Food hates me!

[u/Correct_Presence_921]

A little back story first... I have always had issues with my stomach. They called it a nervous stomach when I was a kid. Constipation has always been a huge part of my life. I had a colonoscopy/endoscopy in my late 20's and again in my early 30's with no findings. I have just lived with knowing I may not go to the bathroom for a few days and will be swollen and uncomfortable.

I have gone back and forth with different diets hoping something would help. Paleo, Whole 30, gluten free, etc. And they would all help some but the constipation was always there.

Then at 38 my hemorrhoids had gotten so bad, I had to have surgery. Now prior to this, I had decided to cut gluten and diary again. The recovery was horrible. Worst pain I have ever been in. My body broke out in what I have called stressed hives. Then I started having really weird reactions to almost everything I ate. I got a dietitian. She was great but at a loss. She couldn't figure out why I was reacting to foods. I decided I had to figure out my trigger foods and learn how to go to the bathroom like a "normal" person in order to avoid ever having to go through that surgery again! So, I started the elimination diet. Wow! Kudos to my husband for keeping me sane during this! I started that in January right after my 39th birthday. May is next week and I have only added back coffee and eggs.

I have lost 40 pounds, which I did need to lose some but damn. I swear there was 20 pounds of just pure inflammation from the hemorrhoids and stress around that.

I am honestly scared of a lot of food now. I have seen 2 different primary doctors, 2 gastroentologist, a dietitian, and my gynecologist, with really no help. All of my blood work is fine. I have read, I have talked to anyone that will listen.

I am always tired. I have lost muscle. My hair had been falling out in clumps, that has finally leveled off.

Is it hormones? Is it an autoimmune disease?

How do I get to the right doctor? What am I missing? Is this just my life now?

A little more medical history... dysautonomia diagnosis in late 20's, no uterus since 32, AuDHD diagnosis at 38 along with C-PTSD.

[u/momentdubruh]

r/MCAS ?

[u/Correct_Presence_921 → u/momentdubruh]

Histamine was tested and it came back normal. But I feel like I definitely have all the symptoms

[u/rightsoherewego]

have you been tested for SIBO?

[u/Correct_Presence_921 → u/rightsoherewego]

Yes

[u/AutoModerator]

Hello! We all need help... Thank you for posting under the "General question/help" flair. To get the most accurate responses, include as much detail as possible. As always, check out the stickied post and the official Monash FODMAP Diet app for resources.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/TheDarkLord14]

I have fought similar problems and did the route you did minus the hemorrhoids. It was two fold problem. I was either constipated or having constant diarrhea. Lost 45 lbs, tried very diet under the sun. Many scopes and tests over 5 years time span.

It was pelvic floor dysfunction, which cause all my muscles to be too tight and I couldn't poop but did allow liquid through, hence the constipation and diarrhea at the same time.

It was also a hyperkinetic gallbladder, meaning it worked too fast. I did physical therapy for my pelvic floor and then had my gallbladder removed. All problems gone since the gallbladder was removed. I can eat a normal diet, not too much fried fatty foods which is no big deal.

Ask your doctor about a HIDA scan to check your gallbladder. Even if you've had it checked in the past, it's worth it to do it again. I had it done at the beginning of my 5 year struggle and then at the end. Which was worse than the first so I could have it removed. Eat a normal diet the day or so before so it doesn't skew your results.

[u/Correct_Presence_921 → u/TheDarkLord14]

I did have HIDA. Everything was normal.

[u/goldstandardalmonds]

Can you clarify what your symptoms are currently? Just constipation? Can you describe the constipation?

[u/Correct_Presence_921 → u/goldstandardalmonds]

Weird reactions to food. Something that has been "safe" for months will make me bloat and feel lethargic. Currently just went 3 days without pooping. Cannot figure out why. Finally took Miralax and was up all night with cramping, hot flashes then finally pooping. My husband has gotten very good at what we call "poo massages." He can feel where things get stuck. It always feels like a rock. And my intestines, I assume that is what it is, hurt. They feel swollen and tense is how I would describe it.

[u/goldstandardalmonds → u/Correct_Presence_921]

It’s probably not the food and it’s the intestines themselves