u/Hot-Insurance6272

I have horrible abdominal pain all day long (usually worse in the morning), food intolerances so I only eat few safe foods, abdominal cramping, bloating, constipation that is incredibly stubborn (and painful) but also diarrhea attacks with horrible pain and cramps.

I was told it was IBS but amytriptiline/noretryptiline wouldn’t do shit. Pain did not improve. Then decided to do a GI MAP and a nasal swab. Turned out I have very high C. difficile toxins numbers in addition to citrobacter and streptococcus and a leaky gut. Furthermore, I also have Marcons in my nose and klebsiella that have also formed biofilms. That will push your MSH hormone to zero which will leave all your GI membranes completely exposed to pathogens and also MSH controls your immune system so your immune system will also be completely messed up and possible starting to react to normal foods. For the ones that can’t find any answers I would recommend looking into this and taking a look at Chronic Inflammatory Response Syndrome.

https://preview.redd.it/unre12b06rsh1.png?width=916&format=png&auto=webp&s=9378d47a55491d72e1b4ff049e4b190139fb1cd5

https://preview.redd.it/m6niukl36rsh1.png?width=949&format=png&auto=webp&s=5693537155ca8d22fb1c484a406582dab1e62c8b

https://preview.redd.it/vfwmzqg56rsh1.png?width=991&format=png&auto=webp&s=37c8276a6eca4c5389170d900cc4d206d1dc181a

I was very surprised when I saw I had C. difficile toxins. I don't think this can cause chronic GI problems. I have sooooo many GI issues which are my worse CIRS symptoms.

Nasal swab results came back and was positive for Marcons but also found very large quantity of klebsiella aerogenes. Anyone with similar results? I read klebsiella is one of the main pathogens associated with MCAS which makes sense because I have MCAS like reactions

Symptoms include: GI pain, food intolerance, MCAS like reactions with itching rashes and diarrhea, acid reflux, constipation and nausea.

At what point in the treatment can I start VIP? I just started seeing a functional doctor and he said that my body and especially GI system are waayyyy to sensitive to start detox with binders right now. For this reason, he wants to try repairing my gut first. So far he's only changed my diet and told me to drink an aloe beverage. However, I couldn't drink the aloe beverage because I felt like it was making my GI worse. My MSH is undetectable and my GI does not work. I have continuous pain and food reactions that are so violent and painful I cry for hours. Furthermore I alternate constipation and diarrhea and I have so much bile reflux that burns my esophagus. They tried different things including MCAS treatment but I feel like until my MSH levels improve, my gut will stay the same. I heard so many people having good experiences with VIP and I'm not sure when/if my doctor will prescribe it but I really want to see if it makes a difference. Now I am starting KPV oral capsules to see if they can help fixing my gut. It's been years and nothing has helped at all with my GI symptoms.... the other symptoms are also very bad and annoying but the GI is what's driving me crazy. I have dreams about eating pizza, ice cream and fast food but Idk if that day will ever come.

I was recommended to drink 4-6 ounces of George's aloe beverage 100% distilled with nothing added by my functional doctor. I started drinking it last night and drank some at dinner time and some before bed time. Woke up this morning in a horrible GI flare and feeling itchy. My abdomen hurts so much and can't really eat anything without pain and running to the bathroom. Can the aloe fluid cause this?? I thought it should be 100% safe. Please help. I thought it would have calmed my GI but seemed to have done the opposite. I also have had a headache for the whole day

My gut is extremely messed up and I have undetectable MSH and Tgfb1 higher then 5000. I have abdominal pain and cramps all day long as well as itching and food intolerance. My functional doctor has recommended taking KPV and BPC peptides. Does anyone have any experience with peptides? Do they help? They’re expensive and I’m trying to understand if they can be effective for my condition.

https://preview.redd.it/cb6zqwwqeggh1.png?width=922&format=png&auto=webp&s=f0948dbb3795a0d98e2075722b15e4b8351d0b27

https://preview.redd.it/jr3jurhseggh1.png?width=949&format=png&auto=webp&s=4ebed7033acf0e0bcbfa1c6abb9762cb543d207c

TGF-b1 5026pg/mL, MSH undetectable <8. My symptoms include: Fatigue, malaise, nasal congestion, sore throat, shivering and constant "flu like" feeling. Low blood pressure and fainting, interstitial cystitis and pelvic pain. Chronic headaches and constant GI issues with food sensitivities and reactions and food intolerance. Also have MCAS reactions with diarrhea rashes and itching. Temperature dysregulation and constantly feeling cold. Quality of life is almost at 0 right now.

