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Reacting to both food and supplements

Discussion in 'General ME/CFS Discussion' started by Aleshun, Nov 27, 2017.

  1. Aleshun

    Aleshun

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    Hello, I have recently signed up looking for some insights into problems I have been having the past year and half. It started with memory issues, I used to have a fantastic memory but over the years(after 25), it has diminished but I have only noticed it in early 2016 when I started to forget things more than I was used to. Then my knees started to hurt, both are still present to this day. The next thing that happened was skin issues, i started to itch, especially when I was out in the sun(it can get pretty sunny in Arizona), or if I get excited or angry or if i took a hot shower. This was around late 2016. After this, things got worse, my joint pain got worse, and it spread to my wrists and toes as well as some fingers as well as my back. After visiting doctors and having failed to get any answers, I started to do some research on my own and I finally realized my symptoms correlate with my eating habits. Certain foods trigger them, such as sweet potatoes, all grains, watermelons, green tea, mushrooms, cashews and even fish. it's weird that some of the food you'd go to, to improve your health makes me sick. I tried to supplement but to no avail as well, I took multivitamins and I badly reacted to it. It made my pain worse, so I tried to supplement on individual vitamins and I reacted to each and everyone of them as well. I tried fish oil, i reacted to that and I even tried bone broth and digestive enzymes to see if they'd help with my gut but i had bad reactions with those as well.

    currently when I eat the foods that I have mentioned, I get back inflammation, really bad pain that feels like a vertical wound along the spine, headaches, visible twitching all over the body, joint pain. On top of this, my hands will fall asleep if I apply a little pressure on them, same with my legs. My memory is slightly better than before which is the only thing I am happy about it.

    I suspect it might not be the food itself but something else, like a problem with my digestion. they did a nutritional test and it didn't work the first time, but the second time I got the following results. I am deficient in vitamin b1, and I am borderline deficient in the rest of the B family, save for B12. I am also borderline deficient in folate, vitamin E, Selenium and Calcium. I had a low white blood count as well.

    I hope I didn't write too much. I appreciate to those who'll respond, thank you.
     
  2. RWP (Rest without Peace)

    RWP (Rest without Peace)

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    @Aleshun,

    Sorry to hear about this. There are many ways of dealing with this (at various levels), but a quick way to start would be to try to improve your digestion so that what you're eating (even things that you don't currently notice) will be better broken down into its nutrient components. That will give you more nutrition to your cells (e.g., the B vits you are low in) AND it will reduce the likelihood of a reaction (due to reducing strain on your immune system).

    My wife, @PWR (Peace without Rest), has MCS and also experienced food sensitivities in the past (not now). At one point, she had a 21-day rotation diet (not suggesting it for you!). I don't have much time, but I can tell you about dealing at more than just this level over time if you're interested.

    Can you tolerate digestive enzymes? Have you researched supplements? If you'd like to try some, I can recommend some brands/types.

    As far as herbals, ginger herb (caps or tincture---pour boiling water over each dose to dissipate alcohol) and peppermint tincture help stimulate bile and HCL respectively. These are necessary for your proper processing of what you're eating.

    RWP + PWR
     
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  3. wonderoushope

    wonderoushope Senior Member

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    I became very sensitive to foods, also get aches and pains all over my body and seems to flare-up with certain foods. I have been doing the RPAH (Royal Prince Albert Hospital) chemical intolerance diet which has really helped get my inflammation down. After about 4-5 months I am doing much better (took a while though). The diet itself is low in histamines and inflammatory foods, so helps settle the gut down. At my worst, I would react to a half a teaspoon of VIT D oil with orange oil in it. So I was also going to react to most supplements or pills. The RPAH has a list of supplements and pills that are recommended and tested for sensitive people. The problem is this diet was developed in Australia, so is mainly developed for Australian population (makes it a bit hard). But for example, they only suggest a few panadol brands and I have to remove the outer coating shells.

    I suspect it is not the food itself for me either because that pattern seems to be for me, once I get the inflammation down with a strict diet, I can eat normally for about 6 months without a reaction and then bam it hits again. Usually, a real intolerance with a certain food group will come to life in about 3-14 days. So if I am fine for 6 months of consuming foods then all of a sudden start reacting to lots of foods, I personally don't think it's an actual "real intolerance". My dietitian thinks I probably have gut dysbiosis and so I need to get my gut in better shape before trying to introduce more foods. I also have issues with FODMAPs as well and dietitian thinks histamines as well. So from the RPAH and FODMAP diet, I can only have certain fruits and vegetables. But at the moment my dietitian wants me to have 4-5 cups a day of vegetables that I can handle. It seems to help.

