Mcas Confirmed!!

[DoozlyGirl]

Hi all,

I haven't posted much here lately because I have been consumed with chasing down my mast cell symptoms. I first learned about mast cell as a potential cause of dysautonomia about 10 months ago on this site. My autonomic neurologist suspected I had mastocytosis after he witnessed one of my episodes where my face and neck was all red and blotchy, my BP was really high, and my speech was labored. He sent me to a dermatolgist, who ruled out mastocytosis, but I continued to pursue Mast Cell Activation Syndrome. Eventually I ended up seeing Dr Lawrence Afrin, hematolgist/oncolgist at the Medical University of South Carolina, and a leading mast cell specialist in the US, who agreed I had MCAS. After two visits to Charleston, SC, and 25 tubes of blood later, we captured laboratory proof of mast cell mediators during one of my episodes, which proves mast cell degranulation.

There are over 200 different mediators, or chemicals that are released during mast cell degranulation and episodes can lead to anaphylaxis, a life-threatening situation. Only a handful of mediators can be tested with current technology. I have had so many tests run over 2 decades of chasing down my symtoms, but have never had the tests that confirmed this diagnosis.

My heparin levels were in the range that patients on therapeutic levels of anticoagulant therapy have. My tumor necrosis factor (TNF) was 14 times upper range of normal, and my neuronal specific enolase (NSE) was 1.5 times the upper range of normal. These tests are all mast cell mediators released during mast cell degranulation. Since heparin is only made by mast cells during degranulation, patients with normal mast cells don't make heparin. My other two elevated values show massive inflammation, and are elevated with cancer or autoimmune disorders as well as chronic mast cell degranulation.

This all explaines why I bleed, am red like a tomato, black and blue all over and puffy like the Pilsbury Dough Boy, and am often accused of drinking, when I gave up alcohol long ago. This now connects the dots and explaines why my body can't regulate my BP, HR, body temperature, sweating, blood sugars and insulin levels, as well as catecholamine, neurotransmitter and hormone levels. No wonder I have been so ill. I have spent the past several years facing daily anaphylaxis, until medication stopped the continuous reactions.

I can stop my excessive uterine bleeding, headaches, plummeting BP, tachycardia, hypovolemia, 3rd spacing/blood pooling in my lower extremities, flushing, shivering, hives, vomitting, and other symptoms with dye free diphenhydramine (generic Benedryl).

I am now sleeping better, can awaken in the mornings, leave my house, drive close to home, meet friends out for dinner, and walk steps. I am on a MCAS regimen of H1 and H2 antihistamines and an anti-leukotriene, low histamine diet, and use low salicylate personal products. I still have a long way to go before I am back to my pre-crash days, but I am much better off than I was.

I hope this information can help someone connect the dots in your own journey.

Best wishes,

Lyn

[issie]

Yay, Lynn - that's soooo wonderful. Glad you're feeling better too.

Which H1 and H2's are you on? Can you tell us about your diet?

Issie

[Chaos]

How exciting to finally get laboratory confirmation of what you've suspected for quite some time. Even more exciting to be seeing improvement in symptoms!! So happy you finally have some answers.

Thanks for sharing all this info with us!!

[DoozlyGirl]

Issie,

I take Zyrtec, Zantac, and Levoxyl upon awakening. I take Zyrtec or Allegra and a Zantac or generic pepcid during the day for breakthrough, depending upon the symptoms. And I take hydroxyzine, zantac, singulair, and progesterone cream at night before bed. I take diphenhydramine for escalating symptoms and occaisionally an asprin for headaches that won't go away with the other meds.

My diet is pretty simple, oatmeal, fruit and almond milk for breakfast, and protein, such as nuts, fresh cheese or lean meats and lots of veggies for lunch and baked chicken, fish or lean beef with salad or veggies for dinner. I eat eggs once or twice a week, usually in an omlette. I eat just about any vegetable, rotating foods so I don't induce allergies. I also rotate my fruits, but keep high histamine foods at a minimum. I grow my own lettuce, garlic, peppers,raspberries, tomatoes, 10 different herbs and onions and pick my own organic apples, strawberries and peas. I make my own applesauce, tomato sauce, and freeze, as well as freeze herbs for winter and all make my own sauces, marinades and gravies. I also make fruit smoothies, sorbets and gelato type frozen fruit for snacks. I drink tons of water. My cheat food, which I am craving lots this summer is iced tea, but I limit it and drink only when non-symptomatic. I avoid artificial sweetners, dyes, preservatives, fast food, junk foods, soda, and limit consumption of bread, wheat, sugar and high glycemic foods unless I eat protein with it.

It's taken lots of trial and error, but it seems to be working for me.

[DoozlyGirl]

Thanks, Chaos.

