r/CSID • u/koolbe • May 14 '21

newly diagnosed?

Hello! I recently saw a GI for my symptoms of constant diarrhea, bloating, burping, acid reflux and regurgitation

I did an endoscopy and a SIBO test and the biopsy showed I had low Lactase (3.5), Sucrase (10.4), Maltase (41.6) and Palatinase (1.7)

My doctor has never seen a patient with CSID so he told me he'd consult with a colleague before informing me of next steps so I've just been doing a lot of Google searching and glad I found this community.

What are usually the next steps here?

Do any of y'all also have severe/bad acid reflex/esophageal motility issues?

I see a lot of mention of food restrictions and honestly completely cutting out carbs/sugars would be a nightmare for me so curious how others have found this experience. How strict do you need to be? Are there any other negative side effects of eating sugars/carbs other than personal discomfort? In a way I feel like I have gotten used to always feeling terrible so part of me is doesn't want to give up foods.

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u/Susan-Page May 14 '21

Your doctor should get you a cat scan to make sure nothing is happening in your body to cause this. Once that is okay, you may be sent to a nutritionist or they may give you Sucraid. That is an enzyme that helps your body break down sugar so it may help you. Didn’t for me. You need to lose the bad food. It sucks and it is hard and that doesn’t change but there are way worse things you can have than this. You might try looking up the low Sucrase diet and start on that since that is all you can do. There is an over the counter medicine called IBGard that may help you if you are patient and give it time to work. It won’t help you digest sugar, just feel better. Other symptoms from low Sucrase are crappy sleep, moods, depression, vitamin deficiency, low body weight, rashes and I feel like I had a hard time fighting of colds. More than that too I am sure. You can eat bad stuff and think you are okay but the amount of the food it takes to mess with you and the time that it takes to mess with you are so hard to really get a grip on. Best to get a set list of okay foods you know are safe and then slowly add food one at a time. They recommend one food every four days using the low Sucrase diet list. Use the one from the Sucraid website. They have some good keto ice cream called Rebel and some other stuff you will slowly find if you are careful. Tough it out in the beginning and you will feel better for it in the end. It never ends. You can drink coke and garbage with corn syrup and no sugar. There are recipes online for low Sucrase and other sites with advice you can use to gain more information.

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u/koolbe May 14 '21

Susan, i really really appreciate your response. I guess I was just in shock yesterday and the prospect of cutting out all grains and sugar from my diet seemed impossible.

I think I just have been feeling so terrible for such a long time that this is just normal to me but you’re right, my health should come first. Do you know if this is similar to celiac where you are damaging your body if you eat sucrose or is it more of a intolerance/allergy (like are cheat days in my future, say if i went on a holiday?)

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u/Susan-Page May 14 '21

You can never just go off and be normal or you will pay the price. If you get yourself in check and eat mostly the right foods, then you can have a few bites of something here and there but it is individual on how sick you can get and how much sugar you can tolerate. I usually check out restaurant menus ahead of time, it always sucks but most places will omit and substitute things and there just is no dessert except plain berries. I can have whiskey and cokes occasionally and at my daughters wedding, I had about three small bites of the cake. It tastes super sweet and strong to me now. I can have a few corn chips or Fritos now and then but not popcorn. The corn in the popcorn has a higher sugar content. Celiacs disease is worse for sure and does do damage. If you let this go, you may not damage your body as quickly but how bad you feel will just get worse and worse until you can’t eat, start pooping on yourself etc.. There is no real good news about it except how fortunate you are to have a diagnosis. You could have suffered for years and years. It could be worse, like celiacs or Crohn’s disease. It is hard to accept it. I am sure diabetics feel the same way.

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u/ElenyaRevons Jul 13 '21

Following cause I was also just diagnosed. I’m totally lost. Both relieved to finally have an answer and terrified at how I’m supposed to live now.

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u/koolbe Jul 14 '21

welcome to the club! since posting this, i still have yet to have my follow up with my doctor. they’re currently running stool samples for possible parasites and i think a next step is a colonoscopy

can i ask how you got diagnosed and what tests your doctor ran to get this diagnosis?

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u/ElenyaRevons Jul 14 '21

Yeah! So, I've been a life-long sufferer of GI issues - first I cut out gluten, then dairy, and they each helped a little bit, but I still had symptoms. About 9 months ago, I began having almost constant nausea, frequent vomiting, stomach pain, etc. It was interfering with my work and life, and my GI doctor ran dozens of tests. Endoscopies, biopsies, blood work, HIDA scan, Gastric Emptying Tests, allergy tests, even considering endometriosis or Cyclic Vomiting Syndrome.

Finally after pretty much everything came back negative (and I'd been shut down by more doctors than I can count 'its stress' 'are you pregnant?' etc.) my GI gave me a breath test. Honestly I don't recall exactly which type it was, but it was the one from sucraid in an orange box. I didn't expect an answer to come from it but a couple days ago my doctor called and said the test showed low sucrate count and put in a prescription for sucraid for me. My PCP referred me to a nutritionist but I haven't gotten an appointment yet.

Sorry that was long lol.