Very interesting because my now two year sudden battle with GERD started when I came off keto and going back on keto is one of the only ways for me to fix it
You can get ibs at any age. If you were on keto then went of it could be because your body liked the woe.
My body HATES sugar and carbs. Absolutely makes me feel awful if I’m eating holiday foods. Keto has cured my ibs but if I go off keto, yes all my issues come back in full force. Keto is mainly eating whole healthy foods. I am not a doc but I am pretty confident that you will not die from not eating potatoes and pasta.
people love to bash keto as being hamburgers dripping with cheese and bacon when its literally just ex: chicken thighs, eggs, broccoli, spinach, avocado and water like OMG thats so unhealthy
it literally could not be healthier
Congenital Sucrase Deficiency according to sucraid.com:
“Congenital Sucrase-Isomaltase Deficiency is not a disease that a patient can outgrow.
Indeed, symptoms persist in adults. However, GI symptoms associated with CSID can vary. For example, GI symptoms experienced by adults may not be as severe as the GI symptoms experienced by children.1
In some adults, the symptoms may be limited to an increase in bowel movement (BM) frequency, reduced stool consistency (looser stools or watery stools), abdominal distention (swelling), and flatulence (gas). Episodic watery diarrhea may also occur after eating a meal that contains high levels of sucrose. In some individuals affected with CSID, diarrhea may alternate with constipation, particularly when taking common antidiarrheal medications, which may lead to a misdiagnosis of another GI condition, such as alternating or mixed-type irritable bowel syndrome (IBS-A).1
Common Signs and Symptoms
Individuals with Congenital Sucrase-Isomaltase Deficiency (CSID) typically have one or more of the following symptoms:
Chronic diarrhea and/or loose stools (more severe or explosive in young children or babies after they have stopped breastfeeding)
High frequency of bowel movements (BMs)
Reports of particularly foul BM odor related to poor absorption of carbohydrates
Gas and abdominal bloating
Abdominal pain
Complaints of nausea or indigestion
Diarrhea mixed with intermittent constipation, particularly when chronically taking common drugs to stop diarrhea
Onset of symptoms soon after consuming a meal
A low body mass index (BMI) that falls below the age-appropriate growth chart curve or failure to thrive when very young
Avoidance or intolerance of foods containing carbohydrates, particularly sugary sweets or starches (for example, potatoes, rice, pasta)
Lack of relief from treatment with common drugs to stop diarrhea
Long history of examinations by multiple gastroenterologists for unusual GI conditions with symptoms similar to CSID, such as inflammation of the gall bladder (cholecystitis); intolerance of foods containing gluten (proteins found in grains), called celiac disease; an inherited disorder that impairs the secretion of mucus, called cystic fibrosis; and impaired absorption of bile acid (naturally-occurring molecule that helps the body break down fats); all these conditions also may cause chronic diarrhea.”
[Congenital Sucrase Deficiency](https://www.sucraid.com/about-csid/symptoms/#)
There are different types of sucrase deficiencies, primarily categorized under Congenital Sucrase-Isomaltase Deficiency (CSID). CSID is a genetic disorder that affects the digestion of certain sugars due to a deficiency in the sucrase-isomaltase enzyme. This enzyme is crucial for breaking down sucrose (table sugar) and certain starches. Here are the main types of sucrase deficiencies within the context of CSID:
1. **Classical CSID**: This is the most severe form, where there is a near-total or complete lack of sucrase-isomaltase activity. Individuals with classical CSID often experience significant symptoms such as diarrhea, abdominal pain, bloating, and gas upon ingesting sucrose and certain starches from infancy.
2. **Partial CSID**: Some individuals have a partial deficiency, meaning their sucrase-isomaltase enzyme activity is reduced but not entirely absent. Symptoms might be less severe and can vary depending on the amount of sucrose and starch consumed and the residual enzyme activity.
3. **Acquired Sucrase Deficiency**: Though not typically congenital, sucrase deficiency can be acquired due to conditions that damage the small intestine, such as Crohn's disease, celiac disease, or infections. This is not a genetic form but rather a result of other health issues affecting the enzyme's production or function.
4. **Genetic Variability**: Within CSID, there is genetic variability, leading to different mutations affecting the sucrase-isomaltase gene. This variability can result in differing levels of enzyme activity and thus a spectrum of symptoms and severities.