[issie]

Thanks Lynn,

I wish I had a garden and could have all those organic foods. I noticed that you have a sulpha allergy. I learned through my 23&me that I too have issues with sulfa and sulfites - some of the foods you are eating contain higher amounts of sulphur in them. I have read that if a person eliminates or at least cuts down on those type foods - things should get better. Have you found this to be the case? It has something to do with the methylation pathways.

Does all the antihistamines make you tired and lethargic? I use Claritin and Zantac and Nasal Crom. I'm doing okay on those. I used to use the dye free Benadryl but realized it was causing my tremors to be worse. So, reserve that for a bad attack. I use the claritin twice a day and sometimes the zantec twice a day - but usually only once. I also use quercetin and tumeric and ginger. Can you use any of those?

I tried the protocol with the aspirin and it made me worse. I know it helps some, but I felt awful trying to use it. (If people don't know about this ----it will degranulate mast cells at a slow pace. The idea is to have a slow release rather than a huge dump. It is really helping some with their mast cell symptoms.)

Thanks for letting us know how you are and what you're doing. I sure hope things continue to go in the right direction for you. Keep us posted.

Issie

[DoozlyGirl]

Issie,

I haven't yet focussed on foods with sulfites and sulfa, except removing the dyes, which I leanred caused issues with methylation. Can you tell me which foods I am eating that are high in sulfa/sulfur? I have been so focussed on the mast cell stuff, this is on my to do list. Maybe this could get me to the next level.

In the beginning, I had issues with Zyrtec (took 3 the first day and crashed really hard, but I was only following Drs orders), but did ok with a dye free version/Brand at a slow taper. I find Claritin not strong enough, same with pepcid, as I have much more breakthrough. But I do well when I layer in my antihistamines, and mix it up a bit. I don't take high doses of zantac/zyrtec due to side effects(hair falling out and withdrawl symptoms and itching). Now I can take 20 mg hydroxyzine, zyrtec and/or 25 mg Benedryl without sleepiness. I tolerate an occaisional asprin very well, as long as I take my Z/Z first.

I've been very leary of loading up on the supplements, since I reacted to many in the past year. Vit D3 is supposed to lower TNF, so will be finding a decent one. I don't tolerate zyflemmend, which I read is similar to tumeric, so have yet to try it. Quercetin, is also on my list to try. Dr Afrin hasn't seen much success with it and a bunch of his patients trigger from it. Probably the salicylates, I suppose?? Also read that those supplements encourage blood thinning, so may have to forgo, since I have high levels of heparin.

Thanks again for the heads up on sulfa in foods. I look forward to your response.

Lyn

[issie]

Lyn,

There are so many foods that are higher in sulphur. Some are mushrooms, cabbage, broccoli, cauliflower, eggs, garlic, onion and there are many more. But, These are the ones that most people eat and usually every day. Some even have issues with lettuce.

I also saw that you are using oatmeal. Are you trying to be gluten free, or no? Also, dairy may be a big histamine issue for some. It really doesn't leave us a whole lot to eat - these allergies. God created and gave us these wonderful foods and it's horrible that we react to them. Also, canned fish of any kind can give allergies. Fish starts to degrade the minute it dies and unless you get a really fresh piece of fish you may react to it. I guess, there are so many things that we could react to - you just have to do your rotation diet and determine what's okay for you and what's not. I don't do well with peppers or tomatoes. Potatoes make my arthritis hurt more ---but, I crave them. Any time you crave something -- there is a good chance you are sensitive to it and it's like a drug to you. I can stay away from the tomatoes and peppers - but the white potato is hard. They are all in the same family - nightshade. You may find that if you are sensitive to one thing in a certain family you will be sensitive to nearly everything in that family. You can go on line and look up the different family groups and experiment with your rotation diet that way.

Eggs are really high in sulphur and I react very strongly to them. I don't do well with mushrooms either. I can't drink any type of wine - because there is a natural sulfite reaction that occurs. Of course, then there is MSG and soy products - that cause many issues.

Like I said, it doesn't leave a whole lot ----but, it can be done. I need to do some more research on this subject. As I'm just learning about the MTHFR mutation and trying to figure out what's okay to do and what's not. I did recently go get the methyl form of B12 and methyl form of folic acid. I felt awful with the B12 - and did some research and it said you should feel bad to start with - you have a detox that happens with it ----if you need it. What I read said you should lower the amount you take until you tolerate that amount and slowly the symptoms should get better and you should start feeling better. Well right this minute I don't feel better with it . . . .so we will see. I will give it a few weeks and see what will happen. It makes me really sleepy to take the two of them - so maybe, I'll sleep through most of the side effects of them.

