#1 ·
Sucrase-Isomaltase Deficiency & CSID & Maltase-Glucoamylase Deficiency/MGAM
For years, I’ve been dealing with a relentless cycle of nausea, vomiting, stomach pain, and eventually, chronic diarrhea. It was an exhausting journey through a maze of potential diagnoses, misdiagnoses, dismissive doctors, and disorganized medical records. After spending countless hours—days, weeks, even months—scouring the internet and medical literature, I hit a wall. The specialists essentially washed their hands of me, telling me they couldn't help and that I'd have to figure out my own way to live while feeling sick every single day. They basically told me if I wanted real answers, I'd have to look for specialized care abroad. When I asked if they could at least point me toward a reputable research center or a clinic that handles complex metabolic issues, they just shrugged and said they didn't know anything about such facilities. Up until that point, we suspected some kind of food reaction, but here in the States, I couldn't get any traction because the doctors decided it wasn't worth the effort. It felt like I was too much of a burden or simply too expensive to investigate further. I wish I had the deep pockets or the high-level connections needed to bypass that apathy. Instead, I was left alone with the same debilitating symptoms I've carried since childhood. One top specialist in this field told me straight to my face that he had no idea how to help, no idea where to refer me, and suggested there was no point in investigating further. Even his highly esteemed colleague echoed the sentiment, telling me to find my own solutions since we had "exhausted all diagnostic possibilities in the US." Honestly, I regret not having a hidden recorder running to capture those conversations for posterity.
It’s incredibly heavy to carry, knowing that for 35 years, I've lived on the edge of vomiting almost daily. Lately, whenever I consume wheat, it triggers bouts of diarrhea.
To be clear, I don't have Celiac disease. I've been fully tested—HLA typing, tTG, and anti-endomysium antibodies—and everything came back negative. In fact, I react just as strongly to wheat products that are certified gluten-free. The issue clearly isn't the gluten itself.
In short, the doctors gave me nothing but a shrug.
After navigating a period of depression, I realized I had to become my own researcher.
Through a massive amount of trial and error, I finally started connecting the dots using online communities and scientific data...
Here is a specific clue: during the periods immediately preceding or following my nausea, my left fingers take on a distinct garlic scent. There isn't a single clove of garlic in my house, nor do I eat it, as the smell itself makes me nauseous. So, the suggestion that I "must have touched some garlic" doesn't hold water.
My "top expert" actually dismissed this as an "olfactory hallucination," implying I was imagining the smell. But that's simply not true; everyone around me notices it. Whether it's colleagues at work, friends, or family, they all smell it when I hold my hand near them. A few of them are even in the medical profession, and I highly doubt I have the power to induce collective hallucinations. They tried to brush me off at first, but once they smelled it for themselves, they realized I wasn't making it up.
While browsing forums—where information on this is unfortunately scarce—I found others experiencing similar patterns. Interestingly, some noted that the smell of garlic actually triggers their nausea, though none of them had yet made the connection that the garlic scent and the nausea might be two sides of the same coin.
Some people tried cutting out gluten entirely, following the common narrative about Celiac or non-Celiac gluten sensitivity, though most of them don't actually have Celiac.
Once I cut out all wheat (both standard and gluten-free), my symptoms improved significantly, the garlic scent nearly vanished, and the diarrhea stopped completely. That was my proof: this isn't about gluten.
I’ve been using Ensure Plus as a supplement, which contains cornstarch. I think that might be the key, because... honestly, I was starting to feel worse. I just got so burnt out from trying to balance my meals; it was becoming overwhelming. Even after eating plenty of fruits, veggies, fish, and meat, I still felt hungry because I wasn't getting enough carbohydrates to stay full. I tried rice, some potatoes, and even cornmeal. Interestingly, I noticed that boiled potatoes tend to upset my stomach, whereas roasted ones are much easier to handle—same goes for the cornmeal. It was hard to tell if they were actually the culprits, though. Some days I felt fine, and other days I felt terrible. I also ate buckwheat and barley, and those didn't seem to cause any issues.
Cornflakes definitely make me feel sick. On the other hand, I’ve never had any trouble with dairy products.
Lately, for the past two weeks, my diet has mostly consisted of potatoes, cornmeal, and some buckwheat. Since I was feeling so nauseous, I haven't been eating much solid food, so I've been relying on Ensure.
