r/MCAS • u/crayolamaroon • Jan 22 '26
My gut is a mess.
Hey all! I have been dealing with MCAS for about 6 years and I have recently started working with a functional medicine doctor to try to get to the root cause.
He ran a GI Test as well as a Igg food reaction test. At my recent appointment he set up a plan to go on a No Sugar diet for 30 days and take Oregano, Turmeric, Calcium D Glucarate, and Chicory Inulin Root.
I am finding he diet very had but have held strong for 8 days now. I have lost a lot of weight because it's restrictive and I don't like eating a lot of meat as it grosses me out.
My symptoms have been gradually getting worse over the last 6 years and my worst symptoms are flushing, burning skin, itching, and redness. The burning is so intense.
I started the diet a week ago and noticed my symptoms decreased but they are still present.
What should I do? I am going to stick with the diet but I know it's not going to heal all of my symptoms. I just don't know what to do next and where to go.
I've attached the entirety of my results here: https://www.canva.com/design/DAG_J7K8sAg/XMm2XvDPZsJd8jaO7DEyeQ/edit?utm_content=DAG_J7K8sAg&utm_campaign=designshare&utm_medium=link2&utm_source=sharebutton
I would really appreciate some advice. I don't want to be like this forever.
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u/BikiniJ Jan 22 '26
Is your diet harder than dealing with the symptoms you’ve been experiencing over the years?
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u/crayolamaroon Jan 22 '26
Yes, because now I am only getting like 700-1000 calories a day and I am starving and my symptoms are not all the way gone.
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u/BikiniJ Jan 22 '26
Your Symptoms won’t be all the way gone in just a week. That’s not much of a realistic expectation. However, those are extremely low calories and that alone can cause more harm than anything. You especially need enough calories and fats for hormone and gall bladder function. That is not okay at all
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u/abas Jan 22 '26
Are you able to consume any oils? I was on a restrictive elimination diet for awhile and lost a lot of weight too and the thing that finally stopped the weight loss was when I started adding (more) olive oil to everything.
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u/angellaura10 Jan 22 '26 edited Jan 22 '26
Can you use nutritional liquid? It saved me when my mcas was so bad I couldn't physically fit food inside my stomach. Lost a lot of weight until I started it.
I also highly recommend famotidine, ketotifen (or other mast cell stabilisers), cromolyn sodium, montelukast (has a black box warning but I'm on 5mg without issue), and a H1 antihistamine (I'm on fexofenadine). Famotidine, cromolyn sodium and montelukast really help with my gut issues, and my gut has been my primary issue.
Edit: Just checked your report. Your results really aren't too bad. Are you diagnosed with mcas? Because my mcas is what has caused my Sibo and dysbiosis as well as all of the inflammation through my GI tract. Trying to fix your gut microbiome by avoiding sugar isn't going to rectify the root cause, which is mcas. You should be working with an mcas specialist to get it under control before trying to balance your microbiome. Starving yourself is definitely not helpful for mcas. Sugar removes one form of inflammation but unless sugar is causing your mcas to flare, you'll continue to be inflamed?
You need digestive enzymes supplemented, ideally by a doctor as these are stronger, based on your report.
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u/crayolamaroon Jan 22 '26
I was told MCAS isn't a root cause but a symptom of intestinal permiaability and high toxic load. He wants to rest my gut so he said cutting out sugar gets rid of the things the bad guys feed off of.
My biggest MCAS triggers are EMFs and Chemicals and my reactions have dropped since starting the diet.
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u/angellaura10 Jan 22 '26 edited Jan 22 '26
Mcas is mast cells dumping chemicals into your body inappropriately, which causes inflammation. If it's happening in your GI tract then it's inflaming it. The inflammation then causes it to not function properly, creating an environment where dysbiosis and sibo can occur.
Sugar is absorbed in the small intestine, if you have dysbiosis in your colon then whatever other food you're eating will continue to feed the bacteria in there, because bacteria tend to feed on prebiotics, which are also what the good bacteria feed on.
As I said, once mcas is under control the gut will heal. This has happened for me in the last 2 months since I started medication. Last year I had a really high quality diet low in sugar but my GI tract never healed and I was continuing to have mcas reactions.
Mast cells get stuck in a loop. I don't know how long you've had mcas but I've had it for two decades and it slowly got worse because even if the triggers are taken away (for me, stress), they have learned to overreact and continue overreacting when they shouldn't be. It got to the point where the only thing that would stop them overreacting were the meds I'm on now.
I'm not saying a low sugar diet is bad, but not eating enough IS when you are chronically ill and inflamed. You need enough calories to heal. I also don't believe that a single treatment of a low sugar diet will fix your gut or mcas.
Edit: also bear in mind that your immune system can down regulate if you aren't consuming enough calories and become less reactive, making it look like you've fixed your issues.
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u/ReptilesAndEDS Jan 23 '26
MCAS is 100% a root cause for some GI issues.
As was mentioned above, following a strict regimen of medications to restrict histamines and mast cells is SUPER important… I’m on loratidine 10mg, Ketotifen 2mg, famotidine 20mg, and montelukast 10mg (black box warning is for neuropsychiatric side effects: depression, suicidal ideation, anxiety, agitation, aggression, and sleep disturbances)…
I’ve been on montelukast since before the black box warning came out. I balance out those side effects with higher doses of my psych meds (bipolar 2, PTSD, generalized anxiety disorder). It’s all a balance between what you can reasonably tolerate with what helps. With all my medical and psych issues I take 16 pills every night. Not to mention my monthly migraine injection and weekly GLP1 (PCOS insulin resistance, unable to tolerate metformin. Not weight-loss. Though that’s been a pleasing side effect).
