• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Food Sensitivities: Limit or Avoid Completely?

I eat foods I'm sensitive to


  • Total voters
    18

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
" started getting so swollen that sitting with my legs up hurt because the pressure of my legs on the couch! "

I have similar symptoms on whatever part of my body is getting the most fatigue. My butt if I'm (forward) sitting at the computer, If I lean on the back rest to take some weight off my butt, than it's my back. Laying in my bed with my laptop in my lap It would be the back of my head and to a certain extent my butt & my back.
Back pain is not conventional, feels like I am going to have a heart attack, forces me to stop whatever I'm doing that causes it.
As you intimated the symptoms seem to be more profound when I've had some type of reaction to food.

My blood pressure drops way down and usually my heart rate goes up. (Symptom of food reactivity) So I'm wondering if the symptoms (your talking about) can't be provoked by a lack of blood flow in these areas which is exacerbated by the low blood pressure.

Robert christ
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
I try to completely avoid any food I think is making me sick but there's so many it's hard to tell which ones are making me sick. So I'm down to to very limited base diet of meat fried potatoes, & brown rice which I feel fairly confident I react to the least. I have to add some vegetables and some fruits periodically otherwise I'll become deficient, but it's really hard to tell how much these affect me because it seems the more I eat them the worse I get. In other words it seems to be cumulative for me which makes it very hard isolate a problem item, because by this time I've introduced more than one item.

I do wonder if very carefully prescribed "challenges" might have some type of beneficial effect, similar to what allergist do for people with a hay fever.

Before you could do this you have to isolate everything that makes you sick. Which seems almost impossible.

Robert Christ
 

brenda

Senior Member
Messages
2,270
Location
UK
I am thinking of doing the exclusion diet as I suspect salicylate sensitivity and possibly other things as well. According to one site, you should eat white rice, chicken and pears for two weeks then add one food at a time butnow I am worried about becoming hypersensitive to sal. I am working on personal hygeine products atm to get all sals out of them and then I will start on diet. I wonder if I should just go low rather than exclusion.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
That'd be difficult for me Brenda as I don't 'do' pears'!!
Seriously though in my opinion you need to go exclusion first to get a measure of where you are at with certain foods, its the only way to do it.

Once you are stable then what I do is eat foods I'm intolerant to every now and again, and then only in very small amounts - this way it seems I don't have the same full blown reaction. I am dairy,casein,gluten,egg, sugar free.
But have lots of stuff I avoid as well, beans, peas, squash, sweet potatoes etc. luckily I can eat most meats, never processed though.
 

brenda

Senior Member
Messages
2,270
Location
UK
Thanks for the tip. I am wondering whether to eat brown rice on the ex. diet as it has some sal. in and some are saying that if you come off that completely you get a horrendous reaction later if you get even a little bit. I have put this off for years but am going to bite the bullet :( First though I am reducing sal. products which is proving a nightmare to find a shampoo and cutting back on the highest sal. fruits and veg. So what did you eat for the exclusion phase?
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Well I was lucky in that I had several food panels done which identified a lot of my intolerances.I mean who would think eg. peas?
Before this I was in a food prison of chicken, brocolli, carrots and brown rice. It was a nightmare.
 

brenda

Senior Member
Messages
2,270
Location
UK
So you did not exclude salicylate when you went on the exclusion diet as brown rice carrots and broccoli contain it and also broccoli also contains oxalate so that was another common chemical in many foods that a lot of people have an intolerance to that you did not exclude.

Salicytate is a kind of natural pesticide that is in most fruit and vegetables which sensitive people often develop intollerance to but I think it does not work like normal allergy.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
No I think mine was more about widening my choice of food and improving my massive reactions to some foods. As others say dizziness, feeling spaced out, need to sleep, stomach ache, nose and throat tingling within minutes of eating some stuff.
Whether I'm also sensitive to salicytes I don't know I take a lot of aspirin - its the only pain killer that works.
I don't eat anything with sulphites,nitrates or any preservatives that I know about though.

Maybe one day I'll try to check whether I am sensitive to sal but for now.........
 
Messages
25
Location
Altadena, CA
Personally I don't rely on any tests or food groups or what chemicals are in what foods. I eat the foods and see if I react. None of the theories I've heard of explain my reactions. There's only a few foods I can eat. For almost all of the time I've known I have been food reactive, I completely avoid the foods I'm reactive to. Very occasionally I eat the food as a test to see if I still react. Sometimes reactions to a food go away after a year or two. Usually they eventually come back. Most foods I rotate on a 5-7 day basis. Seven is better for me. The staple that I've been able to eat which is certain cuts of beef I have to eat multiple times of a day as there are so few other foods I can eat. It has never ever worked for me to try to acclimatize or slowly adjust or build resistance to a food. I either react or I don't and so I avoid.

Not a desirable situation for sure - I guess I'm just suggesting be very very observant of the effects of what you eat and putting more reliance on those observations. At least that is what I've had to do. And yes that includes eating single foods at a meal and or having only one unknown at a meal. Last point, my reactions at least after my health fell to pieces where clear and easily discernible.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
I found out recently that there's a protein in oats that's similar to gluten and so some people say you should also avoid oats even if they're "gluten-free". Does anyone else know about this? And do you avoid oats as much as wheat?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I found out recently that there's a protein in oats that's similar to gluten and so some people say you should also avoid oats even if they're "gluten-free". Does anyone else know about this? And do you avoid oats as much as wheat?

