Discussion in 'Mast Cell Disorders/Mastocytosis' started by xchocoholic, Aug 25, 2012.
I saw this thread. Very interesting. Thanks for pointing it out, lansbergen.
OK, so obviously finding another piece of the puzzle (mast cell protocal) doesn't negate the need for the other puzzle pieces (eliminating foods and chemicals that cause reactions).
I had throat swelling followed by tongue swelling yesterday that scared me. I took Children's liquid Benadryl which helped the throat swelling a wee bit. Then when the tongue swelling came on, I took it more seriously and took 50 mg of Children's chewables and 10 mg Wal-zyr. Followed by another 25 mg Benadryl in about 30 minutes. I seem to react quicker to the liquids and chewables so I don't have the tablets on hand. That worked. So I avoided going to the ER.
I'm assuming it's from a new BBQ sauce, Three Little Pigs, I found which because it contains vinegar, I knew it had the potential of causing swelling. I became allergic to yeasts after drinking Kombucha tea, taking Virastop and Candidase and eating Bragg's ACV. All healthy, eh ? Sure, unless you become allergic to them.
The downside to treating myself this way is that I KNOW swelling can come back especially if you've had it once.
So I was a little concerned when going to bed last night. I'm feeling good today so it appears that was all I needed to do.
I learned this the first time my DD had anaphylaxis and ended up in the ER via ambulance. The doc treated her and then told us "If you need to, come on back". Now I had no idea at that time that he wasn't just being freindly.
After we got home it happened again. This time, like an idiot, I decided I could drive my DD. I drove like a bat out of hell cause she kept saying "Mom .... can't breath ... ". After we got there they told me never to try that again. Ambulances are prepared to deal with this and come equiped with life saving equipment.
To add insult to injury the ER tried to charge me for 2 visits. Sure, we were there twice but who's fault was that.
Not to mention they endangered me and my DD. And anyone else on the road at that time.
This isn't the only instance where I need to continue with some of the things I learned over the last 7 years. I still need 250 mg B6 and Magnesium to help control my pelvic pain if I want to eat more than a tiny square of chocolate.
This may have something to do with the cocao content and manufacturer too. I'm still playing with that. I learned about the B6 and magnesium on the low oxalate board so maybe this just applies to those of us with oxalate problems. I have a history of producing kidney stones. Four or five now. My last one was earlier this year.
And I have some sores on my head that I didn't have before I started playing with my diet. Avoiding the Late July blue corn chips seems to be helping that.
So, it's back to my mostly Paleo / Wahls diet and no yeast.
Hope everyone is doing well. Tc ... X
Well, yes, one of the things people with mast cell activation disorders have to pay attention to is what triggers reactions. These need to to be minimized, obviously. But specific treatment for MCAD exists after one is properly diagnosed.
Just for the peace of mind, I'd get properly diagnosed if I lived near someone who could do it. From what I've seen,
Dr. Afrin is the closest to me but that's still 8 hours away which means I'd need to get a hotel, etc.
And hopefully I could get a family member to go with me because chances are, they'll do something that wipes me out.
I get exhausted for 2 - 3 days after a blood draw. At my level of functionality, this would be very difficult but
not impossible. I'd be a walking zombie is all. Lol. And that's if I could stay on my allergy meds.
Also tho, I'm not sure how good the tests or treatments are even if you see a specialist. Isn't it
still hit or miss depending on a person's intolerances ? I seriously doubt my reaction to cornstarch
would've led anyone to recommending Wal-zyr.
I know testing for allergies themselves are never 100%. Been there, done that, got bruised trying. Lol ..
Tc . X
Well, you could always try a local immunologist or hematologist and take Dr. Afrin's "Primer" with you. Or maybe even a doctor you have an established relationship with.
Good idea. I'll have to see if we have someone here. My doc already said she wasn't up on this. Tx.
I'm still unsure about how good the testing is on this but I need to spend more time reading
forums to see how it's going for those who have been properly diagnosed and treated.
