u/Relevant_Orange3313

Hi there!

I’m extremely sensitive and after being hospitalized for 30 days on extremely strong IV antibtiocs my gut health is absolutely wrecked.

I’ve had previous rounds with IV antibtiocs, multiple Covid infections, mold, Migraine-severe neurological problems my dietary has come to an even smaller window of what I’m able to tolerate.

I know replenishing and rebuilding the gut is one of goals but right now I need calories and protein.

What DAO brands were you able to tolerate in your most sensitive periods (people that were down to a 2 or 3 foods)

Are there any protein powders, Nutrtional formulas powdered or diy that allowed you to get in a little more calories and protein

I’m down to 500 calories and 10-15g of protein on a good day and it’s absolutely not sustainable. Please do not suggest returning to the hospital, GI or PCP. I’m currently awaiting a gastric emptying test but in the mean time I’m desperate for nutrition. Dairy Allergy, Celiac, Pea/Legume Allergy, Rice reactions systemic, Soy Allergy. Rashes, migraines, intestinal N/V to monk fruit, artificial sweetener, seed oils

I’ve spent the last 5 years going to many different specialists and found little to no help.

I’m unable to tolerate Quercetin, LDN, and can’t take Ketotifen due to Seizures.

Hi All!

I’m getting the run around from doctors that my TSH is fine and not to do expansive testing. I’m not in an area to order my own testing.

Please recommend if you like your provider and they are able to order testing and prescribe

Unfortunately, I’ve been quite ill for over a year but to my nutritionist surprise I was t loosing a lot of weight. I want to make sure my GI problems and malnutrition aren’t negatively affecting my thyroid.

Hello,

Has anyone else noticed since getting MCAS their sweat odor has changed?

Even if I’m not experiencing stress my sweat immediately after the shower smells like skunk or weed. It’s absolutely awful and embarrassing

No shower products have changed, no ingredients changes, I don’t wear deodorant half of the week to allow them to breathe.

No fragrances, scented and only breathable materials.

I’m not sure my original start of MCAS but I had multiple rounds of covid, IV antibiotics and gut issues that have made it extreme.

Hello everyone,

Where did you order your OAT test from?

Did you doctor prefer one company over another?

How long did you results take?

I’m still on the process of finding a new functional med. My last one wanted to do strictly herbal and a lot of oregano oil which I react horribly too.

I have severe histamine intolerance and MCAS so finding someone has been tricky. If you have any recommendations feel free to leave those as well

Looking for a doctor that is understanding and has a good approach. I’ve been in horrible shape and down to 3 foods I can tolerate and getting worse

Bonus for understanding complex cases with histamine intolerance and MCAS

If you can recommend a Dietatician that would be great as well

Looking for someone that can order lab work and prescribe if necessary

I’m currently on a very strict low histamine diet and I’m trying to complete urine testing for mast cell / histamine-related markers (like N-methylhistamine, LTE4, prostaglandins, etc.).

I’m getting a lot of gas lighting and my doctor finally reluctantly ordered testing but said he’s sure it’s negative so I’m concerned about a false negative

My question is: for those of you who’ve done this while already on a very restricted diet, did your doctors ask you to intentionally “trigger” symptoms beforehand by eating high histamine foods or otherwise provoking a flare?

If yes, what did that look like in practice (how long before the urine collection, what kind of trigger, how severe did the reaction need to be, etc.)?

If no, did you still get meaningful results while staying on a stable low-histamine baseline?

I’m trying to understand whether being “too stable” on a low histamine diet can actually lead to false negatives. I know I should find a better doctor but it’s so hard to find one that doesn’t rely strictly on testing

I’m currently on a very strict low histamine diet and I’m trying to complete urine testing for mast cell / histamine-related markers (like N-methylhistamine, LTE4, prostaglandins, etc.).

I’m getting a lot of gas lighting and my doctor finally reluctantly ordered testing but said he’s sure it’s negative so I’m concerned about a false negative

My question is: for those of you who’ve done this while already on a very restricted diet, did your doctors ask you to intentionally “trigger” symptoms beforehand by eating high histamine foods or otherwise provoking a flare?

If yes, what did that look like in practice (how long before the urine collection, what kind of trigger, how severe did the reaction need to be, etc.)?

If no, did you still get meaningful results while staying on a stable low-histamine baseline?

I’m trying to understand whether being “too stable” on a low histamine diet can actually lead to false negatives. I know I should find a better doctor but it’s so hard to find one that doesn’t rely strictly on testing

Hi all!

I have pretty extreme motility and constipation problems. I’ve not had good luck with GI doctors taking my concerns seriously.

