The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Extreme food sensitivities - any can relate?

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by mysisalina, Jun 6, 2016.

  1. mysisalina

    mysisalina

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    Hi everyone, I'm looking for anyone that can relate to the following food sensitives. My young daughter has always had some sensitivities (gluten, dairy/casein, anything artificial, etc.) We have discovered even more sensitivities (salicylates, phenols, glutamates, grains, sulfur/ammonia, possible candida, nearly any "sugar" as in fruits, sweeteners) We have two exceptions to these rules. This leaves us with very few options. We are waiting for 23andme results and did a hair analysis with Dr. Amy Yasko and have begun slowly working on the protocol. She's had problems nearly since birth with this stuff.

    Instead of Sisa screaming 80% or more of the day with behavioral problems and stomach pains, they seem to now be limited to every two hours almost on the dot and it's killing me. I'm now wondering if it's hunger in addition to inflammation/pain/constipation/diarheah.

    What she *seems* to do well with:

    spaghetti squash
    butternut squash
    peeled white potatoes
    leeks
    eggs
    "clean" chicken (home raised or organic with no "water solution") fast cooked dark meat
    organic elk and beef
    ghee
    lard
    pink Himalayan sea salt
    baking soda
    chamomile tea
    ginger root & ginger tea
    panela (home made pure cane syrup)
    homemade goat milk yogurt (somehow this works??)
    Carlson's unflavored cod liver oil
    GABA Balance and Valerian Root

    She was eating celery, then I found it listed as the #4 highly sprayed pesticide food and for whatever reason she will not eat organic celery (and the neighbor's pigs who eat "everything" won't even eat the organic celery. ?? weird)

    I don't think I'm forgetting anything. Fortunately she likes her food but can anyone relate to ALL of this? It is way too much. Unfortunately we are currently very much in poverty which limits any testing/supplementing I can do right now. This should, hopefully, turn around in the nearish future, something we are working on at least as I am sure additional lab tests and supplementation could help. I'd like to try some molybedenum and maybe digestive enzymes but, for example, the digestive enzymes often have papaya and I am worried as she can't eat papaya anymore.

    If anyone can relate to all of this, any recommendations? With the addition of GABA and valerian root she finally has improved enough to where I can think a little bit and try to "journal" behaviors, which this week I am seeing the every two hour trend. It is so hard as I can barely even get myself out of bed in the mornings. She is really very well provided for, well stimulated, we live in the forest on a farm which is wonderful for her. But in the meantime I wish I had some ideas on the diet. To possibly need a small bit to eat every two hours is a hard one with so many limitations!
     
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Perhaps she should be screened for IBS and Crohn's disease or even an obstructed bowel? I don't know much about those things but it seems that they might be worth checking out. Unless that has already been ruled out of course.

    It's horrible for you to endure and quite tiring but it must be truly awful for your daughter to be experiencing this.
    It can't be easy.
     
  3. mysisalina

    mysisalina

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    Thank you for the kind words. We are "going through the ropes" with a pediatrician and that is getting no where as no one seems aware of the issues I question. The big helps are "giver her maalox and go to thr health department dietician" and then that it is her behavior/developmebt/my parenting. We are trying to get her to a biomedical doctor a few hours out of town. I know for a fact each of these foods cause certain reactions and my intuition says there must be something underlying it all. I dont drive and my husband has to take time off work every time we need something or help/or appointments and that makes it even harder because of lost income. I was doing some work from home but can't manage anymore to even do that. In the moment I just wish there were a couple more items she coukd handle eating. I'm also hoping her 23andm egenetic results may have some enlightening answers.
     
    MeSci and Snowdrop like this.
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    I found this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3056499/ with regard to IBS and genetic markers. Again I don't personally know about any of this. I'm sorry to here of your situation. It's unfortunate when the diagnosis is slow in coming but the suffering doesn't abate.

    It's shameful of Dr's to immediately blame the patient/parent because they can't find what's wrong right away.

    Clearly something is not right. Meanwhile in case you have not seen it here's a link to a crohn's and colitis site: http://www.ccfa.org/what-are-crohns-and-colitis/ At a glance it looks like you are doing some of the things they suggest in regard to food.
     
