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  1. #11
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    Do you think he could be lectin intolerant? Lectin is in grains and legumes.

    Just wanted to say that I think your son is really lucky to have a Mummy that is working so hard to get to the bottom of things for him.

  2. #12
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    Quote Originally Posted by erinn View Post
    Hey Jakes Mum! Cant believe I missed this thread before - I'm off to have a look at your blog. We are additive free (mostly) but soon to start failsafe. Do you think the effects you found could be withdrawals. It must be super hard to see them getting worse, but I read something that said the kids often get better quickly, then seem to get worse around the end of the first week and through the second week, and then seem to pick up again after week 3-4. They say its the body detoxing essentially and going through withdrawals from what its missing.

    There is a facebook support group run by Sue Dengate that has lots of helpful info - not sure if you've seen it? I can pm details if you are interested.

    I'd also love to know if you did it with the help of a dietician or not? And if not did you find it manageable? We are about to start it but will be doing it solo as we cant afford a dietician at the minute and while our GP is on board and happy to support us she wont refer to a dietician in case the food thing doesnt work long term and we need to see further specialists. Gp is happy to support us but upfront that she knows nothing about these elimination diets and I must admit I'm a bit nervous about doing it alone
    Hi Erinn,

    I don't think it was withdrawal symptoms for us. We were already doing low amine, no additive or preservative and moderate sals and glutamates for several weeks before the diet. What we changed going on the diet was also eliminating dairy and gluten (so wheat, rye, oats and barley), which for us meant we had heaps of rice, legumes and potatoes instead.

    Within days of starting the diet his hit a snotty nose that didn't clear till a few days after we stopped the diet, and his eczema got worse within days till getting unmanageable - again, until stopping with the diet.

    We're still doing low amine, low glutamates (only tried high glutamates yesterday for the first time with corn), mostly moderate sals (as we do now consume onions, parsley and dill, and the corn we tried was high sals as well). And we're still preservative and additive free, but we're also nightshade, rice, and legume free.

    When he was scratching so badly at the end of the diet I have him anti histamine which had preservatives and flavours in it and he was a nightmare for 3 days - that was after not consuming any additives/preservatives for well over 2 months, so I do think he might be very sensitive to them. Then again he's very sensitive to everything!

    We did it with a dietician who claimed to be experienced with food intolerance, but it was a waste of $140 as I knew more than her! She pretty much was clueless. She didnt even knew what histamines were, which I'd expect from someone who advertise themselves as specializing in and experienced in food intolerances. If I were to do it again I'd email the fed up people and ask for their recommendation.

    I didn't find the diet too hard other than all the rice and legumes which I hate, and the lack of bread which I love. Cooking is actually easier because you're so limited :-D Jake was eating heaps but he's always been a really good eater and loves chicken and veg, which we had lots of. It was certainly manageable, I was frustrated and lost because it didn't help him. We are still very limited now but I have NO qualms at all. But we've been limited with different diets for over two years ago, so I guess I'm somewhat used to it!

    Please pm me the details for the group, that'd be great. I don't have Facebook but DP does!

    Good luck with the diet! I hope it works for you. For me keeping a food diary really helps.

  3. The Following User Says Thank You to jake's mum For This Useful Post:

    erinn  (22-06-2012)

  4. #13
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    Quote Originally Posted by MummaOJ View Post
    Cant wait to read your blog, we are doing failsafe with DD who is nearly 3. Just wondering if you have been taking probiotics and fish oils - remember once the allergen has gone the gut needs to repair or it will start becoming intolerant to other things.
    Cooking sux doesnt it, I think we are nearly there though, waiting on allergy test results.

    Sent from my LG-P500 using BubHub
    Hey MummaOJ,

    Good luck with the diet! Jake's been taking probiotics for months now. We haven't been doing fish oil as we tried them when he was a baby and it made him worse. Recently learning about histamines I learnt that fish is very high in histamines so that might be why.

    Good luck with the allergy testing. Our allergist was a pain and tested him only to nuts and sesame seeds even though we already knew he was allergic to nuts. He refused to test him to anything else.

