This disease just gets to you. It's so hard to see my baby suffering. Today was not a good day for her. There is so few foods she can it. Soy does not look good either, beans now look like a problem. Yesterday we had hamburger that had a little more fat in it than I usually by and she had a problem with that too.
The dietian from Leap wants me to start her on a three day rotation, and frankly I don't think she can give up rice. She eats it every day in some form.
She tolerates, Rice in all forms, potatos,(potato chips) lamb, turkey, low fat hamburger, pork, some fish ( still figuring that out) sunflower seeds, pin nuts, walnuts, almonds and almond butter, some fish, garlic, ginger, basil, dill, carrots, asparagus, green beans, apples and watermelon, and coconut. She not big on friut and olives, mustard, brown rice syrup. All squash as I can tell.
Thats it. If anyone has some more suggestions that would be great.
roni
Feeling down
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moremuscle
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Hi Roni,
Does Emily eat steak? Eggs? Pork Chops? Meatloaf?
Does she like fruit smoothies? I know you said she doesn't do too well with fruit but perhaps some frozen berries and 1/2 banana, a little coconut milk (se sure to get one w/o bad additives (I think Thai Kitchen coconut milk is good)). You can also mix in a handful of nuts.
I think you suffer as much or more than Emily
Roni, hang in there, it's going to get better. You are doing so many things to help her - this is just a phase you two are moving through.
Love,
Karen
P.S. Be careful not to overdo the nuts - a lot of us find we can only tolerate a few raw nuts. Almonds seem to be a favorite with many - I also like Walnuts.
Does Emily eat steak? Eggs? Pork Chops? Meatloaf?
Does she like fruit smoothies? I know you said she doesn't do too well with fruit but perhaps some frozen berries and 1/2 banana, a little coconut milk (se sure to get one w/o bad additives (I think Thai Kitchen coconut milk is good)). You can also mix in a handful of nuts.
I think you suffer as much or more than Emily
Roni, hang in there, it's going to get better. You are doing so many things to help her - this is just a phase you two are moving through.
Love,
Karen
P.S. Be careful not to overdo the nuts - a lot of us find we can only tolerate a few raw nuts. Almonds seem to be a favorite with many - I also like Walnuts.
Fat content
What would happen to me before my small bowel got LOTS better would be that I'd HAVE the reaction almost immediately after eating a fatty or oily meal, but the reaction itself was to something I'd had a day or so before.
My newly diagnosed sister is going through this very same thing right after she eats at our favorite diner where we always have veggies cooked in olive oil with white rice and catfish, fried in cornmeal or grilled.
Also, I really think that she needs to get off soy, not that she eats all that much of it. Just told her today that I'm going to get her specimen tested for soy since it's still at the lab. Doubt they still have mine as it's been over a year, and they toss em at 6 months, I think. I'm already off the stuff anyway.
It looked to me like Emily eats LOTS more variety than I do, actually, so I'm a bit confused. Are you talking about processed or teenager type food? Heck, don't they still mostly eat pizzas!! Ha!
Know what you mean about watching someone struggle getting this diet to work -- much harder watching Sis than doing it myself.
Oh, have you tried putting the more ripe bananas in the freezer? You can pull one out and eat it frozen, and it tastes BETTER than ice cream to me.
Back on the old board, someone suggested rolling them in crushed nuts, if you'd like to try that.
Know what MIGHT be fun -- have a few of her buds over for a contest to see who could make the most interesting smoothies. You could set some rules as to what ingredients would be permissable, and set em loose after you read any labels -- like on fruit juice bottles, for instance -- no added ingredients allowed.
Wouldn't surprise me if some of the kids hadn't already experimented with these at home.
Maybe you could be the judge! Ha!
Hmm, guess the prize would be getting to try everyone else's creation.
This way, they'd all be sick together. Haha!
Welp, maybe my idea is a little bit square, but don't kids still like to do things in the kitchen these days?
Ya know what? Maybe Emily could get some neat food prep things for graduation presents. Have you been looking around at some of the things that are available nowadays. Some of the more colorful ones look like they belong in a college dorm -- smoothie machines, etc.
Wow, I sure wish I had more to offer, and I'm still a little bit confused as to what she's reacting to unless it's really the soy. If you've already ordered that test, it should be ok to remove it, just to see if Emily felt better. That's my best shot right now.
Yours, Luce
My newly diagnosed sister is going through this very same thing right after she eats at our favorite diner where we always have veggies cooked in olive oil with white rice and catfish, fried in cornmeal or grilled.
Also, I really think that she needs to get off soy, not that she eats all that much of it. Just told her today that I'm going to get her specimen tested for soy since it's still at the lab. Doubt they still have mine as it's been over a year, and they toss em at 6 months, I think. I'm already off the stuff anyway.