Does anyone here have absolutely horrible GI symptoms? I just got tested for CIRS and I’m waiting for my test results. I have many systemic symptoms but for me the most debilitating are by far the GI. I have constant pain that literally NEVER goes away and I feel constantly like I’m about to have another reaction. I only eat few foods and if I try to eat normally I have reactions with diarrhea and unbearable abdominal cramps. I also get nauseous start shivering and feel faint. It is absolutely horrible. The pain never fully goes away and I keep having cramps and discomfort all day. This is worse in the morning and if I try eating anything before 12pm I feel like I will DIE. i get diarrhea and really bad cramps. Before getting on Pepcid and antihistamines I also used to have skin reactions and rashes whenever I got diarrhea and itching/swelling in my whole body. Got tested for MCAS and histamine intolerance/DAO and they looked for mediators in both my blood and urine but they were normal besides elevated prostaglandins in urine just once. They told me it wasn’t MCAS. I can’t live with this abdominal pain anymore, it’s been going on for years and in the last 2 years it is so bad I can’t do anything or eat anything without pain. Even water is bad sometimes. Thinking about doing a GI MAP. Tried aloe juice for leaky gut and also tried eating baby food to give my GI some rest but got sick right after both of these things. EVERYTHING makes me sick

Hi! I’m a 24 female who has been experiencing a broad range of unexplained health issues and symptoms for years. Some of these are chronic and very severe GI issues and food intolerance with inability to eat normally, extreme fatigue, shortness of breath, headaches, and feeling faint and dizzy. The worst part of all this is the chronic abdominal pain and episodes of horrible abdominal cramps. I wake up every morning with so much general abdominal pain and if I try to eat breakfast I immediately get sick and the pain becomes unbearable. I can usually tolerate food better later in the day. They have never found the cause of my symptoms despite numerous GI tests and imaging. I have talked to my physician about LDN since I was desperately trying to find something that would give me at least some relief from this horrible abdominal pain and potentially allow me to eat more normally. My GI agreed to prescribe LDN but told me he had absolutely ZERO experience with it. He prescribed it at 1.5mg and told me to increase the dose by 1mg every two weeks. I started taking it about two weeks ago and yesterday night I increased the dose for the first time. Today my symptoms got worse and in addition to the abdominal pain I was also feeling extremely dizzy and nauseous, I felt faint and miserable the whole day and wasn’t able to go to work. I’m still feeling like crap and was considering going to the ER this morning for how bad I was feeling.

Is the probably due to the higher dose? Is going from 1.5 to 2.5 mg a big increase after 2 weeks? Can LDN help relieving my abdominal pain and maybe allow me to eat breakfast and a less restrictive diet? I haven’t noticed any improvements in these two weeks but I read that for some people it works right away! Does that mean it’s not the right treatment for me? My doctor sucks and cannot help me at all. Please let me know!

I eat sweet potatoes every single day and it’s one of my “safe foods”. Never made things worse. Today I got a snack made of ONLY dried sweet potatoes. Nothing else. No additives or preservatives or anything. As soon as I put one in my mouth abdominal cramping started followed by rushing to the bathroom. Is it because they were in a different form? Literally crying

