Periodically we post excerpts from private discussion forums as valuable health information ought to be shared.
Recently, Trish asked,
My daughter has been having neverending pain for weeks now — she wakes up with it, it’s there all day, it gets worse when she eats and then declines but never ends. Her gastroenterologist thought she had pancreatitis, but thankfully all those tests are negative. So he wants to treat her for an SIBO and see if that clears up the pain.
I have a couple of questions about SIBO…
- Does it cause the unrelenting pain that Kaelin has been feeling?
- Does an SIBO tend to reoccur or once we’ve eradicated it, it’s gone?
- Are there some foods that are worse for an SIBO, something she should avoid that doesn’t necessarily affect an FMer?
A helpful user replied:
I have FM and have had SIBO. Since starting the fructose-friendly diet, I haven’t had any more flare-ups, so I sort of suspect the undiagnosed FM was contributing to it.
My understanding is that you want to limit sugars in general, since the bacteria can feed off of them, but you might want to check with her doc or a dietician on that. I definitely had the pains you mention, and I think that they’re pretty common. I also had a really foul smell on my breath at times.
If the test comes back positive, I highly recommend rifaximin, if you can swing it. It’s spendy, but does the trick with no side-effects.
So is it stupid of me to consider treating it without doing the breath test? Her doctor doesn’t want to put her through another breath test — she felt the effects of the FM test for days — and I guardedly agree. I don’t want to give her unnecessary medication but, wow, she really suffered. If I agree to treating it, the doctor is going to prescribe rifaximin.
One more question: Every day Kaelin tells me that she’s “just so tired, not sleepy tired, just tired.” Is this another symptom of SIBO?
Definitely. I would strongly suggest having her tested for vitamin deficiencies too, which can cause all sorts of symptoms, including fatigue. I found the SIBO breath test to be not nearly as hard on my system as the Fructose Malabsorption test (probably because the SIBO test is glucose, as opposed to fructose). I think it’s worth doing the test, just because you don’t want to be giving her antibiotics if she doesn’t need them. On the other hand, if she does have it, you should get it treated.
So, um, “definitely” I’m stupid or “definitely” SIBO is fatiguing?
I mentioned how tired she’s been to her gastroenterologist and he did a bunch of blood, urine, and stool tests — I’m not sure of all the things he was looking for but so far “her numbers are within the range of normal”. (That just doesn’t sound quite as convincing as “everything looks good”)
I totally agree with not giving antibiotics unless necessary HOWEVER… Kaelin had diarrhea for a week or so after the hydrogen breath test and lost about 1.5 pounds, weight she could ill afford to lose. Her doctor is weighing one unnecessary treatment of antibiotic vs diarrhea from the testing. He’s much more worried about the potential weight loss than the potential misuse of antibiotics (because now that pancreatitis has been definitively ruled out, he’s reasonably certain it has to be SIBO causing the pain.)
Once the SIBO was treated, did the pain stop completely? Or did it still take some time for your gut to heal? It’s killing me that Kaelin is slowly eating less and less and at each doctor visit her weight has eeked ever downward.
Thanks for taking the time to answer my questions. It’s so hard trying to help Kaelin when I’ve never experienced anything she’s going through!
An expert/authority weighed in:
SIBO can cause high pain levels in some people. Those rotten little bacteria produce gas which distends the intestines and some people are ultra sensitive. My guess whould be that a young child is one of those people who has hightened response with a lower pain threshold to it. I can remember the pain I experienced from it was intense enough to make me groan and sweat profusely.
SIBO can re-occur, unfortunately
It’s usually treated with one of several different antibiotics; or a combination of them. Your doc & you will decide the best therapy. How good would it be if those mongrel bacteria would just foof off from the party, never to return. They like the free feeds too much.
I had another SIBO test about 10 days ago. The glucose used didn’t make me feel as bad as the fructose used to diagnose FM.
i.e. it didn’t give me the screaming trots!! LOL