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Well, little Toots has been having some trouble with constipation for the past month, she seems to get full quickly, and she has had a stronger craving for sugar. I have also noticed a bit of irritability and she has been looking a little thin. We called down to the GI specialist (Dr. L) to see what we should do and he said we should schedule another breath test. Ugh. Not something we really wanted to hear, but we agreed it should probably be done...
Today was the big day and the test didn't go so great. She swallowed the last drop of the fructose solution, then started heaving. I tried to get her to breath deeply and was rubbing her back, but it didn't work. Most of the solution came shooting out in a projectile fashion all over the floor. Poor girl - she looked grey. The lab tech called up to Dr. L's office and he said to send her on up. We stopped by the restroom to change her clothing, and she ended up covering the bathroom floor with the rest of the solution. A nurse came to help us out, bringing an arm full of towels...and a plastic bucket so we could make it to the 3rd floor.
We got in right away to see Dr. L. He looked at her and said, "Let's just treat her." We thought that was a great idea. He said she weighed 37.8 lbs today - she was 39 lbs in October. She is going the wrong direction. He decided to do something a little different to see if we can keep the SIBO away long enough for her intestines to heal...and hopefully absorb more fructose. He is putting her on a 5 day course of Xifaxan, once a month, for 6 months. We'll follow each course with 2 weeks of probiotics. I am excited to see if this works. (4/17/12 Update: We stopped giving Tootsie probiotics after the second round of antibiotics. She doesn't seem to tolerate them. By the 3rd night she starts to have nightmares/night terrors and I think they cause her to feel bloated. Dr. L said to skip the probiotic since there is no evidence showing they are truly beneficial. When we were first learning about SIBO, I thought it would be good to introduce a probiotic to fight off the "bad" bacteria in the small intestine. I have since learned that bacterial overgrowth in the small intestine is not necessarily "bad" bacteria. It can be good bacteria, but it is colonizing in the wrong spot. These bacteria belong in the colon, not the small intestine...so adding more bacteria in the form of probiotics might not be a good thing in patients with recurring bouts of SIBO.)
And to add another twist to this puzzle...
I had a conversation with our naturopath (Dr. D) a couple of weeks ago regarding Tootie's recurring bouts of SIBO - despite following a very low fructose diet. He suggested having her tested for an underlying food allergy by testing her blood. The test is called a 96 General Food Panel (IgG & IgE) and is performed by Us BioTek Laboratories. We figured it couldn't hurt and really weren't expecting her to test positive.
Well...we met with Dr. D yesterday to get the results and we were surprised to find out that she had a highly positive IgG response to eggs. On a level 0 to 6, she was a 6. She also had a low-moderate reaction to peanuts. An IgG response is not an "allergy", as it doesn't produce a histamine response - it is more of a sensitivity, and the response is delayed anywhere from 1 hour to 2 days after exposure.
Here are some symptoms of a food sensitivity:
We presented this info to Dr. L and he suggested taking eggs away for a couple weeks, then try reintroducing them on a rotating basis. From the list above, Tootsie has a rash on her cheek, she often complains of a stuffy nose, she has issues with constipation, and she gets canker sores in her mouth sometimes. She also has some irritability at times (but don't we all). I'm not sure when we'll start this elimination and challenge...maybe after Christmas when things quiet down.
Today was the big day and the test didn't go so great. She swallowed the last drop of the fructose solution, then started heaving. I tried to get her to breath deeply and was rubbing her back, but it didn't work. Most of the solution came shooting out in a projectile fashion all over the floor. Poor girl - she looked grey. The lab tech called up to Dr. L's office and he said to send her on up. We stopped by the restroom to change her clothing, and she ended up covering the bathroom floor with the rest of the solution. A nurse came to help us out, bringing an arm full of towels...and a plastic bucket so we could make it to the 3rd floor.
We got in right away to see Dr. L. He looked at her and said, "Let's just treat her." We thought that was a great idea. He said she weighed 37.8 lbs today - she was 39 lbs in October. She is going the wrong direction. He decided to do something a little different to see if we can keep the SIBO away long enough for her intestines to heal...and hopefully absorb more fructose. He is putting her on a 5 day course of Xifaxan, once a month, for 6 months. We'll follow each course with 2 weeks of probiotics. I am excited to see if this works. (4/17/12 Update: We stopped giving Tootsie probiotics after the second round of antibiotics. She doesn't seem to tolerate them. By the 3rd night she starts to have nightmares/night terrors and I think they cause her to feel bloated. Dr. L said to skip the probiotic since there is no evidence showing they are truly beneficial. When we were first learning about SIBO, I thought it would be good to introduce a probiotic to fight off the "bad" bacteria in the small intestine. I have since learned that bacterial overgrowth in the small intestine is not necessarily "bad" bacteria. It can be good bacteria, but it is colonizing in the wrong spot. These bacteria belong in the colon, not the small intestine...so adding more bacteria in the form of probiotics might not be a good thing in patients with recurring bouts of SIBO.)
And to add another twist to this puzzle...
I had a conversation with our naturopath (Dr. D) a couple of weeks ago regarding Tootie's recurring bouts of SIBO - despite following a very low fructose diet. He suggested having her tested for an underlying food allergy by testing her blood. The test is called a 96 General Food Panel (IgG & IgE) and is performed by Us BioTek Laboratories. We figured it couldn't hurt and really weren't expecting her to test positive.
Well...we met with Dr. D yesterday to get the results and we were surprised to find out that she had a highly positive IgG response to eggs. On a level 0 to 6, she was a 6. She also had a low-moderate reaction to peanuts. An IgG response is not an "allergy", as it doesn't produce a histamine response - it is more of a sensitivity, and the response is delayed anywhere from 1 hour to 2 days after exposure.
Here are some symptoms of a food sensitivity:
- Skin (rashes, swelling)
- Airways (asthma, stuffy or runny nose, frequent colds and infections)
- Gastrointestinal tract (irritable bowel symptoms, constipation, colic, bloating, diarrhea, vomiting, frequent mouth ulcers, reflux, bedwetting, 'sneaky poos', 'sticky poos')
- Central nervous system (migraines, headaches, anxiety, depression, lethargy, impairment of memory and concentration, panic attacks, irritability, restlessness, inattention, sleep disturbance, restless legs, mood swings, PMT).
I have decided not to take eggs out of Tootsie's diet. I have read online that you can have a positive IgG response to eggs if you are eating a lot of them...and Tootsie eats a lot of eggs. Instead, we have backed off on them a bit.
ReplyDeleteMy son also tests IgG positive to eggs on paper, but our Allergy Doctor told me that "most" kids can tolerate them baked in, and that seems to be true in my son's case. He was egg free for a year and I don't wish that diet on anyone! It's not easy. Hopefully Tootsie can find her threshold and keep some egg in in her diet :) Keep us posted!
ReplyDeleteWhen she got the IgG Food Intolerance test did the fruit show up high on the chart for her being intolerant to it or did it not read it? I am going to get an IgG Food test done and I believe I may be fructose intolerant so I am just wondering if this will show up on the test or not.
ReplyDeleteNo, fruit did not show up. The only way to test for fructose malabsorption is a hydrogen breath test.
ReplyDelete