Does anyone else feel pain during reactions that is so intense in the abdomen they think they will pass out? Whenever I have a food reactions my bowel contracts so hard it literally feels like someone is stabbing me. The pain and sickness it is so unbearable it’s hard to put into words. I then get diarrhea and the reactions will last from 2-4
hours of pain and suffering in the bathroom. When I don’t have diarrhea I’m constipated. I am also SO SICK of having abdominal pain. It is basically constant and I have this “raw” sensation in my whole abdomen and feel like anything, literally ANYTHING, could make it worse and cause a reaction. It is constant. I constantly feel like I’m about to get sick. Also, the GI symptoms are SO MUCH worse in the morning. Even drinking water hurts and triggers cramps until 1pm. If I tolerate lunch with my safe foods, it seems to get better in the afternoon. Why is that? I’ve been trying to figure out why it is SO BAD in the morning and do something to prevent it but it’s impossible. I go to bed knowing I’ll wake up and be in so much pain and will have to fight against my body the whole
morning. My dream is to wake up and be able to eat something for breakfast

I was diagnosed with IBS and possible MCAS although all the blood/urine test for MCAS was negative. They ruled out all IBD and other conditions (crohn's, ulcerative colitis...). I have continuous abdominal pain every single day and bowel cramps. I also have horrible reactions to anything that stimulates my gut (exercise, temperature and ofc foods) I can only eat very plain homemade foods and even then I have to be careful and have had reactions to those too. I also experience the following symptoms that seem to be strictly connected to my abdominal pain:

-Vaginal burning and pelvic cramps... especially when constipated and also feeling of fullness in rectum

-Shivering, sweating

-Period like cramps

-Symptoms that are MUCH WORSE in the morning and complete food intolerance until 1pm

-Feeling faint and like pain is absolutely unbearable

-Feeling so sleepy like you actually cannot stay awake when not feeling well

-Feeling like you have the flu... congested and keep sneezing and general malaise.

They haven't found me any autoimmune disease and nothing else wrong... What could be some causes...? it doesn't feel like IBS alone?

Duodenum: up to 50

Stomach: up to 35

Terminal Ileum: up to 50

Random colon: up to 30 They said these numbers are elevated but not diagnostic. Have some symptoms of MCAS and SO MANY GI issues and reactions. Blood/urine test for MCAS was always normal.

Hi everyone!!

I've been in a continuous flare for quite some time now and I'm pretty desperate. Some doctors have diagnosed me with MCAS... others don't think I have it. I keep feeling HORRIBLE and nobody can figure it out. My worst symptoms are gastrointestinal and they seem to have started about 6 years ago with a random allergic like reaction right after waking up in the morning (didn't even eat anything) but started having diarrhea and abdominal pain with itching and rashes/swollen everywhere. Since then I kept having these random reactions once every few months and after a while I also started having chronic GI issues and abdominal pain every day. Two years ago is when things really started becoming horrible. All my symptoms became 100 times worse and I started having new symptoms such as pelvic pain and burning, fainting, uterine cramps and constipation alternating with diarrhea. I started to not tolerate most foods especially more complex meals or take out/restaurant foods. They had me checked for endometriosis as well but didn't see anything from the ultrasounds (need laparoscopy to rule it out which I don't wanna do). They changed my birth control and put me on norethindrone to cure possible endometriosis but it made my symptoms EVEN WORSE. I have headaches every day and feel so sick in the morning that I can't get off the couch plus my GI symptoms are also worse. I want to switch to my old birth control.

I also wanted to discuss a few episodes I recently had. One was during a day when I was having an enterography to rule out Crohn's, ulcerative colitis and IBD. They gave me some fluids to drink and I had an IV through which they gave me contrast fluid and other medications. I felt fine after the procedure but when i went home and took a bite of toast I had the most horrible reaction. Crazy abdominal cramps and spasms and diarrhea. Feeling absolutely miserable. The same happened this week after I had a gastroscopy... I was feeling okay after the anesthesia but the day after when I woke up I had a similar episode to the one I had when I did the enterography. It seems like my GI system has gone crazy and reacts to everything but after years of testing... still can't find the cause. When I had the GI reaction this week I also went to get a blood test to measure my tryptase and it was normal. Since I'm on daily high doses of anthistamines I also don't get the rashes and itching.... Just GI symptoms during these episodes. All the MCAS blood work I've done (prostaglandins, leukotriene and histamine 24 hrs urine and blood IgE) were negative/low besides one time that my prostaglandin were elevated on a random urine test (not 24 hrs). They also found elevated mast cells in my GI tract from endoscopy but they are not diagnostic.....what's causing all this??:/