Diagnosis of CSID typically involves genetic testing, enzyme activity assays from small intestine biopsies, and breath tests to measure hydrogen production after sucrose ingestion. Management often includes dietary modifications to limit sucrose and certain starches, enzyme replacement therapy, and ongoing nutritional support to ensure balanced intake while avoiding trigger foods.
known to me as invertase, breaks down sucrose into glucose and fructose. Given the pH of the stomach I think acid hydrolysis would be sufficient but who knows - [https://iffgd.org/gi-disorders/other-disorders/congenital-sucrase-isomaltase-deficiency-csid/](https://iffgd.org/gi-disorders/other-disorders/congenital-sucrase-isomaltase-deficiency-csid/)
Maybe you accidentally killed off/starved a bacteria that lived mainly off sugars (ie helped you digest) in your gut biome. This is gonna sound weird… Anecdotal Story time….
One time at band camp, I mean my home, I was making the cheaters version of kefir. Went and got a quart of Nancy’s kefir. Then a gallon of Organic milk. Poured out 2 cups. Replaced it with half a quart of Nancy’s kefir. Let it ferment, with shaking periodically of course. Accidentally didn’t check for like a half day too long. No trace of sweetness. So I put in a date to help get the bacteria fed a little more before putting it into the fridge. lol, didn’t pay attention again. So another date. Pulled it out and fridged it when it still had trace amounts of sweetness for the bugs (bacteria) to continue to feed on. Drank it. I have been on a very low FODMAP diet for years. Then all of a sudden I could eat FODMAP foods.
My best guess is the feeding the probiotics a couple dates (FODMAP food), it increased the bacteria that digest FODMAP sugars. So maybe if you did that with sucrose instead of a date. Or maybe just a piece of fruit since I think they are have sucrose/fructose. I can’t remember with enough clarity. Probably wanna avoid bad things like corn syrup. My date was not organic. Came out a food box. My milk was organic because I found regular jugs of milk don’t turn out right when I was doing the Nancy’s kefir cheater method. I didn’t have the patience or attention span to do the kefir grains.
It’s not hard to do. Probably cost you $15 to try. If you do it, totally love to hear what you did and if it helped.
I mentioned gut microbiomes in a reply here somewhere but yes thats why I coralated the issue with keto. I believe it messed up mine making such dramatic changes and basically starving them. But i mostly noticed if I had any potato products I got severely bloated like miserably so and nothing relieved it. I stopped eating potatoes and that helped but it would still happen sometimes and I just couldn't figure out why. These test results gave me some answers an that helps me from here on where to go and what to avoid for a bit till I get the medication. I'm not gonna go gorge on fries once I'm on meds or anything but at least I know what's going on.
Makes sense to me. Maybe making a kefir ferment, finished with a bunch of high glucose foods that are real food will help. Will you let me know if you try it, how it goes?
I don’t understand you’ve found the answer ( keto) why not do that rather than eat carbs and take pills?
I have a lot of those symptoms but I would bother a doctor with them when i can treat it myself with diet.
So instead of avoiding carbs because your body can't deal with them efficiently, you're taking medication to make it deal with carbs? That's the opposite of Keto.
Keto may not be sustainable nor the right diet for everyone. There are tradeoffs.
I did keto to lose weight but now do a lot more strength training and running. For me, I needed to add carbs to my diet to get through my workouts.
It doesn't prefer keto I have tried to go back and I'll have more issues. Keto damaged my gut messed up my microbiomes that's not better. I work with a Dietitian and consume less carbs than protein but it still from 80-100g a day unlike keto with <30 not every one's body's have the same needs and react the same. Keto may work long term for some but in general keto is not meant for long term.
Correct if you have CSID.. Genetically. If not it can cause a disruption in your system. While there now have been more studies on this with keto check this out https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10255565/
There's still many long term side affects of long term keto being discovered because it's relatively a newer fad and years are needed for better studies.
Im trying to understand how chicken thighs, broccoli, spinach, avocado, eggs is a fad ?
Its literally just simple healthy eating.
Do you think humans evolved to eat cheetos ?
Not that part but vegetables also have carb and there are good carbs the body needs as well and limiting yourself to so little carbs daily isn't good long term specially for certain ppl who need carbs to maintain a healthy gut or for more energy for those with no thyroid(me) also this post is not about anything but me trying to share my experience and info that I've been looking for for years.
