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Post by perkykeri on May 26, 2012 13:37:45 GMT
My son is 17yo and newly diagnosed. we have been on a fm diet now for 3 weeks and he has improved a lot. The issue is he is hungry all the time. we dont eat many potatoes and he doesn't "like" rice. will he ever get over this feeling because even when I make him eat every 2-3 hours, he still overeats and then has to use the bathroom.
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Post by Charlie Arnold on May 26, 2012 19:48:22 GMT
Hello, welcome on board, and welcome to your son too, tell him to feel free to chip in as well if he would like to. Firstly, tell us a bit more about his history when you have time, its good if you start your own thread in Introduce Yourself, then people can check back on histories when answering questions.
One of the main factors in recovery and improvement seems to be how long have you had the symptoms, ie from weaning or recent onset. This is because there seem to be two different types of FM according to what has triggered it.
But to start with however it started is to get the basic diet right and allow the digestive system to heal. Probably what is happening at the moment is that his digestive system is in overdrive trying to clear the toxins all the time so the earlier he can learn what does and doesn't suit his system the better.
The best solution seems to be to make the diet as low fructose and sugar as possible for up to 4 months to really give it a chance to settle, then start slowly adding in permitted foods over a period of time and keeping a diary of responses as its surprising how quickly you lose track.
What is it about rice he doesn't like, is it the plain taste (if so look up my yellow rice recipe). Avoid brown rice as it is higher fructose. If he can get to like rice then that will give him a good staple food. I often cook my rice in a homemade meat stock and that gives it a bit more flavour.
The other problem of course is that he is probably still growing and every friend I know with teenage boys find they are constantly eating so again finding safe staple foods is essential just to help him keep up with his body.
Is he able to have dairy, if so that is a good building block to food sustenance too.
But the main message for now is - yes- it will get better, and there will be many ups and downs on the way, but it will be worth it. If it is FM triggered by something else then you may find his system will improve and he will be able to tolerate more fructose as time goes on.
Anyway, thats enough for now, I'll leave others to fill you in with their ideas too, but let us know more about your story, and if you get a chance fill in your location on your profile as that may help advise brands and products as every country is different.
All the best, and welcome on board.
Charlie
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FMmom
Full Member
Posts: 109
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Post by FMmom on May 27, 2012 4:48:22 GMT
Welcome to the board -- glad to hear your son has made some major improvements in just a few weeks. But don't get discouraged if it takes many more weeks (or months) to get it all figured out. Everyone seems to have different sensitivities -- what works for one person doesn't automatically work for another...
I noticed that my daughter seemed extraordinarily hungry when we first started on the diet. Honestly, for a few weeks, I thought that it was just my imagination because I was suddenly so aware of how difficult it was to feed her. I couldn't hand her a fistful of pretzels anymore. I couldn't buy some quick snack when we were running errands... Everything had to be planned out.
Protein filled her up fast and for the longest periods of time. Or maybe it was the fat... I made an omelette with three eggs, cream, lots of cheese and cooked it in three tablespoons of butter (that's still her breakfast every morning.) Her snack was a 1/3 pound hamburger and salad. And no matter what I gave her, she asked for more.
She was a very tiny 9 year old girl -- I would imagine a 17 yr old boy would be a lot more challenging.
About a month or so after being diagnosed, we had a house disaster and moved into a hotel for a month. It was impossible to follow the diet -- and bit by bit I noticed her appetite was dropping. That was when I knew it wasn't my imagination about how hungry she had been. Kaelin was so hungry because her 9.5 year long stomachache (that she never knew she had) was over. It didn't hurt to eat; the bloated feeling was (mostly) gone; the constipation was clearing up. But once wheat crept back into her meals, her hunger pangs went away. She was cranky and hyper and gassy and developed another annoying rash.
We've had a lot of progress and a lot of setbacks since then. I think Kaelin's hunger is a sign I'm doing everything right. When she gets fussy about eating; when I can't entice her to have a snack at all, I know that she's eating too many foods that hurt -- sometimes I know right away what the offending food is and other times I have to hunt. When I'm giving her the right foods, I can't seem to feed her fast enough -- she may have three snacks in the three hours between arriving home from school and dinner.
