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My food intolerances can keep me home bound....or not

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by Timaca, Apr 6, 2015.

  1. Timaca

    Timaca Senior Member

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    Here's my latest blog post on how food either kept me home bound or allowed me to be out hiking!
     
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  2. Valentijn

    Valentijn WE ARE KINA

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    Diet doesn't make any difference regarding my ME/SEID, except that the wrong foods cause swelling. Eating a certain way doesn't help me at all in being more active.
     
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  3. SOC

    SOC

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    @Gingergrrl, you might find the website associated with the blog above very useful. It looks like there's plenty of low-histamine recipes. Maybe you'll find some easy snacks as well. :)
     
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  4. wdb

    wdb Senior Member

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    Silly me I keep choosing Home bound, I must try to remember to choose Hiking more often :rolleyes:
     
  5. SOC

    SOC

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    I can't say diet has made a huge difference for me, either. However, once I dealt with all the low-hanging fruit (pathogens, OI, thyroid, sleep problems), I started trying the 1-5% improvement things. Diet seems to be one of them for me. It may not be a major player, but every little bit helps.

    I suppose there's some kind of logic to the idea that given the degree of immune dysfunction and inflammation we have, food sensitivities could easily develop. I suspect they're secondary to bigger issues and if we could get the bigger issues under control, the food sensitivities might be a non-issue.
     
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  6. Timaca

    Timaca Senior Member

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    Valentijn~ What foods cause you swelling?

    SOC~ I totally agree that the food issues are secondary.....and I think it's due to pathogens, possibly pathogens affecting the intestinal mucsoa in some way. It would be nice to get to the bottom of what is causing the CFS and solve that for I also believe the food intolerances would go away.

    Regarding my blog....thanks for suggesting it to someone else. I hope they find it useful. I haven't put too many recipes up yet for I am still eating pretty simply. But, that's OK for now, it is what it is! :rolleyes:
     
  7. Valentijn

    Valentijn WE ARE KINA

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    Cranberries, gluten, soy.
     
  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    Wow
    Thanks for the sensitivity in choosing your title.
    (pardon me for the bitterness but there are hundreds of us here lounging in bed/couch wanting to 'choose' hiking).
    Happy to know you can once again hike.
    Maybe it has something to do the antivirals you're taking? If so it's good to have another anecdote that antivirals can be effective for ME.
    If only they were more widely available.

    I hope your health continues to improve. I also hope that you will have the opportunity to share with those around you accurate information about this disease so that more people learn how truly devastating ME really is.
     
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  9. Timaca

    Timaca Senior Member

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    Valentijn~ Wow, what an interesting assortment of foods that cause you the swelling!

    Snowdrop~ You are correct.....that title choice wasn't the best.....I do apologize. It is what popped into my mind because the stay at home day and the hiking days happened so close together, that the contrast was startling. Similar things happened when I challenged the egg yolks and oatmeal (stay at home days)....

    And even though I can hike some, I still must be careful how much I do, and I can't hike near what I used to be able to do.......

    While the antivirals certainly have helped me, the diet has also played a significant role. It's most likely the food that made me house bound most recently and the lack of those same foods which allowed me to hike....since my antivirals remained the same. Time and more experimentation will tell for sure.
     
    Last edited: Apr 6, 2015
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  10. Timaca

    Timaca Senior Member

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    Snowdrop~ I changed my title......hope this one is more appropriate. I certainly know (and remember) what it feels like to be home bound, with tears in my eyes, as my family and friends go about their activities. Even most recently, when I was stuck at home, I was quite sad, frustrated, worried, teary....all those emotions we have when we are worse. Now my husband is out hiking....training for a backpacking trip I'd love to be able to do.....but I will probably never be able to do anything that strenuous again.
     
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  11. SOC

    SOC

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    Yep. Until the time we figure out what is causing ME/CFS, we'll have to make do with treating symptoms and secondary issues with an eye to improving quality of life. If dietary changes are going to improve my QOL, I'm willing to try them, even though as a PWME without gut issues I haven't considered diet a big factor for me.

    Pass on the simple "recipes", too. :) I found your article about cooking sweet potatoes and yams very helpful. Lots of us are still trying to learn the tricks of eating simply with low-allergen foods. Gone are the days of interesting and complex meals. It's become a question of trying to find simple, but not boring meals.

    I'm trying to put together a book of easy ways to maintain a low-allergen diet for my soon-to-be graduated and married daughter. She'll have more than enough on her hands with mild ME, a new job, and a new marriage to deal with. A collection of simple, healthful foods would be a big help to her and her new husband.
     
