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General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Do I understand correctly? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1361658873 Message started by DavinaRN on 02/23/13 at 10:34:33 |
Title: Do I understand correctly? Post by DavinaRN on 02/23/13 at 10:34:33 Until Dec 26 my life was normal. Always itched after a shower, usually had bellyache after meals, headaches were the norm, though I was gluten intolerate since celiac negative. On that day had an Ana reaction that started like gluten intolerance just progressed way beyond. Saw allergist Jan 11, not allergic to wheat or other 119 foods. He mentions mastocytosis, MCAS, IA and sends for more tests. Can I just say as a nurse, I only remembered mast cells involve allergies and wound healing. We have since narrowed it down to MCAS, unsure type. I have done tons of research and what I think I know is: 1. I can have reaction to whatever 2. Although I may not react to it today, I may tomorrow 3. I can have set triggers that I will always react to (wheat for me) just intensity may vary 4. I have a bucket and every time I react to something, even if I don't notice it, it gets fuller. When the bucket spills over I have an Ana which is criteria one- acute onset with skin or mucosal involvement with either respiratory or low bp OR criteria two- acute onset of two or more skin/mucosal involvement, respiratory, low bp or GI issues ORcriteria three-super low bp 5. Half the meds to treat are not covered by insurance 6. There is no cure, it may progress and you have to pray the dr who treats you never moves or dies because its an orphan diease that most are clueless about. 7. Oh yeah digestion can be a trigger so the steak you just bought you only get two bites of >:( 8. The ER may think your crazy if you tell them what's really wrong, so just say wheat allergy, make sure to do epi before you go because you may have to wait on it there. Does this sum it up correctly? Sorry, slightly aggravated right now, that outback steak looked so good. |
Title: Re: Do I understand correctly? Post by vicmjones on 02/24/13 at 09:52:53 I'm no expert here, but I see that no one else has responded to your questions so I will try to. 1. Yes you can react to "whatever" but most likely you will react to your known triggers more severely and you can have small amounts of "whatever" these include high histamine foods etc. 2. Yes, you may react tomorrow, but again your known triggers are the most important things to eliminate at this point. It may take years before you have other triggers. My first reaction was also wheat and it took me another 5 years before I started reacting to other foods. 3. Yes. 4. You have a bucket but it does not become permanently fuller just because you had a reaction. (This is my experience not science.) 5. I don't know. 6. Yes, it will probably progress. Mine has but the progression has been slow. The doctors are learning a lot about Mast Cell disease right now it is a big buzz word in medicine, so I believe in the near future we will have a lot more doctors who are knowledgable about this. We can thank TMS for this education of the doctors. 7. I have never heard of this, I think (but I don't know) that it is just the food that is a trigger, not the digestion per say. 8. Maybe. I have not had to go the ER yet. Thank god. That was my input on your questions. Of course you and others may have other experiences. |
Title: Re: Do I understand correctly? Post by DavinaRN on 02/24/13 at 13:48:52 Thanks vicmjones. Per my doctor, I react to digestion since I can react to some food then wait a couple hrs and finish it with no problem. |
Title: Re: Do I understand correctly? Post by Starflower on 02/25/13 at 00:24:47 Yep. The mechanical action of eating can be trigger. Heat is a problem too. My first trip to the ER was caused by a big bowl of hot soup. For a while I thought the ingredients were to blame. Wrong. There are a lot of downsides to having a mast cell disorder :-/ On the bright side, I have a much healthier diet now... and I'm much better at setting realistic goals. I can take good care of myself! This is something a lot of people don't learn until it's too late. Heather ps - Steaks are routinely "aged." This makes them tasty, but full of histamine. The only time I eat steak is when I get it from a trusted local farmer... who quickly freezes all the meat after a slaughter. |
Title: Re: Do I understand correctly? Post by missmarple on 02/26/13 at 13:12:31 davina - number 6 on your list actually made me laugh out loud. So so true! I hope my doctor doesn't suddenly decide to specialise in another branch of immunology... |
