What is Congenital Sucrase-Isomaltase Deficiency (CSID)?

by Valerie Polley | Jan 15, 2019 | 10 comments

I attended a three day GI conference at the University of Michigan in September. It was an amazing conference packed full of presentations from some of the best GI doctors and dietitians. One presentation was on a topic I had never heard of, so I was intrigued and ready to learn more about it.

​Congenital Sucrase-Isomaltase Deficiency (CSID) is a rare disorder that causes individuals the inability to digest certain sugars due to an absence or low levels of two digestive enzymes, sucrase and isomaltase. Both of these enzymes are involved in the digestion of sugar and starch. Table sugar is broken down into glucose and fructose with the help of the sucrase enzyme. Isomaltase is one of the several enzymes that help digest starches.

Both sucrose (found in fruits, and known as table sugar) and maltose (sugar found in grains) are disaccharides, which means they are made of two simple sugars. During digestion, intestinal enzymes break these down into simple sugars called monosaccharides. Sucrose=glucose + fructose and maltose=glucose + glucose. An individual with CSID has difficulty breaking down the disaccharides into monosaccharides that the body uses for fuel. These disaccharides are too large to be absorbed in the intestines by the microvilli (known as the brush border).

Starch can be a simple or complex carbohydrate. Simple carbohydrates have one or two sugar molecules, and complex carbohydrates have three or more sugars linked together.

Multiple enzymes are needed to properly digest starch. Digestion begins in the mouth with an enzyme in the saliva called amylase. Digestion continues in the stomach by further breaking down the food. In the small intestine, starch is processed by an enzyme called pancreatic amylase and converted into maltose and sucrose. The brush border contains numerous enzymes (sucrase, lactase, maltase) to continue the breakdown of digested food into smaller particles that can be better absorbed. The isomaltase enzyme breaks the bonds linking sugars into glucose, which can't be broken down by amylase or maltase. This is one of the final steps in the digestion of starch to glucose.

To sum it up, those with CSID lack the sucrase and isomaltase enzymes to properly break down the food to a simpler form, so the body can absorb it.

Without the proper enzymes, digestion can't take place correctly and individuals can have symptoms, such as:
-Chronic Diarrhea
-Abdominal Pain
-Abdominal Distention
-Excess Gas
-Weight Loss
-Constipation
-Acid Reflux
-Burping

So, what do you do if you suspect you have CSID?
Visit sucroseintolerance.com to take their quiz. On that site there is also an "ask your doctor" form to take to your physician. A sucrose breath test can help with the diagnosis. This can be ordered by your doctor or I can order a complimentary sucrose breath test to be sent to your home.

What if you have a positive breath test?
You will do a two-week elimination diet of sucrose and starch, followed by a gradual reintroduction of both. The reintroduction will help identify how much of these foods you can tolerate. Many like the guidance of a dietitian familiar with this deficiency to help them navigate through the elimination and reintroduction phases. Others also do the diet along with a test of the sucrase enzyme, Sucraid® (sacrosidase) Oral Solution. The sucrase enzyme can be purchased through One Patient Services, a subsidiary of QOL, Medical, LLC, the manufacturer of Sucraid® Oral Solution, at SucraidASSIST.com.

Please consult with your doctor regarding your symptoms and for a final diagnosis.

If you have any questions regarding Congenital Sucrase-Isomaltase Deficiency, please feel free to call or text me at 410-963-4782 or email at valerie@bluetreenutrition.com.

Our gut microbiome (the community of trillions of microbes that live in our gut) plays a key role in maintaining metabolic and immune health. Gut dysbiosis occurs when the composition and diversity of our gut microbiome shift. This could include overgrowth of harmful bacteria or a decrease in beneficial bacteria. Gut dysbiosis has been linked to a wide range of negative health outcomes, including increased levels of inflammation and changes in metabolism.

Many people switch to non-nutritive sweeteners like sucralose, aspartame, and stevia for health reasons, and for decades, we've believed that they pass through our bodies without affecting us. But emerging research shows that these compounds interact directly with our gut microbiome and may have potential negative effects on our health. 

This article will review what we currently know about the relationship between non-nutritive sweeteners (including artificial sweeteners and calorie-free natural sweeteners) and the gut microbiome, plus practical advice for navigating sweeteners.

