u/Hot-Insurance6272

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.