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:
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 firstname.lastname@example.org.
I promise I won't just post muffin recipes. They are just one of my favorite quick foods for breakfast or a snack.
-1/2 cup sugar
-1/2 cup oil (your choice what type)
-2 cups spinach
-1 1/4 cup almond flour**
-1 cup gluten-free oats***
-1/2 tsp salt
-1 tsp baking soda
-1/4 cup chia seeds**
-1/4 cup ground flax seed**
-1/4 to 1/2 cup chocolate chips (dark or milk chocolate)**
-In a blender mix sugar, bananas, eggs, oil, and spinach.
-In a separate bowl, mix together almond flour, gluten-free oats, salt and baking soda.
-Remove banana mixture from blender and stir with dry mixture.
-Stir in chia seeds, flax seeds and chocolate.
Spray and fill muffin trays 1/2 full with batter. Bake at 350 degrees for 20 minutes. Makes 12-15 muffins.
*Those following a low FODMAP eating plan often times tolerate the less ripe banana over a very ripe banana. Either one can be used in this recipe, depending on your toleration.
**Based on the Monash App the green light is given for:
-Almond flour at (1/4 cup)
-Gluten-free rolled oats (1/2 cup)
-Ground flax seeds (1 TBSP)
-Chia seeds (2 TSBP)
-Milk chocolate (1 fun size bar)
-Dark chocolate (5 squares)
Since this makes over a dozen muffins, these green light servings are safe. Just remember not to eat too many muffins each day!!! These can be refrigerated or frozen.
***Caution using oats for the first 6 months if you are a newly diagnosed celiac. If you are past the 6 months or have a gluten sensitivity please purchase certified gluten-free oats.
Many of my clients comment that co-workers, friends and even sometimes family are not understanding of their diagnosis or why they are eating a certain way. It is difficult to be in social settings with food and feel like you aren't eating like everyone else, or able to eat anything at all. I reached out to a licensed mental health counselor, Denise Cutshaw to get her opinion on how individuals can deal with outside pressure when given a diagnosis that effects the foods they can eat. Enjoy! And at the end of her blog are a few extra questions I had for her.
Whether you, or a loved one such as your spouse, child or other family member has been recently diagnosed with any type of gastrointestinal issue, food allergy or intolerance, it can feel very overwhelming. You start with educating yourself on the types of foods that are “safe” and may even reach out to a registered dietitian to help you with a food plan (highly recommended!).
Then…the feelings set in as you begin to navigate through get togethers, parties, celebrations, holidays, office breakfasts/lunches, and traveling. Common feelings that may arise are loneliness, isolation, feeling misunderstood, frustration, anger, defeat, anxiety or even depression. If these feelings are persistent for you, it may be beneficial to talk with a counselor. Counseling can help someone with a recent food allergy/intolerance or autoimmune diagnosis, such as celiac, better cope with these feelings and how to ask for help and support from loved ones and friends. Children can especially find benefit in talking with a counselor and seeking out support groups to help normalize their feelings by being exposed to others with similar circumstances.
Counseling can help an individual process and work through some of these feelings through different modalities of treatment. Cognitive Behavioral Therapy is extremely beneficial in identifying one’s thoughts, feelings, and behaviors as it relates to food and outings with food. Assertiveness skills can be taught and reviewed as a means of making sure you build a safety net around your core people that are aware of restrictions and are sensitive to your needs or the needs of your child. Thirdly, psychoeducation can be provided through the counseling relationship as well as with your dietitian on acquiring knowledge and education on your limitations/diagnosis.
Life transitions and events can certainly contribute to an onset of depression and/or anxiety. When to be concerned or seek out help for depression and/or anxiety symptoms depend on a multitude of factors. Consider these presenting factors for depression and seek counseling to help address these:
Questions for Denise:
Question: How should patients/clients deal with co-workers, friends, etc. that continue to make comments about what they are or aren't eating? Even adults can somewhat "bully" another adult and make them uncomfortable in social situations with food. Often times these individuals avoid situations that involve food because it is uncomfortable, especially around those that don't understand. This comes up with a handful of clients and it is easy for me to tell them to tell their co-workers it is a doctor's order, but this doesn't always make the situation better.