Hi!! I just saw my immunologist today and she wants me to try taking higher doses of anti-histamines. I am currently taking 1 in the morning and 1 at night and I alternate between allegra, xyzal, robilas, and zyrtec every 2-3 months. Right now I was taking allegra in the morning and xyzal at night. However my immunologist has suggested I take zyrtec 4 times a day (2 pills in the morning and 2 at night). I was also supposed to start LDN very soon but she wants me to try with higher zyrtec doses first. My gastroenterologist wants me to try LDN and Ketotifene instead but she thinks before trying those it's best to take higher doses of anti-histamines and see what happens. I'm also doing a gastroscopy next week to check for eosinophilic GI disease. I had already done a gastroscopy and coloscopy last year but they only look at mast cells and found them elevated. My symptoms have been horrible lately and I am in a constant flare. I have shivering and chills all day long and keep sneezing like I have the flu. I also have horrible cramps and abdominal pain as well as pelvic burning and pain.... Does anyone have any feedback? Should I go with the higher zyrtec dose and see what happens...?? Does anyone also have eosinophilic disease?

Main symptoms:

• Daily abdominal cramping/pain
• Episodic catastrophic GI attacks, extremely painful
• Severe diarrhea during attacks
• Feeling suddenly “poisoned” or extremely ill
• Flushing/rashes/itching SOMETIMES during attacks but skin symptoms are not always there
• Feeling unstable/shaky during episodes
• Congestion/sneezing/sore throat/flu-like symptoms that are chronic
• Extreme food fear/hyperreactivity now after years of this

The attacks are DIFFERENT from my baseline daily GI pain.

Baseline:
I wake up most mornings with abdominal cramping/bowel discomfort and some mornings I cannot leave the house. I used to have chronic diarrhea but now I'm mostly constipated due to the medications I'm taking.

The attacks:
Sometimes after eating or randomly during the day I suddenly develop:

• severe intestinal cramping
• explosive diarrhea
• sweating/chills
• flushing or itching sometimes with skin rash
• feeling extremely toxic/poisoned
• weakness
• autonomic instability feeling
• whole body feels extremely ill

Sometimes I feel like my entire GI tract suddenly “flips.”

Triggers seem inconsistent BUT more likely with:

• restaurant meals
• fatty/heavy meals
• eating quickly
• stress
• emotional upset
• exercise
• heat
• large mixed meals

I can sometimes tolerate foods one day and react another day.

Weird part:
The reactions are NOT always classic allergy reactions. Sometimes it’s mostly GI. Sometimes I get itching/rashes/flushing too. Allergy testing has mostly been negative and the reactions sometimes happen hours after eating, sometimes immediately and sometimes without eating nothing at all. These very bad episodes don't happen often, only once every few months but the chronic symptoms happen every single day and make it very hard to live a normal life

Things that have been considered:

• MCAS
• All kinds of GI conditions (Crohn's disease, ulcerative colitis, microscopic colitis, IBS..) but ruled out because tests and imaging normal
• Allergies also ruled out

My doctor recently suggested adult FPIES as a possibility after they ruled out MCAS since I wasn't responding to treatments and didn't meet diagnostic criteria. I have tried sodium cromolyn but it did NOTHING. I am currently taking: Allegra and Pepcid daily twice a day, amitriptyline for GI pain (made me extremely constipated) and they had tried giving me norethindrone because they were suspecting endometriosis but nothing changed (I don't think it's endo)

Some findings/tests:

• Elevated prostaglandin D2 at one point
• GI mast cells somewhat elevated from endoscopy and colonoscopy
• Histamine mostly normal
• Tryptase normal
• Leukotrienes normal
• 24h urine histamine normal
• Extensive allergy testing mostly negative
• Stool calprotectin normal (one time very elevated, twice normal)
• ESR/CRP normal
• Colonoscopy/endoscopy mostly unrevealing
• Pelvic ultrasound normal
• Immunology workup mostly normal, no autoimmunity
• No clear inflammatory bowel disease
• No carcinoid findings
• IgE low/normal
• No H pylori or C difficile

