u/LukeTheDude93

Hey,

Im dealing with chronic constipation since I got COVID in 2020 and over the years the constipation got worse and also my microbiome changed I got Sibo and Disbiosis and a severe histamine intolerance or MCAS.

**is it possible that mast cells can cause constipation?**

one of my main symptom from mcas is andrenaline dumps with getting extremely stressed wich leads to insomnia this also started after COVID but back then I thought it was the COVID itself nowaday I know that the triggers are food specifically almost all of them by now cause these reactions after eating. It got so much worse I can only tolerate five different ones anymore.

anyone with similar experiences or the knowledge that someone suffers from constipation due to MCAS?

Hey,

Im dealing with chronic constipation since I got COVID in 2020 and over the years the constipation got worse and also my microbiome changed I got Sibo and Disbiosis and a severe histamine intolerance or MCAS.

is it possible that mast cells can cause constipation?

one of my main symptom from mcas is andrenaline dumps with getting extremely stressed wich leads to insomnia this also started after COVID but back then I thought it was the COVID itself nowaday I know that the triggers are food specifically almost all of them by now cause these reactions after eating. It got so much worse I can only tolerate five different ones anymore.

anyone with similar experiences or the knowledge that someone suffers from constipation due to MCAS?

Hi,

my doctor prescribed me 300mg pills Gabapentin for nerve pain and yesterday I only took a half one so round about 150mg and it made me drowsy and chilled but I couldnt sleep at all, its so weird!

today Im so exhausted because of the lack of sleep and I dont know if I should take more or stop it. will this disappear with continued intake, or probably not?

Thanks for any advice or help.

Hey everyone,

I’m in a very difficult spot and hope someone here has experienced something similar or has some insight. I got floxed 4 years ago and my gut almost stopped working now Im dealing with gastroparesis and severe slow transit constipation, Sibo and extreme MCAS.

I’ve reached a point where I can no longer eat enterally and I dont have any bovel movements anymore.

I am essentially dependent on Prucalopride (Resolor/motegrity) to keep my stomach and gut working so quite literall to stay alive.

The big Problem:

Even though I am otherwise completely free of neuropathy symptoms, Prucalopride triggers intense neuropathy flares (nerve burning and severe pain). its an unbearable pain wich forced me to stop the medication.

The strange thing is that this isn't limited to Prucalopride. I get the exact same reaction from:

Antihistamines: Diphenhydramine (Benadryl), Cetirizine, Rupatadine, etc.

even from LDN (Low Dose Naltrexone)

Once a flare is triggered by these medications, the mcas or histamine reactions after eating even from histamine free food triggers the nerve pain even more. Outside of these medication-induced flares, I don't have neuropathy at all.

My Questions:

1. Has anyone else post-FQ developed neuropathy that is only triggered by medications or MCAS/ histamine and not present otherwise?

2. is there anything wich can help with this FQAD neuropathy except Amitriptylin or Duloxetin because they slow down my gut even more so I cant take them.

I feel trapped between needing these meds for basic survival and the unbearable nerve pain they cause. Im really scared Im 32 and I dont want to die but it feels hopeless and Im so tried and desperate of fighting against this diseases.

Any advice or shared experiences would mean a lot, thank you.

I get so constipated from Ketotifen will this subside or go away ? If so how long will it take ?

​

Hi everyone,

I’m struggling with severe neuropathic pain and looking for some insight. Every time I take certain medications, I get a massive flare ups. things like specific Antihistamines benadryl (Diphenhydramine) or Low Dose Naltrexone (LDN) are the worst and cause week long flare ups make. Right now, I’m in a horrible neuropathy flare caused by Prucalopride. everytime I eat something while the flare up is going on the pain comes back or gets even worse.

Im not Sure If this from MCAS but

It is quite severe (started after antibiotics in 2022). I also deal with extreme food sensitivities I’m down to only 5 safe foods.

My questions for the community:

1. Does anyone else experience *nerve pain/neuropathy as a primary MCAS symptom? and maybe especially triggered by medications or eating?

