Help! Develop rashes when eating but all food sensitivities negative. Gut issues?

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I have been sick for a little over a year now and just a few months ago I started having reactions occasionally when eating. The reaction starts by causing my ears to get really red and hot, then my face, chest, shoulders, elbows, knees (basically all joints) becomes really red and hot. After talking to one of my doctors we thought maybe since I have become sick and my GI track has become tired, I am now reacting to certain foods that I have sensitivities to, that when healthy my body could manage better.

So we decided to do a couple food sensitivity panels. One was and IgG panel with US Biotek and the other was an in house allergen nut panel. I got the results and basically have zero sensitivities to any foods. Even ones like walnuts and pineapple that I ate and immediately had reactions to were undetectable. Even weirder is that sometimes I eat these foods and have no reaction whatsoever. And just the other week, after not eating any food for a while, I was sucking on a zinc lozenge and started having a reaction which just seems weird.

Anyways, since the results came back normal my MD basically told me that she is not really sure what to do, even though I even had photos of the rashes that I get. I have been talking with my naturopathic doctor about gut issues but he is a little stumped as well.

Does anyone have any similar experience to this? Knowledge/understanding/resources that could help me? Could this have something to do with leaky gut or a microbiome imbalance?

It sucks to continue to feel sicker and sicker and every time I do a test it comes back normal, my MD congratulates me and then sends me on my way with even more despair that I am never going to get better.
 
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Hi maggie3, Sounds not dissimilar to my problems except mine are when taking any kind of medication. I have Candida and a leaky gut. After many years have found a good Dr who says I have major gut issues. Am on a strict diet and am having FMT (Foecal microbiome transplant) to re establish all the good bacteria in my gut. I think what happens through leaky gut is too many bad bugs and foods get into the bloodstream then they create major problems like inflammation.

When I joined last September I asked did anybody have any systemic reactions to drugs but I think it's quite uncommon. The central nervous system has a major part to play to.
You are not alone on this forum theres always good practical advice.:hug:
 
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Hi @Goldfishbowl, thanks for the response! Did you do any sort of testing to identify your gut issues/inflammation/leaky gut? My naturopath is recommending that I do an intestinal permeability test through the company Doctors Data as a first step in trying to get more answers to this issue. So just curious as to what steps you took or any tests that you took?
 

Hip

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So we decided to do a couple food sensitivity panels.
Food intolerance cannot be tested for by any medical blood tests. Tests that claim to detect such food intolerances are a con trick. Hair analysis tests on the Internet that claim to diagnose food intolerance are a also scam.

Food intolerances are diagnosed using an elimination diet (exclusion diet). This involves monitoring your symptoms while following an elimination diet, introducing suspect foods one by one. It takes several months, and involves quite a bit of effort, but unfortunately there are no shortcuts. Ref: 1

Allergies can be diagnosed by skin prick testing and blood tests. Details here. Allergies cannot be diagnosed by hair analysis testing; the hair testing allergy tests sold on the Internet are a scam.
 
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Hope4

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Hi, @maggie3 I'm sorry that happens to you. I found out that the rashes I get are hives.

I went on the Royal Prince Alfred Hospital Elimination Diet, and when I keep to the strict version of it, I can keep the hives mostly in remission.

Here is a thread I posted here at PR about the RPAH Diet:

https://forums.phoenixrising.me/thr...safe-while-having-me-or-ehs-or-mcs-etc.75911/

I am sending you good thoughts and hope you feel much better very soon . :hug:
 
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Thanks @Hip! Ya I have had these sort of rashy responses from something as little as having a zinc lozenge so am thinking it is something other than just food intolerances, potential like MCAS, etc. Although every time I read about try to understand MCAS I get confused, ha, just like I get confused when trying to understand me/cfs. It all just seems so complicated and foreboding :/
 
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Hi, @maggie3 I'm sorry that happens to you. I found out that the rashes I get are hives.

I went on the Royal Prince Alfred Hospital Elimination Diet, and when I keep to the strict version of it, I can keep the hives mostly in remission.

Here is a thread I posted here at PR about the RPAH Diet:

https://forums.phoenixrising.me/thr...safe-while-having-me-or-ehs-or-mcs-etc.75911/

I am sending you good thoughts and hope you feel much better very soon . :hug:
Thanks for the resource @Hope4 ! And glad you were able to find some relief from the hives. Its never fun to get unexplainable rashes.
 

Hope4

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@maggie3 I, too, find much of what I read complicated and foreboding. I think you put that very well. The food intolerances and MCAS seem to be connected, at least, that's my hunch about my situation.
 

rel8ted

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Thanks @Hip! Ya I have had these sort of rashy responses from something as little as having a zinc lozenge so am thinking it is something other than just food intolerances, potential like MCAS, etc. Although every time I read about try to understand MCAS I get confused, ha, just like I get confused when trying to understand me/cfs. It all just seems so complicated and foreboding :/
Are you experiencing flushing (which is usually hot, red areas of skin) or possible hives which can range from single, tiny, almost flat dots to large & blister like patches?