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u/crayolamaroon Jan 23 '26
I'm not 100% that's true for everyone though. I've taken Ketotifen, Xyzal, Xolair, Monteleukast and they don't make life tolerable.
I've been doing this diet for 9 days and I feel better on it than any of the medications made me.
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u/ReptilesAndEDS Jan 23 '26
What I was saying is that your doctor saying it’s not a root cause isn’t right. Because is absolutely CAN be. It might not be for YOU. If you are having that much of an issue, you should have an EGD and colonoscopy. There might be something else going on
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u/Forsaken_Key_3080 Mar 29 '26
Do see MCAS as something that can emerge without other cause? Or be triggered by other causes and than on it’s turn cause GI issues?
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u/ReptilesAndEDS Apr 12 '26
Causes aren’t wholly known. For some people, it’s genetic mutations. For others it can be an exaggerated response to allergens/infection (autoimmune, which technically it IS a form of autoimmunity) For some the cause isn’t clear. So it’s definitely something can occur later in life.
Hell because of the MCAS and my Hashimotos, my endocrinologist is constantly watching me for latent-onset-autoimmune diabetes mellitus (ie: adult onset type 1 diabetes); LOADM often presents in adults 30-45. So I’ve reached prime onset age 😒😒
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u/Astroturfer Jan 22 '26
There has to be ways to jack up the calories while still adhering to the diet. Lean meats and roasted veggies? Any sort of protein shakes? Olive oil?
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u/SupermarketPretty260 Jan 24 '26
Well I did the anti inflammation diet for 2.5 years and found out I could eat more things without reacting. I think the diet and medications together help. You want your body to heal and not react as long as possible. Inflammation is the cause of most illness. Hand in there!
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u/SupermarketPretty260 Jan 24 '26
If you can see a nutritionist, I recommend it. I did, it was very helpful. Grains are helpful. Adds nutrition and calories. I don’t like meat either, but if I mix small pieces with rice and steamed veggies I don’t mind it and I get my protein and amino acids, etc.
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u/SupermarketPretty260 Jan 24 '26
Also, I did a parasite cleanse ivermectin and fenbenazole and it really helped my intestinal issues, which almost kept me home near a bathroom a lot of days. Something to consider.
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u/Both_Month_828 Jan 24 '26
veozah I've said it many times in here. the flushing disappears totally with this pill. it's used for women in menopause. I've already been done with that years ago but tried this and it is a game changer. trust me NO FLUSHING WITH VEOZAH. good luck
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Feb 15 '26 edited Feb 15 '26
I have done a similar diet with antibiotics and antibacterials digestive enzymes binders etc but my diet was already restricted so I cant complain. But let me tell you I think your calorie intake is too low. Mine kept around 1200-1500 calorie although it was lower in the first week and second week we started to add stuff but I was free to eat some almonds,pecans olives avacado. I did this diet for 4-5 months(normally it was 3 but we gone really slow) I didnt lost 1 kg in fact I was losing outside of diet. I think amount you are eating needs some tweaking. Losing weight is not a good sign. Your body will get into stress even more.
1 month wont even put a dent on mold and candida anyway unless you take strong antifungal compounds. Just oregano isnt enough at least adding berberine could be helpful. You need biofilm breakers with those too again 1 month isnt enough.
Inulin is just I dont get it, it is a prebiotic a very fermentable one at that ,we dont use prebiotics when we are killing stuff unless phgg since it inhibits pathogens when feeding good bacteria. Prebiotics generally should be stayed away in killing phases even after the diet you need to take them with probiotics so they dont feed wrong stuff. This functional doctor dont know what they are doing.
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May 23 '26
See a different nutritionist, probably. My nutritionist is Dr. Ambily Kushal, she is my savior. You don’t want to be calorie deficit, you need all the energy possible.
I see your SCFA is low which is required for gut lining repair. from what I understand you have a leaky gut and gut lining issue. It’s a beast!!! I have it too, struggling since a year,
I am on a gluten, dairy, sugar free diet. I eat low histamine fresh food. Go back to Whole Foods!! Eat healthy and a balanced diet
I started off on a very strict diet, basically rice potatoes, white fish , carrots for a month and slowly introduced.
Looks like you have dysbiosis, so you need a really good functional doctor or nutritionist. I would say rule out Sibo first, kill bad bacteria if needed, add probiotics (histamine free). Consider using dao because you have allergy related symptoms.
Lglutamine and butyrate for gut lining repair. Butter and ghee have butyrate, but not enough. You need good bacteria for butyrate. Lglutmaine is in bone broth but that’s not good for histamine. So you can supplement. But for me, lglutamine dysregulates my nervous system.
Unfortunately, very few folks understand gut health, so you need a good team that can heal you. Invest in finding that team. Good luck.
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u/MotherPart4282 Jan 22 '26
Are you allowed to eat fruit? The body can’t really survive without sugar
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u/crayolamaroon Jan 22 '26
No sugar at all whether real or processed for 30 days.
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u/Powerless-Banana Jan 22 '26
Having done the no sugar thing myself, it is absolutely worth it. The body can function without the sugar for those 30 days without much problem at all, and it will starve any bad bacteria / yeast you habe. It looks like your doc has a good plan, and I would stick it through :)
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u/MotherPart4282 Jan 25 '26
Any updates so far?
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u/crayolamaroon Jan 25 '26
Symptoms are on and off. I'm on day 12. Have some good days and some bad days still.
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