2. Has *Xolair helped you with this specific type of symptoms/ pain?

I’m desperate to find something that stabilizes my mast cells without setting my nerves on fire. I already tried every H1+H2 Blocker, quercetin, Luteolin and cromolyn+ Ketotifen they helped some but I couldnt tolerate the side effects mostly to bad on my gut (Sibo) so Im looking for Xolair.

Thanks for any experiences you can share!

Hi everyone,

I’m writing this because I feel like I’ve hit a dead end and I’m honestly terrified. I’ve been suffering from chronic constipation without pain (suspected slow transit constipation) for 6 years. For the first 4 years, I managed to keep it under control with high fiber and diet but then everything got way worse after antibiotics and probiotics.

I likely developed SIBO (potentially triggered by probiotics), and I’ve developed severe MCAS/Histamine Intolerance from the antibiotics. I am down to only 5 safe foods so Im earing a 100% clean histamine free and Low fodmap diet ( only cucumbers, Zucchini, carrots, chicken and meat.

because of the SIBO I cannot tolerate any carbs or fiber anymore they cause extreme bloating wich caused abdominal pain.

I’ve lost a massive amount of weight, I’m underweight, suffering from nutrient deficiencies and I’m scared I won't survive this.

***before I got Sibo on top I had some full bms driven by intense anticipation for instance, regarding a planned party with a friend. I told this my doctor and they send me to psychiatrists and psycho therapy (almost 4 years) with zero improvements.Do you have any idea what this might signify?

What I’ve tried and why it failed:

* I had 3 colonoscopies and all showed nothing, MRI and ultrasound showed all good.

*histamine free diet, carnivore diet and keto diet all did nothing

*fibers helped until I got Sibo and now fibers and carbs causes extreme bloating wich leads to abdominal pain.

* Rifaximin didnt help with Sibo

*Prucaloprid (Motegrity): It gives me diarrhea, but it doesn’t come out. It causes unbearable insomnia and intense physical tension (at only 0.25mg)

*Linzess (Linaclotid) & Miralax:

Neither of them worked. I don’t think osmotic medications are enough to move my colon.

*Stimulants: they help but I cannot tolerate Bisacodyl or Sodium Picosulfate due to my mcas and I get muscle cramps.

*Magnesium: No longer helps and triggers my MCAS.

*Probiotics & FMT:

I’ve tried multiple Fecal Microbiota Transplants enemas wich didnt help and various oral probiotics they only made my SIBO and MCAS symptoms worse.

* water enemas:

I had to rely on water enemas for a year until they stopped working. Now I have to use glycerin enemas additionally just to get the poo out and some small relief.

* Mestinon/ Pyrostodigmin also didnt help.

*any idea why am I unable to have a bowel movement, even when I have diarrhea? A defecography showed normal emptying.

I have not yet undergone rectal manometry. Perhaps biofeedback therapy or pelvic floor physiotherapy could help me?

In my country Lubiprostone is not available. I feel like my motility is completely paralyzed, and my nervous system is too reactive to handle standard prokinetics.

I feel so lost and hopeless, Im so scared and desperate I just want to have bms and eat some carbs to stay alive 😭

is there any hope at least ?

Any advice or shared experiences would mean the world to me and I would appreciate very much for any reply or help thank you 🙏

Hi everyone,

I’m writing this because I feel like I’ve hit a dead end and I’m honestly terrified. I’ve been suffering from chronic constipation without pain (suspected slow transit constipation) for 6 years. For the first 4 years, I managed to keep it under control with high fiber and diet but then everything got way worse after antibiotics and probiotics.

I likely developed SIBO (potentially triggered by probiotics), and I’ve developed severe MCAS/Histamine Intolerance from the antibiotics. I am down to only 5 safe foods so Im earing a 100% clean histamine free and Low fodmap diet ( only cucumbers, Zucchini, carrots, chicken and meat.

because of the SIBO I cannot tolerate any carbs or fiber anymore they cause extreme bloating wich caused abdominal pain.

I’ve lost a massive amount of weight, I’m underweight, suffering from nutrient deficiencies and I’m scared I won't survive this.

***before I got Sibo on top I had some full bms driven by intense anticipation for instance, regarding a planned party with a friend. I told this my doctor and they send me to psychiatrists and psycho therapy (almost 4 years) with zero improvements.Do you have any idea what this might signify?