I hear you on the supplements. You have to be really careful. If you try the quercetin - get a non-citrus form of it and you may do better. I wonder if the ones your doc has reacting is taking the citrus form of it. I've found that turmeric and ginger really helps my pain and I do feel better on it. I had stopped it awhile back because of some research that was conflicting. I thought it was helping back then and think it is again. So, will be sticking with it. It will lower TNF and also moderate B cells. So, if you're looking for something to help with autoimmune components of things these along with astragalus are what I've researched and found to be the alternative things for this. Also some different forms of mushrooms, but with the sulphur issue -----I even tried it ------but, yeah I reacted. So, hubby will have to take that and see if it does anything for him. He also has some autoimmune issues and doesn't think he has a problem with mushrooms.

Well, this has gotten long. Hope some of this helps. I could write a book on what I've learned about all of this. Ha!Ha! I've been researching foods and alternative type things for years.

Issie

[DoozlyGirl]

Issie,

Thanks for th einofrmation. I really appreciate it!

I don't do well gluten free (similar to Julie), but don't do well with yeasty breads or pasta, which is likely due to my candidiasis, which flares with more than minimal amounts of bread or pasta at a time. Tested negative to gluten blood tests and gluten IGE and oral challenge, but mildly positive for wheat on IGE.

I don't do well with milk, ice cream, and aged cheeses but love almond milk and can tolerate fresh/young (low histamine) cheeses like fresh mozzarella, farmers and feta.

I rotate my fruits and veggies and try not to overload any particular element. Will now consider sulfa in the rotation. When i was thoroughly tested for food allergies about 5 years ago, my allergist was adament that I consume small amounts of my "allergic foods" in small doses on a regular basis, so my body doesn't lose the digestion pathyways and enzymes to break down those components. But it was a challenge to not overload. I can eat a small amount of tomato once or twice a week, but not more. I change up my potatoes, rotating between yams, russett, red, and yukon gold potatoes, eating them once or twice a week.

I don't eat canned fish, and stick with frozen fillets of white fish, like haddock, cod or tillapia.

I tolerate red or yellow bell peppers and sweet peppers and serano, but only eat once or twice a week, rotating them. Been wondering about nightshade family, but I seem to do ok with them (at least compared with foods that I obviously react to).

I can't drink wine, beer or dark liquiors without major issues. I can tolerate a clean vodka, without too many issues except flushing. I figured out my sulfite issues through Irish whisky and wine. And I have had the most issues with MSG. What type of symptoms do you get with sufites, sulfa??

I have saved all the MTHFR emails and plan to go back and research those issues once I stablize a bit with my mast cell regimen. Interesting because I have allergy tested positive for phenols. i was on injectable B-12 for a while, but it made me feel awful and I could never tolerate iron or folate pills. Something to look into...

I really appreciate the information. Thanks again,

Lyn

[corina]

Congratulations Lyn, perseverance pays off, well done you!!!

[songcanary]

What a tremendous relief this must be. Very happy for you! Well over a decade ago I realized I had a sulphite allergy and it's been downhill ever since LOL.

[HopeSprings]

Wow! Hats off to you for pushing for answers and not giving up. I hope the treatment you receive will have you feeling much better!

[Christy_D]

Lyn,

My son's heparin levels are also extremely high. Dr Afrin said they were the highest he had ever seen. Unfortunately, so far the meds haven't helped any, but it can be a long trial and error period. The next on our list from Dr Afrin is Quercetin then Cromolyn. Right now we have added a morning dose of doxepin to have it in his system 24 hours a day.

Congrats on the diagnosis!

Christy

[bellgirl]

That's wonderful that you are able to do more living. That is truly our goal, to feel well enough for the simple things in life that others take for granted Glad you were determined to find answers and had the doctors who helped you through the process. Thanks for all your insights as well in regards to diet and treatments!!

[Katybug]

Lyn,

Congratulations! You give me even more hope!

Katie

[kluesyk]

Congratulations on a diagnosis! I am waiting on blood tests to come back from my visit with Dr Afrin the end of July. I was very impressed with him and hope he can help me, too.

[DoozlyGirl]

Thanks, guys! I was stuck in limboland for so long and chased down so many things, it is hard to believe I now made ot to the next level and have so many more treatment options at my disposal. I have to say, even with all the mast cell stuff on this site, I never saw it as core of my issues, until Mack's mom sent me a few messages and got me to be open to it.

I'd like to do the same for any of you out there with odd medication or food reactions, irregular BP, GI issues, crazy rashes or flushing (doesn't necessarily have to be hives or by itchy) episodic type symptoms or even continuous, as continuous could just indicate daily low grade reactions, and if a Benedryl, zyrtec, zantac or any other antihistamine ever made you feel better, then please consider mast cell. I had to study it for months before I could connect the dots. And now that I have learned how to interpret mast cell, I can connect even more dots. My positive mediator testing is just confirmation that I am on to something!