Then, in a moment of desperation, I started typing every possible combination of symptoms into a search engine, and I stumbled upon an article that made me think: this could be it!
It turns out it could be a deficiency in sucrase-isomaltase and maltase enzymes.
Usually, the most common symptoms are bloating, abdominal pain, and diarrhea, but some people experience nausea or vomiting... essentially, general gastrointestinal distress.
It involves a lack of, or reduced activity in, certain enzymes in the gut that are responsible for breaking down the sugars and starches found in dietary carbohydrates.
And it isn't true that you can't get these tests done here in the US... Mayo Clinic does testing for that specific enzyme...
I'm currently waiting for an appointment with a new gastroenterologist. My previous doctor actually referred me to this one, admitting he wasn't sure what was going on but thought this specialist might have more insight. He did suggest invasive procedures like endoscopies and biopsies since he couldn't pinpoint the cause, but to me, undergoing all those procedures without specifically testing for the relevant enzyme feels counterproductive. Given that he admitted he was stumped, I decided to pass for now—maybe someday. It turned out to be a good call, because his approach would have focused on what he knows, which doesn't include the very thing I suspected just a few days ago: CSID and a maltase-glucoamylase (MG) deficiency.
Yesterday, I finished off some vegetable risotto; since I was already feeling unwell, I just ate it anyway. Since last night, I've cut out all starchy foods entirely. I've completely removed grains, pseudo-grains, potatoes, rice, beans, and peas from my diet for the time being. I'll stick to meat, fish, vegetables, and fruit (though I have to watch out for certain fruits that are high in starch and maltose).
For breakfast today, I had fruit yogurt and an orange, and for lunch, I had chicken breast and cooked spinach. I don't expect to feel better immediately; I know from experience that it takes time for those problematic compounds to clear out of your system. Oh, and I’ve noticed my urine has a strange smell—kind of like sulfur or a savory seasoning blend. I know it sounds a bit dramatic, but it's real.
It's hard to be certain, but it is a significant issue.
So, if you are experiencing anything similar, or if you know someone who deals with these same symptoms, please reach out! You can send me a private message for a more personal chat, or post publicly on the forum so others facing the same struggle know they aren't alone or losing their minds.
For years, I’ve been dealing with a relentless cycle of nausea, vomiting, stomach pain, and eventually, chronic diarrhea. It was an exhausting journey through a maze of potential diagnoses, misdiagnoses, dismissive doctors, and disorganized medical records. After spending countless hours—days, weeks, even months—scouring the internet and medical literature, I hit a wall. The specialists essentially washed their hands of me, telling me they couldn't help and that I'd have to figure out my own way to live while feeling sick every single day. They basically told me if I wanted real answers, I'd have to look for specialized care abroad. When I asked if they could at least point me toward a reputable research center or a clinic that handles complex metabolic issues, they just shrugged and said they didn't know anything about such facilities. Up until that point, we suspected some kind of food reaction, but here in the States, I couldn't get any traction because the doctors decided it wasn't worth the effort. It felt like I was too much of a burden or simply too expensive to investigate further. I wish I had the deep pockets or the high-level connections needed to bypass that apathy. Instead, I was left alone with the same debilitating symptoms I've carried since childhood. One top specialist in this field told me straight to my face that he had no idea how to help, no idea where to refer me, and suggested there was no point in investigating further. Even his highly esteemed colleague echoed the sentiment, telling me to find my own solutions since we had "exhausted all diagnostic possibilities in the US." Honestly, I regret not having a hidden recorder running to capture those conversations for posterity.
It’s incredibly heavy to carry, knowing that for 35 years, I've lived on the edge of vomiting almost daily. Lately, whenever I consume wheat, it triggers bouts of diarrhea.
To be clear, I don't have Celiac disease. I've been fully tested—HLA typing, tTG, and anti-endomysium antibodies—and everything came back negative. In fact, I react just as strongly to wheat products that are certified gluten-free. The issue clearly isn't the gluten itself.
In short, the doctors gave me nothing but a shrug.
After navigating a period of depression, I realized I had to become my own researcher.
Through a massive amount of trial and error, I finally started connecting the dots using online communities and scientific data...