I do a LOT of cooking. Sigh.
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Post by perkykeri on May 27, 2012 12:30:18 GMT
Thank you so much for your replies. I did post an introduction a bit ago so that should help with some basic information. It is good to know that possibly he will go back to a normal appetite. The rice issue seems to be from a texture problem he has had forever. I don't know for sure though because he will only tell me he doesn't like it. He used to be more specific but has lost his words as of late. I have explained that now he will have to learn to like foods he previously decided he didn't like. I have to give him credit he is trying so hard and is really sticking to his diet. We are having a portion control issue but we are working on that.
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kate
New Member
Posts: 44
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Post by kate on May 27, 2012 13:23:14 GMT
I'm new to all this too so I know how hard it is to work out the diet. You mentioned in your introduction that your son developed more serious problems since having the intestinal flu. From what I've read, in these cases an elimination diet for 6-8 weeks is often followed by a successful reintroduction (please correct me if I'm wrong other forum-users). Hopefully this will be a transient diet for him and he'll end up with a high tolerance. I had IBS as a teenager and couldn't tolerate any dairy at all. After an elimination diet I was able to slower introduce it and can now have pretty much as much dairy as I like, although I notice mild symptoms if I have lots and lots.
My daughter has homemade hamburgers for snacks too. I make them in batches and freeze them. How about hotdogs (weiners I think in the US) - my brother used to eat 4 of these at once as a snack as a teenager. Sugar-free peanut butter on ricecakes or gluten free bread? Boiled eggs? Anything high protein like FMmom said.
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Post by perkykeri on May 27, 2012 15:21:39 GMT
he is currently eating lots of meat and certain vegetables. refuses eggs unless scrambled. I have gotten him some unsweetened ketchup bc he doesn't like hamburgers or hot dogs w/o it.maybe we will try just the meat and not vegetables for snack. I am going to try more mash and if anyone has a fried rice recipe that would be appreciated as possibly he might like that. rice cakes and chips are a no bc they taste funny to him  It will be great if he can re-introduce wheat into his diet eventually but right now I am going to try to focus on the present. I found the softest gluten free buns from a local baker and was so excited and he ate one yesterday and said it tastes like uncooked bread. I had to laugh bc he finds no happy medium. maybe just bc its all so new and it feels better to complain.  |
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Post by Charlie Arnold on May 27, 2012 20:15:18 GMT
As Kate has said, there is hope this is more short term as it maybe started after intestinal flu as it may well mean that once his system has healed he may have a much higher tolerance level. He will probably always have to be careful but may not be as sensative as some.
Ketchup - handle with care as it is very high fructose even if supposedly the glucose balance is even, it may be too much fructose full stop. Meg uses homemade mayonnaise but you may find shop mayo that is safe but she is so sensative we don't use sugar and most seem to have that. The other thing she uses is soft cheese spreads.
Gluten free bread - try toasting it, it always seems better toasted.
Get him to play around with different ways of cooking rice, I always use basmati rice this seems the nicest. Fry for few minutes in oil or butter then add boiling water 1 portion rice to 2 portions of water. Use a non-stick pan then it doesn't seem to stick. then simmer for about 15 minutes.
You may find, if you can eliminate as much fructose as possible for a while then you may get away with a bit of wheat to help him out a bit.
He may have a separate issue with eggs if he doesn't like them.
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Post by perkykeri on May 28, 2012 2:03:11 GMT
I found some unsweetened ketchup but I have read that there are kids who have issues with tomatoes. I never thought about him possibly having egg issues so thats a possibility. I will get some basmati rice and try that. I cooked a lot of food for this week at my daughters(she has air conditioning) so we have gluten,dairy sugar free muffins for snacks,rice,potatoes and some shredded meat for hash. I am hoping to get him to try some new stuff.
What kind of soft cheese spread?
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It will be great if he can re-introduce wheat into his diet eventually but right now I am going to try to focus on the present. I found the softest gluten free buns from a local baker and was so excited and he ate one yesterday and said it tastes like uncooked bread. I had to laugh bc he finds no happy medium. maybe just bc its all so new and it feels better to complain. 