Things that DID NOT help much:

• H1/H2 blockers
• Cromolyn
• Steroids
• Low FODMAP
• Amitriptyline (caused severe constipation)

Rifaximin maybe helped somewhat in the past (but did not solve the issue)

The confusing part:
My symptoms are VERY linked to stress/emotions/autonomic states. Heat, rushing, exercise, eating quickly, and emotional overload can all worsen symptoms dramatically. Symptoms are also worse in the morning and I'm not able to tolerate food or drinks up until 1/2 pm. I'm also losing weight.

I’m starting to wonder if repeated severe GI immune reactions somehow caused chronic autonomic/enteric nervous system hypersensitization over time.

Has anyone had anything similar?
Especially:

• adult FPIES
• non-IgE food reactions
• neuroimmune GI disorders (IBS?)
• autonomic GI attacks
• mast-cell overlap
• visceral hypersensitivity
• dysautonomia with severe GI symptoms

Any suggestions or advice would be GREATLY appreciated. I'm a PhD student and have been doing so much research on this as well but there are so many theories and possible therapies that it's hard to understand what could possibly improve my symptoms.

Main symptoms:

• Daily abdominal cramping/pain
• Episodic catastrophic GI attacks, extremely painful
• Severe diarrhea during attacks
• Feeling suddenly “poisoned” or extremely ill
• Flushing/rashes/itching SOMETIMES during attacks
• Pelvic/vaginal/rectal burning and cramps
• Feeling unstable/shaky during episodes
• Congestion/sneezing/sore throat/flu-like symptoms that are chronic
• Extreme food fear/hyperreactivity now after years of this

The attacks are DIFFERENT from my baseline daily GI pain.

Baseline:
I wake up most mornings with abdominal cramping/bowel discomfort and some mornings I cannot leave the house. I used to have chronic diarrhea but now I'm mostly constipated due to the medications I'm taking.

The attacks:
Sometimes after eating or randomly during the day I suddenly develop:

• severe intestinal cramping
• explosive diarrhea
• sweating/chills
• flushing or itching sometimes
• feeling extremely toxic/poisoned
• weakness
• autonomic instability feeling
• whole body feels extremely ill

Sometimes I feel like my entire GI tract suddenly “flips.”

Triggers seem inconsistent BUT more likely with:

• restaurant meals
• fatty/heavy meals
• eating quickly
• stress
• emotional upset
• exercise
• heat
• large mixed meals

I can sometimes tolerate foods one day and react another day.

Weird part:
The reactions are NOT always classic allergy reactions. Sometimes it’s mostly GI. Sometimes I get itching/rashes/flushing too. Allergy testing has mostly been negative.

Things that have been considered:

• MCAS
• All kinds of GI conditions (Crohn's disease, ulcerative colitis, microscopic colitis, IBS..) but ruled out because tests and imaging normal
• Allergies

My doctor recently suggested adult FPIES as a possibility after they ruled out MCAS since I wasn't responding to treatments and didn't meet diagnostic criteria. I have tried sodium cromolyn but it did NOTHING. I am currently taking: Allegra and Pepcid daily twice a day, amitriptyline for GI pain (made me extremely constipated) and they had tried giving me norethindrone because they were suspecting endometriosis but nothing changed (I don't think it's endo)

Some findings/tests:

• Elevated prostaglandin D2 at one point
• GI mast cells somewhat elevated
• Histamine mostly normal
• Tryptase normal
• Leukotrienes normal
• 24h urine histamine normal
• Extensive allergy testing mostly negative
• Stool calprotectin normal (one time very elevated, twice normal)
• ESR/CRP normal
• Colonoscopy/endoscopy mostly unrevealing
• Pelvic ultrasound normal
• Immunology workup mostly normal
• No clear inflammatory bowel disease
• No carcinoid findings
• IgE low/normal

Things that DID NOT help much:

• H1/H2 blockers
• Cromolyn
• Steroids
• Low FODMAP
• Amitriptyline (caused severe constipation)

Rifaximin maybe helped somewhat in the past.