TC .. X
Oh dear, X. Sorry to hear about your bad reaction. This is what I've learned from reading the masto websites. Most don't take benadryl on a daily basis because they find they develop a tolerance to it. They save it for their bad reactions. If liquid benadryl doesn't stop a reaction, they immediately use an EpiPen. Anaphylaxis sure can rebound on you, that's why the EpiPens come in two packs now. I'm sure if you called your doctor and told her about your reaction, she'd be happy to call in an EpiPen prescription for you.
You might be able to get a doctor referral from the Mastocytosis Society. Here's a link to their support group page.
Looks like they do have someone coordinating the southeast.
No more BBQ sauce for you!
I'm just wondering if throat and tongue swelling always lead to anaphylaxis. My lungs didn't get involved
yesterday but today they feel a litte tight. I never felt like I couldn't breath at all. My throat hurt and
I had to strain a little to breath. My dd would gasp
for air when she had an attack and she'd get too weak to talk.
I ask because I've had throat swelling for at least a
year but learned my triggers and avoided them and/or took Benadryl. The Benadryl has always
worked so it's definitely an allergic reaction. Thanks for letting me know
not to overuse Benadryl.
The tongue swelling was new. I felt it in the back of my mouth and it was painful. Benadryl took care of it.
until that I felt like I had this under control. I'll call my doc tomorrow and see what she recommends.
I remember my dd hated how she felt after the epi pen so I'd rather avoid that. They used to recommend
you go to the er post epi pen too. Do they still recommend that ?
Hmmm, I should get a script to test tryptase, ? just in case I end up in the ER. If my allergy bucket
is full right now this could happen again from a different allergen easily.
I tried this bbq sauce because I wasn't sure how I'd respond to vinegar aka dead yeast. I'm definitely not going
to try it again. It's yummy for anyone who's not allergic to it.
Tc ... X
Tongue and throat swelling are considered angioedema from anaphylaxis. The EpiPen does cause your heart to pound and makes you shaky and all, but it does take the swelling down and stops the progression of the reaction. The last bad reaction I had went from swollen throat, to swollen tongue, to passing out. You sure don't want to do that! Fortunately I was able to give myself a shot in time and it brought me right around.
A lot of people have a block about using their EpiPens. I've seen people on the masto boards saying they are in the middle of a bad attack and don't know what to do and everyone's saying "Use your EpiPen!"
I think they still want you to go to the ER after using one so that they can watch you for rebound symptoms. Sometimes they prescribe a course of prednisone. I didn't do so well on that myself, but most people seem to be okay with it.
Yeah, a standing order at the hospital for a tryptase and other testing might not be a bad idea, but I sure hope you don't need it! Hope your breathing improves and you feel a bit better tomorrow.
Given tryptase's ephemeral existence, testing for serum tryptase in the emergency room while in the middle of an attack may be your best bet. And even then, unless you have full blown mastocytosis, you may not get an abnormal reading.
By the way, the Mastocytosis Society has a mailing list you may want to subscribe to.
I second this recommendation.
Thanks for nagging me. I called today to request an epi pen be called into my pharmacy
and a suggestion on doctor. No sense being worried when I could have what I need handy.
I still have a headache from all that. A freind suggested that all that Benadryl may have dehydrated
me. She's probably right. A single dose dehydrates me and I had at least twice that.
Tc .. X
I'm always more than happy to nag, as my boyfriend will attest. I'm glad to hear you have nothing more than a headache today. No rebound. Good!
Here's an anecdote from a masto board that I thought you all might enjoy. A woman had been through two skin biopsies trying to get her spots diagnosed, but wasn't having any luck. She was at her vet's when he noticed her skin and told her she had mast cell disease. She changed dermatologists and the third biopsy showed that her vet was correct. Apparently mast cell disease is common in dogs, so vets know a lot about it. Another woman piped up and said that her vet understands her illness better than her doctor and has given her some good advice. So I guess we all just need a good vet. lol
Dermatologist's office finally called and the pathologist didn't see any mast cells in my second biopsy either. Gah! The doctor wants me to come back though as he has some topical agents he wants to try on my spots. His assistant said he also wants to run some tests including a serum tryptase, so he obviously still believes it's TMEP despite the negative biopsies.
