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CSID


Lauren72
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I hope I can reach out to as many people as I possibly can. I have a long story about my sickness, was diagnosed with IBS twice in my life now. The second time was IBS-D this past April. I joined this group for research and help as I was exhausting myself to find out how to get better and what everyone else is doing. After many failed IBS treatment and meds, I thought maybe I had a vitamin deficiency. I had self diagnosed my self with lactose intolerance about 5 years ago and had gave up diary completely, minus some cheeses and thought maybe I wasn't getting enough calcium. I had asked my gastro doc to give me a blood test to check my vitamin levels and he stated that its too expensive and he doubted that that was the problem. Meanwhile our next step was to try antidepressants which scared that crap out of me. I had had enough, him telling me that made me furious and with a push from my boyfriend I decided to get a second opinion. I was scared that I would have to do 2 years worth of testing all over again. The new gastro came highly recommended. He spent the necessary time with me, I brought in all my test results and he called my last doc to get my biopsy results from prev. endoscopy and colonoscopy. Sent me home with a sucrose test, blood lab form and see him in 3 weeks. Labs were good, I was diagnosed with CSID, (congenital sucrose-isomaltose deficiency). I just found out last Thursday. The symptoms of this deficiency are the exact same as IBS-D. Flu-like symptoms, stomach aches, sometimes vomiting. This is a rare diagnosis, but please ya'll. Ask your gastro for the test. Its simple to do at home and send off. I feel like I need to tell the world! Be persistent with your docs and don't ever give up on finding out what's wrong. If they don't listen, go see someone else.  

Now, even though I have a diagnosis that has given  me a huge relief. I have been prescribed Sucraid, (sucrose enzyme to help digest sugars and starches) which my doc said take 3 times a day before meals and I will see you in 3 months. Easy right?! Wrong. This med comes from only 1 pharmacy, when I looked online at the cash price its 8000.00. !!!!! I got a call from the pharmacy last night and my insurance denied it. They are going to resubmit, but I think even if they even cover it partially, that it will still be too expensive. I already take 2 meds for my thyroid and that enough expense. So I have joined 2 CSID support groups on facebook, doing research and hoping to find an enzyme I can buy over the counter and adjust my diet, even moreso that the FODMAP I was doing. This diet is similar to the FODMAP but more like Keto without any breads. 

Even though this is a good news/bad news story, I hope I can at least help a few people get diagnosed. I'm still struggling with the diagnosis but at least I know now. I always felt in my gut that IBS-D just wasn't the right diagnosis for me. I'm not stating it doesn't exist, because the symptoms are real and definitely life debilitating. I have much to learn yet. 

 



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  • Lauren72 changed the title to CSID
Jeffrey Roberts

Wow!! That's really good for you that you found out that you have CSID rather than IBS.

I wrote about CSID when I returned from a medical conference last May. I was as amazed at you that this was a condition that many people might not know they have.

Thank you for sharing your story with us.

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Could it be Congenital Sucrase-Isomaltase (CSID) instead of IBS-D?

Congenital Sucrase-Isomaltase (CSID) is a disorder that I was not aware of until the presentations I attended at DDW. CSID affects a person’s ability to digest certain sugars. People with this condition lack the ability to breakdown the sugars sucrose and maltose, two simple sugars found in fruits and grains respectively and in more complex sugars like carbohydrates. Sucrose is normally broken down into glucose and fructose and maltose is normally broken down into two glucose molecules. CSID is usually diagnosed in infants when they first start to eat solid foods, namely fruits, juices and grains. A child with CSID will have stomach cramps, bloating, excess gas and diarrhea. Pediatricians regularly consider this if an infant has these symptoms; however, older children and adults who see their doctors for similar symptoms are not considered to have CSID because doctors do not consider this at later ages, perhaps believing that it would have been caught earlier.

CSID is caused by mutations in a gene. The gene provides instructions for producing the enzyme sucrase-isomaltase which is responsible for breaking down sucrose and maltose. Using a sucrase enzyme as a supplement, similar to how lactose intolerant people use the lactase enzyme to digest lactose, which is found in milk, allows people with CSID to digest sucrose and maltose found in foods. Sucrase enzyme is available by prescription.

Dr. William Chey from the University of Michigan delivered a talk where he feels that CSID may be under-recognized in adults because it is not something that an adult gastroenterologist considers. He said, “it is not something that is taught in medical training for gastroenterologists so it’s not on their radar.” He feels that CSID symptoms are similar to diarrhea-predominant IBS (IBS-D). Dr. Chey described a person with CSID as someone who has high loose-stool frequency, a family history with IBS-D-like symptoms, and carbohydrate / sweet food avoidance and may report that very sugary desserts (birthday cake) cause more severe symptoms. They often have a low body mass index (BMI) and are skinny.