The confusing part:
My symptoms are VERY linked to stress/emotions/autonomic states. Heat, rushing, exercise, eating quickly, and emotional overload can all worsen symptoms dramatically.

I’m starting to wonder if repeated severe GI immune reactions somehow caused chronic autonomic/enteric nervous system hypersensitization over time.

Has anyone had anything similar?
Especially:

• adult FPIES
• non-IgE food reactions
• neuroimmune GI disorders
• autonomic GI attacks
• mast-cell overlap
• visceral hypersensitivity
• dysautonomia with severe GI symptoms

Would really appreciate hearing from anyone with similar experiences because this has become debilitating and extremely isolating.

Main symptoms:

• Daily abdominal cramping/pain
• Episodic catastrophic GI attacks, extremely painful
• Severe diarrhea during attacks
• Feeling suddenly “poisoned” or extremely ill
• Flushing/rashes/itching SOMETIMES during attacks
• Pelvic/vaginal/rectal burning and cramps
• Feeling unstable/shaky during episodes
• Congestion/sneezing/sore throat/flu-like symptoms that are chronic
• Extreme food fear/hyperreactivity now after years of this

The attacks are DIFFERENT from my baseline daily GI pain.

Baseline:
I wake up most mornings with abdominal cramping/bowel discomfort and some mornings I cannot leave the house. I used to have chronic diarrhea but now I'm mostly constipated due to the medications I'm taking.

The attacks:
Sometimes after eating or randomly during the day I suddenly develop:

• severe intestinal cramping
• explosive diarrhea
• sweating/chills
• flushing or itching sometimes
• feeling extremely toxic/poisoned
• weakness
• autonomic instability feeling
• whole body feels extremely ill

Sometimes I feel like my entire GI tract suddenly “flips.”

Triggers seem inconsistent BUT more likely with:

• restaurant meals
• fatty/heavy meals
• eating quickly
• stress
• emotional upset
• exercise
• heat
• large mixed meals

I can sometimes tolerate foods one day and react another day.

Weird part:
The reactions are NOT always classic allergy reactions. Sometimes it’s mostly GI. Sometimes I get itching/rashes/flushing too. Allergy testing has mostly been negative.

Things that have been considered:

• MCAS
• All kinds of GI conditions (Crohn's disease, ulcerative colitis, microscopic colitis, IBS..) but ruled out because tests and imaging normal
• Allergies

My doctor recently suggested adult FPIES as a possibility after they ruled out MCAS since I wasn't responding to treatments and didn't meet diagnostic criteria. I have tried sodium cromolyn but it did NOTHING. I am currently taking: Allegra and Pepcid daily twice a day, amitriptyline for GI pain (made me extremely constipated) and they had tried giving me norethindrone because they were suspecting endometriosis but nothing changed (I don't think it's endo)

Some findings/tests:

• Elevated prostaglandin D2 at one point
• GI mast cells somewhat elevated
• Histamine mostly normal
• Tryptase normal
• Leukotrienes normal
• 24h urine histamine normal
• Extensive allergy testing mostly negative
• Stool calprotectin normal (one time very elevated, twice normal)
• ESR/CRP normal
• Colonoscopy/endoscopy mostly unrevealing
• Pelvic ultrasound normal
• Immunology workup mostly normal
• No clear inflammatory bowel disease
• No carcinoid findings
• IgE low/normal

Things that DID NOT help much:

• H1/H2 blockers
• Cromolyn
• Steroids
• Low FODMAP
• Amitriptyline (caused severe constipation)

Rifaximin maybe helped somewhat in the past.

The confusing part:
My symptoms are VERY linked to stress/emotions/autonomic states. Heat, rushing, exercise, eating quickly, and emotional overload can all worsen symptoms dramatically.

