Have you been diagnosed with sucrose intolerance and are wondering what to eat that won’t cause symptoms? Here’s what I eat in a day since my diagnosis as an adult with acquired sucrose intolerance.
Update: I am not a year out from diagnosis and continue on my path to recovery. Click here to read a progress update about my recovery from acquired sucrose intolerance.
- What is Sucrose Intolerance?
- What are the Symptoms of Sucrose Intolerance in an Adult?
- Treatment for Sucrose Intolerance
- Start with an Elimination Phase
- Test for Your Tolerances
- What I Eat in a Day for a Sucrose Intolerance Diet
- Other Intolerances
- Sucrose Intolerance Tests
- Sucraid and Other Digestive Enzymes
- CSID and Sucrose Intolerance Recipes
- Managing Your Emotions
What is Sucrose Intolerance?
Sucrose Intolerance is a disorder that causes a reduction in the activity of the enzymes sucrase and isomaltase, which are responsible for the absorption of table sugar (sucrose) and other sugars found in dietary starches.
The disorder may be referred to as:
- Congenital Sucrase-Isomaltase Deficiency (CSID)
- Sucrose Intolerance
- Sucrase-isomaltase (SI) deficiency
- Disaccharide intolerance
- Genetic Sucrase-Isomaltase Deficiency (GSID)
Sucrose Intolerance can be genetic or acquired. If acquired later in life, it’s possible to heal and recover.
Symptoms of SI include diarrhea or constipation, bloating, gassiness, abdominal pain, failure to thrive, and malnutrition.
What are the Symptoms of Sucrose Intolerance in an Adult?
For me, the signs of sucrose intolerance included stomach pain, extreme bloating that was worse after meals and worse as the day went on, nausea, constipation, and very bad heartburn. Later, I developed debilitating fatigue and bloodwork showed malnutrition.
Treatment for Sucrose Intolerance
The treatment for sucrose malabsorption in both children and adults is:
- Low sucrose and starch diet
- Digestive enzymes
Sucrose foods to avoid include those you would think of such as sugary candies, drinks and desserts, but also sucrose in foods like fruits and vegetables needs to be monitored. Tolerance for sucrose varies by person and if digestive enzymes are taken with food.
Starches are present in starchy foods like rice, beans, and pasta, but are also in many other foods like vegetables and packaged foods, and most people with SI have sensitivity to even smaller amounts of starch.
Most people with SI follow a very low carb, ketogenic type diet plan. There’s no need to be in ketosis for this diagnosis – it’s simply that starches and sugars cannot be tolerated. Digestive enzymes and Sucraid help some, but only enough to compensate for small amounts (in some people, trace amounts) of these foods.
If you think you may have diagnosis, take this sucrose intolerance quiz and speak to your doctor.
Below are examples of what I eat in a typical day as an adult with acquired sucrose intolerance, as well as lactose and fructose intolerance.
I am not a doctor and this is not intended as medical advice.
Start with an Elimination Phase
When you are first diagnosed with SI, I highly recommend you start with a strict elimination phase where you eat only eggs and meat. Do this for 2-7 days to allow your body to heal.
Do not use any spices except for salt. (Many spices have starches and spice mixes can be especially bad.)
I know it’s no fun to eat this way, but remember it’s only for a couple days. When I have a flare, this is the diet I return to for a few days to reset my system because it doesn’t have any disaccharides, which is what our bodies are struggling to digest.
Keep in mind that you’ll be cutting all carbs so you might experience symptoms of dehydration (similar to what people call Keto flu). Drink plenty of water and salt your food liberally.
I tend to get nauseous when I follow this meat and eggs only diet, but it’s a different feeling from a flare up from eating foods I can’t digest.
Test for Your Tolerances
Once you’ve reset with a meat and eggs diet, it’s time to start testing for what you can tolerate.
The next step is to gradually add back foods, one at a time in small servings, until you find what you can tolerate. This is more weeks of no fun and doing small tests to see which foods (and in what quantities) are your triggers.
I focused on adding back vegetables mostly. As someone who is maintaining a 100+ pound weight loss, veggies are extremely important to me to keep me full and satisfied. Plus, while many vegetables have some sucrose or starch, the amounts are low.
Take care that you are not intolerant to FODMAPs. (I am not, but many people with a sensitive gut are), because you could be reacting to those instead of the sucrose.
It’s generally recommended that you keep sucrose servings to less than 2 grams per meal if you don’t have Sucraid. Your tolerance will vary depending on how much of the enzyme your body is making.
Starch tolerance varies widely with people being able to tolerate 5-50 grams per meal.
Note that SI is different from gluten intolerance. Many gluten-free foods are still high in starch and possibly sucrose as well.
What I Eat in a Day for a Sucrose Intolerance Diet
Here’s an example of typical meals for me as an adult with acquired sucrose intolerance.