Experts believe that misbehavin' mast cells are at the core of numerous ailments and diseases, including autoimmune diseases, cancer, aneurysms, connective tissue disorders, alzheimers, autism, CFS, fibromyalgia, etc. Personally, I feel that POTS cases that are isolated to tachy and syncope, may not be a part of this, as it likely has a separate mechansim, but for those of you with systemic and crazy out of control symptoms, then it would be wise to at least consider if misbehavin' mast cells are involved with your symptoms.

Kluesyk, Dr Afrin reminds me more of a scientist thatn a physician, because he is so drawn to the mechanisms and molecules. I was also impressed, and can't wait to read his treatment plan for me.

Katie, you'll get there. You have made some great progress yourself!

Kim, I've dreampt of getting back on the grid, but know that I am able to do it, I'm finding it odd. The world has gone on without me and now I have to figure out what I really want. I know what I don't want. I don't want to live the same high stress, fast paced, superficial life, I had before. I want my new life to have more meaning with deeper relationships, and my situation is yeilding much stronger relationships. Call it a silver lining.

Christy, how high were your son's heparin levels? Are you going with Dr Theo's quercetin or a different formulation? Has the doxepin helped, and for what symptoms? I am so glad Dr Afrin has figured out some answers for your son. He won't rest until he finds that right med regimen for him.

Naomi, your right I never gave up. For nearly 4 decades I knew something was wrong. Over the past 20 years I had seen over 100 physicians. But it took a neurologist, dematolgist and a hematolgist to get me to this place. Treatment is already working, yeah! Now I just have a few things to work on.

Songcanary, I'd love to hear more about your sulfite issues. How did you figure it out, other thatn avoidance, have you found anything that helps? Are you intolerant of sulfa meds (antibiotics and others)?

Thanks Corina. Like a dog with a bone......I am most excited being able to get off the forums a bit and live a little!

You all have meant a great deal to me and I with you the very best in connecting your own dots,

Lyn

[azmusiclover]

Thank you for posting this. I see the mayo allergist in 2 weeks and I am convinced this is a huge piece of the puzzle for me. Hydroxyzine has been my lifesaver for months now and I just had another round of the dreaded "d" today and I thought, I'm going to take one and see what that does. 30 min later my tummy is quieting and I feel "better" minus a little fatigue.

I also noticed in your signature that we are both allergic to or have adverse reactions to a lot of the same medications. I find this highly interesting and fascinating since I also have two on the autism spectrum and one medical mystery girl who is 3.

Please keep sharing more as you find out things! It gives me hope.

[DoozlyGirl]

azmusic lover,

My pleasure.

I don't want to burst your bubble, but the docs at Mayo are not yet fully onboard with MCAS. Drs Butterfield and Weiler (both at Rochester) are very much in the systemic mastocytosis camp. Just last week, a friend,with confirmed MCAS was rejected by Dr Weiler as a potential new patient. If you are heading to Mayo in Arizona, Issie has had some great experiences there, regarding MCAS.

Definitely bring the Mastocytosis Chronicals, newsletter from The Mastocytosis Society website

www.tmsforacure.org as well as a few publications on MCAS.

Best wishes at Mayo and please keep us posted on your progress.

Lyn

[Christy_D]

Lyn,

My son's heparin level was .175, over 8 times the normal. I am getting the quercetin from a compounding pharmacy. Dr Afrin didn't say anything about Dr Theo's but he did say make sure it doesn't have anything else mixed in with it ie-Vitamin C with quercetin.

We too really like Dr Afrin. He really feels for his patients that have this. When my son told the Dr what his symptoms were, Dr Afrin told him how sorry he was for him.

Christy

[Alan-pots-IST]

whats wrong with haveing quercetin mixed with Vitamin c?

[issie]

whats wrong with haveing quercetin mixed with Vitamin c?

Nothing, except you might not can take enough of it, and finding both - not from a citrus source may be a problem. If you take too much Vitamin C it will give you the "trots". But, I think we may be deficient in it and can tolerate more than the norm. (speaking for myself). But, if you can take it a couple times a day and be okay with it - then go for it. If you look at research, collagen is supported with Vit C and so many of us with MCAS have EDS too.

Issie

[Christy_D]

I also think the 'prescribed' amount of quercetin is higher than most people take. Dr Afrin wants my son to take 500 mg 3 times per day. So, if it is mixed with other vitamins, it might be too much of the other ingrediant.

Christy

[Alan-pots-IST]

i was reading about Ketotifen, id like to give this a try to see it helps.

[DoozlyGirl]

Ketotifen tablets/pills is not yet available in the US, but is available elsewhere. Zaiditen eye drops are available OTC. Arrangements have been made allowing patients who have been diagnosed with mastocytosis or mast cell activation to obtain Zaiditen, brand version of ketotifen in pill form. More information is on the TMS website under the announcements at the bottom of the page. tmsforacure.org.