Yes, oats contain avenins which are similar to gliadins, and some gluten-sensitive people are also sensitive to these.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Yes I've tried gluten free oats and they give me the same symptoms as ordinary oats. I used to love oats - I was desperate to find some I could tolerate but sadly no.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
When I found out that thing about oats my first thought wasn't "now I should also stop eating oats". It was actually "maybe I should eat more wheat":devil: I told that to my dad who is also avoiding gluten and he started laughing saying he was thinking the same thing. So far, me and my parents are still avoiding wheat, but still also eating some oats. I am trying to cut back on grains overall due to the caveman Paleo diet.
 

dannybex

Senior Member
Messages
3,564
Location
Seattle
I used to be not able to handle egg yolk, but on my recent protocol changes (including resveratrol) I found I can eat eggs again. I have been making up for lost time, and eat eggs several times a week now. However if I am off resveratrol for a bit my intolerance starts coming back. Against this I do not want to take resveratrol all the time as it could have unpredictable and nasty side effects at too high a dose or for too long a time.

Wow, I wish I saw this two years ago. :)

Anyway, thanks @alex3619. I haven't been able to tolerate egg yolks for probably 8 years, maybe more. And other fats as well, so I eat what I can (but probably avoid too many foods that are 'okay') and have ended up with high triglycerides, worsening RLS, borderline pre-diabetes, etc., etc..

So two years later -- is this still working for you? And I'm curious since I know you also have salicylate intolerance issues, if you know (or care?) about it's salicylate/phenol content, and also if it affects prostaglandin balance? I've read that it does lower triglycerides.

Lastly, how does it affect your sleep negatively? And because of that, do you take it only in the mornings?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
@dannybex I still eat eggs. However I went off eggs for about six months as we had salmonella outbreaks in some local egg farms over the summer. Now its winter I am back eating them.

I take resveratrol twice a week. It does not seem to provoke any negative responses, aside from decreasing sleep duration. However it also increases tolerance to sleep loss, so its not a bad thing. This does not mean there are no side effects, only that I have not identified any. I take it only twice a week, unless I am having breathing issues, because I am aware there may be unintended effects. Its a powerful blunt instrument. I also use a moderately high dose. Lower doses even every day do nothing for me.

Given that it lasts three to four days I am not concerned about what time of day I take resveratrol.

I do think that the shifts in diet we are forced to take to control short term issues, and which can be life saving, might well have long term deficits. I am particularly worried about people with severe MCS who are down to only a few foods. We need answers, which means we need research funding.

In my case my diabetes is probably becoming less and less well controlled over time as my health has been declining. As my health improves (there are some signs its improving now rather than declining) I can address more and more of these issues.

Oh, PS, a trivial issue. Resveratrol tastes bad.
 

dannybex

Senior Member
Messages
3,564
Location
Seattle
Thanks so much @alex3619.

A couple quick followup questions: You probably remember that I have salicylate issues as I think you do. And maybe that's one reason (besides the price) that I never tried resveratrol, because it's made from grapes (high in sals). But apparently you had no problems with it salicylate-wise?

I can also certainly relate to the limited food choices and some MCS issues (many fragrances have phenols), and also I've developed some pre-diabetic numbers, which I attribute to avoiding a lot of good old fresh fruits and veggies because of their high salicylate content -- a vicious cycle.

So my second question I guess is do you think, especially since it's enabled you to eat egg yolks, that the resveratrol has helped with your circulation-related diabetes issues -- or various prostaglandins that get screwed up w/sal problems?

I did find a few studies that show resveratrol is helpful for both preventing and treating diabetes:

http://www.ncbi.nlm.nih.gov/pubmed/25445538

http://www.ncbi.nlm.nih.gov/pubmed/21261639

http://www.ncbi.nlm.nih.gov/pubmed/22055504

And lastly, while of course we're all different, what dose have you found effective?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I take 600mg resveratrol twice a week. 300mg every day does not work for me at all. There appears to be a minimum dose for benefits.

I have had no salicylate issues from resveratrol. The purification would have removed some of the salicylates, but it pays to be careful the first time with any new brand.

I don't know its helped with circulation, or insulin, so maybe. I have considered it but such things are hard to observe. The studies seem to suggest it, just as they suggest its good for asthmatic type conditions.
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
There are different levels of sensitivity. I think we should stay away from the immutable ones; for me this is wheat, for others it might be milk, soy, or any of the usual suspects.

I develop new sensitivities when I become overly toxic or when I suffer PEM. I used to avoid the problematic food for three months before reintroducing it to my rotation diet, but I was finding more and more this wasn't always resolving the matter. So I tried consuming minute quantities of the food I was sensitive to within my four day rotation and this desensitized me in an even shorter period of time and more reliably. This is generally the system I use nowadays.
 

perchance dreamer

Senior Member
Messages
1,699
@lotus, I am off wheat and gluten almost entirely, but earlier this year I ate a boatload of pasta and bread one night when I was on a trip with my GFs. Eating a large quantity of those foods gave me really bad joint pain that night, but on the same trip I had eaten smaller amounts without noticing symptoms.

I hope I never become sensitive to eggs because I like them every morning for breakfast. My nutritionist said that a lot of people can get egg sensitivities, and one way to head that off is to cycle the type of eggs you eat.

So now I eat chicken eggs for a week followed by duck eggs the next week.

The duck eggs were a revelation! They are much richer and creamier than chicken eggs and are a bit more nutritious.