    Paintmyturquoise and MeSci like this.
  5. ahmo

    ahmo Senior Member

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    Maybe a long shot, but many of us have various degrees of mast cell problems. Sometimes this can lead to intolerance of almost all foods. Maybe @Gingergrrl can give you some resources. I have mast cell references, but not for the more extreme situations. Good luck working this out.
     
    Gingergrrl and Jennifer J like this.
  6. panckage

    panckage Senior Member

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    @mysisalina I have similiar food intolerance issues all though mine seem to be food specific (e.g. Wheat, soy, all spices, broccoli, Bok choi and many other things). I don't have general problems like with starch or anything like that.

    Unfortunately the only thing that has really helped me is to completely limit my diet. Its no longer what food to avoid, it is now about ONLY eating food do I know won't cause me issues and stick with those

    I was hoping to find a link between the intolerances but I haven't been able to find anything. My doctor put a probe in my but and confirmed IBS but that's about it. I'm thinking of seeing a nutritionist (maybe there are some patterns that could help suggest foods I would be OK with?).

    As it is the only meat I can eat confidently is Superstore black forest ham. Even ground beef and pork steaks give me issues. There must be an additive (soy?) that causes the issues but often the companies don't even know

    I'm definitely jealous of the farm situation. I long for pure food so at the very least I can be aware if the problem is the actual food or just an additive. It's really frustrating. Peanuts give me problems but then even peanuts still in the shell say that they may contain soy. How am I supposed to figure these things out? Lol


    Good luck!
     
  7. Paintmyturquoise

    Paintmyturquoise

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    Yeah, I can relate, big time

    Chicken
    Coconut wraps
    Pumpkin
    Spaghetti squash
    Lamb
    Tiny quantities of zucchini
    Medium quantities of buk choy
    Honey

    That's about all. :( it's driving me nuts.

    Shouldn't even be having honey. I am curious about trying some of the items on your list. Butternut is fairly high FODMAP, have you tried Kent?

    Does she have digestive symptoms like diarrhoea as well? And stomach pain?

    She's probably hypoglyemic. I can't go more than two hours without food/electrolytes/honey.
     
  8. rosieness

    rosieness

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    I have severe intolerance to many foods. I wish I could help more, but for me it's largely been trial and error, trusting my instincts. Keeping a journal is a great help, I was also lucky at the outset to find an allergist and nutritionist at a specialist allergy clinic who believed me and helped me to identify foods I hadn't thought of that I could safely eat.

    One or two things they helped me identify were wild foods like game meats; quinoa that botanists regard as a seed but acts as a grain (it's also regarded as low in phenols and is filling), and other alternative starchy foods like Yam - not sweet potato - but Ghana, Brazilian, White, Yellow or Soft Yam.

    Afro Caribean and Asian shops are a good source of inspiration for finding new foods. Food Family charts help me to think outside the box too.

    Cleaning up my environment of nasty chemicals from cleaning products, toiletries, perfumes etc has also been really important.

    Do hope you find some proper help and answers soon and that meantime you will find one or two more extra items that will help you both.
     
  9. leela

    leela Slow But Hopeful

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    Couchland, USA
    Gingergrrl likes this.
  10. Gingergrrl

    Gingergrrl Senior Member

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    Sorry I totally missed this thread until today and am not sure where the OP is located? If in the US, I can definitely give you some resources on MCAS so please send me a PM. Am not saying it is MCAS but is definitely worth investigating IMO.
     
    Paintmyturquoise likes this.
  11. kelly8

    kelly8

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    I know this thread is older, but I also can relate. It seems later in life but I'm having the same issues. I have reactions to everything! Not just food but now things in my environment. I would second investigating the mast cell thing. I had a gi diagnose me with this and I've been taking h1 and h2 blockers which help a small amount. I'm also following the yasko protocol and plan on doing some gut testing through my dr as I feel mast cell is the result of a problem and not the cause...
     
    Jennifer J and rosieness like this.

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