Research for CSID and IBS indicates that CSID is found more often in IBS patients than healthy people. In fact, IBS patients have nearly two times higher odds of carrying a CSID mutation than people who show no CSID symptoms. CSID could be found in as much as 8% of the population. To put that into perspective, it is estimated that slightly less than 1% of people have celiac disease, the inability to digest wheat, and 10-15% of people have IBS.

The gold-standard for testing for CSID is to biopsy cells from within the small bowel; however, there are other ways to test. One alternative is a carbon-13 sucrose breath test, which has a high degree of accuracy. A sample can be taken at home and sent for testing.

Dr. Chey performed a small study that looked at IBS patients who failed to respond from using the low FODMAP diet to manage their IBS symptoms. The results suggested that those who failed should be considered for CSID.

Congenital Sucrase-Isomaltase (CSID) is worthy of exploring for those that continue to have IBS symptoms that do not respond to the usual treatments. I personally intend to investigate CSID as an explanation for my IBS symptoms as my symptoms seem to fit the profile. CSID is a perfect example why patients with digestive illness should not be diagnosing themselves, because there are many illnesses with similar symptoms, like CSID and IBS-D. Working with a knowledgeable physician, who is open to explore different options like CSID, is our best way to being diagnosed and treated correctly.

Source(s):

Digestive Disease Week 2019, Presentation 347, Is Sucrose the Sixth FODMAP in a subset of Patient with Irritable Bowel Syndrome with Diarrhea and Sucrase Isomaltase Deficiency?, Shanti L. Eswaran, Tenghao zheng, Mauro D'Amato, William D. Chey

Could It be CSID: Is CSID an Under-Recognized Patient Population with Unresolved IBS-D Symptoms?, William D. Chey, delivered May 20, 2019, sponsored by QOL Medical, endorsed by GI Health Foundation

US National Library of Medicine, NIH, Congenital sucrase-isomaltase deficiency, https://ghr.nlm.nih.gov/condition/congenital-sucrase-isomaltase-deficiency on May 31, 2019

 

 

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  • 5 months later...

i just found this site, since I just realized I had CIBO.  I have had stomach problems my whole life (I'm 69) and been tested and diagnosed with IBS and spastic colon, etc.  About 3 years ago I got really bad. I could not eat anything without rushing to the bathroom. It got to the a joke among my family and friends, but it started being a big problem when I was standing in a store and I realized I would not  make it to the bathroom.  I had not even eaten lunch yet.  Finally went to a Colon and Digestive doctor who did a colonoscopy and told me I had Crohn's. However, the two different medicines they gave me over about a 6 month period had no effect. My daughter had a friend who had been diagnoses with SIBO and she insisted that she go to an appointment with me and asked the doctor to please test me for SIBO. They were reluctant but gave me the test kit, which I did at home and mailed in. A week later I got the results. I had CIBO, a lack of the enzyme that digests sugar.  I was prescribe Sucraid and fortunately, between Medicare and another insurance I have I only pay a small amount each month.  It took about 2 days for me to tell a big difference. I was meticulous about what I didn't eat. As I got better I realized I could eat small things without taking the medicine.  I only used it for major meals.  I've been on it for about a month and half.  I definitely feel better.  What I'm running into now is I have started being constipated.  I have not had that problem in years!!!  I am sure it is due to the CIBO and taking the Sucraid.  I'm not sure which is worse, the diarrhea or the constipation.  This has been a way of life for me (stomach problems, diarrhea, etc.) so I am sure it is just getting used to the treatment.  At least I know what I have and that there is something that can be done.  For those that can't afford the medicine, I'm truly sorry because it is a wonder drug.  I can't imagine why a small bottle of clear liquid that tastes like sugar costs so much, but I'm not a drug maker.  

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Jeffrey Roberts

Gayle,

I believe you are describing CSID (congenital sucrase-isomaltase deficiency) vs CIBO.

That's wonderful that you found a diagnosis and that Sucraid was available to help you.

I don't know about the cost of Sucraid either. I suppose if more people start using it the cost will eventually be reduced.

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  • 4 weeks later...

I just got diagnosed a couple weeks ago, I took a breath test and it showed I had CS ID I didn’t believe it so I took another one and it came out the same. I have been dealing with these symptoms severe diarrhea and bloating for years . I mean where I look like I am about to give birth to four babies. My doctor prescribed me sucrid and my Insurance covered it with just a five dollar co-pay, But I’m afraid to take it it has horrible side effects I’ve changed my diet no dairy no grains no sugar that has helped but I’m still not 100%

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  • 1 year later...

I was just diagnosed with CSID and I am looking for more information about the foods and potential recipes. Does anyone have a website or book they found to support this type of diet? I have some recourses from my Doctor but I am not finding much out to help with diet. 

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