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Which immune modulator has the most benefit in improving your food sensitivities/mast cell issues?

Fogbuster

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I'm looking for an immune modulator which can have an effect on reducing food sensitivities, but also mast cell issues. If anyone has any personal experience of improving food issues through using an immune modulator, or knows of someone who has, I'd be very interested to hear about it.

I have a huge amount of food/drink chemical sensitivities. I react to all the same food groups as people with mast cell disorders.

Any recommendations welcome. Thanks!
 

Fogbuster

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My knowledge of pharmacology is weak, but if someone wants to give me a list of popular immune modulators, I could make a poll.
 

frederic83

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I did not have MCAS, at least I think, but I had food intolerance for years. I was able to eat 5 or 6 different foods only at one point. What helped me is an homeopathic remedy Crotalus Horridus (venom from the snake) 4CH and it almost got rid of all my intolerance after taking the remedy for four days and it has been like that for more than six months, I don't think it will come back. Night and day, literally.
I originally took it for EBV, I was told it was antiviral to it. It did not cure my CFS, though. Just a little bit better for the fatigue.
I tried several things through the years for this food intolerance problem, and it never worked.

I still avoid gluten and milk, I have not try it since my success, sugar in normal dose seems ok.
 

Diwi9

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I'm take three different anti-histamines (loratidine, fexofenadine, and ketotifen) for MCAS. Some triggering foods contain histamines, so I would assume anti-histamines would be helpful...but my knowledge of MCAS and food sensitivities is weak.
 

kelly8

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Hi @Fogbuster ,
I was diagnosed with MCAS. I'm not sure about immune modulators but I can tell you how I dealt with my food sensitivities. I'm interested in following your thread because my next thing to tackle health wise is my immune system and possible viral/ bacterial issues.

It took about three years to get to the point I'm at now. I was having issues eating almost all foods. I was having chemical sensitivities to even soaps, smells things in the air. It was really bad. My gi Dr who diagnosed me was terrible with diet and basically told me to avoid all foods that caused issues plus high histamine foods. That left me with very few options.

What I did was two part. One was dealing with the inflammation in my body and the second was fixing and rebuilding my gut. He put me on ranitadine and loratadine. (I'm a terrible speller and am unable to get to my meds right now...). For inflammation I also take turmeric, reservatrol and a blend of herbs designed for inflammation. I was using my eyelids as a guide because they were so puffy especially when I got up in the morning that it looked like I was punched in the face.

For the gut, I avoided all the recommended food for a couple months. During that time I started rotating 6 different strains of probiotics. As the inflammation went down I started noticing that I wasn't reacting as much to chemicals. When I noticed this I tried adding in very small amounts of foods I reacted to. I did it one at a time and very slowly. For a while I was able to tolerate very small amounts of the allergens at different times during the week. I tried not to over do it and would back off if I felt like i was having an issue. I am able to eat a lot more now but I still need to avoid all gluten and some diary. If I start to react I need to pull back to a more basic diet until my body can heal again.

It seems like I keep having set backs along the way. For example I have a very nasty cold that has turned to bronchitis. Everyone else got sick and is fine. Mine lingers and causes havoc with my gut. So now I have to go back to my baseline diet until I start healing again. It sucks, but at least I've got a plan and know there is a light at the end of the tunnel.

In terms of the chem sensitivities.. I cleaned out our house a while ago and only use natural cleaning supplies and toiletries most of which I make. I'd rather not set off any issues if I can. I avoid stores and bathrooms and people that smell like chemicals or perfumes or smoke.

I hope this info helps you and I'm interested in seeing what types of answers you get....
 

Wishful

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Food poisoning! Curry made with canned coconut milk that was 'off' cured my type IV food sensitivity. I assume that the 'flushing' action altered my microbiome in a way that resolved a leaky gut. Antibiotics and probiotics hadn't helped, but bad coconut milk did.

It worked for my type IV sensitivity. I don't know how it would work for other types of food sensitivities. There's also the problem of getting the 'badness' of the food poisoning 'just right'. The experimental process would be...messy. :rolleyes:
 

Fogbuster

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I did not have MCAS, at least I think, but I had food intolerance for years. I was able to eat 5 or 6 different foods only at one point. What helped me is an homeopathic remedy Crotalus Horridus (venom from the snake) 4CH and it almost got rid of all my intolerance after taking the remedy for four days and it has been like that for more than six months, I don't think it will come back. Night and day, literally.
I originally took it for EBV, I was told it was antiviral to it. It did not cure my CFS, though. Just a little bit better for the fatigue.
I tried several things through the years for this food intolerance problem, and it never worked.