I’m starting to wonder if repeated severe GI immune reactions somehow caused chronic autonomic/enteric nervous system hypersensitization over time.

Has anyone had anything similar?
Especially:

• adult FPIES
• non-IgE food reactions
• neuroimmune GI disorders
• autonomic GI attacks
• mast-cell overlap
• visceral hypersensitivity
• dysautonomia with severe GI symptoms

Would really appreciate hearing from anyone with similar experiences because this has become debilitating and extremely isolating.

Main symptoms:

• Daily abdominal cramping/pain
• Episodic catastrophic GI attacks, extremely painful
• Severe diarrhea during attacks
• Feeling suddenly “poisoned” or extremely ill
• Flushing/rashes/itching SOMETIMES during attacks
• Pelvic/vaginal/rectal burning and cramps
• Feeling unstable/shaky during episodes
• Congestion/sneezing/sore throat/flu-like symptoms that are chronic
• Extreme food fear/hyperreactivity now after years of this

The attacks are DIFFERENT from my baseline daily GI pain.

Baseline:
I wake up most mornings with abdominal cramping/bowel discomfort and some mornings I cannot leave the house. I used to have chronic diarrhea but now I'm mostly constipated due to the medications I'm taking.

The attacks:
Sometimes after eating or randomly during the day I suddenly develop:

• severe intestinal cramping
• explosive diarrhea
• sweating/chills
• flushing or itching sometimes
• feeling extremely toxic/poisoned
• weakness
• autonomic instability feeling
• whole body feels extremely ill

Sometimes I feel like my entire GI tract suddenly “flips.”

Triggers seem inconsistent BUT more likely with:

• restaurant meals
• fatty/heavy meals
• eating quickly
• stress
• emotional upset
• exercise
• heat
• large mixed meals

I can sometimes tolerate foods one day and react another day.

Weird part:
The reactions are NOT always classic allergy reactions. Sometimes it’s mostly GI. Sometimes I get itching/rashes/flushing too. Allergy testing has mostly been negative.

Things that have been considered:

• MCAS
• All kinds of GI conditions (Crohn's disease, ulcerative colitis, microscopic colitis, IBS..) but ruled out because tests and imaging normal
• Allergies

My doctor recently suggested adult FPIES as a possibility after they ruled out MCAS since I wasn't responding to treatments and didn't meet diagnostic criteria. I have tried sodium cromolyn but it did NOTHING. I am currently taking: Allegra and Pepcid daily twice a day, amitriptyline for GI pain (made me extremely constipated) and they had tried giving me norethindrone because they were suspecting endometriosis but nothing changed (I don't think it's endo)

Some findings/tests:

• Elevated prostaglandin D2 at one point
• GI mast cells somewhat elevated
• Histamine mostly normal
• Tryptase normal
• Leukotrienes normal
• 24h urine histamine normal
• Extensive allergy testing mostly negative
• Stool calprotectin normal (one time very elevated, twice normal)
• ESR/CRP normal
• Colonoscopy/endoscopy mostly unrevealing
• Pelvic ultrasound normal
• Immunology workup mostly normal
• No clear inflammatory bowel disease
• No carcinoid findings
• IgE low/normal

Things that DID NOT help much:

• H1/H2 blockers
• Cromolyn
• Steroids
• Low FODMAP
• Amitriptyline (caused severe constipation)

Rifaximin maybe helped somewhat in the past.

The confusing part:
My symptoms are VERY linked to stress/emotions/autonomic states. Heat, rushing, exercise, eating quickly, and emotional overload can all worsen symptoms dramatically.

I’m starting to wonder if repeated severe GI immune reactions somehow caused chronic autonomic/enteric nervous system hypersensitization over time.

Has anyone had anything similar?
Especially:

• adult FPIES
• non-IgE food reactions
• neuroimmune GI disorders
• autonomic GI attacks
• mast-cell overlap
• visceral hypersensitivity
• dysautonomia with severe GI symptoms

Would really appreciate hearing from anyone with similar experiences because this has become debilitating and extremely isolating.