Answer: It's hard to deal with people that don't understand and make comments about food whether they are rude comments or bringing attention to it. Some ways to manage that is to be as educated as you can be on what foods are "ok" for you and why so you can respond with "I've learned so much about what works for me" or "it was a little difficult for me too at first to understand, but I've really educated myself and found what works and it is helping tremendously".
When loved ones that we are very close to continue to make comments, using "I feel" language is also helpful. For example. "When you make comments about my food, it makes me feel anxious and on edge. I need for you to be understanding of my food choices and not make those comments". That type of language allows an openness about how the comments make you feel and if the person is still unable to honor your needs, you can then decide to restrict your time with them, especially around food. You can also invite close loved ones with you to a dietitian or doctor appt. to assist in education on the matter so they have a better understanding.
Question: Do you encourage a significant other (if the person with the diagnosis is an adult) to join them for these professional visits, such as with the dietitian or yourself? Some family members are not supportive, so do you think it helps to have them present or hurt? I see this with individuals that have been dealing with these GI issues for a long time.
Answer: As a counselor, I truly feel that getting as many people involved in your care is so very important. It can assist in the person's support network with education but also insight into the feelings of the person affected and how these food issues impact them on a daily basis. For children, any caregiver that will be caring for the child and feeding them meals or snacks would benefit from attending any appointments as well. Even the parents of friends of your child can be educated and provided a "safe list" of snacks and foods okay to eat while your child is over at their home playing. This helps reduce any potential anxiety for the parent or child and the child doesn't feel "singled out" having to sit out for snacks during play times.
Overall, being assertive and open is always best in the care for yourself or your loved ones who struggle with food issues. If you're finding you're avoiding situations around food either yourself or your child, it could be an indication you may need to be more open and assertive about your needs or the need of your child as well as your feelings so people can better understand and be educated.
Denise Cumshaw, LMHC is on leave at this time and not accepting new patients, but if you need more information or feel like you may benefit from counseling services please contact her at email@example.com.
I am always looking for something different to eat for breakfast. I'm not one of those that can eat the same thing every day, so I look for variety in my meals and snacks. Plus, I often need something that I can just grab and bring with me.
-2 cups grated zucchini
-1 cup blueberries or raspberries (after measuring 1 cup, mash or puree them up-will be about 1/2 cup)
-1 cup spinach (after measuring 1 cup, chop up the spinach)
-1/2 cup chia seeds
-1/4 cup sugar (you could add less if you would like-my berries were a bit sour tasting)
-1/2 cup oil
-1/2 cup liquid, such as regular milk (if tolerated), lactose free milk, almond milk, etc.)
-1 cup gluten-free oats
-1 cup flour (I used Bob's Red Mill GF, but you could use anything, such as almond flour, etc)
-1 tsp salt
-1 tsp baking soda
-1/4 tsp baking powder
-1/4 cup ground flaxseed (FODMAP approved to 1 TBSP-these make 15-18 muffins, add less if needed)
-Fold in whole berries, nuts, chocolate chips, etc.
Mix the first 8 ingredients. In a separate bowl, mix the remaining ingredients (except the extras, such as nuts, chocolate chips, etc). Then, mix together the two bowls of ingredients. Fold in extras if you are adding them. Spray a regular size muffin tin and fill to the top with muffin batter. Bake at 350 degrees for 20 minutes.
This is a FODMAP friendly muffin. It is gluten-free as well, but if you are newly diagnosed even gluten-free oats are cautioned against for the first 6 months. Please leave your comments if you decide to make them! Let me know if you change anything. I am always open to suggestions!
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