    I personally wouldn't take any supplements until your gut is in a better place. I mean ideally, you probably don't want to take any meds or supplements until you get your gut in a better place. But of course, if you need to take meds, take them! I would get sorted what foods your body really can and cannot tolerate and then flood your system with as much healthy natural foods as you can. I did this through the RPAH elimination diet, but there are many other elimination diets that can help. I personally would do it with a trained dietician though. I made so many mistakes doing it on my own initially.

    When you say a nutritionist test to see what you are low in, are these official blood tests? If so then maybe you do need to take supplements, but I would consult your doctor and also a really good dietician trained in food sensitivities would help a lot. I found a dietitian that specialised in chronic fatigue and food sensitivities.

    I also have problems with waking up with my arms and fingers numb or tingly. My ear joints also play up and are tender when I wake up some mornings. It somehow triggered by food and inflammation, but not exactly sure what foods trigger it or it could be just a case of the body being run down from a flare-up.
     
    Last edited: Nov 28, 2017
    Aleshun likes this.
  4. Aleshun

    Aleshun

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    Thank you so much for your help, and yes I would be more than interested in knowing how your wife beat this thing.
    Whenever you have time is fine with me. And you are right, because there are many times where I am eating healthy and I still feel horrible, though not as bad as if I were to eat any of the food I have mentioned. I have tried digestive enzymes and I have reacted to them as well. I first thought maybe it was the coating of the capsules, but I guess not because I cannot even tolerate regular tablets. I even tried fasting, and that was more harm than help.
     
  5. Aleshun

    Aleshun

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    Wow that's just as bad as mine. How long have you had to deal with this? Also could you share what you eat?
    They had me a do a micro nutrient testing which is a test that measures your vitamin and mineral levels in your white blood cells in the last 6 months, it's pretty accurate. If I could somehow found out all the foods that trigger my problems, I would avoid them all but like you said, I suspect it's beyond the food. I have never had any problems before about a year and half ago.
     
  6. Wishful

    Wishful Senior Member

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    Is the delay time for the symptoms consistent? My initial symptoms were a very precise and consistent 48 hrs after ingestion, which clearly indicated type IV food sensitivity. Now I have a 20 minute response to starch, which seems to indicate increased tryptophan transport into my brain.

    The type IV sensitivity went away after food poisoning, which I think indicates that it altered my microbiota in a positive way. You might want to look into methods for altering your microbiota, with diet, supplements, etc. Food poisoning (spoiled canned coconut milk in my case) probably isn't reliable, and is also painful, inconvenient...and messy. :rolleyes:
     
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  7. wonderoushope

    wonderoushope Senior Member

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    I had my first real bout in 2013 and it was pretty bad. My body shut down basically. I couldn't tolerate any foods at that stage and was vomiting and nauseous all the time. I was trying to figure out the elimination diet on my own as I had been to a few dieticians who were okay but really didn't know enough in my opinion. The elimination diet is really hard and very strict and I didn't realise I was wasting my time by not following it to a tee.

    Yes, healthy food can be a trigger too. I am sensitive to natural glutamates, so spinach, gai lang, tomatoes, grapes and lots of high FODMAP foods, like cabbage, green beans, chickpeas etc I am also sensitive to high histamine foods like eggplant, strawberries etc

    When you are in the strict elimination phase there are only certain foods you can eat. The break them down in to low, moderate and high and I had to go on the low one. I initially didn't cut out wheat, because I thought it wasn't a problem but it turned out it was, so it was clouding results. So on a typical day of strict elimination, it would be a cup of lentils (because I can tolerate them), iceberg lettuce (can only have this type of lettuce on the elimination phase), rice noodles, spring onions (only green part), very fresh meat, swedes, particular type of potatoes with peel off, plain crisp (only recommended brands and ingredients), rice cakes etc Things like onion and garlic are definitely not good for me, even though garlic was meant to be okay on RPAH diet

    Then once your stomach settles you challenge a certain food type like Salicylates, Amines and Glutamates.

    I passed sals and amines, so now I can eat lots more vegetables, meats and even have dark chocolate (although histamine so not meant to have much).