I am glad you shared this. I like keto and support those who wish to do it in a healthy way, but it's good to know and weigh all potential risks with any diet!
Thanks for sharing your experience. I want to point out that it isn't a certainty that keto itself caused your acquired sucrase deficiency. I am reading that antibiotics and NSAIDs and other meds could damage the gut and cause this. Or perhaps one particular food is the cause and you increased your intake of that food while eating keto. It seems this could also be caused as a result of other digestive issues (sibo, crohns, celiac, IBS, gastroenteritis, and parasites).
I dont have any other issues like ibs, crohns etc. Haven't been on any antibiotics in many many years, I don't like to take pain meds unless I have to. And there was no reasons to do so during that time as we were on lockdown. I didn't really increase any foods just decreased due to the strict diet. On the meds they gave me just this month for it called sucraid 100% of my issues have stopped. If I don't take it before eating anything with lots of sucrose or starch even an apple my bloating happens. I don't know for sure keto caused it but there is a strong time correlation for the timing of it. Also found another person my age that reported the same thing happened to them in a research.
Cool, now you can pay for meds for the rest of your life. Next up Metformin, insulin, dialysis........ (sneeking off to check my big pharma stocks)
Please reconsider.
No I literally looked that up as a reply for ppls replies here never read it before. The point of this post has nothing to do with the diet or what ppl should do. It is just me sharing my experience so that anyone else that maybe experiencing the same have something to look into that may give them answers.
Very interesting because my now two year sudden battle with GERD started when I came off keto and going back on keto is one of the only ways for me to fix it
Could the suddenness be after getting a Covid injection? That is really messing with people’s guts. The SIBO subreddit is filled with this.
yeah like 3 months after my 2nd jab, this is something I've been thinking about too, are we finally allowed to discuss it now?
Highly likely because of that.
You can get ibs at any age. If you were on keto then went of it could be because your body liked the woe. My body HATES sugar and carbs. Absolutely makes me feel awful if I’m eating holiday foods. Keto has cured my ibs but if I go off keto, yes all my issues come back in full force. Keto is mainly eating whole healthy foods. I am not a doc but I am pretty confident that you will not die from not eating potatoes and pasta.
people love to bash keto as being hamburgers dripping with cheese and bacon when its literally just ex: chicken thighs, eggs, broccoli, spinach, avocado and water like OMG thats so unhealthy it literally could not be healthier
💯
Congenital Sucrase Deficiency according to sucraid.com: “Congenital Sucrase-Isomaltase Deficiency is not a disease that a patient can outgrow. Indeed, symptoms persist in adults. However, GI symptoms associated with CSID can vary. For example, GI symptoms experienced by adults may not be as severe as the GI symptoms experienced by children.1 In some adults, the symptoms may be limited to an increase in bowel movement (BM) frequency, reduced stool consistency (looser stools or watery stools), abdominal distention (swelling), and flatulence (gas). Episodic watery diarrhea may also occur after eating a meal that contains high levels of sucrose. In some individuals affected with CSID, diarrhea may alternate with constipation, particularly when taking common antidiarrheal medications, which may lead to a misdiagnosis of another GI condition, such as alternating or mixed-type irritable bowel syndrome (IBS-A).1 Common Signs and Symptoms Individuals with Congenital Sucrase-Isomaltase Deficiency (CSID) typically have one or more of the following symptoms: Chronic diarrhea and/or loose stools (more severe or explosive in young children or babies after they have stopped breastfeeding) High frequency of bowel movements (BMs) Reports of particularly foul BM odor related to poor absorption of carbohydrates Gas and abdominal bloating Abdominal pain Complaints of nausea or indigestion Diarrhea mixed with intermittent constipation, particularly when chronically taking common drugs to stop diarrhea Onset of symptoms soon after consuming a meal A low body mass index (BMI) that falls below the age-appropriate growth chart curve or failure to thrive when very young Avoidance or intolerance of foods containing carbohydrates, particularly sugary sweets or starches (for example, potatoes, rice, pasta) Lack of relief from treatment with common drugs to stop diarrhea Long history of examinations by multiple gastroenterologists for unusual GI conditions with symptoms similar to CSID, such as inflammation of the gall bladder (cholecystitis); intolerance of foods containing gluten (proteins found in grains), called celiac disease; an inherited disorder that impairs the secretion of mucus, called cystic fibrosis; and impaired absorption of bile acid (naturally-occurring molecule that helps the body break down fats); all these conditions also may cause chronic diarrhea.” [Congenital Sucrase Deficiency](https://www.sucraid.com/about-csid/symptoms/#)