Sucralose

Sucralose (Splenda) is an artificial sweetener commonly used in baked goods, gums, and sugar-free beverages and is approximately 600 times sweeter than sucrose (table sugar). However, recent research has linked it to adverse health effects such as systemic inflammation, metabolic disease, and gut dysbiosis. For example, a 2022 study found that sucralose consumption increased harmful bacteria and reduced beneficial bacteria, which was associated with changes in insulin and glucose levels.

Additionally, a 2025 randomized controlled trial examining the effects of replacing added sugars with sucralose found that people with type 2 diabetes who consumed sucralose experienced reductions in both alpha diversity (the number and types of species present in a single person) and beta diversity (differences in microbial composition between people). Interestingly, the people with overweight and obesity without type 2 diabetes did not experience the same changes.

Overall, animal studies and limited human studies suggest that sucralose may trigger intestinal inflammation, likely through its effects on the gut microbiome. However, since most of the evidence we have comes from test tube or animal studies, these results should be interpreted cautiously.

Aspartame

Aspartame is another commonly used artificial sweetener that is about 200 times as sweet as sucrose. While it does contain some calories, because you don't need much of it to reach the same sweetness levels as sucrose, these calories are negligible.

Like sucralose, most of the research into the gut effects of aspartame has been done in animals. However, we do have some very small human studies. A 2022 randomized controlled trial (RCT) involving 20 healthy adults found that participants taking aspartame showed changes in both probiotic (beneficial) and pathogenic (harmful) bacteria, but the changes were specific to each individual. 

Why the differences? It's likely due to the "responder vs. non-responder" phenomenon. We all have differences in our "baseline" microbiome. While certain bacterial species are common in healthy populations, our microbiome is as unique as a fingerprint. Whether an artificial sweetener has positive or negative effects on our microbiome may depend on which species are already present in our gut, as well as on our habitual diet. This difference in responses makes it very challenging to draw firm conclusions about whether artificial sweeteners are harmful.

Stevia

Many people choose stevia because it's a "natural" zero-calorie sweetener. Studies have shown mixed results regarding the effects of stevia on the gut microbiome. For example, while some in vitro (test tube) and in vivo (animal) studies have reported potentially harmful effects of stevia on the gut microbiome, others have found no impact, and some even reported beneficial effects through inhibition of inflammatory pathways.

Additionally, a 2024 human study found that stevia had no significant effect on the gut microbiome. This highlights the importance of not forming conclusions based solely on test tube and animal studies. Overall, it appears that stevia is a potentially less-harmful alternative to artificial sweeteners like sucralose and aspartame.

Practical Advice for Navigating Sweeteners

Since the research on artificial sweeteners is still evolving, the decision to include or avoid them comes down to personal preference. Here are some tips for including them in your diet in moderation:

  • Try gradually reducing the amount you use: If you typically use two packets of sweetener in your coffee or tea, try gradually reducing to one packet. Our taste buds are highly adaptable, and you may find that one packet is sweet enough once you get used to it.
  • Check your labels: Low- or no-calorie sweeteners (such as sucralose, aspartame, and sugar alcohols like erythritol) are often hidden in low-sugar foods like protein bars, yogurt, and diet sodas. Awareness is the first step to reducing your intake.
  • Rotate your sources: If you do use artificial sweeteners, try switching up the types you use. Since different sweeteners may affect your gut microbiome in different ways, this may reduce the concentrated impact on your gut.
  • Switch to stevia: While animal and test-tube studies show mixed findings, human research indicates that stevia has a limited effect on the gut microbiome, making it a better choice for people seeking to support their gut health.

Another way to support your gut if you regularly use artificial sweeteners is to rebuild gut diversity with fiber and fermented foods, while focusing on whole-food sweeteners.

  • High fiber prebiotic foods (like legumes, whole grains, garlic, onions, asparagus, and under-ripe bananas) act as "fuel" for your healthy gut microbes. Aim to include a variety of these foods in your diet to support the microbes already in your gut.
  • Add fermented foods, like unpasteurized sauerkraut and kimchi, kefir, or kombucha, to your diet. Some fermented foods contain live, beneficial bacterial cultures, while others are rich in "postbiotics" (beneficial compounds like short-chain fatty acids, which are produced when bacteria break down prebiotics).
  • Try using whole-food sweeteners instead of artificial ones. For example, sweeten plain yogurt with vanilla extract and berries or add dates to smoothies or homemade energy bites.

