R U avoiding foods U R allergic 2????

Discussion in 'Fibromyalgia Main Forum' started by monkeykat, May 4, 2009.

  1. monkeykat

    monkeykat Member

    Hi everyone,
    I'm just wondering how many people have completely avoided all foods they are allergic to and gotten major health improvements.

    If this is the case:

    1) What testing did you have done to diagnose the allergies?

    2) How did you go about eliminating foods?

    Thank you so much, Monkeykat
  2. Pippi1313

    Pippi1313 New Member

    Hi! An honest doc told me the common skin tests don't always catch food allergies. You can get a negative, when you're actually positive.
    He said sometimes the only way to know for sure, other than drastic tests like biopsies of internal tissues, is to eliminate the main allergy culprits, then add them back one at a time.
    For me it's gluten. It makes me really sick! And there's a long list of words I find on food labels that mean gluten-hiding-under-a-different-name.
    When I manage to be completely gluten-free (which is much harder than it sounds), I feel better physically and mentally. I even have less brain fog.
  3. monkeykat

    monkeykat Member

    thanks Pippi!

    I've had skin prick test and blood work and also muscle testing to discover allergies and sensitivities. I didn't know that about skin prick tests--interesting.

    I don't have gluten allergies so that is fortunate but I have quite a few others. I probably need to try to find other names for some of these...it's hard when I go out to eat b/c I have so many allergies and it's hard to completely avoid all of these as they are hidden in many foods.

    I'm allergic to:
    Fruit Cocktail

    Keep Hope Alive, Monkeykat
  4. jasminetee

    jasminetee Member

    Just wanted to say Hi! Sorry I haven't been keeping up with my email.

    I had Serial Endpoint Titration done over a period of a year to test for allergies. We found many, similar to your list. I stayed away from them for up to a year and found that it didn't help me. Otoh, I do have to watch what I eat.

    They actually called them food and substance sensitivities, not actual allergies where I went. A friend of mine who has no CFS/FMS had this done and she ended up with a long list too.

    I don't know if that helps or not. I'm still extremely sick and in intractable and getting worse all the time.

  5. Shananegans

    Shananegans New Member

    Wow! That's a crazy list of allergies, you just made me feel lucky for having the few allergies that I have. I have Celiac and I'm also allergic to rice, preservatives and am lactose intolerant.

    I do the best I can to avoid the gluten and lactose, but I have to avoid the rice and preservatives as they give me the worst reaction. Rice will send me into anaphylaxis and preservatives knock me out for days.

    Once I found the gluten issue, 90% of my FM symptoms went away to the point were I think it was Celiac all along and not FM. Avoiding my trigger foods has done wonders for me and if I do ingest some gluten or lactose or preservative I feel like crap all over again. Food allergies are a crazy thing. I would have never thought the food we eat could have such an effect over us, but with all the garbage they put in food, it really doesn't surprise me.

    Sorry to hear you have so many allergies! Good luck to you.
  6. Pippi1313

    Pippi1313 New Member

    As if the foods weren't bad enough on their own, it's nearly impossible to tell if it's really the food or an additive (or contamination) that's making us feel lousey! I'm almost afraid to eat!

    That sure is an impressively awful list of food allergies!!!

    I feel very fortunate to only have to watch out for gluten.
  7. msSusan

    msSusan Member

    I have been trying to keep up with avoiding offending foods but have a hard time because of food cravings. Possibly too many carbs can cause pain also.

    I have had some luck with pain reduction but I am still achy (muscle/soft tissue and headaches?) to some degree every day. In addition to food elimination you can try food combining or rotating techniques.

    I don't seem to be able to eat wheat/gluten, eggs, corn, soy, nuts or SUGARS. Even fruit, honey, maple syrup, agave, brown rice syrup cause more pain. I've been trying stevia and small amounts of fruit.
  8. monkeykat

    monkeykat Member

    Hi everyone,
    I am not having a good day so I'm having trouble reading and comprehending posts. I'm so EXCITED to hear from all of you.

    I really want to know what others have tried (before I put a lot of stock in how much changing diet with help my CFS). I have a friend that went from severe CFIDS to level 80 by eliminating foods she was allergic too so I'm wondering how many people that is working for.