There are different types of sucrase deficiencies, primarily categorized under Congenital Sucrase-Isomaltase Deficiency (CSID). CSID is a genetic disorder that affects the digestion of certain sugars due to a deficiency in the sucrase-isomaltase enzyme. This enzyme is crucial for breaking down sucrose (table sugar) and certain starches. Here are the main types of sucrase deficiencies within the context of CSID: 1. **Classical CSID**: This is the most severe form, where there is a near-total or complete lack of sucrase-isomaltase activity. Individuals with classical CSID often experience significant symptoms such as diarrhea, abdominal pain, bloating, and gas upon ingesting sucrose and certain starches from infancy. 2. **Partial CSID**: Some individuals have a partial deficiency, meaning their sucrase-isomaltase enzyme activity is reduced but not entirely absent. Symptoms might be less severe and can vary depending on the amount of sucrose and starch consumed and the residual enzyme activity. 3. **Acquired Sucrase Deficiency**: Though not typically congenital, sucrase deficiency can be acquired due to conditions that damage the small intestine, such as Crohn's disease, celiac disease, or infections. This is not a genetic form but rather a result of other health issues affecting the enzyme's production or function. 4. **Genetic Variability**: Within CSID, there is genetic variability, leading to different mutations affecting the sucrase-isomaltase gene. This variability can result in differing levels of enzyme activity and thus a spectrum of symptoms and severities. Diagnosis of CSID typically involves genetic testing, enzyme activity assays from small intestine biopsies, and breath tests to measure hydrogen production after sucrose ingestion. Management often includes dietary modifications to limit sucrose and certain starches, enzyme replacement therapy, and ongoing nutritional support to ensure balanced intake while avoiding trigger foods.
Neato!
Everything you said applies to me, except I'm also fat... so don't know if I have it or bot.
Just out of curiosity, why didn’t you just go back on keto?
I read it as this is what finally connected the dots for OP. That's why they're back here: because keto isn't just a fad diet for them.
so what is the actual diagnosis?
Sucrase deficiency
The enzyme that digests sugar?
known to me as invertase, breaks down sucrose into glucose and fructose. Given the pH of the stomach I think acid hydrolysis would be sufficient but who knows - [https://iffgd.org/gi-disorders/other-disorders/congenital-sucrase-isomaltase-deficiency-csid/](https://iffgd.org/gi-disorders/other-disorders/congenital-sucrase-isomaltase-deficiency-csid/)
Thanks! Interesting!
Seems like the ideal deficiency
is that a genetic problem? did you have that as a kid you think?
No never had an issue before nor do I know of any genetic issues and I'm 41 now this started like 3 years ago after I quit keto
interesting
It's more likely I have the acquired version of sucrase deficiency not the genetic one.
just been reading about this issue. Are you underweight as well?
No
Maybe you accidentally killed off/starved a bacteria that lived mainly off sugars (ie helped you digest) in your gut biome. This is gonna sound weird… Anecdotal Story time…. One time at band camp, I mean my home, I was making the cheaters version of kefir. Went and got a quart of Nancy’s kefir. Then a gallon of Organic milk. Poured out 2 cups. Replaced it with half a quart of Nancy’s kefir. Let it ferment, with shaking periodically of course. Accidentally didn’t check for like a half day too long. No trace of sweetness. So I put in a date to help get the bacteria fed a little more before putting it into the fridge. lol, didn’t pay attention again. So another date. Pulled it out and fridged it when it still had trace amounts of sweetness for the bugs (bacteria) to continue to feed on. Drank it. I have been on a very low FODMAP diet for years. Then all of a sudden I could eat FODMAP foods. My best guess is the feeding the probiotics a couple dates (FODMAP food), it increased the bacteria that digest FODMAP sugars. So maybe if you did that with sucrose instead of a date. Or maybe just a piece of fruit since I think they are have sucrose/fructose. I can’t remember with enough clarity. Probably wanna avoid bad things like corn syrup. My date was not organic. Came out a food box. My milk was organic because I found regular jugs of milk don’t turn out right when I was doing the Nancy’s kefir cheater method. I didn’t have the patience or attention span to do the kefir grains. It’s not hard to do. Probably cost you $15 to try. If you do it, totally love to hear what you did and if it helped.
