issie Posted April 13, 2012 Report Share Posted April 13, 2012 http://www.ajcn.org/content/85/5/1185.fullI don't know if this has been on the site already or not. But, since there has been a lot of talk about MCAD (now called MCAS) I thought I'd post it. This may be a whole other subject and not MCAS but another facet of the same illness. But, could be affecting us and complicating our issues.Issie Quote Link to comment Share on other sites More sharing options...
issie Posted April 13, 2012 Author Report Share Posted April 13, 2012 I'm on another forum for MCAS and learned today that they are doing endoscopy's and taking biopsies for MCAS. There is a certain way that they have to be stained to pick up the mast cells and they are finding it to catch it in 90% of people suspected. It is less invasive than a bone marrow biopsy and pretty accurate. Dr. Afrin has given some instructions as to how to do the biopsies and stains in order to determine this.Issie Quote Link to comment Share on other sites More sharing options...
futurehope Posted April 13, 2012 Report Share Posted April 13, 2012 FYI, I have an appointment to see Dr. Afrin on April 30th, and I was told to bring the biopsy samples from my endoscopy and colonoscopy with me to the doctor visit. They are kept for years at the lab that was used for me, though my latest biopsies were done this past January.So, my point is, he prefers to look at the samples himself if possible. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted April 13, 2012 Report Share Posted April 13, 2012 We saw Dr Afrin two weeks ago and he requested I have my son's 2 prior biopsies taken during endoscopies be forwarded to him. He said they don't look for mast cell issues when looking at the biopsies so he will have them checked(using a different stain). Christy Quote Link to comment Share on other sites More sharing options...
issie Posted April 13, 2012 Author Report Share Posted April 13, 2012 I didn't know they kept the biopsies. I wonder if mine are still around - would love to have them checked. Right now - just have the probable before MCAS and probable before Kounis syndrome. I was recently told that high NE levels are also an indicator for MCAS and that is scientifically proven in my regard. I'm excited that this has been figured out - as it's much less invasive a procedure to get concrete proof of the disorder.Christy, what is the wait time to get in with Dr. Afrin?Issie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted April 13, 2012 Report Share Posted April 13, 2012 Issie,We had a two month wait to see Dr Afrin. I emailed him first asking questions, which he promptly replied to, then he had me contact his office and send over records. If you have a chance to see him, I would recommend it. He connected a bunch of the dots for us and was very thorough. He(Dr Afrin) also kept telling my son he was sorry for the way my son was feeling. He is a very compassionate and feeling doctor.Christy Quote Link to comment Share on other sites More sharing options...
issie Posted April 13, 2012 Author Report Share Posted April 13, 2012 Thanks Christy,Would you PM me his e-mail?Issie Quote Link to comment Share on other sites More sharing options...
Maiysa Posted April 13, 2012 Report Share Posted April 13, 2012 Issie thanks for posting the article. Haven't read it yet, but that sounds like awesome news to me!!! The hematologist keeps mentioning bone marrow and if I could get out of that, that would be great!!!!! I was also told that they keep the biopsies for a long time. Last year after my spinal tap they told me they keep them in some type of storage bank and cold for about 10 years. But endoscopies are so easy if I would have to do that again, much easier than BMB I would imagine. Quote Link to comment Share on other sites More sharing options...
Maiysa Posted April 13, 2012 Report Share Posted April 13, 2012 I've only read half of the article. My son has a terrible case of crohn's, stage 4. And the other day I looked up the correlation between elevated tryptase levels and crohn's, because they said my elevated tryptase levels are possibly genetic. I also notice my son has some autonomic symptoms like myself. Anyhow, I found several articles on the correlation between crohn's and elevated tryptase levels (high histamine). But according to this article, I am wondering if a low histamine diet would be good for him. HE is on Humira and it is helping but he is still very sick. It will be interesting to see what this diet could do for him. But trying to get a 23 year old college kid to change his diet....not so easy. Thanks Issie, I'm going to send him this article. Quote Link to comment Share on other sites More sharing options...
anna Posted April 15, 2012 Report Share Posted April 15, 2012 I think histamine intolerance could be a lead have a look at this: http://www.histamineintolerance.org.uk/about/first-steps Quote Link to comment Share on other sites More sharing options...
issie Posted April 15, 2012 Author Report Share Posted April 15, 2012 Thanks for the post anna. Yeah, I think there is a definite link and possible some of us with MCAS (MCAD) have this too - low DAO. I do a low histamine diet - just because I figured out I feel better on it. I just naturally did it - before I knew about MCAS or DAO. I figured out that most of the foods they say avoid are the ones I have issues with. Funny how many drugs they say you can have reactions with - but, it doesn't say what the drugs are. I know tagament is one of them. So, even though it's an H2 - it can lower DAO - talk about paradox's. It would be interesting to see what else might do it.Issie Quote Link to comment Share on other sites More sharing options...
corina Posted April 15, 2012 Report Share Posted April 15, 2012 I keep being amazed about all the info that is shared here at this forum. I've been around here for years and still so much information is coming up and putting pieces of the puzzle together. I know there are different puzzles as there are many differences in diagnoses but I'd like to thank you all for sharing your info which can be so valuable for people. It gives me insights that I couldn't have found (or thought of) myself!Thanks everyone!!! Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 16, 2012 Report Share Posted April 16, 2012 OMG! Issie! I think you found the missing link between the "estrogen" question that has been raised on this forum and the issues many of us had during our cycle and with various birth control options. The section in your article named "Histamine and Sexual Steroids" gives a great explanation of how histamine affects estrogen and dysmenorrhea. I know that I constantly have too much histamine in my body because ae such constantly elevated complement C4a (which degranuates mast cells and causes histamine release.) Quote Link to comment Share on other sites More sharing options...