Final Thoughts

Emerging research suggests that certain low- or no-calorie sweeteners, including sucralose and aspartame, may affect the gut microbiome, whereas stevia appears to have a less negative effect. While individual responses can vary with a person's unique baseline microbiome, certain artificial sweeteners may increase inflammation or reduce gut microbiome diversity.

If you need personalized support navigating sweeteners or supporting your gut health, Blue Tree Nutrition can help. Click here to get in touch!

 

 

10 Comments

  1. Edy Trujillo

    Valerie,
    I have suffered with an unhealthy gut for years and much likely due to my bad eating habits, I’m slowing improving. Y food choices but get discouraged easily when I can’t pinpoint the cause of my problems. Reading your article makes me think I have CSID. Can I do the complimentary hydrogen test? Thank you

    Reply
    • Valerie Polley

      Edy,
      There can be many reasons for gastrointestinal issues. I will email you at Remeeedy@gmail.com so we can talk more about it.
      Valerie

      Reply
  2. Robin

    I had an endoscopy last Sept. It said CSID. I haven’t really received much more help to live with this beast. I’m on the toilet more than I’m not. I weigh 92 lbs and sad at my body appearance. Saw Rochester Mayo Dr and he is making me take the breath test AND a fructose test too whenever they get in touch with me, because he thinks the biopsy was wrong last Sept. I’m a true mess. I know I do have Sucraid and it seems to help some, if I remember to take it.

    Reply
    • Valerie Polley

      I am sorry you are dealing with this. I see clients with varying degrees of SID. Some have SID with other things on top, such as IBS. Once you get the results of the breath tests, then you can go from there. There are dietitians that can help and I am happy to help as well depending on what state you live in. I would try to use the Sucraid now to see if it gets control of some of your symptoms. You are welcome to reach out to me at valerie@bluetreenutrition.com or 410-963-4782.

      Reply
  3. Vanessa

    Does anyone know of any CSID cookbooks?

    Reply
    • Valerie Polley

      I have never been asked this question, so I did some searching. I found one on Amazon called A Place to Start Without Sugar and Starch. It is for those with CSID. That is the only cookbook I found. Pinterest has some ideas as well. This looks like something that is lacking, but could be very helpful as more individuals are diagnosed with it.

      Reply
  4. Andrea

    My 13 year old daughter was diagnosed last July with CSID and lactase deficiency. She is on sucraid and lactaid. She lost 20 pounds the first few weeks when cutting many sugars and saw improvement. Now she’s back to cramping, bloating. Where can I find directions on how to do the 2 week elimination diet? Any help will.be appreciated. She is very frustrated and sad about her condition.

    Reply
    • Valerie Polley

      I am sorry your daughter is dealing with this. I know it can’t be easy for any of you. I am not sure what you mean by the 2 week elimination diet. Is that for SID or something else? Some individuals with SID also deal with other issues, such as IBS. I would need to evaluate what she is eating now and go from there. I am happy to help out or find another dietitian closer to you. You can reach out to me at valerie@bluetreenutrition.com or 410-963-4782.

      Reply
  5. Christin Firestine

    I live in western nc do you see clients with CSID tele- health or can you recommend someone near me that went to that conference about CSID. Not many are educated in that field.

    Reply
    • Valerie Polley

      I am sorry I am just seeing this now. I have no idea why it didn’t alert me. Every state has different licensure laws and NC is one of those states, so I can’t legally see someone from NC.If you have not found someone there is a great dietitian in your state that can help. Her name is Erin Skinner and I am including a link her website.
      https://www.empowerednutrition.health

      Reply

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Hello, I am

Valerie

My name is Valerie Polley. I am a Indianapolis-based registered dietitian and owner of Blue Tree Nutrition. I consult with clients both local and far away.
I have a bachelor’s degree in nutrition from Purdue University and I have been practicing for 20 years.
I thoroughly enjoy helping clients through their gut health journey. I see a range of GI issues including, but not limited to celiac disease, IBS and SIBO. I also specialize in the FODMAP elimination diet.