Breakfast is eggs, vegetables, and sometimes meat. I tolerate all types of eggs and eat scrambled, poached, omelets, and sunny side up. I eat sugar-free bacon such as Applegate Farms, meat I’ve prepared from meal prepping or from dinner the night before or a can of sardines.
Then I add vegetables like spinach, arugula, zucchini, mushrooms or a few pieces of tomato.
Lunch is meat and vegetables. Meat I eat for lunch are usually from batch cooking on the weekends and include chicken breasts or thighs, pieces from a whole baked chicken, pork chops, beef or pork roast, fish, shrimp, or sirloin beef steak.
Vegetables I add are spinach, arugula, cabbage (in limited amounts), carrots (a few), zucchini, Brussel sprouts, butternut squash (limit), acorn squash (limit), mushrooms, broccoli and cauliflower.
Dinner is meat and vegetables that is similar to lunch. When possible, I try to eat a portion of what my family is eating that I can tolerate, or something similar.
I do not eat any bread but I use Egglife wraps and Crepini on occasion to make tacos or wraps. I’ve made soup with chicken and my tolerated vegetables.
I like Palmini and spaghetti squash as noodle replacements.
This chicken pizza crust is not bad! I ground about 2 cups of cooked chicken in the food processor and added 2 eggs and a few Italian spices, and garlic salt. (Try garlic salt – you may tolerate it better than garlic powder.) Spread as thin as you can make it into a cookie sheet lined with parchment. Bake at 400 degrees until quite crispy. This takes awhile, at least 20 minutes. Add toppings you can handle and bake a few minutes more.
This crust recipe works for a cracker-like bread too when cut into squares. Be sure to store in the fridge and re-crisp in the toaster or air fryer when eating.
I’ve gotten out of the habit of snacking since it’s a bit of a pain with Sucraid and the digest enzymes. I’ve also found that my body really needs a good 4-5 hours between meals to digest since my digestion runs slow.
But if I were snacking, here are the foods I would eat. Sometimes I eat one of these at the end of a meal as my “dessert”. I do eat dairy on occasion, with Lactaid, but I find too much upsets my digestion so I limit it.
Low Sucrose and Starch Snacks:
- Pork rinds – plain. These have been my go-to treat during SI. They may not be the most healthy but at least it’s something that feels like a treat!
- No-sugar added bacon
- No-sugar added deli meat
- Chobani Zero Sugar yogurt
- Two Good yogurt
- Cottage cheese
- Keto Chaffles
- Egg, chicken or tuna salad. I use Sir Kingston’s mayo.
I drink water, hot tea, and black coffee. I’ve done splashes of almond milk in things but don’t drink it regularly.
Many people who have Sucrose intolerance or sucrose malabsorption have other digestive problems or food intolerances. This is because if the enzymes aren’t working or there aren’t enough to digest one food, it’s no shock that others are also malfunctioning.
Almost everyone with SI has some level of starch intolerance. This varies greatly by person. My tolerance to starch is very low, unfortunately. When I tested it, I started having symptoms after a couple bites of potato or rice.
Starch is not specifically listed on food labels so you’ll have to estimate with most things. Starchy foods are all the ones you would assume like pasta, rice, corn, wheat flour, and potatoes, but there’s starch in other things too like nuts and winter squashes.
Other places to look for hidden starches:
- Gluten-free foods
- Vitamins and supplements
- Spice and seasoning mixes
- Prepared foods of all types
Not all people who have SI have fructose intolerance, but I discovered that I do and it was a game changer.
I started on a low sucrose and starch diet and took Sucraid, but I still had constant stomach pain and bloating. My doctor ordered a fructose intolerance breath test, which came back positive. (If you can’t get a breath test, you can test for fructose intolerance at home by doing a trial of 1 and then 2 and 3 tsp of honey. If you react, it’s likely fructose intolerance.)
Once I cut back on almost all fruit, any packaged foods with fructose, and vegetables high in fructose, I started to really see improvement.
I also started taking Fructaid supplement with any meals that have fructose. It’s expensive but for me worth it because I do think it helps.
Many people with SI also don’t digest the lactose from dairy. The supplement for this, Lactaid, is commonly available. You can also choose not to eat foods with lactose or any dairy at all.
Dairy can be hard to digest so keep in mind that even if you manage the lactose, you might still have symptoms from dairy.
I’ve found that I can tolerate some dairy with Lactaid but need to keep it to one serving a day. I’ll eat a small serving of cheese or some no sugar yogurt, but I don’t drink big glasses of milk.
Sucrose Intolerance Tests
Here is how to test for Sucrose intolerance.
Small Intestine Biopsy
The gold standard test for SI (and what is used for CSID) is a small intestine biopsy for enzyme levels. This is the best test because you get real numbers that tell you how much your enzymes are or are not working.
This test is common in pediatrics but extremely difficult to get for adults. Why, I have no idea.