issie Posted April 16, 2012 Author Report Share Posted April 16, 2012 I think that this histamine issue could be more widespread than we realize - it might not be a true MCAS (MCAD) issue - but, could be an issue with histamine intolerance. And very possibly there could be the combination of issues with us with MCAS. Double whammy. It won't hurt to try a trial of antihistamines and see what the results are.Today, I had allergies so bad - I've taken so much Claritin it's not even funny and still miserable. But, did so bad on the pepcid and afraid to take it. Got to get a different H2 and see if I can tolerate it. I just took some herbals that normally help me - so we'll see what happens. I'm sneezing and my eyes are so teary I can barely see to type this. Wind has been blowing and everything is in bloom here.Issie Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted April 16, 2012 Report Share Posted April 16, 2012 Issie,Have you considered OTC nasalcrom and or ketotifen eyedrops to help with seasonal allergies/environmental allergy symptoms? Both work great for me. Here's to better days,Lyn Quote Link to comment Share on other sites More sharing options...
issie Posted April 16, 2012 Author Report Share Posted April 16, 2012 Issie,Have you considered OTC nasalcrom and or ketotifen eyedrops to help with seasonal allergies/environmental allergy symptoms? Both work great for me.Here's to better days,LynThanks Lyn, I just got some Nasal Crom - I'll go use it. How long before it will help?Issie Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted April 16, 2012 Report Share Posted April 16, 2012 Nasalcrom works on my sneezing within minutes and clears my tames sinuses within 15-20 minutes. I then follow up with a nasal irrigation rinse and or eucalyptus or peppermint essential oil drops in steam. The eyedrops work within minutes, too! Lyn Quote Link to comment Share on other sites More sharing options...
bellgirl Posted April 16, 2012 Report Share Posted April 16, 2012 Chromolyn used to be a prescription that I took for asthma years ago. It actually prevents the histamine release, and I use Pataday, which is similar to the ketotifen eye drops, depending on your insurance, I think the latter may be cheaper. Sometimes I use Benadryl when I'm really bad, like I did a few weeks back, but even 25 mg. makes me really dry, and I hate the way it makes me feel. I think I'm going to try Zyrtec the next time I have trouble. I have seasonal allergies, and am a lot worse actually in the Fall when ragweed is rampant, but I have allergies to grass, and dust mites, too, so it's all around ...Thanks for the article, Issie...haven't been tested yet either, but I'm wondering if I should be. Right now I'm tired of going to the doctor, so I'm taking a break. Our flowering trees, although beautiful, are finished for the season, thank the Lord!! Quote Link to comment Share on other sites More sharing options...
issie Posted April 17, 2012 Author Report Share Posted April 17, 2012 I got some Zantec for the H2 and the eye drops that were recommended and have also been taking tons of Claritin and Nasal Crom and some herbals called Respiration and additional Vit Cand Quercetin. I'm also having to sit with a heating pad on my face as my glands in my neck are swollen and not draining properly and my TMJ is inflammed on that side. Ugh - amazing what allergies will do to us. My eyes are not as teary now and I'm starting to feel like I'm going to pull out of it. Despite all these horrible allergies . . . .I'm feeling better POTS wise. the clonidine seems to be helping. YaYYYY!!!!Issie Quote Link to comment Share on other sites More sharing options...
targs66 Posted April 17, 2012 Report Share Posted April 17, 2012 Glad you're feeling better on the POTS front, Issie! I hope the allergies improve soon too. Thanks for posting these links.I was digging around the internet on this topic and came across a product that claims to "increase DAO enzymes." In addition to Vitamin C and calcium, it contains "Diamine Oxidase Enzyme (as porcine kidney protein concentrate pellets) at 4000 HDU." The product is called "Histame." Has anyone heard of this? Is it really possible to increase DAO by taking a supplement (I'm skeptical!)? If not, is there any way of increasing DAO activity? I think I saw something about the old version of Benadryl (diphenhydramine) helping to increase DAO activity.thanks in advance for any input. Quote Link to comment Share on other sites More sharing options...
issie Posted April 17, 2012 Author Report Share Posted April 17, 2012 I researched that supplement about a year ago - and there were mixed reviews as to whether or not it was beneficial. I never pursued it past the reviews - because my conclusion was more didn't think it helped then did.I don't know how to increase it - maybe some others will chim in.Issie Quote Link to comment Share on other sites More sharing options...
targs66 Posted April 17, 2012 Report Share Posted April 17, 2012 Thanks Issie! I've also asked the question (of how to increase DAO) on a mast cell disorder site - will post here if I get an answer. Quote Link to comment Share on other sites More sharing options...
issie Posted April 19, 2012 Author Report Share Posted April 19, 2012 Targs66,Did you hear back on the how to increase DAO levels question?Issie Quote Link to comment Share on other sites More sharing options...
targs66 Posted April 20, 2012 Report Share Posted April 20, 2012 hi Issie -Sorry for delay in answering - I've had some trouble with the other forum (I realized that my original post had actually not posted(!), then got error messages when I tried to repost, etc.) . I think I've got the post sorted now (of course, the other problem is that I don't seem to be receiving notification of replies - sigh). I did notice that someone had posted that they had tried Histame but weren't sure if it was doing anything; someone else pointed out that it had "fillers" that might be triggers for people with mast cell issues.I'll post if/when I get an answer.best,Targs Quote Link to comment Share on other sites More sharing options...
issie Posted April 21, 2012 Author Report Share Posted April 21, 2012 Thanks!Issie Quote Link to comment Share on other sites More sharing options...
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