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Well, we have discovered Tootsie has a very low tolerance to fructose. She ended up having a reaction to the small amounts of oranges and bananas she was consuming. By reaction I mean abdominal cramping off-and-on for two days, an "off mood", crying out in her sleep one night, and purple circles under her eyes. We have taken oranges and bananas out of her diet for now. That means she is consuming no fruit whatsoever. It makes me wonder if the SIBO treatment was successful. We have scheduled a follow-up breath test for early September. I hate this disorder! I hate that she can't eat freely among her peers. I hate that she feels different and isolated. I hate that I have to say over-and-over again, "No, you cannot have that." I remind myself on a daily basis that things could be worse, but it still gets me down. I worry about her long term health. I worry about sending her off to school. I can't help but wonder if the antibiotics I was taking for a sinus infection (before I knew I was pregnant) could have played a roll in this. I can't help but ask, "Why Tootsie?"
On a positive note, we did see improvement in overall GI function. She is having a healthy looking BM daily - without the use of laxatives! That makes me so happy! The chronic constipation could be causing the SIBO so if we can keep things moving maybe we can keep the SIBO from returning. We'll see...
I was doing some research today and I found an exciting study that is currently in the works. You can read about it HERE.
**UPDATE**
I just received a note back from Dr. Satish Rao. He said he is blinded to allocation and cannot be definite about the outcome, but he remains optimistic. He said he will announce the results in the spring of next year.
On a positive note, we did see improvement in overall GI function. She is having a healthy looking BM daily - without the use of laxatives! That makes me so happy! The chronic constipation could be causing the SIBO so if we can keep things moving maybe we can keep the SIBO from returning. We'll see...
I was doing some research today and I found an exciting study that is currently in the works. You can read about it HERE.
"...Data suggests that alanine may facilitate the intestinal absorption of fructose in patients with DFI and thereby may decrease GI symptoms. We hypothesize that the ingestion of supplemental L-alanine along with mixed meals or snacks that contain foods with free fructose or high fructose content will decrease GI symptoms in subjects with dietary fructose intolerance by facilitating intestinal absorption of fructose...."The estimated study completion date is December 2012. This gives me hope!
**UPDATE**
I just received a note back from Dr. Satish Rao. He said he is blinded to allocation and cannot be definite about the outcome, but he remains optimistic. He said he will announce the results in the spring of next year.
Bananas are very, very low in free fructose. BUT they are very high in resistant starch. If your little girl reacts to bananas, I think she still has a troublemaker bacteria in her small bowel. Even if the antibiotics got rid of one bacteria, it doesnt mean it killed all of them...
ReplyDeleteI also react to bananas like hell, but I am going to find out what bacterias I have first, with a stool-DNA test. Then I can take antibiotics specific against that bugger that annoys me. Good Luck!
Thank you for the info, Simone! She has a breath test next week so we'll see if she is still positive for SIBO.
ReplyDeleteHey, they mentioned this study with Alanine (sp?) on the australian board. Are you signed up there yet. interesting stuff.
ReplyDeleteDo you have the link? I'm not sure if I'm signed up there. I made a new friend online that has a little boy with severe FM and he is showing improvement with l-alanine! So encouraging!
ReplyDeleteI here you on how hard it is to try and feed your child differently. What's even harder is what happens when you cannot be there. School and parties full of sodas, cookies, and candies. It made my daughter so happy when another child in the class could not have chocolate. Other people sometimes do not get it and do not know about it. My daugher tells people she is allergic to sugar so they 1. leave her alone 2. she does not have to keep explaining. People can be offended when you do not want to accept their treat offering. Campbell-Mcbrides theory about why children's gut flora are being destroyed? Dr. Mercola has an excellent interview with her and she has a book. Her work is very convincing. I took antibiotic twice when pregnant with my daughter. She has an older brother who is fine. Dr. Campbell-McBride is concerned about the younger siblings of these sick children because they too are at risk for damaged gut flora.
ReplyDeleteAre you familiar with Dr. Aas, he has been successfully treating people with gut flora "transplants" to cure severe C. Difficile intestinal infections. Which sound horendous, but makes sense. Dr. Aas considers gut flora a separate organ because healthy gut flora is so important for proper digestion. When that organ is damaged there is trouble.
I feel for your frustration. Our daughter and we have motivation to keep doing her diet because it is so much better than the alternative. It's easy to be down, but even though parties will never be the same. She is not on a toilet all day, she is not anemic, she is growing, she is playing tennis and going to dance. She is enjoying and having a life. And she is not taking medications that will damage her organs or DNA. We are blessed in finding SCD, low FODMAPs, GAPS diet. All kids would be healthier if they would eat like your girl.
My daughter has gotten sick from oranges from the beginning, she did not sleep though one night until she was 4 years old. Now it makes sense.