Need to vent a small bit

* Nicole *
on 8/11/17 3:47 am, edited 8/11/17 3:49 am

Yay wooohoo Im a DSer I can eat food and plenty of it.

Yeah till I cant....the last 4 days have been horribly frustrating for me. Ill be 12 years out on Tuesday. When your a DSer with MCAS...which carries all the same symptoms and effects as mastocytosis, just waxes and wanes and is not a constant state, lets just say it sucks.

MCAS gives me low blood sugar swings if I dont eat every couple hours. So when it also decides to give you low stomach motility, it seriously sucks. My intestines are growling but my stomach is like one bite love and its a bathroom run. Truely i have to force myself to eat some, usually with something of high acidity. Im gonna say this.... I HATE how much I have to eat in a day. I didnt eat like this pre-op. Yeah yeah calorie in calorie out can bite me at this point, thats out the window if your body is in a constant in flamed state of an autoimmune problem that whacks the starting standard hormones that set the stage for all the others we are more aware of off kilter. When the bodys reaction to food is not what it should be.

Ive been reacting to my vites lately so I am very careful with how many and much I take, yes I can react to things Ive taken and done for years. Only my Vit D holds steady.... well cause D helps in mast cell stabalization. Honestly folks learning the life of a DSer is a damn cake walk to MCAS, let alone a MCAS DSer. There has been only a small handful of studies with MCAS and WLS...all of them were band and RNY. The intricate details I have to know now, how they effect each body system and what I have to do to combat it, can be exhausting at the least. Luckily I enjoy learn such things.

So really what it comes down to Im hating food right now. Tastes great in my mouth, my stomach is telling me to go to hell, and my intestines & body are saying FEED ME.

UGH thanks for letting me rant. Im HANGRY as one can be and my body is calling me every name in the book for the last 4 days of maybe 500 calories a day. And my stomach is complaining of food being put in it.

DS Aug 15th,2005 @ goal, living life and loving it.

"An Arabian will take care of its owner as no other horse will, for it has not only been raised to physical perfection, but has been instilled with a spirit of loyalty unparalleled by that of any other breed."

biggeekgirl
on 8/11/17 5:30 am, edited 8/10/17 10:30 pm

You had your DS about 3.5 months after me. I'm sorry you are going through these issues.

About 8 months ago I started adding plant based meals to my cooking mostly to combat my husbands health issues. A month ago I pulled the plug and gave up all meat, dairy and eggs (even cheese!)

There's a reason I'm telling you this... I've joined a lot of groups to swap recipes and ideas and I just stumbled onto this page...(link below) I'm not sure what your dietary triggers are but eating plant based has very much reduced gas (crazy since I am eating a lot of 'carbs' but they are veggie and fruit ones) and when I do have gas it's not stinky and room clearing like it was.

One other option... I know people have had their DS reversed. If your health requires it don't be afraid to dig deeper into the idea.

http://thereluctantrawfoodist.com/all-about-my-condition/

Surgery on 4/25/05 , Dr. Alverdy in Chicago.  God Bless the DS !!!
Highest Weight = 412lbs, Surgery Weight = 359lbs, Current Weight = 155lbs (5'7" tall)http://www.picturetrail.com/gid8138761
 Lilypie



 
biggeekgirl
on 8/11/17 8:39 am

One more comment - I see some of my plant based forum folks follow this lady who boasts low histamine diet. She does eat duck and goose eggs and very fresh fish but her main staples are veggies / herbs. She doesn't eat grain which I'm not sure is good or bad.

Since I'm not eating fish or eggs I need grains to bulk up protein. Plus I like them.

Warning - she does try to sell stuff. If you follow her FB page you can glean great tips without buying her books.

https://healinghistamine.com/dr-castells-interview-lifestyle-changes-do-work-for-mast-cellhistamine-disorders/

Surgery on 4/25/05 , Dr. Alverdy in Chicago.  God Bless the DS !!!
Highest Weight = 412lbs, Surgery Weight = 359lbs, Current Weight = 155lbs (5'7" tall)http://www.picturetrail.com/gid8138761
 Lilypie



 
* Nicole *
on 8/12/17 2:50 am, edited 8/11/17 7:54 pm

The irony of MCAS is it itsnt just a histamine issue that it tends to be made out to be and is a bit deeper than the mast cell itself. And lucky are thoes who can use food to control it. But problem is its immunology based, and they have yet to find/separate the causes so it is lumped in MCAS. As there are many "lesser" known hormones that come into play that cause mast cell release. The human body isnt as easy as many try to portray it as. Esp this syndrome. And to be frank.... it ****** me off especially as an engineer, my life is knowing how things work separate and together for an efficent harmonie.

