When you still dont fit in.....

Ok real quick on the reduce my food consumption and calories. As I said in my original post, my DS annoys me many days because of HAVING to eat. I sadly have to eat more in a day now than I did prior to surgery, it sucks. Im not food driven or food motivated. I eat at times because I have to not because I want to. I wish calories in calories out was truely my issue, you have no idea.

In short MCAS in rare effects can cause weight gain. We all know how well fat is at holding hormones and such, well this is similar. When my mast cells over react, and over whelm the body with histamine, a good defense was my body containing it in fat. So every little bit of anything that could be turned to fat was to contain it. So my symptoms werent as drastic as they are now.

With the DS being fat malabsorptive, it took away the fat factor. So when Im having a cycle it hits me hard and when I got down to my very lowest weight is when I had all my shock episodes because my body was over whelmed there was no where for my body to store the excessive histamines. The symptoms I get vary as it is systemic and cycles. Some worse than others.

It acts like masteocytosis, just not a constant state and I do not have excessive mast cells or not enough extra for it to be. But I do have much denser than average bone which is what drove me and my drs down this road, as it can cause excessive bone.

As my labs have always been good, Im healthy, fit. So trust me last thing I wanted was to learn what cursed me to be heavy is cursing me now. Its a bit disheartening, but glad to finally know. And for my family to finally feel at ease themselves as I was the eye sore fat kid (in my eyes) in a good average family. The comments from others to them about me was more painful than any name that could have been said to my face. And my sisters have also been tested and they too have it luckily not as extreme as me, but explains problems they currently have that has been elusive to treatment.

Hi! I'm sorry to hear your having a hard time. I was just curious about your MACS and was hoping I could be a little nosey. What are your symptoms with it? You mentioned having "shock episodes", what is That?

I have CVID (common variable immune deficiency), PIL (primary intestinal lymphangiectasia) and just recently dxed with POTS (postural tachycardia syndrom). It was mentioned its possible that I have MACS in connection to the pots and cvid (All 3 being kind of feeding off each other), but i honestly don't have the energy to pursue the dx of it (I've found that I have to do all research and ask the right questions cause my Drs dont).

Anywho... So I was curious if u could share your symptoms. Do you have POTS? How was your weight loss once u got the surgery?

I do get POTS at times. I just eat plenty of salt (sometimes litterally salt cause I dont want to eat food).

Symptoms: fatigue, loss of color most noticable in lips hands and feet, being cold when no reason I should (I have been in pants, shirt, and hoodie in 80 degree sunny weather freezing, and my feet were always cold even prior to surgery), intolerance of cold, feeling weak, i had anxiety on the rise (and to not have anyone consider me inconsiderate...Ive very aware of myself this was new as of a couple years ago, no trauma to start it , it came about once my body started really freaking out), severe debilitating muscle cramping through out my body (used to just be in my calves but after surgery it progressively started spreading as I lost weight), stomach issues from birth, rapid heart rate, lightheadedness, weakness after the most mundane of tasks (ex: going up a flight of stairs). Weird allergies (stainless steel and gold to name 2), and major issues with fillers and antibiotics. Tunnel vision, ear ringing, low blood sugar episodes. Stress, good, bad, happy, sad, once the adreneline has wore out it takes me down hard. We caught that it has caused a mild but constant elevated state in my cortisol levels (which is required for glucose levels, adreneline, handling the bodys stress etc....we actually chased after adrenal problems first). Blurred vision (I still test 12/20 right eye, 15/20 left), slurred speech (that comes when its getting really bad), major mental fog, attitude swings. Food allergies, intolerances and flat out vomit worthy at times (its not always the same foods, it cycles just like MCAS).

And there is probably more I am forgetting as they probably dont effect me bad enough to care. Yes alot could be other causes but they have been ruled out.

As for the shock episodes its the shock type that someone with a severe allergy that wasnt treated immediately would get. It basically a combo of the worst of above, with rapid breathing. The body using all remaining energy for saving organs, seizures are possible if bad enough. Uncontrolable shaking (like your freezing cold).

Luckily now that we know what and what to keep it from effecting me as badly, Ive been doing better. But I sure wouldnt wi**** on anyone and its a hell of a way to find out you have had something your whole life.

As for my weightloss, it was great and still is and would do it all over again.

Nicole,

Thanks for the full explanation. Looks like you had to become an expert on MCAS, like we had to do with the DS. I guess learning the triggers, can help you to adapt before your whole system is "shocked".

So sorry that you have to live with this day in and day out.

I know many could get confused by or misunderstand my original post. Cause as you see to even begin going into the hell that can be MCAS is insane.

I actually allowed myself to gain back to 220 from the 207 I was because I felt better at a heavier weight. Now that I know why that was the case I am carefully working my way back down to 210. I was much happier with my physical body there but I would live with the 10lbs if it helped me feel better. Its a give and take.

Worst thing is most all of what I listed really started to appear post DS. My fat controlled it prior, thus why I could gain so easily it was my bodies coping mechinism. So in a way I did have a coping mechinism just it was driven by my body not me. And it sure never drove me to eat, food has always been nothing more than fuel for my body to me, especially when you never knew what was going to give you the 3hr stomach aches from hell from eating. That is what makes it so hard to relate to people, most no one (drs included) would believe anyone in my family that eating wasnt my issue. Drs blowing your mother off as a "first time mother" when her child is cronically colicky for 10 months, crying 13-14 hrs a day unless when being fed (no she didnt over feed me either). I put family members in tears when they would try to baby sit to give my parents a little break cause I didnt stop crying. My parents were afraid for years to even think about another kid. My sisters are affected a bit different than me (not as severe thank god) but they are starting to show more issues than before and I fear for my nieces as its hereditary. Or a crazy thing when I had my DS, my surgeon was floored that 99% of my fat was skin deep. My abdominal wall was more that of a "normal" person I didnt have the fat around the organs like many do. I was litterally in a fat suit. I didnt need a full tummy tuck, just skin removal. My abdominal wall wasnt stretched. *sigh* to get into all the off the wall things my body does.

So yes it can make me hot under the collar when people "blow it off" like Im lying about my eating and how I got fat. So I do my best to understand that things have been so engrained by society and doctors as to why things happen like its a for sure thing. Medicine is a practice, that constantly is evolving. And there will be cases that dont fit the standard molds.

I'm sorry your having such a rough time. With the exception of the weird allergies and allergic shock episode alot of your symptoms sound like the POTS symptoms I have. It might be worth it to pursue medication for it. Ive just been dxed with it but have had the symptons since i was 13. High salt and extra water just don't work for me. And while the meds i started dont cure it, it does help a my hr from getting so extream. For example, without meds resting HR is 90 and on standing goes to 150-160, ON meds resting is 70/80 and on standing goes to 120 (140 on bad days). But I'm a bad example, I have a alot of other things that exacerbate it so that's why it barely works for me but maybe it or something like it will help u. Obviously it can't help the allergic reactions of the Macs, but maybe it cab help the horrible POTS symptoms that make it unbearable. Just a suggestion. Hope u feel better and know your not alone. U can message me any time u want to vent.

No need for sorry, if folks can learn from it I am good with it.

Yeah my POTS is more from the MCAS, and it cycles. As it doesnt always happen during a MCAS flare.