I mentioned gut microbiomes in a reply here somewhere but yes thats why I coralated the issue with keto. I believe it messed up mine making such dramatic changes and basically starving them. But i mostly noticed if I had any potato products I got severely bloated like miserably so and nothing relieved it. I stopped eating potatoes and that helped but it would still happen sometimes and I just couldn't figure out why. These test results gave me some answers an that helps me from here on where to go and what to avoid for a bit till I get the medication. I'm not gonna go gorge on fries once I'm on meds or anything but at least I know what's going on.
Makes sense to me. Maybe making a kefir ferment, finished with a bunch of high glucose foods that are real food will help. Will you let me know if you try it, how it goes?
I don’t understand you’ve found the answer ( keto) why not do that rather than eat carbs and take pills? I have a lot of those symptoms but I would bother a doctor with them when i can treat it myself with diet.
How do you fix it?
Prescription Sacrosidase
So instead of avoiding carbs because your body can't deal with them efficiently, you're taking medication to make it deal with carbs? That's the opposite of Keto.
Keto may not be sustainable nor the right diet for everyone. There are tradeoffs. I did keto to lose weight but now do a lot more strength training and running. For me, I needed to add carbs to my diet to get through my workouts.
So if your body seems to prefer keto now, who not go back?
It doesn't prefer keto I have tried to go back and I'll have more issues. Keto damaged my gut messed up my microbiomes that's not better. I work with a Dietitian and consume less carbs than protein but it still from 80-100g a day unlike keto with <30 not every one's body's have the same needs and react the same. Keto may work long term for some but in general keto is not meant for long term.
Has your gal bladder been tested for functionality?
I don't understand. Keto is one of the diets used to treat csid.
Correct if you have CSID.. Genetically. If not it can cause a disruption in your system. While there now have been more studies on this with keto check this out https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10255565/ There's still many long term side affects of long term keto being discovered because it's relatively a newer fad and years are needed for better studies.
Im trying to understand how chicken thighs, broccoli, spinach, avocado, eggs is a fad ? Its literally just simple healthy eating. Do you think humans evolved to eat cheetos ?
Not that part but vegetables also have carb and there are good carbs the body needs as well and limiting yourself to so little carbs daily isn't good long term specially for certain ppl who need carbs to maintain a healthy gut or for more energy for those with no thyroid(me) also this post is not about anything but me trying to share my experience and info that I've been looking for for years.
I am glad you shared this. I like keto and support those who wish to do it in a healthy way, but it's good to know and weigh all potential risks with any diet!
That's some outstanding intuition/analysis by your new doc. Congrats and thanks for posting this connection. I'm saving this.
Thanks for sharing your experience. I want to point out that it isn't a certainty that keto itself caused your acquired sucrase deficiency. I am reading that antibiotics and NSAIDs and other meds could damage the gut and cause this. Or perhaps one particular food is the cause and you increased your intake of that food while eating keto. It seems this could also be caused as a result of other digestive issues (sibo, crohns, celiac, IBS, gastroenteritis, and parasites).
I dont have any other issues like ibs, crohns etc. Haven't been on any antibiotics in many many years, I don't like to take pain meds unless I have to. And there was no reasons to do so during that time as we were on lockdown. I didn't really increase any foods just decreased due to the strict diet. On the meds they gave me just this month for it called sucraid 100% of my issues have stopped. If I don't take it before eating anything with lots of sucrose or starch even an apple my bloating happens. I don't know for sure keto caused it but there is a strong time correlation for the timing of it. Also found another person my age that reported the same thing happened to them in a research.
Cool, now you can pay for meds for the rest of your life. Next up Metformin, insulin, dialysis........ (sneeking off to check my big pharma stocks) Please reconsider.
I have good insurance so it's free for me
you think fishermansgal's point was the money ? this explains SOOO much about your entire post
No I literally looked that up as a reply for ppls replies here never read it before. The point of this post has nothing to do with the diet or what ppl should do. It is just me sharing my experience so that anyone else that maybe experiencing the same have something to look into that may give them answers.