    Hi Tee - no problem - we communicate with @ other when we can -- it's really nice to be in touch again:)

    I will read your posts more thoroughly when I have a functioning brain and then respond. From what I skimmed, I find it very interesting that people have had quite a variety of tests that I haven't heard of. Also, everyone is SO different:)

    I'll respond more later...Monkeykat

  9. jasminetee

    jasminetee Member

    I'm pretty good about answering in here. I'm bad about email with everyone these days. I think about you a lot though and the convos we've had. :)

    The Serial Endpoint Titration is when they inject foods and substances into your arms and then record the reactions on your arms a few days later. I had many series done over the period of a year and we tried about a hundred foods and substances or so it seemed.

    I also had regular allergy testing done where they scratch the substances onto your back but all they found was dust mites and grass and yes dust makes me sneeze alot but I can sit in grass with no problem unless I have shorts on, then I get some red marks but they go away in a few hours.

    I have tremendous willpower and really stayed away from stuff we thought was causing me problems but I only continued to get worse. I've slowly added back most of them now like allowing myself some soy for instance.

    The problem with CFS is that most things set us off and our responses are always changing. That's what the CFS specialists and allergy specialists have said that I've listened to. They say you might not be able to tolerate oranges today and yet all last month you could and then you can again in another month etc....

    However, it's worth a try because as you related, it helped your friend and we all respond differently.


    [This Message was Edited on 05/05/2009]
  10. Suze

    Suze New Member

    I suspect that not nearly enough people with FM/CFIDS have seriously looked at what they're eating. Even I, who have been tweaking my diet for years, didn't fully accept until quite recently that I had to *completely* eliminate all the nightshades (tomatoes, peppers, eggplant, and potatoes), not just cut down on them. And as I explained in a post not too long ago, I discovered the hard way that artichokes and okra contain solanine, the evil culprit in nightshades.

    I gave up sugar 13 years ago, so that's no longer a big deal for me. I did, however, start eating small quantities of very dark chocolate last year......until I found out that the chocolate, along with popcorn, whey protein, and plain non-fat yogurt (and the small amount of Sucralose/Splenda in the Atkins shakes I drank rarely), were causing some very unpleasant digestive problems. I eliminated all of those foods, and the problems disappeared.

    More recently, I found myself in almost constant hip and knee pain. I was exhausted, and felt like I was turning into a cripple. I looked at my diet, and realized I'd been eating more peanuts than usual. But surely peanuts didn't cause joint pain! Well, I looked up foods that are suspected in arthritis, and sure enough--peanuts were on the list. So were oranges and grapefruit. I'd given up oranges years before because I thought they were giving me joint pain, but I kept eating grapefruit--usually one a day in winter.

    I immediately gave up the grapefruit and peanuts, and within a couple of days experienced a huge reduction in my joint pain and a startling surge of energy. Really, it was quite remarkable.

    So yes, eliminating some foods has made a difference in how I feel. And I think everyone should do some diet sleuthing.

  11. monkeykat

    monkeykat Member

    Hey, Sorry it takes me a while to get back to everyone - my health is bad and quite a rollercoaster. I'm feeling good enough to read & respond today - I'll respond to everyone in one message

    Hi Pippi - Yeah, skin tests didn't catch all the sensitivities I have (over 100). Scratch tests only caught about 10 allergies. Interesting about getting negatives when you are actually positive. Yes, gluten can cause major problems--glad I'm not having trouble with gluten--have enough things to eliminate from my diet. Glad that eliminating it helps so much but then it's just being consistent.

    I agree that it's nearly impossible to tell if it's really the food or an additive, preservative, petrochemical, antibiotic, hormone, mold toxins or something else in the food that's making us feel lousey! I'm allergic to mold toxins so there's a lot of foods that I react to b/c they tend to carry more mold toxins: peanuts, corn, mushrooms, melons, etc. I probably am not allergic to the food itself. Also, I found that sometimes I react to tortilla chips and sometimes I don't -- I'm wondering if it depends on the amount of mold toxins in the batch or brand of chips.

    Hi teejkay,

    I'm so sorry you are still so ill and getting worse. I have gotten worse this year as well. My health ranges b/t level 10 and level 30 from hour-to-hour and day-to-day so it's like a daily rollercoaster.

