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A Medical Emergency, 5 Years Low A, SIBO...and help wanted
Three weeks ago today - after weeks of increasing pain - my eldest (age 20) child’s stomach perforated. Thankfully an emergency surgery performed at our local hospital found and repaired a tiny hole in his stomach, saving his life.
Pathology came back the following week, culturing for h pylori…and found none. Nothing else was out of the ordinary, according to a visual inspection by the surgeon: just a tiny hole, with possibly some “gastritis,” which the surgeon described as “stomach irritation with no known cause.”
My son is now feeling like he’s identified one major recent issue after a lifetime of gut issues/dysbiosis/pain (which we’ve addressed using variety of dietary approaches over many years): his inability to identify hunger and fullness, and the fact that he’d been recently (since ~the new year) eating seriously ENORMOUS amounts even though his metabolism had recently slowed since he stopped growing. (Overeating is known to cause “gastritis,” according to The Internet.) Further triggers we’ve thought of: serious stress at work (management transitions and a lawsuit against the organization), eating gluten for the past fifteen months after not doing so for 16 years (something which definitely affected him as a baby, although he didn’t notice problems eating it prior to New Years if it was a trigger for the stomach perforation), working through pain all winter, the physical stress of a backpacking trip in April, drinking unfiltered water on that backpacking trip, taking supplemental hcl while we now realize he had “gastritis,” and continuing to eat enormous quantities during the pain and bleeding that we now realize increased after taking the hcl and even after discontinuing it a week and a half before the surgery.
He is feeling like he will start to feel better now that he’s eating less…and that he will find it easier to eat less because he will start to feel better. ❤️
But meanwhile: before, during, and after the surgery he was given opiates, an absolute necessity but not gentle on the system. And afterward, they put him on PPIs for ten days (“accidentally” since it turned out there was no ulcer).
The day the PPI finally wore off, severe indigestion after meals began. At first we thought it was “only” the rebound stomach acid production that those drugs are known to cause. But this week the symptoms are severe and specific enough to reflect a very dysbiotic/SIBO situation: indigestion, pain, bloating, diarrhea, and nausea after meals containing any carbohydrates. A two-day experiment during which he ate only meat and broth yielded a reduction of indigestion and a nearly immediate fatigue and achiness and “low carb flu.” A single tbsp of maple syrup brought the indigestion back quite strongly (although it caused some fatigue and achiness to disappear).
So he’s in this situation where he seems to only tolerate meats/fats/broths, something we did for a long time many years ago, but which does not feel ideal long term for many reasons. Prior to the surgery, Ben was eating a fairly balanced diet, low in vegetables and no liver, plenty of starch and meat and beans, some eggs and dairy and nuts, and despite the discomfort from overeating more recently, none of the current indigestion/SIBO.
We would be really grateful for ideas. How can he treat SIBO in a way that’s gentle enough for his obviously quite sensitive system, and despite all indications of low stomach acid/low bile production for which he will never want to try hcl ever again? How might he start eating and digesting the nutrients in his food in order to digest and absorb minerals and bring up his very low hemoglobin (it was down to 7 on the day of the surgery, requiring a transfusion)?
I don’t imagine anyone’s been in exactly this situation before, but we would truly appreciate any ideas or resources you have to offer.
In the past, I have gained such useful insight from very many of you, including Grant, Lil Chick, Puddleduck, Andrew, Tim, Janelle, Jenny, Jessica, Inger, Hermes, Orion, Ourania, Hill Country, Liz, and many others...but I cannot figure out how to tag you all in this post. (Does anyone else know how to on my behalf?) 🙁 Thanks for being out there on the Interwebs.