Sucrose Breath Test
The next best test is a breath test. You get the test from your doctor and can take it at home. You drink a sugary drink and then take breath samples over the course of a couple hours.
The sucrose breath test itself is completely painless and non-invasive but keep in mind that if you do have sucrose intolerance, you might have strong symptoms and be sick that day or into the next couple days.
Results come back to your doctor within a few days.
Sucrose Test at Home
You can take a 4-4-4 sugar challenge at home to test for Sucrose tolerance on your own.
Sucraid and Other Digestive Enzymes
Sucraid for Sucrose Intolerance
Sucraid is a digestive enzyme that treats Sucrose Intolerance and is available only by prescription. I take Sucraid every time I eat. Sucraid helps with the digestion of sucrose. It does not help with starches or any other food intolerances.
Sucraid allows you to eat SOME sucrose but for most people, not very much. It helps cover trace amounts in foods like vegetables and fruits, but it doesn’t allow you to eat a doughnut or a piece of cake.
Sucraid is extremely expensive. At the time I’m writing this, Sucraid is $14,500 for 3 bottles, which is about a 1 month supply.
Because of the high cost, most insurance companies will deny Sucraid coverage at first, but you may be able to appeal and get it covered. This is what happened for me. The appeal process took about 3 months. This is agonizing because I finally had a diagnosis, I knew there was a treatment, and I had to wait. I started following a low-sucrose diet during this time but still had a lot of symptoms.
Even with insurance coverage, the co-pay for Sucraid is quite high. The company has a patient assistance program and this is a huge help since it covers my co-pay and I only pay $5.
Sucraid is only made at one pharmacy, U.S. Bioservices and it is shipped to your home.
Sucraid is a fragile medication. It must be kept cold and dark. Once the bottles are open, they must be used within 28 days. Sucraid is added to a small amount of water and sipped throughout the meal.
Once you take Sucraid, the effect lasts for about 30 minutes. If your meal lasts longer than 30 minutes, you need to take another dose.
Other Digestive Enzymes
I take a couple other digestive enzymes as well. These are available without a prescription.
- Starchway – Available from Intoleran (no script needed). This company is not in the United States but you can order from the Britain or Australian company and they will ship to other countries. Expect shipping to take several weeks. Starchway is meant to help with the digestion of starches and sugars. Lots of people like it even better than Sucraid. I haven’t had as much success with it so you’ll have to try it and see if it helps you.
- Digest Gold – This is a multi-purpose digestive enzyme that is considered one of the best on the market. I take one with every meal.
- Fructaid – This helps with the digestion of fructose. This is only necessary if you are fructose intolerant. It’s quite pricey (because you have to take 4 pills at a time, and yes, you really do need that many) but I find it helps me a lot. I take it anytime I eat foods with fructose.
- Lactaid – Aids in the digestion of the sugar in milk.
CSID and Sucrose Intolerance Recipes
Where can you find recipes that are safe for this diagnosis? Here are some helpful resources.
CSID Info – Many of these recipes are submitted by parents of children who have CSID.
CSID Family – Recipes from a family who has children with CSID
Low sucrose menu – PDF from makers of Sucraid
Many Keto recipes are appropriate for Sucrose Intolerance and CSID. Be sure to choose what you know works for you based on the elimination diet. (For example, many Keto recipes use almond flour which some people can tolerate and others cannot.)
Whole Some Yum – Keto recipes
Free Printable Keto Getting Started workbook – from The Holy Mess
Keto Meal Plan – Two week Keto meal plan
Free Printable Keto Food List – from The Holy Mess
Managing Your Emotions
If you or someone you love has been diagnosed with Sucrose Intolerance, please give yourself grace and time to accept the diagnosis. This is a tough, life-altering situation. The good news is that there is treatment available.
Set realistic expectations. For many people, the diet and Sucraid help but you will still suffer with digestive issues.
For people with aquired Sucrose Intolerance, I’ve been told it can take a year or two for the gut to heal.
The diet is hard because food tastes good and there are just so many foods you cannot eat. It’s also isolating. Christmas was a tough time for me as I watched my family eat all my favorites and I had to sit out eating the snack mix, sugar cookies, and ham that signal the season for me.
Yes, there are alternatives foods available (like sugar-free Keto crackers, breads, and chocolate) but those are tricky. Foods with artificial sweeteners or replacement products can still trigger flare-ups and have to be tested individually over time.
You may have feelings of guilt, frustration, self-pity, worry, and anger. I know I sure have.
But let me encourage you that there is much hope. It took a couple months, but I’m already feeling so much better! My stamina is improving. I have energy to do more daily tasks. My mood has improved.
If you or someone you love has been diagnosed with SI, share about it in the comments below. You are also welcome to email me. I don’t have all the answers but I’m happy to share what I know from my experiences. Most of all, know that you aren’t alone.