    Was it the antiviral trial that caused this low level of health for you. I know that your health was declining while you were on that. I think about you a lot as well but I'm not too good with email these days either. It's hard for me to get on here as well so please be patient with me.

    Thanks for explaining Serial Endpoint Titration. I have tons of sensitivities but only a handful of allergies so I know what you are talking about.

    I don't have consistent willpower so I'm not as good at completely avoiding stuff and that's why I'm wondering if others who are more faithful in avoiding things have gotten their health back by eliminating food allergies. It was helpful to know that you were consistent but you only got worse. My assumption is that what works for one person doesn't always work for someone else.

    Avoiding foods that I'm allergic to seems to decrease # of symptoms and symptom severity but it does not improve my overall functional level or get rid of my ME/CFIDS.

    That was interesting what you said about how our responses are always changing. I find that to be so true. One month eating white potatoes will leave me bedridden for 4-6 hours and suffering terribly but the next month I will eat them and find that I have NO reaction whatsoever. That confirms my suspicion about my food allergies as well b/c they do seem to change each year on me.

    Hey Shananegans -

    That's fantastic that 90% of your FM symptoms went away when you started to avoid gluten. Amazing! It's funny b/c I don't have any of the allergies you have. It's weird how our bodies react to different things--I wonder why? My allergies are hard to avoid as well. It's so crazy, isn't it?

    [This Message was Edited on 05/10/2009]
  12. monkeykat

    monkeykat Member

    Hi Caledonia --
    Thanks for sharing about electrodermal screening. I haven't heard of that. that sounds very cool.

    I have found the same thing to be true as you - it helps decrease my symptoms but has not improved my functional level or cured me of my ME/CFIDS. We actually have some allergies/sensitivities in common:)

    Where do you get the IGG powder???

    Hi msSusan -

    I attempted food combining and rotating techniques but my functional level is too low (range from level 10 - level 30) and too inconsistent to functional do this without someone else to cook or get me food.

    I also use stevia. I love it!!!

    Hey, I like the name caledonia - where did you come up with that name?


    Hey Suze --

    My doctor told me that the nightshades are causing me increased inflammation in my body which makes my pain and soreness worse.

    I gave up sugar last summer and noticed a major decrease in depression/anxiety symptoms as well as less mold infections in my body.

    I think it's the mold toxins in peanuts that I'm reacting to and then I end up with weird mold infections in my body that cause a lot of pain. Then my naturopath will put me on one of Dr. Overman's herbs for various mold infections and all the pain and symptoms will go away.

    I think your point is good that various foods are affecting us but it's not always an allergy or sensitivity but something in the food that causes other problems.

    I guess we need to be sensitive to how various foods make up feel and discontinue those foods -- not just foods that we are having allergies and sensitivies too.

    Thanks everyone! Great insight and helpful ideas regarding food!

    Keep Hope Alive (I'm trying) -- Monkeykat

  13. hatbox121

    hatbox121 New Member

    I am currently in the process of eliminating some things from my daughter's diet. She complains of joint and muscle pain alot so it may help with that but the main reason is different. She has an autism spectrum disorder and duarte galactosemia(a metabolic disorder) so I am eliminating glueten and casien products from out diet. Yep OUR diet. So maybe it'll help me too....who knows. I do know that it's hard to find glueten AND casien free products but I'm trying. I am starting with supper and allowing "regular" food at school, then I'll re-do lunch and finally breakfast. I'm hoping it helps her. While it's hard to change over to all new things, at the same time it's one of the easiest things to try. Much better than going through a new list of meds and trying for one with the least side effects or most improvements. I'd rather try something less harmful than pumping her with all new meds. If anyone knows of a good gluten and casien free website, please let me know. Hope your trials help!!
  14. monkeykat

    monkeykat Member

    hi hatbox,

    thanks for sharing. i'm so sorry about the struggles that both you and your daughter are having. i used to work as an OT with children in the schools and there are so many children within the autistic spectrum and also ADD/ADHD.

    that sounds smart to start changing only one meal at a time. i don't know of anything about gluten or casien free diets--sorry! Hopefully else will know something...

    good luck, Monkeykat