches for years after I stopped them.

Good luck!

Poly