    You can get a small sample of the book here http://emerge.org.au/wp-content/upl...on-Diet-Handbook-with-food-shopping-guide.pdf

    or read about the FS diet (which is the same as the RPAH diet, they work together). FS targets more kids with intolerances and behavioural issues (not sure if I completely agree with the diet fixing behavioural issues, but it certainly helped my anxiety), but it's still the same diet https://fedup.com.au/factsheets/support-factsheets/how-to-start-failsafe-eating

    At the moment I have been introducing back magnesium and another supplement and I suspect it is making my stomach bloat up and running to the toilet, so obviously am still unable to tolerate supplements.

    Also the poster said MCAS, I too would look into that. My dietician think this could also be the issue for me too.
     
    Last edited: Nov 28, 2017
  8. valentinelynx

    valentinelynx Senior Member

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    Tucson
    If you haven't already, please look into MCAS (mast cell activation syndrome).
    Best of luck!
     
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  9. RWP (Rest without Peace)

    RWP (Rest without Peace)

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    @Aleshun,

    Check your PM's if you'd like.

    RWP
     
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  10. Aleshun

    Aleshun

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    I have not timed them yet but initial symptoms start within couple hours usually. There are times where they last for a week even after I have discontinued the triggering food. It's weird, but just about any food is a trigger. Does thing even have a cure?
     
  11. Aleshun

    Aleshun

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    so you tolerate Rice? I'd think grains would be the first to go, and I don't know much about the role histamine plays in this. I guess I've been ignorant before showing up here. Thank you for posting back, I'll read more later.
     
  12. Aleshun

    Aleshun

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    I will. Thank you.
     
  13. wonderoushope

    wonderoushope Senior Member

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    Sometimes though the food you think is the trigger is not actually the trigger. So it could be something you had a few days before. Sometimes it does take up to 3 days one to react to a food even longer and needs to build up. I was assuming that the food I was consuming on the day was the issue but soon realised this was not always the case.

    Also to answer your question about rice. Yep, I can tolerate rice, just not brown rice. I don't have a lot of it though. But yes a lot of grains seem to make things worse and overly full.
     
  14. Wishful

    Wishful Senior Member

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    If the symptoms start up at an irregular delay time and last for an irregular--and lengthy--time, I suspect that you're altering your microbiota in ways that causes the symptoms. The immune system seems to have a more consistent response time.

    When I had the type IV sensitivity, white rice was one of the few foods I could tolerate, with highly refined starches being the other. I guess white rice is pretty much just pure starch. For you, maybe the rice bran feeds some other bacteria or provides a microenvironment that supported the growth of bacteria that causes leaky gut syndrome or some such thing. Experimenting with fermented foods (yoghurt, etc) or probiotics might provide some useful information and maybe some benefit. If meat or fats don't cause the symptoms, a diet of that might help. I think you need to experiment to see what works--and what doesn't work--for you. I think even an expert in digestive problems would require you to experiment because everyone's digestive system is unique.
     
  15. Rizz

    Rizz

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    @Aleshun,

    I agree with everybody else as far as nutrition. It could be a negative response to the glutamates, histamines, salicylates, etc. the thing is that it is hard to eliminate foods when you barely tolerate anything to begin with. I, like you, am currently sensitive to all supplements except enzymes and ox bile. If i were you, I would definitely avoid all grains, maybe even some root vegetables too. Go by symptoms.

    Even if everything bothers you maybe try to rotate foods so you dont develop a further sensitivity to them? Its hard, listen to your body would be my only true advice. It sucks cuz bone broth and fermented foods are crucial to healing the gut, but I cant deal with histamines and im sure you probably have trouble as well. If you could, get tested for SIBO, or get a stool panel done. Then you could try eating raw garlic or maybe some pure, non filler containing tinctures like biocidin? Supplements are not being absorbed when there is inflammation present so let food by thy medicine first. When you eat, make sure you are calm, and have no distractions, maybe diffuse some e.o's or something. Also, look into lyme and coinfections, i know bartonella can affect the vagus nerve..

    Ooh almost forgot, ive been meaning to try cbd oil for food sensitivities. Maybe give it a go if you can tolerate.

    Good luck!
     
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  16. Violeta

    Violeta Senior Member

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    Your situation sounds very similar to mine. It's very difficult for me to find food that doesn't make me sick. Right now I am avoiding starch, and am having a lot less pain and brain fog. It's very difficult to even talk to other people about it because it's almost embarrassing to have to keep saying that almost everything makes me sick in one way or another.

    One supplement that has helped almost immediately and that I had no side effect from is rhodiola.
     

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