I still avoid gluten and milk, I have not try it since my success, sugar in normal dose seems ok.
That's impressive, congratulations on the progress. But isn't homeopathy a bit quacky? I mean if it works for you, then that's brilliant. But I'm not sure it's going to be at the top of my list.
 

frederic83

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That's impressive, congratulations on the progress. But isn't homeopathy a bit quacky? I mean if it works for you, then that's brilliant. But I'm not sure it's going to be at the top of my list.
I think most of homeopathy is useless but this one worked and it worked very well. It's cheap, it would be interesting to see other people with EBV try it.
 

justy

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Im not sure that an immune modulator per se will get rid of food reactions. If your reactions are caused by mast cells then Nalcrom stabilises mast cells in the GI tract and helps many with MCAS to tolerate more foods. Unfortunately i reacted to it. You will need a prescription and should start with a low dose and gradually work up.
 

Diwi9

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I don't know if it helps with MCAS, but I take Equilibrant, which is an immune modulator. There are a number of threads on it if you search the term.
 

justy

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Low dose antigen therapy is usually always contraindicated in the case of MCAS. This is because the goal is to quieten mast cells and LDA/LDI etc constantly evoke a response of the immune system. It is more effective for IGE mediated allergy.
 

Learner1

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Low dose antigen therapy is usually always contraindicated in the case of MCAS. This is because the goal is to quieten mast cells and LDA/LDI etc constantly evoke a response of the immune system. It is more effective for IGE mediated allergy.
Unfortunately, I didn't know I had MCAS until very recently, though looking back, it was likely there.

The LDA did help IgE allergies. I used to take cromolyn, ketotifen, fexofenadine, and had an inhaler and EpiPen.

Removing food allergens - wheat, corn, eggs, and milk products, detoxing and being on a comprehensive nutritional supplement program brought my MCAS symptoms to almost none, with no need for meds. However, it's affecting my bones and response to IVIG.

We are all different and have different genes, microbiomes, toxicities, infections, autoimmune issues, and other comorbidities, etc. MCAS seems to have different etiologies and presentations.

Not sure what the right answers are, but am thankful my doctors are thoughtfully helping me try different treatments.

And I'd be interested if anyone has any ideas on reversing MCAS related osteopenia with something other than Fosamax...
 

echobravo

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The healthcare you seem to be getting in the US seems so much more advanced than what is offered here in Norway. We have so few specialists, and they seem to know so little in comparison to doctors in some other countries. Ok, we are a small population, and we have fewer doctors, but I am wondering if the “socialized medicine” model with it’s lack of competition fosters a certain laziness in the whole medical field - no need or motivation to keep updated or to really try to help ppl out with their symptoms. Since the state is the employer for most doctors, jobs are safe, and lack of results barely has any consequences.
 

Learner1

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The healthcare you seem to be getting in the US seems so much more advanced than what is offered here in Norway. We have so few specialists, and they seem to know so little in comparison to doctors in some other countries. Ok, we are a small population, and we have fewer doctors, but I am wondering if the “socialized medicine” model with it’s lack of competition fosters a certain laziness in the whole medical field - no need or motivation to keep updated or to really try to help ppl out with their symptoms. Since the state is the employer for most doctors, jobs are safe, and lack of results barely has any consequences.
There are flaws in each country's medical system. In the US, its fee for service...they charge you whether they help you. Costs are the most expensive in the world and the urge to cut costs me and that insurance companies and governments are rationing care. Or one can pay fill price. And the FDA is in the pocket of the pharmaceutical industry, allowing dangerous drugs without properly monitoring the safety of our food supply.

On the other hand, I see the flaws in many other countries.

It speaks to understanding the best research in the world and self-advocating to get high quality treatment.

Most people don't get well as their doctors don't look for and find solvable problems. We need out of the box thinkers with good experience. Just not enough today, so we patients are left to struggle for resources on our own.