It looked to me like Emily eats LOTS more variety than I do, actually, so I'm a bit confused. Are you talking about processed or teenager type food? Heck, don't they still mostly eat pizzas!! Ha!
Know what you mean about watching someone struggle getting this diet to work -- much harder watching Sis than doing it myself.
Oh, have you tried putting the more ripe bananas in the freezer? You can pull one out and eat it frozen, and it tastes BETTER than ice cream to me.
Back on the old board, someone suggested rolling them in crushed nuts, if you'd like to try that.
Know what MIGHT be fun -- have a few of her buds over for a contest to see who could make the most interesting smoothies. You could set some rules as to what ingredients would be permissable, and set em loose after you read any labels -- like on fruit juice bottles, for instance -- no added ingredients allowed.
Wouldn't surprise me if some of the kids hadn't already experimented with these at home.
Maybe you could be the judge! Ha!
Hmm, guess the prize would be getting to try everyone else's creation.
This way, they'd all be sick together. Haha!
Welp, maybe my idea is a little bit square, but don't kids still like to do things in the kitchen these days?
Ya know what? Maybe Emily could get some neat food prep things for graduation presents. Have you been looking around at some of the things that are available nowadays. Some of the more colorful ones look like they belong in a college dorm -- smoothie machines, etc.
Wow, I sure wish I had more to offer, and I'm still a little bit confused as to what she's reacting to unless it's really the soy. If you've already ordered that test, it should be ok to remove it, just to see if Emily felt better. That's my best shot right now.
Yours, Luce
Roni,
With all her allergies, if Emily can eat watermellon and apples, without having problems, I would be very surprised. Watermellons, especially, contain all sorts of chemicals that cause problems for many of us. It sems like a "fun", and harmless food to eat, but it makes me sick every time. The fiber in fruit and vegetables are likely to keep her colon irritated, and slow down, (or maybe preempt), the healing process.
If I were in your shoes, I would remove all these items from her diet, until her BMs have become normal, and her colon has had a couple of months to heal: sunflower seeds, pin nuts, walnuts, almonds and almond butter, garlic, ginger, basil, dill, apples, watermelon, and mustard. I'm not sure about the asparagus, but that probably should go, also.
I realize that's a tough requirment, but I really believe that it's the quickest path to relief, (possibly the only path to relief, unless she's willing to try a med). Her gut needs an opportunity to heal, and that will not happen, as long as she continues to ingest all those known irritants. After she has been doing well for a while, then you can re-introduce those items, one at a time, if you want to see if she has healed enough to tolerate them. Comlete healing, though, will take months, and possibly a year or more. It will not happen in a few days.
This is my opinion, and since it's free, you can take it for what it's worth, but it's what I had to do, to get straightened out. After over two years of healing, my gut still shows damage, (according to Enterolab's fecal fat score), and I can't tolerate any of the items on that list without experienceing problems.
Tex
With all her allergies, if Emily can eat watermellon and apples, without having problems, I would be very surprised. Watermellons, especially, contain all sorts of chemicals that cause problems for many of us. It sems like a "fun", and harmless food to eat, but it makes me sick every time. The fiber in fruit and vegetables are likely to keep her colon irritated, and slow down, (or maybe preempt), the healing process.
If I were in your shoes, I would remove all these items from her diet, until her BMs have become normal, and her colon has had a couple of months to heal: sunflower seeds, pin nuts, walnuts, almonds and almond butter, garlic, ginger, basil, dill, apples, watermelon, and mustard. I'm not sure about the asparagus, but that probably should go, also.
I realize that's a tough requirment, but I really believe that it's the quickest path to relief, (possibly the only path to relief, unless she's willing to try a med). Her gut needs an opportunity to heal, and that will not happen, as long as she continues to ingest all those known irritants. After she has been doing well for a while, then you can re-introduce those items, one at a time, if you want to see if she has healed enough to tolerate them. Comlete healing, though, will take months, and possibly a year or more. It will not happen in a few days.
This is my opinion, and since it's free, you can take it for what it's worth, but it's what I had to do, to get straightened out. After over two years of healing, my gut still shows damage, (according to Enterolab's fecal fat score), and I can't tolerate any of the items on that list without experienceing problems.
