What could be causing all my issues?

[bikergrl92]

I have been to GI doc after GI doc. Everything appears healthy from all my tests. They did find SIBO, but most doctors still aren't sure whether it's a real thing, so after doing one round of antibiotics with little improvement I have been focusing more on treating the symptoms rather than on this SIBO.

The symptoms started around a year ago. I would have D and abdominal pains after eating salads, asian food, and more. I was able to control these D symptoms by avoiding these foods, but the abdominal pains remained along with uncomfortable feelings of trapped gas. This pain would occur randomly throughout the abdomen, but usually on the mid-left abdomen. Sometimes when I press on it I feel like I can "pop" something back in. 

I have had every test from colonoscopy, endoscopy, h. pylori, celiac, UC, Crohns, ultrasound, etc. and all were normal. The doctors believe it is IBS or air swallowing. I follow a low FODMAP diet. I take Levsin (Hyoscyamine) when the pain is bad, am also on a strong probiotic (VSL 3), recently started Metamucil to stay regular, and take digestive enzymes before meals. My diet is as clean and as bland as possible (dairy-free soy yogurt, gluten-free cheerios, gluten-free wraps, peanut butter, turkey, chicken, baked potato).

Each time I think I have found a baseline diet that is pain-free, I end up eventually having a flare up (usually every two weeks), with terrible abdominal pain and excessive, uncomfortable bowel movements (not usually D which is more under control now, but excessive and feeling like I can't get relief from the pain unless I have one). This makes me question if it's even related to food in the first place, since the same diet could be good for two weeks and then suddenly a flare.

In the past two weeks I have eliminated gluten from my diet as well. I was good for the first week on the diet, but in this past week (the second week) the excessive gas returned even though my diet stayed the same and I have been uncomfortable for the past 4-5 days. The uncomfortable gas and abdominal pain is still here in the current episode. It seems to be worse in the morning when I wake up and at night before I go to bed. 

I feel fortunate that I am able to be relatively normal when I am not flaring, but it doesn't feel normal when the pain returns every two weeks or so. Have any of you had similar symptoms or do you have any idea/advice as to what this might be?

Edited July 7, 2018 by bikergrl92

[mom2boyz]

My nearly daily diarrhea went away after stopping gluten, but it took me a couple of weeks after stopping gluten to realize my horrible gas pains and mushy stools were from lactose (milk)... it was funny because I'm not much of a milk drinker and I would blame my stomach pain on the chocolate in chocolate bars, not even thinking about the milk in them.  So now I'm fine with dark chocolate bars.   Also, beans, nuts, and quinoa took a few months for me to be able to digest with comfort.

Have you seen the low fodmap diet?  I thought it was interesting, and it claims it can help with SIBO.  It eliminates just about anything that your body can't digest and sits fermenting in your stomach.  Then you slowly introduce foods to see if they give you problems.

[bikergrl92]

1 hour ago, mom2boyz said:

My nearly daily diarrhea went away after stopping gluten, but it took me a couple of weeks after stopping gluten to realize my horrible gas pains and mushy stools were from lactose (milk)... it was funny because I'm not much of a milk drinker and I would blame my stomach pain on the chocolate in chocolate bars, not even thinking about the milk in them.  So now I'm fine with dark chocolate bars.   Also, beans, nuts, and quinoa took a few months for me to be able to digest with comfort.

 Have you seen the low fodmap diet?  I thought it was interesting, and it claims it can help with SIBO.  It eliminates just about anything that your body can't digest and sits fermenting in your stomach.  Then you slowly introduce foods to see if they give you problems.

Good info.. I am following low fodmap diet already for months, but am still having the flare ups every two weeks, and always seem to have some sort of gas pains which I have just learned to manage. They are only debilitating during the flare ups.

[Ennis-TX]

If SIBO or Candida, you would need to go to a low carb diet and starve the stuff using a keto/atkins diet. Doing so would also get rid of most gas issues, as with no carbs or sugars to ferment there will be little gas. Will take a few weeks with the diet to notice a improvement. Also soy is a major issue for alot of us with gas issues if you have a intolerance. Keep a food diary, try a blander diet, little to no spices with a keto base. Look up keto summit or kegtogenic girl for some ideas. I got UC on top of Celiac along with multiple food intolerance issues and pancreas enzymes issues. Results for me are a keto/atkins modified diet, removing, gluten, corn, soy, whey, lactose, peanuts, sugars, grains, fruit, and a few other random thing. Have to supplement with some things but I am doing much better then I used to with a base of eggs, nut butters, nut flour,s seed meals, leafy greens avocados, vegan protein powders, fish, etc.

Open Original Shared Link

[squirmingitch]

I was going to mention the soy yogurt -- soy --- but I see Ennis already did. You mentioned gluten free Cheerios ~~~ oats. Oats are heavy duty fiber & can be difficult to digest. Try ditching the oats & anything containing oats. Eat gluten free rice Chex instead. 

[superreader]

My celiac hubby went through something similar & we eventually solved it by adding relevant (to the meal ingredients) digestive enzymes to his mealtimes. It needs to be every meal, every day. Now that he's in good control he usually skips them for snacks, though at first, he dosed for them, too. We use two multi-types, one with a broad selection and one that focuses on bean-related needs. He sometimes uses just one but since a lot of gluten-free breads & pastas use bean and/or pea flours he often needs both.

Along with those, he gets probiotic yogurt (twice a day until control, once a day thereafter), or a highly active probiotic supplement. When his gut goes off the deep end he gets a 3-month course of heavy-duty prescription probiotics. The difference has been astonishing! We had to figure all this out with trial & error, and the docs- even the nutritionist- weren't very useful. To their credit, once we showed them it worked they've been very supportive.

Digestion requires a lot of coordinating processes, among them enzyme production in various organs, much if it in the gut directly. Here're the basics:  Open Original Shared Link

And here're more details (note, this guy's trying to sell you stuff, but the info & studies he links to appear legit): Open Original Shared Link

For my hubby & lots of others with severe gut damage, the body's ability to produce enzymes in the gut is permanently impaired to some degree. This leads not only to GI symptoms but also to micronutrient deficiencies that can be hard to test for but impact energy & health now & over time. Adding enzymes back is the only way to improve function. At the least, it won't hurt to try for 3-4 weeks. Just be sure to be consistent! My hubby slacks off now & then and his symptoms come right back.

[superreader]

Also, re: so-called gluten-free cheerios- it's disappointing, I know, but there's excellent evidence that they're not really safe for folks with celiac. So, aside from getting-used-to-fiber-again issues, gluten contamination in them could be the source if a least some of your problems. Gluten Free Watchdog, (an excellent service to subscribe to, BTW!) arranged for independent testing & has followed this extensively. It's run by Tricia Thompson, MS, RD, and here's her (free to all) report link:  Open Original Shared Link

There's an overall statement on oats here: Open Original Shared Link

She also did a recent blog series on oats. Here's a link to part 1 : Open Original Shared Link

Mind you, she's not the only one who's raised these issues, but much of the most scientifically accurate data is either unavailable to consumers or so high cost as to be out of reach. She also makes it more readable & gives recommendations on what folks can do with the info.

Edited July 8, 2018 by superreader
clarification