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  12. Timaca

    Timaca Senior Member

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    You are so kind to mention that one of my articles about sweet potatoes and yams was helpful to you. I have thought that what I'm going through (including the simple meals) may some day be of help to others so that is why I started the blog. With your encouragement (and as my health allows :rolleyes: ), I will put up some more recipes.

    All the best,
     
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  13. nandixon

    nandixon Senior Member

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    For me, food choices don't seem to be able to improve my baseline, but they can most definitely make it worse.

    Eating dairy (milk products) means I'm completely housebound and partially bedridden with extra fatigue/exhaustion and weakness. Not eating dairy means I'm mostly housebound but can at least get out maybe twice a week and go for a walk (I do end up with PEM every time afterwards, though).

    (Some other foods also cause this degree of extra disability for me, including cashews. The same foods are also delayed migraine triggers.)

    The food intolerance thing started at the same time as the ME/CFS for me. A lot of people don't realize this can happen because of the insidious delay between eating an offending food and symptoms (1 to 3 days in my case).

    Thanks for making more people aware of this problem @Timaca.
     
    Last edited: Apr 7, 2015
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  14. xrunner

    xrunner Senior Member

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    Hi @Timaca

    Thanks for this thread. Until a few weeks ago I thought sensitivities were not an issue for me until I found out that some foods can wipe me out.
    I'm only about 50% recovered but there's a few foods that can make a difference between walking up to a couple of hours or up to 20 minutes! That's what chilli for e.g. does to me.

    Problem is this kind of sensitivies are stealthy, not obvious at all. When I had MCS it was obvious when I reacted to foods and smells. Now it isn't. No cardiac or respiratory problems, no digestive issues, no rashes etc. nothing except some kind of immune activation that feels more like a virus.

    When I ate a lot of chilli that was the last thing I would think of as a possible cause. I thought may be I had caught a cold going round etc. It didn't feel like a food intolerance as I imagined it to be.
    Or take cheese. If I have it for two three days in a row it doesn't affect me much but if I have it regularly, day in day out, then my baseline starts declining rapidly. Same with corn.

    In my case the effects tend to be cumulative and are not immediate. So there could be other foods that affect me of which I'm still not aware.

    I have known people that had good recoveries by treating sensitivities with immunotherapy which made their infections (i.e. chronic Lyme) easier to treat after they couldn't progress much by treating the "bigger" issue only.
    Unfortunately I can't afford that treatment right now.
     
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  15. Timaca

    Timaca Senior Member

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    @nandixon ~ Your comment about cashews made me nervous. :nervous: I haven't tested them yet, but I want to. I am planning to test macadamia nuts first....but I need to get over my cold before I do any testing! I'm glad you figured out some foods to avoid to help you not feel as poorly.....

    @xrunner ~ I wonder if you are reacting to chemicals in the foods (eg biogenic amines like histamine). For some people you can eat a small amount of a biogenic amine food and do fine....the more you eat, the more likely a problem can occur. This is also true for lactose (a milk sugar).

    Cheese is high in histamine, chili might be if tomatoes are used and if the meat isn't super fresh...or is leftover---been in the refrigerator... (it seems I have problems with most animal protein--except very fresh fish--which I suspect is due to histamine issues). Corn isn't high in histamine, but it is very high in putrescine. I took ONE bite of corn last fall when I tested it and I had a headache for a day and a half!!

    Best,
     
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  16. anniekim

    anniekim Senior Member

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    Is it possible if you never had the anti virals then treating the food sensitivities would never have had such an positive effect? I appreciate it is not possible to answer this, just ruminating...
     
  17. Timaca

    Timaca Senior Member

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    Hi anniekim~
    I like your thinking about it.....and for sure we will never know.

    I do know that both antibiotics and antivirals have helped me. And since that is what I tried first that is the only path I will know.

    I also know that watching various foods makes a difference. I just came back from a trip to China where my worst days were the days I ate just a little off my normal diet (small amounts of wheat, rice and small amounts of Chinese food). I ended up with significant GI bloat, mild headaches and joint pain. My best days were when I ate only my "safe" foods.

    Fortunately, since I have some idea of my food intolerances, I knew not to eat too much of any food that might give me issues and so I was still able to function at a pretty high level. I did a LOT of walking around. Miles and miles. And even climbed 600 feet vertical up some stairs at an elevation of 15,000 feet!! I was certainly very tired that day but perfectly fine (for me) the next.

    I continue to try to figure out the food issues.....I will be writing more on my blog about my trip and what I learned once I get over my jet lag. I was up most of the night last night.....due to being on China time. ;)

    All the best,
     

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