@sarabeth-matilsky, sorry to hear about this, that must have been awful to go through! I have a long history of this kind of stuff minus the gastritis though at times I had moments of pain the last few yrs. Stress is definitely number one cause of stomach problems, is he still very stressed at work? Have you heard of Robert Sapolsky's work? He wrote the book why Zebras don't get ulcers. It's because humans have a social hierarchy that can cause massive amounts of stress. But it sounds like he was using the hcl despite stomach pain? That might have been the catalyst for the perforation. I was told that if you feel even warmth in your stomach after taking that you should not take that amount it's too much. When I have that happen then I don't take it for a few days. I try to only take it when I know I need it. Like with dinner which tends to be heavy in things that require a lot of acid. And I think I'm just biologically lower in acid than a lot of people. So his stomach was inflamed but that usually causes an ulcer, very strange they found no evidence of that. Maybe his bile is too thick and sticky which backs up the stomach because the bile has to be flowing for the stomach to release it's contents into the intestines. Karen Hurd would say more soluble fiber! Get the bile less toxic. Which will clear up the SIBO. This is my current understanding. Worth a try!
@sarabeth-matilsky I am sorry you have to face this. However not everything is a consequence of past choices. There is also an element of luck,. Have you been considering that the gastric perforation might be due to Covid contamination? And not from his previous diet? What is worrying is his tendency to eat too much, he is looking for aliasing ingredient maybe? Or trying to restore an equilibrium?
Best wishes, thinking of you.
Oh what a rough go of it he's had! I'm so sorry, @sarabeth-matilsky. What a scary time.
Two resources come to mind for me:
1) Karen Hurd - according to interviews she has done, in individuals with SIBO, beans can be too harsh (the proteins irritate the already sensitive digestive lining) so Karen uses psyllium as an alternative soluble fiber source. Psyllium must be increased slowly, and well-tolerated before re-introducing legumes. Karen always recommends 30 grams of soluble fiber daily, from all sources, as the target "dosage."
She believes SIBO can be addressed with soluble fiber alone. (Since my eggsperiment failed, I have dealt with an intolerance to soluble fiber that looked a lot like SIBO. I've been planning to write about the details of what I did in my log, but I could not tolerate 30 grams of soluble fiber from legumes...it took a lot of time and patience and limiting my diet then slowly introducing psyllium with activated charcoal before I noticed a shift...going slow needs to be emphasized, but in my case it seems Karen is right!)
This is the course she recommends for individuals with SIBO:
https://karen-r.mylearnworlds.com/course?courseid=heal-ulcerative-colitis-and-crohns-disease
2) Integrative Nutritionists, James and Dahlia Marin, have a course about SIBO:
https://www.marriedtohealth.com/good-gut-sibo-ibs-program
I'm enrolled in a nutrition and wellness coaching certification program right now, and the Marins were guest lecturers. Both of them shared about their own healing journeys from significant health problems using nutrition. They don't believe SIBO can always be addressed with diet alone, and said that sometimes antibiotics or herbal supplements are necessary. They emphasized that elimination diets, like the Specific Carbohydrate Diet of Low-FODMAP diet are supposed to be temporary, and that healing does involve slowly re-introducing whole grains and legumes.*
If you'd like me to email you some handouts they gave us to use, please let me know. I'm going to post my email address here so it sends to your inbox, and then immediately delete it: [DELETED]
But I know the Marins offer telehealth services, too. It's likely they'd have more specific insight regarding the low stomach acid and reduced bile acid production problem.
I hope your oldest son gets some relief, and heals to a greater level of resilience than before!
*ETA: Not gluten-containing grains if celiac is part of the problem, though! I wonder if celiac is part of what's going on for your son, actually. Has he had an intestinal biopsy to look into that? A close relative of mine was diagnosed with celiac initially due to severe stomach pain.
I once took a quarter of an HCL pill to test how my stomach would react (I'd already been diagnosed with mild gastritis by that point). It was bad. I felt warmth and it gave me horrible brain fog within half hour that lasted till next day. I'd never taken it again. I guess if I continued taking it while having gastritis, I'd screw me up badly. You should take into account that lots of people have gastritis but very few end up with holes in their stomachs. Add to that the fact that your son's helicobacter pylori test is negative and it's totally possible the HCl pills are to blame. Don't disregard the celiac test advice though.
