Visit the Microscopic Colitis Foundation Website
I've never tried D-mannose, but I know it's one of the ingredients in "Lectin Lock" (don't know anyone who has tried this product). For me, I find my reactions so scary that I really prefer to avoid my problematic lectins. I did buy a product called Histame, but haven't tried it yet. It's contains diamine oxidase (enzyme) - some people with histamine problems report that it helps. I imagine if you have chronic D there could be loss of natural DAO from gut damage and replacing it in a supplement form could help. Seems like a combo of D-mannose and DAO might be helpful.
Mary Beth
Can children have ME?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Peta,
I noticed your comment about your son acting out when he tries new foods. There is a group dedicated to using the gluten and casein (the protein in dairy) free diets to reduce/eliminate their childrens autistic behavoural symptoms.
Not saying your son is autistic, just that the behavoural aspects could make it worth following up.
http://www.gfcfdiet.com/
As you say, the blood test for gluten is notorious for false negatives. A lot of folk here have used Enterolab www.enterolab.com to confirm their intolerances. I don't know of any Aussies who have done this, but certainly folk from all over the world have successfully done it, so there is no reason you couldn't. It might be worth considering.
And finally welcome to our group.
Lyn
I noticed your comment about your son acting out when he tries new foods. There is a group dedicated to using the gluten and casein (the protein in dairy) free diets to reduce/eliminate their childrens autistic behavoural symptoms.
Not saying your son is autistic, just that the behavoural aspects could make it worth following up.
http://www.gfcfdiet.com/
As you say, the blood test for gluten is notorious for false negatives. A lot of folk here have used Enterolab www.enterolab.com to confirm their intolerances. I don't know of any Aussies who have done this, but certainly folk from all over the world have successfully done it, so there is no reason you couldn't. It might be worth considering.
And finally welcome to our group.
Lyn
Hi Tex,
Thanks for the cyrovac info. There is no doubt this is very bad for us all. In my area I only know two butchers now that don't buy all their meat already cryovaccd. It's a very worrying trend and makes it difficult for me to cater for J's diet.
Hi Mary Beth,
I confess that a lot of your discussion with Tex has completely gone over my head - that's okay. I'll catch up bit by bit, when I need to. I have just had an experience with J that has made me reflect on your comment regarding 'scary reactions' and also that you said there may be a connection between increased urinary output and mast cells. Josh is only 5 but some of his reactions have scared me deeply - particularly the amine ones. He becomes so self loathing, depressed and anxious, angry that I really fear for him if I can't address this. For the most part now, I know what foods to avoid and we do not get these reactions anymore. Unfortunately yesterday we had a minor disaster, food wise. A family break down (I won't go into it) meant that J was given a curry to eat, with strawberrys and a piece of chocolate. This is EXTREME diversion from his fodmap/failsafe diet. He was fine for 2 hours (ran around a lot) and then crashed. He literally rolled around on the floor, crying and was full of pesismissim etc etc. It was awful to watch. I decided that I might as well try a zyrtec for the first time. I wasn't able to give him one until before bedtime. What has surprised me is that for the first time he woke up with a completely dry nappy - I can't remember when that has happened last. I was expecting an overflow and many accidents today. He has been 'edgy' today...a little cheeky and defiant....but NOT depressed, sad....in fact pretty great...! Not one wet accident....So........perhaps the zyrtec helped him. It's hard to tell without having also let him go through the experience without a zyrtec (which won't be happening any time soon!).
Hi Lyn,
I certainly will consider something like enterolab - I've done things entirely though food elimination challenges and it is HARD work. This sounds too good to be true, I confess! I will definitely look into it. Thank you for your welcome too. I'm not sure about going gluten free / casein free. I've learnt by now to keep an open mind. However J is mostly at an acceptable 'baseline' and has gluten and casein everyday. To most people he would appear to be an above average intelligent 5 year old and normally functioning in everyway - I work really hard to help him with his diet so his emotions don't rule! It is when we give him too many amines, additives, wheat that we have clear trouble. But I'm only at the beginning of this journey and will not rule out any further changes.....
Thanks everyone!
Peta[/quote]
Thanks for the cyrovac info. There is no doubt this is very bad for us all. In my area I only know two butchers now that don't buy all their meat already cryovaccd. It's a very worrying trend and makes it difficult for me to cater for J's diet.
Hi Mary Beth,
I confess that a lot of your discussion with Tex has completely gone over my head - that's okay. I'll catch up bit by bit, when I need to. I have just had an experience with J that has made me reflect on your comment regarding 'scary reactions' and also that you said there may be a connection between increased urinary output and mast cells. Josh is only 5 but some of his reactions have scared me deeply - particularly the amine ones. He becomes so self loathing, depressed and anxious, angry that I really fear for him if I can't address this. For the most part now, I know what foods to avoid and we do not get these reactions anymore. Unfortunately yesterday we had a minor disaster, food wise. A family break down (I won't go into it) meant that J was given a curry to eat, with strawberrys and a piece of chocolate. This is EXTREME diversion from his fodmap/failsafe diet. He was fine for 2 hours (ran around a lot) and then crashed. He literally rolled around on the floor, crying and was full of pesismissim etc etc. It was awful to watch. I decided that I might as well try a zyrtec for the first time. I wasn't able to give him one until before bedtime. What has surprised me is that for the first time he woke up with a completely dry nappy - I can't remember when that has happened last. I was expecting an overflow and many accidents today. He has been 'edgy' today...a little cheeky and defiant....but NOT depressed, sad....in fact pretty great...! Not one wet accident....So........perhaps the zyrtec helped him. It's hard to tell without having also let him go through the experience without a zyrtec (which won't be happening any time soon!).
Hi Lyn,
I certainly will consider something like enterolab - I've done things entirely though food elimination challenges and it is HARD work. This sounds too good to be true, I confess! I will definitely look into it. Thank you for your welcome too. I'm not sure about going gluten free / casein free. I've learnt by now to keep an open mind. However J is mostly at an acceptable 'baseline' and has gluten and casein everyday. To most people he would appear to be an above average intelligent 5 year old and normally functioning in everyway - I work really hard to help him with his diet so his emotions don't rule! It is when we give him too many amines, additives, wheat that we have clear trouble. But I'm only at the beginning of this journey and will not rule out any further changes.....
Thanks everyone!
Peta[/quote]
Peta,
You might talk to his pedi about giving him zyrtec nightly to see if it helps to manage his symptoms. BTW, curry and chocolate are both histamine releasers, so that may explain his reactions. I have to be honest, I think the Failsafe diet (low amines, salicylates etc) is really a diet for mast cell problems. Sue Dengate was not the original author of the Failsafe diet, it was dietitians from Royal Prince Alfred Hospital in Australia. The symptoms and diet they describe go along with mast cell problems.
Mary Beth
You might talk to his pedi about giving him zyrtec nightly to see if it helps to manage his symptoms. BTW, curry and chocolate are both histamine releasers, so that may explain his reactions. I have to be honest, I think the Failsafe diet (low amines, salicylates etc) is really a diet for mast cell problems. Sue Dengate was not the original author of the Failsafe diet, it was dietitians from Royal Prince Alfred Hospital in Australia. The symptoms and diet they describe go along with mast cell problems.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer