I have never been so frustrated or irritated after an appointment than I had been in February.
Dear Dietician and Dr. GI:
I wanted to write in follow up to the appointment that was today. It is often hard for me to articulate my thoughts clearly when in a very frustrating situation.
My daughter begged me not to tell Dr. GI she was sneaking food because she was embarrassed. So, in the appointment I mentioned she was eating things she shouldn't. When you asked my daughter what she eats I did not clarify, and I'm sorry for that. My daughter eats GF breads at home. She does have GF snacks, but some of those items can be found to have brown rice in them and must be avoided. So even though the new protocol is to follow a GF diet, there are still issues with that diet that a FM must avoid. Many people with FM may not be able to handle some of these foods, not necessarily because of the fructose, but because they have to be on the stricter FODMAP diet. Polyols especially factor in here.
When I said I disagree with your list, it is because we have attempted some items and they did not work for her. That was not made clear by me, so I apologize. I felt that my input was not wanted, and I was never asked to clarify why I disagreed. When I did start to explain my opinion, I was brushed aside because you had spent hours looking for information. While I am grateful that you spent the time to look up the information, I have been studying this for over a year.
Studies indicate that the foods you listed have less fructose then glucose, thus making them okay...but FM sufferers have indicated that there is more to it then simple numbers. It's sad, and hopefully with time it will change, but the knowledge is not out there, and it's hard to get out there when even among FM sufferers we find such variation on what works for one and what works for the other. In the end we all end up equipping ourselves as best as possible through the various information out there and then going forward figuring things out on our own.
Also, the level of sensitivity is always the determining factor. If I find my daughter is extremely sensitive then I am going to tread with care...although I am staying away from sorbitol, no matter how small the amount in regard to your comment that "the small amount of sorbitol will probably not hurt her," until she is well enough that I am better able to gauge how she reacts to it. These alternative sugars are often considered "small amounts" but even these small amounts seem to have potent effects on sensitive people.
I feel that my experience and knowledge about this was completely dismissed and that you felt I was harming my child by not just wanting to follow your recommendations when I know from trial and error some of it will not work for my daughter. And knowing she has snuck food and wreaked havoc on her body is not the time to judge whether or not you feel I am following an appropriate diet.
While there are standard guidelines, they are just a place to start, and must be tailored for each individual. If it were that simple, there would not be so many different lists telling us what is safe and unsafe.
sugar's mom - macocha