  5. #14
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    Quote Originally Posted by erinn View Post
    Jakes Mum, your poor little boy really has had the run around with it. Sorry to hear it has affected him so badly Very scary about the lips swelling and stuff. I must admit that would probably frighten me off doing the diet esp if you werent having those issues before. Just wondered I think I saw on the first page that you mainly only cut amines not the other 2. Could it be that you are eating more of the other stuff to compensate for no amines which is then triggering a reaction in him?
    I really don't know what did it - he was off cortisone then for a few days though, so I think it may have been the same thing that didn't go away even with cortisone, made his lips go crazy without it. I'm suspecting the legumes but I guess I'll never know.

    We're still doing low amine, low glutamates, mostly moderate sals and no preservatives/additives and he's fine now. I don't think it was the sals because he's having some high sals now and he's fine, and the year he didn't have eczema he was having HEAPS of high sals, but our diet was low in amine, glutamates, rice and legumes. And he's never had behaviour problems which I understand are very common with sals sensitivity.

  6. #15
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    Quote Originally Posted by OurLittleBlessing View Post
    Do you think he could be lectin intolerant? Lectin is in grains and legumes.

    Just wanted to say that I think your son is really lucky to have a Mummy that is working so hard to get to the bottom of things for him.
    Thank you :-) it's so hard and I come close to crying and giving up too often. Often I think I'll never find out what it is. Then I try to remind myself that all in all he is a happy healthy boy that rarely even catches a cold so I should be happy, it's just eczema. It's just that I hate putting cortisone on him so much.

    I thought about lectin! Only read about recently though so I don't know much about it, I need to do more research. I never thought legumes would an issue so never looked into them until doing the RPAH diet and overdosing on them :-) ill def try and learn more about it.

  7. #16
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    No worries, I'm pretty sure I am lectin intolerant myself.

    I've never been a very healthy person, starting with eczema as a child etc etc.

    I am eating a diet very similar to the paleo diet and my health is improving by the week. My husband and children also have intolerances. At least I like cooking!

    I can not rave enough about the difference a change in diet is making for our WHOLE family. TOTALLY worth the trouble.

    Don't worry, you will figure it out. It takes time. I've been on this journey for a very long time now, but we are pretty much all sorted now.

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    Gothel  (07-07-2012)

  9. #17
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    We got full IgG and IgE testing, expensive but hopefully worth it.

    What is the facebook group, I would be interested too.

    Sent from my LG-P500 using BubHub

  10. #18
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    Quote Originally Posted by MummaOJ View Post
    We got full IgG and IgE testing, expensive but hopefully worth it.

    What is the facebook group, I would be interested too.

    Sent from my LG-P500 using BubHub
    I wanted to do it for Jake, but when I had a look on the website of the company which dies the comprehensive one (the 99 items) it was written it was for kids aged 3 or 4 and up. I called them and they said they don't suggest testing a 2.5 year old because it's not reliable for kids under 3 and best after 4 years of age, so we didn't do it.

    If I may ask a million questions... How old are your little ones that you're testing? Do they have eczema too? Are both via blood test or are you doing skin prick testing for the allergies?

  11. #19
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    Quote Originally Posted by OurLittleBlessing View Post
    No worries, I'm pretty sure I am lectin intolerant myself.

    I've never been a very healthy person, starting with eczema as a child etc etc.

    I am eating a diet very similar to the paleo diet and my health is improving by the week. My husband and children also have intolerances. At least I like cooking!

    I can not rave enough about the difference a change in diet is making for our WHOLE family. TOTALLY worth the trouble.

    Don't worry, you will figure it out. It takes time. I've been on this journey for a very long time now, but we are pretty much all sorted now.
    I wish we could do a paleo type diet, but we both def react badly to histamine which would make it very very limited.

    I read a bit about lectin, the only thing I'm not sure about it that he doesn't seem to react to wheat at al... But he does to many other things with lectin. So confusing! I wish he came with a manual and a warranty :-D

  12. #20
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    Have you heard of the GAPS diet? It works on 'healing and sealing' the digestive system. It's pretty full on in some ways, but realistically it's probably not much harder than what you are already doing.

    The testimonials are amazing and most people go on to reintroduce things they were previously intolerant to, after some time on the diet.


 

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