What I’ve tried and why it failed:

* I had 3 colonoscopies and all showed nothing, MRI and ultrasound showed all good.

*histamine free diet, carnivore diet and keto diet all did nothing

*fibers helped until I got Sibo and now fibers and carbs causes extreme bloating wich leads to abdominal pain.

* Rifaximin didnt help with Sibo

*Prucaloprid (Motegrity): It gives me diarrhea, but it doesn’t come out. It causes unbearable insomnia and intense physical tension (at only 0.25mg)

*Linzess (Linaclotid) & Miralax:

Neither of them worked. I don’t think osmotic medications are enough to move my colon.

*Stimulants: they help but I cannot tolerate Bisacodyl or Sodium Picosulfate due to my mcas and I get muscle cramps.

*Magnesium: No longer helps and triggers my MCAS.

*Probiotics & FMT:

I’ve tried multiple Fecal Microbiota Transplants enemas wich didnt help and various oral probiotics they only made my SIBO and MCAS symptoms worse.

* water enemas:

I had to rely on water enemas for a year until they stopped working. Now I have to use glycerin enemas additionally just to get the poo out and some small relief.

* Mestinon/ Pyrostodigmin also didnt help.

*any idea why am I unable to have a bowel movement, even when I have diarrhea? A defecography showed normal emptying.

I have not yet undergone rectal manometry. Perhaps biofeedback therapy or pelvic floor physiotherapy could help me?

In my country Lubiprostone is not available. I feel like my motility is completely paralyzed, and my nervous system is too reactive to handle standard prokinetics.

I feel so lost and hopeless, Im so scared and desperate I just want to have bms and eat some carbs to stay alive 😭

is there any hope at least ?

Any advice or shared experiences would mean the world to me and I would appreciate very much for any reply or help thank you 🙏

Hi everyone,

I’m on day 6 of Rifaximin (550mg 3x/day). My breath test showed 9 ppm Methane.

I developed these severe sibo issues after I took Probiotics they made everything worse and now I can't tolerate any fiber or carbs without painful bloating. I also cannot take prokinetics (Ginger, Artichoke, or Prucaloprid) due to severe histamine/MCAS reactions.

Im on keto diet since 2 years and Im only eating cucumbers, carrots, zucchini and chicken.

Im dealing with severe chronic constipation and bloating. My microbiome analysis also showed significant overgrowth of:

-Haemophilus at 1.46% (Reference: 0.00–0.12%),

-Lachnospiraceae NC2004 group: 17.96% (Ref: 0.02–1.00%)

-Eubacterium ruminantium group: 4.52% (Ref: 0.00–0.13%)

the first 4 days I had some die off with chills, fatigue and my gut felt sligltly better it was more flat than usual.

but since yesterday, the fitht day of Rifaximin Im dealing with:

• Extreme distension: My gut is so bloated and very tense.
• Trapped gas: Nothing is moving but no pain
• no improve in constipation but also no pain

I am at a breaking point and considering stopping. For those who had similar is this at day 6 a sign of the bacteria dying off, or is the Rifaximin just not working for my type of overgrowth? Does it get better after the first week?

I would appreciate so much for any tips, advice or help thank you.

Hey I really need to take resolor/prucaloprid because of severe constipation and sibo but I get really bad mcas reactions from it like insomnia, rashes and also feeling anxious.

I started very slow with only 0,5mg but on the second day it got so much worse that I broke up :(

has anyone successfully introduced the medication gradually?

If you have any tipps or advices for me I would appreciate thank you very much.

I really need to take resolor/prucaloprid because of severe constipation and sibo but I get really bad mcas reactions from it like insomnia, rashes and also feeling anxious.

I started very slow with only 0,5mg but on the second day it got so much worse that I broke up :(

has anyone successfully introduced the medication gradually?

If you have any tipps or advices for me I would appreciate thank you very much.

I really need to take resolor/prucaloprid because of severe constipation and sibo but I get really bad mcas reactions from it like insomnia, rashes and also feeling anxious.

I started very slow with only 0,5mg but on the second day it got so much worse that I broke up :(

has anyone successfully introduced the medication gradually?

If you have any tipps or advices for me I would appreciate thank you very much.