I have mast cell disease & get both. When my ears flush, they can become almost purple & are very hot to the touch. If I turn the tiniest bit red, we shut down all activity just in case we are in for a big reaction.
 

Hope4

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@rel8ted When the flushing occurs, do you feel hot, too? I get that. And sometimes, kind of woozy or quite off. I should pay more attention to what comes along with the flushing.

I'm sorry you get almost purple ears. I get that on my cheeks and across my nose sometimes. It can take a couple of hours or more to fade away.

I didn't realize all my odd symptoms formed so much of a pattern, until I came to this forum.
 
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@rel8ted yes I definitely experience flushing! (not hives). I can tell when I am beginning to have a reaction immediately because, like you, my ears suddenly get extremely red and hot (@Hope4 ), that then spreads to my face and chest. All of my joints then get red and hot as well. And then overall I just feel kind of funky/off for a while or until it subsides

The first time I had this reaction, the flushing went away pretty quickly, 15 min, but each time it happens it progressively gets longer. Most recently it probably took an hour before the reaction cleared completely.
 

Wayne

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@maggie3 -- Any chance this could be some kind of high histamine level response? I recently learned about "histamine bumps", and suspect I've dealt with this in a relatively minor way for many years.

I was sucking on a zinc lozenge and started having a reaction which just seems weird.
Supplementing with zinc has the potential to knock heavy metals out of zinc receptor sites. So any kind of reaction from zinc could be a result of this.
 
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Hi maggie3, Systemic fungal infections have always been a problem for me. But I react to all medication so it's been a major problem. The fact that I've been unable to repopulate my gut properly has not helped.
The ME virus has weakened my immune system giving fungus a chance to take hold.
I've had cryptococcus as well which lives in all of us but my immune system has not kept it in check. I did use antifungals to get rid of it but it made my ME so much worse.
So I already knew my gut was the major problem and have found a switched on Dr who specialises in gut microbiome. He uses oral pro biotics for all his ME patients as a standard treatment.
The FMT treatment I'm having is to stealthy put all the good bugs back in my gut without any reaction from my body. I did react to the colonic which I had to have as I couldn't tolerate the antibiotics to kill all the bad bugs in my gut before I started the treatment.
So as yet have had no tests as it depends on the outcome of the treatment.
:hug:
 
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@maggie3 -- Any chance this could be some kind of high histamine level response? I recently learned about "histamine bumps", and suspect I've dealt with this in a relatively minor way for many years. ...... Supplementing with zinc has the potential to knock heavy metals out of zinc receptor sites. So any kind of reaction from zinc could be a result of this.

Hi @Wayne, hmm I am not sure! Is there a way to determine if it is from a high histamine level response? Ive never had reactions like this before until now so this is all very new to me.
 
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Hi maggie3, Systemic fungal infections have always been a problem for me. But I react to all medication so it's been a major problem. The fact that I've been unable to repopulate my gut properly has not helped.
The ME virus has weakened my immune system giving fungus a chance to take hold.
I've had cryptococcus as well which lives in all of us but my immune system has not kept it in check. I did use antifungals to get rid of it but it made my ME so much worse.
So I already knew my gut was the major problem and have found a switched on Dr who specialises in gut microbiome. He uses oral pro biotics for all his ME patients as a standard treatment.
The FMT treatment I'm having is to stealthy put all the good bugs back in my gut without any reaction from my body. I did react to the colonic which I had to have as I couldn't tolerate the antibiotics to kill all the bad bugs in my gut before I started the treatment.
So as yet have had no tests as it depends on the outcome of the treatment.
:hug:
Ah I wish this stuff wasn't so complicated o_O ahh but don't we all. I am working with my doc to get on a really good gut supportive/healing regime, because like probably most every other me/cfs' er out there, my gut definitely needs the extra love on this healing journey. I hope that you start seeing some good outcomes from your treatments that you are implementing!!!
 

Wayne

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Hi maggie3, Systemic fungal infections have always been a problem for me.
Hi @Goldfishbowl -- You may want to check out the following post I made last year ...

Candida & Biofilms - Theory & Protocol
Hi @ChrisD, You may want to look into iodine. Here's quite a remarkable account that explains my thinking... Dr Orian Truss In 1953 Dr Orian Truss discovered the devastating effects of antibiotics in an Alabama (USA) hospital. During a hospital round Truss was intrigued by a gaunt, apparently...
Also, I recently became aware of Sodium Thiosulfate (STS), which is an inexpensive sulfur compound that gives the rotten egg sulfur smell to healing sulfur hot springs. It is a very strong anti-fungal, and I recently began experimenting with it.

I initially put between a tsp and a tbsp in bathwater, as it is able to dechlorinate the bath water. Apparently, just 2 cups of STS "crystals" can dechlorinate up to 25,000 gallons of water. So it was nice to be able to be in the bath water without having to be concerned about the chlorine content (which can affect digestion).

What surprised me was that by the next morning, my "minor rash spots" were about 90% eliminated. I had long suspected they were caused by Candida or another fungus, but wasn't sure. Then I heard about "histamine bumps", and thought that was a good possibility as well. But regardless, the STS baths sure took care of it pronto, and has been a non-factor for me since.