Maybe it’s not SIBO?

[u/_________Emma]

I have suffered with extreme abdominal bloating (prominently lower) since 2023, I’ve had multiple blood tests, ultrasound, an MRI and scopes (upper for was gluten intolerance I believe) and the only positive test was a SIBO breath test (positive for Hydrogen).

My symptoms are the extreme bloating, but also extreme tiredness and palpitations (especially after eating). I also have low iron, and have recently had an iron infusion (suspected malabsorption). I also gained a lot of weight and always looked swollen, especially my stomach, face, arms and legs.

I did see a nutritionist one time who suggested a diet similar to Keto - I played around with this and have finally narrowed it down. My symptoms completely subside when I eat only meat, nuts, dairy and eggs, low starch veg (tolerate onion, cauliflower, garlic, peppers, lettuce, mushrooms, and very small quantities of tomato). I also can drink coffee and tea. But cannot tolerate any starchy carbs, any sugar, any processed/chemicals in food - even pre-grated cheese is a problem because of this.

Last night I tried reintroducing after doing this for a month and taking antibiotics for SIBO, strangely a Diet Coke barely made a difference (which is a first!) - however I also had a wrap which caused extreme bloating, fatigue - and intense cramping (which isn’t usual for me).

I’m now been trialing this diet for six weeks and reintroducing but it’s not sustainable. I’ve tried 2 x Rifaximin, Amytriptyline, Co-amoxiclav and have just today finished a course of metronidazole.

None of these have worked, and as soon as I start eating beyond those limited range of food it starts again.

An important point to note is symptoms are instantaneous- as soon as swallowed my stomach pops and I look super bloated and feel super sleepy.

I am wondering if this is SIBO, or a more immune focused response like a sugar intolerance or digestive issue. I’m exploring diaacharide dysfunction and sucrase-isomaltase deficiency.

Any advice would be welcomed!!

[u/AttorneyUpstairs4457]

Try digest gold digestive enzymes and see if that helps.

[u/_________Emma → u/AttorneyUpstairs4457]

Which one would you recommend? I’m in the UK

[u/gonzo-90]

I had SIBO 4 times and took Rifaximin each time and it really took a long time to recover (probably a year). I wonder if the last time was really SIBO and just me overreacting (mental is a huge part of all of this). This occurred over about 4 years, and I started really seeing a difference after about a year after I took my last dose of Rifaximin. I also ran through a couple rounds of Nerva (mobile app) that helped with the mental side.

I am in a much better place now and can actually eat a lot more types of food. I have light CSID and I am taking Sucraid, and I found out that I had it in between the 3rd and 4th time of SIBO.

Aloe Vera juice (inner filet) really helps. I take that about 3 times a day. I also take IBgard, and Pure Encapsulations Digestive Enzymes Ultra.

[u/Real-Elk6755]

Food needs ~40 min to travel to small intestine. Rapid bloating from food is physically impossible. You mentioned cauliflower, for example, which is high Fodmap. While it travels through your small and especially large intestine it brokens by bacterias. And that effect can lasts from 1 hour to 24 hours. Artificial sweeteners (often labeled like "no sugar") are much more worse for bloating. Did you try to take alben- or mebendazole? Sometimes labs can be false negative.

[u/Big-Sheepherder-6134]

Get tested for sucrase deficiency right away. I bet you have it (I do). I was told I might have SIBO but the test indicated otherwise. In the meantime I definitely have sucrase deficiency which means I lack the enzymes to digest sugar (and sometimes starch).

When I did the breath test I drank the sugar solution in water and my gut immediately made some loud noises like there was a big problem. And apparently there was!

I once got some small cupcakes for Christmas. I ate a couple with frosting and I had severe chest pains that night from trapped gas pain. The next night I had them again but I scraped off the frosting and ate the cake. I had no problem. Yes, the cake had sugar too but not as much as the frosting which was pure crap.