Tex
Hi Roni
I'm with Tex. Just now have started to add to my diet. I ate organic turkey breast with safe mustard, home made chicken broth & baby food (no additive fruits & veggies) for 4 weeks. Actually made it easy because I didn't have to think. I tried barbecued ribs (safe sauce) last noc & really had a belly ache. Now I also have been a vegetarian x30Y so may have been reacting to the pork thing, but I crossed them off my list of foods. Made some turkey chili last noc & I'll let you know how I do with that. I love watermelon but find I can't eat it. I'm not getting D that much anymore, just belly aches. Know what you mean about watching your baby hurt. Sending you loving light, Love & light, Rita
I'm with Tex. Just now have started to add to my diet. I ate organic turkey breast with safe mustard, home made chicken broth & baby food (no additive fruits & veggies) for 4 weeks. Actually made it easy because I didn't have to think. I tried barbecued ribs (safe sauce) last noc & really had a belly ache. Now I also have been a vegetarian x30Y so may have been reacting to the pork thing, but I crossed them off my list of foods. Made some turkey chili last noc & I'll let you know how I do with that. I love watermelon but find I can't eat it. I'm not getting D that much anymore, just belly aches. Know what you mean about watching your baby hurt. Sending you loving light, Love & light, Rita
Gluten, Dairy, Eggs, Soy & borderline yeast
Hi Roni,
I hear your frustration and discouragement. I tend to agree with tex - perhaps slowing down a little will help. I know how anxious you are to have everything solved so that Emily can have a nutritious and varied array of foods to eat. However, we have learned that, as tex said, the most important thing is allowing adequate time for the gut to heal.
Until the gut heals, your food "tests" may be invalid anyway. Most of us found that as long as the gut was acutely inflamed (as evidenced by D, bloating, etc.), we usually could not tolerate raw veggies, dried fruits, nuts, seeds, etc. Once the gut healed, these items were often tolerated again. Also, gluten damage to the villi often causes a temporary lactose intolerance, which may resolve after some time of eliminating gluten.
My suggestion would be to find the simplest, blandest, non-immunogenic diet you can for now and wait a while before trying trials of new foods. I know Emily will be bored by a simple diet, but maybe she would be willing to give it a try. And I would probably add a daily multi-vitamin known to be free of most food triggers (like Freeda). Dr. Fine, BTW, is not a big believer in eating a variety of foods. He says that in the animal world, most (except man) limit their diets to ony a few items. When you think about it, there is no reason that I need to eat oranges from FL, kiwis or papaya from Mexico, etc. (Think of the fossil fuel it takes to get these foods to my doorstep!) We have come to expect this but it is certainly not necessary for good health.
Anyway, take a deep breath and try to relax. You are such a super mom! I can't believe all of the research you do. It has been such a boon to us to have you here and to be able to benefit from all of your knowlege. Emily is one lucky lady. I wish I could clone you for some of the kiddies I see in practice.
Love,
Polly
I hear your frustration and discouragement. I tend to agree with tex - perhaps slowing down a little will help. I know how anxious you are to have everything solved so that Emily can have a nutritious and varied array of foods to eat. However, we have learned that, as tex said, the most important thing is allowing adequate time for the gut to heal.
Until the gut heals, your food "tests" may be invalid anyway. Most of us found that as long as the gut was acutely inflamed (as evidenced by D, bloating, etc.), we usually could not tolerate raw veggies, dried fruits, nuts, seeds, etc. Once the gut healed, these items were often tolerated again. Also, gluten damage to the villi often causes a temporary lactose intolerance, which may resolve after some time of eliminating gluten.
My suggestion would be to find the simplest, blandest, non-immunogenic diet you can for now and wait a while before trying trials of new foods. I know Emily will be bored by a simple diet, but maybe she would be willing to give it a try. And I would probably add a daily multi-vitamin known to be free of most food triggers (like Freeda). Dr. Fine, BTW, is not a big believer in eating a variety of foods. He says that in the animal world, most (except man) limit their diets to ony a few items. When you think about it, there is no reason that I need to eat oranges from FL, kiwis or papaya from Mexico, etc. (Think of the fossil fuel it takes to get these foods to my doorstep!) We have come to expect this but it is certainly not necessary for good health.
Anyway, take a deep breath and try to relax. You are such a super mom! I can't believe all of the research you do. It has been such a boon to us to have you here and to be able to benefit from all of your knowlege. Emily is one lucky lady. I wish I could clone you for some of the kiddies I see in practice.
Love,
Polly
thank's everyone for replying. I'm always greatful for your thoughts and encouragement. I've been dealing with this since 1/25/05 and it just seems like it will never end.
I do know that diet is the key. It's just hard when it's not you and it's someone else that your leading. She's been a good sport about the whole thing.
We amy just have to go to a no grain diet for a while. It will be really hard on her, I'm not sure she could handle it.
Roni
I do know that diet is the key. It's just hard when it's not you and it's someone else that your leading. She's been a good sport about the whole thing.
We amy just have to go to a no grain diet for a while. It will be really hard on her, I'm not sure she could handle it.
Roni