Sara in AZ Posted September 2, 2016 Share Posted September 2, 2016 I just got a call from the GI office that DS 11's recent endoscopy/colonoscopy turned up a deficiency in the enzyme sucrase that digests sucrose. We were looking for celiac because DD7 was recently diagnosed and his bloodwork showed a weak positive for the antibodies (20.45, just over the limit of 20). Anyway, the biopsy turned up negative for celiac, but his continued symptoms of stomach pain and diarhea seem likely to be explained by this sucrase insufficiency. The gal on the phone didn't give much information, so i've been googling around to get info about a low starch diet. It seems pretty intense. We are seeing a nutritionist next week (unrelated...referred by the ped because of his weight and cholesterol issues) so I will ask for more info then. In the meantime, I have a DD with type 1 diabetes, the celiac, and now this. I'm thinking I should just give up on carbs all together and force everyone to go paleo! Anyone ever dealt with sucrase insufficiency? I had never heard of it before now. Quote Link to comment Share on other sites More sharing options...
Supertechmom Posted September 2, 2016 Share Posted September 2, 2016 I haven't dealt with that one but it is produced in the tips of the villi of the small intestine. My daughter was negative for Celiac solely because she did not have enough villi destroyed for the GI to call it Celiac. However, his advice was to continue gluten and biopsies until she tested positive for Celiac as the villi destruction would continue and eventually be Celiac. So the ped and I said that was strong enough to remove wheat and stay away from gluten. After all, we had a child that needed to grow . So, if he has enough damage to his villi to have a deficiency of sucrase, that would be consdiered stage 1 or 2. My daughter was at stage 2 due to lack of milk enzyme. I would not rule out Celiac but just consider him to be on a pathway to it, especially if his sister has it and he has antibodies for it. 20 is pretty freaking high. I pretty sure that is the old levels. That was 10 years ago and a year after we did our testing, new lab level suggestions were posted reducing that number to 10 if I recall correctly. Newer research suggest any antibodies is a positive now. The enzyme deficiency will correct itself once gluten is removed and the villi grow back. More info on the Marsh Scale https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/diagnosis/ 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted September 2, 2016 Share Posted September 2, 2016 And there are other conditions that damage the intestines that aren't celiac (ask me how I know :o ). I definitely have to limit allergens and foods that give me inflammation, including anything sugary, or I pay for it with horrible digestive symptoms and pain. I am not familiar with that particular enzyme deficiency but I am sorry your kiddo is dealing with this and I hope you can find a good balance for the complex nutritional needs of your family :grouphug: Quote Link to comment Share on other sites More sharing options...
Sara in AZ Posted September 3, 2016 Author Share Posted September 3, 2016 I haven't dealt with that one but it is produced in the tips of the villi of the small intestine. My daughter was negative for Celiac solely because she did not have enough villi destroyed for the GI to call it Celiac. However, his advice was to continue gluten and biopsies until she tested positive for Celiac as the villi destruction would continue and eventually be Celiac. So the ped and I said that was strong enough to remove wheat and stay away from gluten. After all, we had a child that needed to grow . So, if he has enough damage to his villi to have a deficiency of sucrase, that would be consdiered stage 1 or 2. My daughter was at stage 2 due to lack of milk enzyme. I would not rule out Celiac but just consider him to be on a pathway to it, especially if his sister has it and he has antibodies for it. 20 is pretty freaking high. I pretty sure that is the old levels. That was 10 years ago and a year after we did our testing, new lab level suggestions were posted reducing that number to 10 if I recall correctly. Newer research suggest any antibodies is a positive now. The enzyme deficiency will correct itself once gluten is removed and the villi grow back. More info on the Marsh Scale https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/diagnosis/ Thank you so much for this insight! I told him he should probably just go gluten free anyway and see if it helped. Sounds like that's a good route to take. I hope you're daughter is feeling better and growing now! Quote Link to comment Share on other sites More sharing options...
Sara in AZ Posted September 3, 2016 Author Share Posted September 3, 2016 And there are other conditions that damage the intestines that aren't celiac (ask me how I know :o ). I definitely have to limit allergens and foods that give me inflammation, including anything sugary, or I pay for it with horrible digestive symptoms and pain. I am not familiar with that particular enzyme deficiency but I am sorry your kiddo is dealing with this and I hope you can find a good balance for the complex nutritional needs of your family :grouphug: Thank you for your sympathy. 😊 The board is always good for that! 1 Quote Link to comment Share on other sites More sharing options...
IfIOnly Posted September 3, 2016 Share Posted September 3, 2016 Look into The Standard Carbohydrate Diet/Breaking the Vicious Cycle. It's about healing the intestinal vili and therefore enzyme production. It's not low carb but rather monoscaccaride vs disaccaride and polysaccaride foods and eating easily digested starches. It's not a permanent lifelong thing but rather a healing diet. 1 Quote Link to comment Share on other sites More sharing options...
IfIOnly Posted September 3, 2016 Share Posted September 3, 2016 (edited) Also, consider testing the large intestines via stool test and small intesting via breath test for SIBO. So many things can get the GI delicate checks and balances ecosystem out of symbiosis: antibiotics, SAD and sugary processed foods, stress, nutritional deficiencies --hello pregnancy and breastfeeding--, heavy metal poisoning, and more. BtVC/SCD has info. about this because Dysbiosis most def. affects the villi too. Eta: You don't have to pick up a "bad" germ somewhere. Your intestines are full of them. :) But they are kept in check by other/"good" bacteria in the GI and can overrun under the wrong conditions. You are also more susceptible to picking up microbes though because th. Gi defences (stomach acid, bacteria, strong immune system) are lacking. Edited September 3, 2016 by ifIonlyhadabrain 1 Quote Link to comment Share on other sites More sharing options...
IfIOnly Posted September 3, 2016 Share Posted September 3, 2016 Sorry! Forgot that a major culprit for dysbiosis is also our lack of probiotic and fermented foods. Huge problem. We need those to keep our bodies health. Refrigeration and freezing and canning have pretty much nixed older food storage methods. Probiotic foods are also covered in BtVC. In fact, 24 hour yogurt (fermented 24 hours, tart, and rich in probiotics) is a staple of the diet. 1 Quote Link to comment Share on other sites More sharing options...
Sara in AZ Posted September 3, 2016 Author Share Posted September 3, 2016 Thank you ifionlyhadabrain. That is good information!. I will definitely look into your recommendations! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.