I have a very restricted diet due to histamine intolerance, MCAS that leaves me from being able to eat all foods that help promote bowel movements and need to follow a low histamine, low tyramine diet. I’ve noticed that gut health and microbiome diversity is key to healing this but so is having regular bowel movements.

I can not take mag citrate as that is high histamine as well.

What other laxative options don’t upset gut microbiome and what laxatives are most disruptive to gut microbiome? please feel free to include medications otc and rx

Hello everyone,

TLDR: I’m functionally declining from malnutrition but can’t get any help due to higher weight. I’ve been bed bound due to how severe it is but can’t get a doctor to take me seriously despite family coming to help me advocate

I’m not sure where to go for help. I am awaiting a second opinion for GI.

I’ve been dealing with gastroperisis like symptoms for quite awhile now that have gotten dramatically worse with the less I eat. I also had severe motility problems that have gotten severe from eating less and less.

I saw GI who immediately chalked it up to stress and anxiety. I had to push very hard for basic tests like xray, blood work, ultra sound. All those were normal so they wouldn’t go further. I’m still not getting enough of my caloric and protein needs and have severe food allergies that my doctor misdiagnosed as “preferences” or ARFID because they couldn’t find a medical reason why I avoid them.

All this said my weight is actually over weight despite eating less than what I need and having severe physical symptoms from malnutrition.

I’ve brought this to my PCP attention multiple times and they said that I shouldn’t be concerned and need to just destress and relax. They have “no proof” that I’m eating as little as I am because I would’ve lost weight according them

I saw a Dietatician and I only drink water so I know my caloric intake is accurate.

Some days my gastroperisis like symptoms aren’t as bad and I’m able to eat a little bit more but then I get a severe headache, nausea, vomiting and feel horrible. I’m doing my best but functionally am struggling to do basic life tasks to take care of myself with little food intake. Some days it’s a bit easier. I don’t know how to get help because I’ve asked GI several times, brought family to all my appointments, PCP, Dietatician and no one’s listening all while my functional decline is getting pretty extreme.

Any suggestions for anyone that’s been overweight on how to get help or someone that’s not typical due to undiagnosed GI issues that they refuse to investigate because you have anxiety and they just say it’s “ibs” but it’s causing severe not eating

Hello everyone,

I’m not sure where to go for help. I am awaiting a second opinion for GI.

I’ve been dealing with gastroperisis like symptoms for quite awhile now that have gotten dramatically worse with the less I eat. I also had severe motility problems that have gotten severe from eating less and less.

I saw GI who immediately chalked it up to stress and anxiety. I had to push very hard for basic tests like xray, blood work, ultra sound. All those were normal so they wouldn’t go further. I’m still only able to get 20 grams of protein a day and have severe food allergies that my doctor misdiagnosed as “preferences” or ARFID because they couldn’t find a medical reason why I avoid them.

All this said my weight is actually over weight despite eating less than half what I need and having severe physical symptoms from malnutrition.

I’ve brought this to my PCP attention multiple times and they said that I shouldn’t be concerned and need to just destress. They have no proof that I’m eating less than 1000 as little as I am because if I were then I would’ve lost a lot of weight.

I saw a Dietatician and I only drink water so I know my caloric intake is accurate.

Some days my gastroperisis like symptoms aren’t as bad and I’m able to eat a little bit more but then I get a severe headache, nausea, vomiting and feel horrible. Am I at risk for refeeding if I’m overweight

I’m dealing with severe nutritional concerns from severe early satiety, pain, GI motility and it’s affected my Nutrtion greatly. I’m also dealing with some mystery food allergies to almost everything in the past couple of years that keeps growing.

I am only able to get 20g of protein a day and very little calories. Along with little to no fruits and vegetables. My weight has stayed fairly stable because this has made me bed bound.

I’ve been endlessly advocating for my Self with my PCP, GI and they sent me to Nutrtion who just said it was ARFID because she couldn’t find a medical explanation for why I can’t tolerate more things.

I’m on the waitlist for a different GI but that’s 9 months out and in the mean time I get painfully full after 2 scrambled eggs. My GI has written me off as a psychological problem and won’t help me or do any further diagnostics. I suspect I’m in a negative feedback loop of eating so little has made all these issues worse.

There was one doctor I saw when I was younger who also worked with Eating Disorder patients and understands the complexities of how malnutrition is not just numbers on a scale. I desperately want help so I can stop having severe physical symptoms from not eating enough.

Is it inappropriate to email her and ask for a recommendation for someone that might be able to assist me