I suggest you study @nutridetect threads on twitter and contact Garrett Smith at nutrititondetective.com
Went through similar in 80's and 90's emulating Dave Scott's diet. He was the IronMan triathlete. Ate 20 to 30k calories daily for years. I crashed in '93. Dave retired. I went cachexic and recovered when my then doc (and still my doc) coached me to study refeeding paradigms for rescued POW's after starvation. The broth program you started is an excellent first step. Please continue. The ensuing steps will need to be small carefully chosen, executed and monitored simple ideas. Kaizen.
Glad that he is young and figuring this out. Meanwhile, egg intake means he is not on a low vitamin A diet. Nuts are and will be problematic with very low risk to reward ratios. Gluten will be a problem with even lower risk to reward until he is almost competely recovered.
BTW, Dave Scott came out of retirement for another race after reading and applying Barry Sears' Zone Diet 40/30/30 carbs/protein/fat balance. Instead of eating 20 to 30k calories every day he ate 1500 to 2400 calories. In his first race back after retirement as the old man in the field he placed second. Sometimes we need to slow down to speed up.
Thank you, everybody, and @puddleduck I e-mailed you this morning but gmail often puts my messages into spam, soooo....just lemme know if you didn't get it.
Karen Hurd wrote back already - she thinks she may be able to help my son, and I am curious about her protocol. I am skeptical of 100% plant based, based on my own 30 year stint as a malnourished vegetarian (lots of whole foods and not a "junk food veggie") and the fact that my son currently can't ingest any plant foods at all without bloating and pain...but broth and meat certainly doesn't feel like enough nourishment and we've been down that road too, for 2 years on extremely low-carb GAPS. It feels like something is medically necessary to get him back to a middle of the road diet that was finally nourishing him fairly well before this fiasco.
I'm mostly especially interested in practitioners who have lots of clinical experience with SIBO-ish/carbohydrate maldigestion/dysbiosis. So yes, please I'd love to see those handouts and hear anyone's experience, pro or con, with such protocols. THANK YOU xoxo
I left out quite a bit about my story but I couldn't tolerate any beans, nuts, or whole grains without IBS cramping 4-5 days later. Somehow after 2 months of coffee enemas, activated charcoal and a very low vit A diet I was able to start eating beans again. This was miraculous to me! I don't believe in forcing any diet if it makes you feel awful, I think a protocol has to take place to introduce those foods again. I still get IBS from whole peanuts though. So I'm not completely bulletproof, but my gut is getting there. And I am also realizing that beans really do a good job soaking up things... so nutrition has to be on point if you eat a lot of soluble fiber as a lot of it is just going out into the toilet. I do have some side effects of the diet, I have heavy bleeding and clots with my period. My blood has thinned out quite a bit. Going to trial gouda cheese this month to see if it clears up as I was always a cheese lover and never had bleeding problems until I cut it out.
You're talking about treating your son's SIBO while you don't say if it was confirmed by a breath test. So was it? The only way right now to test for SIBO is a breath test, in which lactulose is given on an empty stomach and then hydrogen and methane are measured at 15-min intervals (and once before the lactulose ingestion) for about two hours. You don't want to "treat SIBO" only based off symptoms, trust me. I've had plenty of digestive complaints over the years and did two SIBO tests, both were negative, as well as h. pylori. SIBO is treated with antibiotics. When you have it, they will hopefully help you get rid of it. If you don't have it and start taking unnecessary antibiotics, you're more likely to get real SIBO.
How much time has passed after the surgery and discontinuation of HCl? Is your sun able to eat pureed food or drink fermented stuff like kefir? What the docs are saying now? Be wary of any "healing vegan protocol" or carnivore or any -an or -vore and such, those so-called practitioners don't know what they're talking about and will bear no responsibility if anything goes wrong. If anything, a whole-plant vegan diet, which I foolishly tried in the past, requires a very (!) healthy digestive system to begin with in order to try and reap some of its benefits. Don't buy into the whole 'the more you stick to it, the better your gut can handle it", which is only true to an extent and requires gradual transition. Google "vegan bloating site:reddit.com" and see how many folks there are constantly complaining of being gassy.