I guess I'm fortunate to have two doctors who seem to be on board with a masto diagnosis. I'm just wondering how much more money and energy to invest in getting definitive diagnosis. I was really hoping the my skin condition would be a slam dunk.
Grossness Warning: Here's a link to a photo of my skin that the pathologist says is 'normal.' Each dot is a telangiectasia which is why I have a tentative diagnosis of TMEP Mastocytosis. Should anyone run across something that looks like this in their research, please let me know.
I just saw the pic of your skin. That looks painful. I have no idea what it is either tho. I'm guessing you've changed everything you could think of trying to figure it out, right ? Hopefully your docs can figure this out. All your tests make me wonder how good those biopsies really are ...
Sorry if this is redundant but did you google "pictures skin rashes" ? I did and found Mayo and web md have extensive lists. Here's the Mayo link ..
Sorry to hear about your crowns too. HUGS ...
I'm frequenting the masto board and trying to get a handle on mast cells. I have so many questions ...
I was thinking though ...
How much do our gut problems this contribute to a higher than normal histamine level ? All I know so far is that fermented foods contain histamine and need to be avoided by people with mast cell disorders.
The bacteria and yeast in our guts are continuously fermenting foods. So if we have digestive problems, like gastroparesis and insufficient digestive enzymes then we've got more fermentation going on than normal.
I've read about putrification dysbiosis (rotting foods in our guts) being associated with foods stuck in our guts from slow transient times. I can only imagine the histamine from something like that. I "think" I get this from beef.
tc ... x
Thanks for looking at the photo of my yucky skin that has confounded my family's doctors for decades (my mother and brother also have it and are both ill, too). Fortunately it doesn't hurt, just itches a little at times, and is confined to my arms and legs. The spots started in my early 20s and never go away. They just keeping accumulating and piling on top of each other. I just read an article on TMEP that said the diagnosis is usually made clinically on morphology and that the biopsy is considered confirmative. The dermatologist did say that TMEP doesn't produce many mast cells, so is hard to catch. So it may be that my dermatologist and doctor may end up overruling the pathologist. I'll see in a couple of weeks when I go back.
I have seen gastroparesis mentioned a few times on the masto boards. It would make sense that food fermenting in our guts for days would not be good. Some say to avoid leftovers unless you freeze everything because meat, in particular, develops more histamine as it just sits around. So I guess the answer would be to try to avoid food that doesn't move through quickly and take digestive enzymes and/or drugs for gastroparesis? I've been trying some digestive enzymes for the last week, but they are making me bloat so I'm not sure if they are helping yet.
I think I have mast cell disorder. I am now taking zyrtec which helps with the muscle and bone pain after using so many medications with no results. Benedryl does not do the job for me. Allegra is another drug that I will try very soon. I get eczema rash but nothing like what you see in Cama's picture. I also have a very large and burning belly, and a white raised coated tongue. The tongue symptom appeared very suddenly.
Would you mind sharing where, in general terms, you live? I'll try to find a masto doctor near you...
It's also usually a good idea to take an H2 blocker. My preference is famotidine, which I take 3 times a day, with meals.
Hmm, the tongue thing could be a fungal infection. Have you taken steroids lately?
I live in San Francisco bay area. I have some ranitidine at home. Tried it before with no obvious effect, but never with Zyrtec. I will take 1 or 2 today to see if it helps. Famotidine is next if this one does not work. I was not using steroid when I got the tongue thing, and I have taken a few Azole group drugs which did absolutely nothing.
Also so many people in my family suffer from Eczema, and one suffers from allergy attacks and need to be hospitalized from time to time.
You have Jason Gotlib in Stanford. You may also want to contact Valerie Slee, chairwoman of the Mastocytosis Society for additional referrals, assuming they exist.
For best results, an H1/H2 blocker combo is ideal (due to autoexcitation of mast cells by histamine). And it's just too bad that there aren't H3 and H4 blockers available yet.
In case of thrush, I believe that the standard medicine is liquid Nystatin. You then keep in in your month for some time...
You can also try a Google Site Search
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