Small example is my current stomach issues. An example of histamine/excessive mast cell release driven is acid reflux. Which is an over production of acid caused by H2 receptors being told by histamine to attack. Yup I get it at times so I take H2 blockers when I have that. But the motility isnt driven by histamine, my acid production has been drastically reduced and slowed my motility by a failure of "lesser knowns" to make it to or effect the cells in my stomach to produce. So currently my cells refuse to act appropriately.

I cant do a heavy veggie diet...not even because of my DS. Heck my vites are vegitarian capsules and they can cause me GI distress. I take them till I start showing warning signs, I come off them for a couple weeks and slowly reintroduce. I stay on top of my labs big time. At times a low histamine diet actually causes me problems, because of low motility. Ive had life long gut issues, and many foods that most eat that cause weight gain, I can eat very little of. Been that way all my life.

Heck one high histamine food is actually more a help than a hinderance for me. That being pickles. Pickles and cucumbers are like mainstays in my daily food. Beef jerky is another. For me my body.tends to tolerate beef and chicken the best. Pork is a problem, when Im in the middle of a wane cycle is usually when Ill indulge in food that usually cause issue as I know they wont at that time.

Finally my stomach is comming alive...actually woke me up at 4 am growling. Cause yesterday I couldnt take it any more, my blood sugar was not staying as stable as I try to keep during this and my POTS was really starting to give me fits. I ate eggs yesterday, I am allergic to them. Want my body to react eat straight eggs or get a non egg-free flu shot....Ill be out for days. Mixed in foods in small quantities not to bad as it has to do with egg protiens so many are cooked to where they dont effect me. As protiens change/breakdown when cooked.

But my DS is going no where as a reversal wont fix the issue. Actually my DS helps to minimize reaction since I no longer really use my whole GI track. But now 11 years later we understand why I had a blockage in my bypassed loop. Surprise surprise 1-5% of thoes with severe MCAS have unexplained blockages. No cause was ever found all thoes years ago, it perplexed my surgeon. Its stupid how everything adds up from infancy till now. My GI track is the most heavily effected part for me but I have it severe with excessive cell production with standard shed, my sisters also have it (hereditary and all) with one having more in neurological/arthric effect, the other more neuro/GI.

I actually in my research think there is something more linked in this. And fully believe it has more to do with incompatible genes/mutated genes than simple triggers. Studies are actually starting to notice a pattern of the same. Im a grade A Heinez 57 american mutt, and thoes mutt genes of mine I think hold the key to my issues.

DS Aug 15th,2005 @ goal, living life and loving it.

"An Arabian will take care of its owner as no other horse will, for it has not only been raised to physical perfection, but has been instilled with a spirit of loyalty unparalleled by that of any other breed."

Sunshine16
on 8/12/17 4:39 am

Hi I do not know if this will help, but of course with the life choice and even if we did not choose this procedure you have to find out what works for you.

Dont know if this I'd any insight...

But I use to Love coffee, oh my God especially a bunch of that international delight before I went to work or during. Of course I am sharing post op experience. Well every morning my stomach would make these crazy noises, during meeting, it did not care...People would always think I was hungry...I'm talking these noises were extremely loud, everyone could hear and embarrassing. Well it turn out to be the milk and the strong caffeine. Plus I Now take this herb every morning to settle my stomach....Problem elimated, no milk products. Plusr the help of the herb to quiet my stomach because I still have to eat.

Plus I must start my morning off Right! I drink the slim fast energy drink with 20 grams of protein...That still have milk, but not as much...That controls my appetite overall thru out the day...However I am looking for control. I tend to only really have taste for protein, veggies,and sweets. I still desire my candy but not as much with the help of slim fast.

But thank god for not as much stomach sounds..plus take a certain iron pill every morning. I'm not sure how your energy with MAS..Its all about finding a sensible life style for you. plus research research... I tend to put Mk y symptoms on Amazon to and read reviews on how stuff work.

Learning me is a daily regimen, and what works for ME.

You never know you may got something out of what I wrote.

Right now I am dealing with gas in the evening...And I know there is a answer out there, I just have to find it. I like my pro biotic because it helps with my skin but it also contribute to my gas in the evening...Thank god its once I get home...God do have grace with me there.

SW / CW / GW 292 / 188 / 174 - Height 5'7, Size 10

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