Connect
New SIBO diagnosis
Has anyone in the group been diagnosed with SIBO? I suddenly began having a lot of belching and bloating, as well as stomach pain. I have never had these issues, even during my NTM treatment.
My PCP did full bloodwork to look for issues, and labs were normal. I then got an appt with a GI specialist, but I had to wait over a month for it. She wanted to do a CT scan, but I declined because I already get those annually for lungs. Then she ordered an abdominal ultrasound, and I am awaiting those results. She also ordered an IgA test and a specialized SIBO breath test.
The breath test included 10 vials and came with instructions that I followed at home. I mailed it off, and the results came in showing that I was positive for hydrogen SIBO, but not methane.
The doctor prescribed a course of Xifaxan, an antibiotic that acts only locally in the gut and has very few systemic effects. SIBO requires a low FODMAP diet, except for during the medication because they want the bacteria to be ample and not dormant, so that the treatment can reach them.
I successfully treated NTM but still have relatively mild bronchiectasis. I eat a really healthy diet which also includes a lot of veggies and beans, nuts and nut butters, etc.., so this is a devastating diagnosis for me. I need to keep weight on. They don’t even recommend whey protein, and the pea protein powder I have been using is apparently high in FODMAP, so I had to order a different one that uses isolated pea protein and then also ordered a brown rice protein. I do not have celiac or gluten intolerance, but the low FODMAP also restricts whole and sprouted grains, so even my Ezekial bread is out.
I only heard from the GI practice on Friday evening at the end of the day, and I now have so many questions. I had asked for a referral with a nutritionist and was told they would do that. The doctor also wanted to do an endoscopy, but I initially said to wait until the other tests came back because I ended up also being negative for H. pylori.
I did not want an endoscopy because I am afraid of getting infected with something during the procedure. Since I am having stomach pains, I need to schedule the procedure.
I had taken DGL, l-glutamine, and zinc carnosine for the stomach, and they worked great, but the zinc and l glutamine constipate, so I had to stop. Now the doctor prescribed a PPI, but I don’t want to take it because it can be a major cause of SIBO, since it stops stomach acid. I have taken enzymes once a day with a big meal for years because I already have low stomach acid. So, I am just taking an H2 blocker now, and it helps without totally shutting down acid. I have asked the doctor office to also do a motility study. My normal diet has a good amount of fiber, but the low FODMAP diet does not.
I feel pretty discouraged right now, as I am also the caregiver for my husband. If any of you out there with MAC (mine has cleared) and BE have health with SIBO, any tips would be very welcome. Thank you so much!
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
What is SIBO?
SIBO = small intestine bacterial overgrowth
@hoopsnest17897 , as another member said, it stands for small intestine bacterial overgrowth.
It can be caused by slow food transit time, low stomach acid, long term PPI use, a malfunction of the motility of the digestive tract, a lot of stress, and other causes.
There are two types: hydrogen dominant and methane dominant. I have the hydrogen. I had begun having intense bloating and belching about two months ago for no apparent reason. I had it all day long, even when I was not eating. I would even occasionally experience slight reflux in my throat, but only after the extreme bloating began. I also had a burning pain in my stomach.
I had not done anything differently with food choices, what I drink, habits. No smoking or drinking, no carbonated beverages, good protein, both animal and vegetable, lots of fresh fruits and veggies, and healthy fats.
I did have Covid for the first time in December and had to take Augmentin because the cough got so bad. I coughed for a month, despite my twice daily nebulizing with 7% saline and use of airway clearance PEP. I am thinking that maybe I coughed so hard that I may have gotten a hernia or something. The ultrasound may reveal something.
The medicine is only about 50% effective, and the condition often reappears. I am not experiencing any reflux at all since I started the antibiotic, but I am concerned that Inmay have an ulcer, and an endoscopy can look at that.
I had taken azithromycin, ethambutol, and Arikayce for two years for mycobacterium pulmonary infection with absolutely no gut issues. I took good probiotics and ate yogurt and kept my intake of sugar very low while eating very healthy. That has not changed.
@formergardener Thank you for your explanation of SIBO. I have endured BE for 54 years and recently completed a year of ‘the Big Three’ for MAC. I share some of your gastric distress but had not been able to name it or relate it to these issues.
Wishing you wellness & comfort.
I think it’s is a good idea to contact Michelle McDonald a disturbance/ nutritionist who worked at NJH for years and now only has private practice. She does consult via zoom and I used her help- a great expert. She might help you
Dietitian
Thank you. Yes, I have requested a referral to a nutritionist with experience in dealing with this. The issue can return after med is completed, so I need to do it right. I have only taken three doses of the med so far, and I already feel 100% better.
I began wondering how I could suddenly develop such a thing, after not having a single issue from the MAC meds. We did catch Covid for the first time in December from a family gathering, and I was quite ill for a month and also on an antibiotic. I focused more on clearing my lungs than my gut. I was surprised to read that there are many cases of new and long-lasting GI issues after having Covid, and it can even have been a very mild case. Gut motility, new reflux, etc…. It may be a stretch, but it could be a link.
@hoopsnest17897 , thank you for the well wishes. Yes, it makes me wonder how many people have these types of symptoms and just chalk it up to indigestion, etc… I learned that SIBO is more common as we age and our digestive system slows down. It really does take a gastroenterologist and good testing to pinpoint it. It can be a lengthy process to rule out all possibilities.
There is a very popular alternative to the med, which involves dosing multiple times a day with oregano oil and berberine. That is sometimes more effective; however, those herbs, when taken in the required amounts, can be caustic and very irritating, and they can have systemic effects. The med that is prescribed is unique in that it is activated to act only in the gut. It does not have the systemic effects that other drugs have (such as metronidazole, which is another option).
After the treatment, there is a phase of gut restoration and then slow introduction of higher FODMAP foods. Gut motility is critical. It is tricky because all those healthy foods, such as beans, etc.. are also high FODMAP.
Gets to be overwhelming, doesn’t it?!
Hi-
I have tested positive for SIBO by breath test twice. My symptoms have been non specific most of the time - low grade constipation dominant IBS. Occasional I have a bout of more intense symptoms. I was positive for both gases on both tests. I was offered the antibiotic but declined because cost and likely recurrence.
I have mentioned in other posts that I have malrotation of the intestines leading to having my small intestine being on the right side of the abdomen and my large intestine being on the left side. Malrotations can also create adhesions and affect motility so I think my issue may be mostly structural.
I have cycled on and off a low FODMAP diet. I have a friend with SIBO and a very serious case of IBD who follows the diet religiously. I find a avoiding onions and garlic for a while really helps,
I am not sure if you have heard about a device called the Foodmarble. It is an at home device that measures methane and hydrogen in a user’s breath. The app also tracks diet. For me personally I have found the device to be accurate. I tracked the accuracy by using the device while taking my second clinical SIBO tests. The results were nearly identical. Others have said they got different results. As always everyone has to do their own research and evaluation. I do wonder if breath tests both the clinical ones and the Foodmarble ones might be affected by lung disease. The AI response says it’s possible that lung bacteria could affect the results. I had my tests before I knew about the Bronchiectasis. It might be something you want to discuss with your doctor.
Good Luck.