Hello everyone, I am new to the forum and looking for some advice. So here's my story...
I am 31 y/o healthy white female, 2 children. So, I am having "attacks". I would say they started in 2012 (either around, during, or after my first pregnancy, can't remember for sure) I have these attacks (it feels like at random, but could be related to junk/fatty food, but I eat that type of food often, as in every day). I was having the attacks once (twice at the most) a year at random, four about 4 years, always either about 45 min following a large meal or in the middle of the night awaken from sleep. The closest feeling I can compare it to is food poisoning. Light headedness/dizzy, coldsweat, flush, intense abdominal pain (lower central aka gut), this is always accompanied by a need for a BM, but its not constipation or diarrhea, it's like small amounts of regular stool in this drawn out process of me going back and forth between laying on the floor writhing in pain and getting back up to sit on the toilet. They typically end with my teeth chattering and me shaking like chills.
For four years these episodes would last anywhere from 15 min to 45 min max. I always thought something just really REALLY didn't agree with me. However, this year, in May I began to have the attacks once a week, one week I had two attacks in the same week (we were on vacation). The attacks increased in severity, and also in length being more like 2 hours. One attack I forced myself to vomit (which is not a typical reaction, but I was in Disney World and like in panic mode of how to get the attack to quit and wishing I had not eaten my last meal) this attack ended in hives completely covering my body.
All of my tests (abdominal ultrasound, CT scan, HIDA scan (86%), upper and lower scope) have returned "normal" and no one is giving me any definitive answers. My GI said maybe gall bladder and recommended removal, I met with surgeon and he said he is not confident enough to do the surgery and is doubtful that it is my gall bladder because of my tests being normal AND pain is lower abdomen (wrong place for gb) Basically he talked my GI into exploring whether I have IBS or not, but when my GI called me with his plan for moving forward, it essentially was just to wait it out and call him in a couple months with an update??
Thank God, in desperation I started to cut way back on fat in my diet to see if that helped, and I have not had a full on attack since. I am strict with eating less than 15g of fat per meal (most breakfast bars are 8-9 to give you an idea). If I get into that 15-25g level I start to feel symptoms (which I've done twice accidentally) both times were similar, just upset stomach following meal with diarrhea 3x in an hour then it was over - one of those times my face was getting pretty red and I got a couple of hive welts on my face.
**As an important side note, when I got home from my HIDA scan I had a severe attack - this one did include vomiting as well as all my other typical symptoms although I did have a lot of diarrhea I think due to so much liquid being in my system. None of my doctors seemed to have an answer as to why I would have an attack AFTER the scan. Ughh! I feel like this has to mean something.
Anyway, basically I am here seeking anyone like me who's been treated? Advice? Steps moving forward? I am fine maintaining for now, but have a desire for answers. One of the main things I'm wondering is do my symptoms sound like IBS? I also want to mention all my life I've been "regular" in frequency and consistency, and other than the attacks I would consider myself regular even now. Also I don't have any notable problems with gas/bloating, maybe just a little bloating during attacks but nothing severe.
I am waiting on a call back to get an appointment with another well know, reputable GI for a second opinion.
Here are some of my notes of things I've eaten that triggered attacks:
May 1 - Big Mac - 45 min later
May 8 - dinner lamb steak and loaded baked potato, before bed snack graham crackers and milk - woke up 4am very severe attack
May 15 - (disney world) turkey sandwich thick cheese basil aeoli, chips, pasta salad - 45 min later (this was the one that ended in hives
May 19 - (also on vacation) 4 pieces of pizza - 45 min later
my two non full on attacks since starting low fat
June 17 - lamburger (14g) and a piece of hershey pie (19g) -45 min later diarrhea 3x in an hour and two hive welts on face
July 15 - 2 turkey hotdogs (18 g fat), fruit - 45 min later diarrhea 3x in an hour
I eat all kinds of things now, only limiting the fat. Cereal with milk, lean cuisines all types including pizza, breakfast bars, protein shakes, turkey sandwiches, subway sweet onion chicken teryaki, rice, beans, grilled chicken, extra lean beef aka spaghettis tacos burger etc, salmon, tuna, salads, all skinny cow ice cream treats, mcdonalds ice cream cones, bagels, breads, of course fruits and veggies (no avacado)
These are my main staples for eating at the moment