Here is a specific clue: during the periods immediately preceding or following my nausea, my left fingers take on a distinct garlic scent. There isn't a single clove of garlic in my house, nor do I eat it, as the smell itself makes me nauseous. So, the suggestion that I "must have touched some garlic" doesn't hold water.
My "top expert" actually dismissed this as an "olfactory hallucination," implying I was imagining the smell. But that's simply not true; everyone around me notices it. Whether it's colleagues at work, friends, or family, they all smell it when I hold my hand near them. A few of them are even in the medical profession, and I highly doubt I have the power to induce collective hallucinations. They tried to brush me off at first, but once they smelled it for themselves, they realized I wasn't making it up.
While browsing forums—where information on this is unfortunately scarce—I found others experiencing similar patterns. Interestingly, some noted that the smell of garlic actually triggers their nausea, though none of them had yet made the connection that the garlic scent and the nausea might be two sides of the same coin.
Some people tried cutting out gluten entirely, following the common narrative about Celiac or non-Celiac gluten sensitivity, though most of them don't actually have Celiac.
Once I cut out all wheat (both standard and gluten-free), my symptoms improved significantly, the garlic scent nearly vanished, and the diarrhea stopped completely. That was my proof: this isn't about gluten.
I’ve been using Ensure Plus as a supplement, which contains cornstarch. I think that might be the key, because... honestly, I was starting to feel worse. I just got so burnt out from trying to balance my meals; it was becoming overwhelming. Even after eating plenty of fruits, veggies, fish, and meat, I still felt hungry because I wasn't getting enough carbohydrates to stay full. I tried rice, some potatoes, and even cornmeal. Interestingly, I noticed that boiled potatoes tend to upset my stomach, whereas roasted ones are much easier to handle—same goes for the cornmeal. It was hard to tell if they were actually the culprits, though. Some days I felt fine, and other days I felt terrible. I also ate buckwheat and barley, and those didn't seem to cause any issues.
Cornflakes definitely make me feel sick. On the other hand, I’ve never had any trouble with dairy products.
Lately, for the past two weeks, my diet has mostly consisted of potatoes, cornmeal, and some buckwheat. Since I was feeling so nauseous, I haven't been eating much solid food, so I've been relying on Ensure.
Then, in a moment of desperation, I started typing every possible combination of symptoms into a search engine, and I stumbled upon an article that made me think: this could be it!
It turns out it could be a deficiency in sucrase-isomaltase and maltase enzymes.
Usually, the most common symptoms are bloating, abdominal pain, and diarrhea, but some people experience nausea or vomiting... essentially, general gastrointestinal distress.
It involves a lack of, or reduced activity in, certain enzymes in the gut that are responsible for breaking down the sugars and starches found in dietary carbohydrates.
And it isn't true that you can't get these tests done here in the US... Mayo Clinic does testing for that specific enzyme...
I'm currently waiting for an appointment with a new gastroenterologist. My previous doctor actually referred me to this one, admitting he wasn't sure what was going on but thought this specialist might have more insight. He did suggest invasive procedures like endoscopies and biopsies since he couldn't pinpoint the cause, but to me, undergoing all those procedures without specifically testing for the relevant enzyme feels counterproductive. Given that he admitted he was stumped, I decided to pass for now—maybe someday. It turned out to be a good call, because his approach would have focused on what he knows, which doesn't include the very thing I suspected just a few days ago: CSID and a maltase-glucoamylase (MG) deficiency.
Yesterday, I finished off some vegetable risotto; since I was already feeling unwell, I just ate it anyway. Since last night, I've cut out all starchy foods entirely. I've completely removed grains, pseudo-grains, potatoes, rice, beans, and peas from my diet for the time being. I'll stick to meat, fish, vegetables, and fruit (though I have to watch out for certain fruits that are high in starch and maltose).
For breakfast today, I had fruit yogurt and an orange, and for lunch, I had chicken breast and cooked spinach. I don't expect to feel better immediately; I know from experience that it takes time for those problematic compounds to clear out of your system. Oh, and I’ve noticed my urine has a strange smell—kind of like sulfur or a savory seasoning blend. I know it sounds a bit dramatic, but it's real.
It's hard to be certain, but it is a significant issue.
So, if you are experiencing anything similar, or if you know someone who deals with these same symptoms, please reach out! You can send me a private message for a more personal chat, or post publicly on the forum so others facing the same struggle know they aren't alone or losing their minds.