Title: Re: Do I understand correctly? Post by DavinaRN on 02/26/13 at 13:31:20 Missmarple-glad I made you laugh Starflower-any suggestions on the digestion issue. I'm considering trying smoothies/protein shakes for breakfast. Then a few small one cup of food meals and see if that helps. |
Title: Re: Do I understand correctly? Post by BlueSkies on 02/26/13 at 16:01:20 Starflower, This is a completely new thought to me, that the mechanical act of eating can be a trigger. Could you explain that in a little more detail? So I can see if that is happening to me some of the time. Thanks! BlueSkies |
Title: Re: Do I understand correctly? Post by Starflower on 02/27/13 at 02:51:01 DavinaRN wrote on 02/26/13 at 13:31:20:
I actually have a couple of suggestions for you :P First... I would stick with foods/drinks that are at room temperature. Cold and heat can both be triggers. When I'm stable I can handle hot drinks, but when I'm not (for example... when I'm travelling) I'm very cautious about things like this. Second... try "premedicating" before you eat. Take a dose of H1/H2 and give it a little time (maybe 10-15 minutes) to kick in before you eat. For this purpose, some people also spread their doses of cromolyn sodium over the day, taking each one before a meal (and the last one before bed). Blueskies... ever had a doctor who tested you for dermatographism by rubbing a fingernail or a tongue depressor over your skin? Irritation from eating is like dermatographism in your GI tract. It doesn't matter what the food is... it's the rubbing (of food going through your system) that triggers your mast cells. Bummer. Heather |
Title: Re: Do I understand correctly? Post by BlueSkies on 02/27/13 at 06:32:00 Heather, Thank you, I understand it better now. The dermagraphia is a good illustration. Interestingly, all my life I have avoided hot foods. Even as a child, hot foods - that everyone else could gobble down - would burn my tongue and make it blister! I wonder if it was the masto even back then making my tongue so sensitive? Davina, I hope some of Heather's suggestions help you. Thanks! BlueSkies |
Title: Re: Do I understand correctly? Post by DavinaRN on 02/28/13 at 12:59:52 Temp of food doesn't seem to matter much, but then again I've never liked hot drinks or soup, so it's usually lukewarm. As to pre-med. I react even at breakfast. Am meds are 360 Allegra 300 Zantac. Suppose to start gastrocrom in 2.5 weeks so hopefully that will help. |
Title: Re: Do I understand correctly? Post by Starflower on 02/28/13 at 23:25:38 DavinaRN wrote on 02/28/13 at 12:59:52:
That made a big difference in my GI symptoms... although it took several weeks to get the full effect. Heather |
Title: Re: Do I understand correctly? Post by Lisa on 03/01/13 at 07:50:35 Hi Davina, if you don't mind I'm going to step in her and add a few comments to your questions. DavinaRN wrote on 02/23/13 at 10:34:33:
I hope this helps you, Davina. Don't get discouraged, I think that you could try again at that steak, but perhaps you want to have them cook it a bit more to being well done and even take an antihistamine prior to trying the steak out for yourself. Hard to give up on a good cut of beef!!! :( Lisa |
Title: Re: Do I understand correctly? Post by DavinaRN on 03/01/13 at 10:22:08 Lisa thanks for the insight. As to allergies, I'm negative to the 119 he tested, but consistantly react to wheat EVERY single time (negative for celiac). My steak was well done, doctor things I react to digestion because other than wheat (which I avoid entirely) there is no rhyme or reason other than I'm eating. As to could be worse, I do realize that. Spent 6 months waiting on repeat test on lungs for spot. That was during the yr hunt for the reason for chronic fevers and night sweats. |
Title: Re: Do I understand correctly? Post by ruth on 03/01/13 at 10:30:55 I have just posted about papaya/papain under the histamine foods topic. Papain is a meat tenderiser derived from papaya which I suspect my son has reacted to, maybe this is another reason for reactions to steak? |
Title: Re: Do I understand correctly? Post by DavinaRN on 03/24/13 at 14:28:55 Just wanted to give an update. Started gastrocrom three weeks ago. Breakfast is still an issue so smoothies it is :). Other meals must be timed with med or I get lump and can't swallow, sick to tummy etc. wheat/gluten remains off limits. It is still an issue every time just not as bad of one. >:( |
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