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Sucrase-isomaltase deficiency, intestinal enzyme deficiency, bowel resection, bowel ulcers, limited necrosis of bowels, NSAID damage, unconsciousness, weakness, hypoglycemia. Serious?

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I have sucrase-isomaltase deficiency. This is an intestinal enzyme deficiency that means I have extreme difficulty breaking down sucrose and starch. My problem is part genetic and part acquired. My father has a moderate to mild version of the condition. I had a bowel resection 3 years ago. I had 20cm of gut removed. Specifically the end of my ileum, my ileo-cecal valve and the beginning of my colon. This was emergency surgery. I had bowel ulcers and limited necrosis of the bowel. The ulcers and necrosis seem to have been the result of NSAID damage. There was no underlying pathology found (beyond the sucrase-isomaltase deficiency) despite extensive investigation. This operation has made my previously undiagnosed sucrase-isomaltase much more severe. I have been on a starch free and sucrose free diet for 8 months. This has really helped me. However ever since my operation I have had very bad blood sugar swing symptoms. After eating I often pass out and wake up completely starving. I eat and eat but the extreme hunger last for hours. This has improved somewhat with the new diet. It was much worse when I was eating a normal diet. But it is still causing me problems. I have to eat little and very often otherwise I pass out or get very weak. I cannot have any sugary food (like fruit or soup) in the mornings or early afternoon. I also experience this problem with exercise and even moderate exertion. I know intestinal enzyme deficiencies are associated with reactive hypoglycaemia. I believe this could be what I am experiencing. However, the advice given for reactive hypoglycaemia is to eat more complex carbs and I can’t do that. Is there anythingelse I could do? I have been looking for information on how to treat reactive hypoglycaemia associated with an intestinal enzyme deficiency. I bought a blood sugar monitor. I have tested my BSL at the times I feel ill and it has always been very normal. Does this sound like reactive hypoglycemia? What tests should I request? I used to also have irritability and feelings of shakiness and warmth. However thoes have resolved since I have been on the new diet. I am female 24 and 58kg.
Posted Sat, 28 Apr 2012 in Digestion and Bowels
Answered by Dr. Rakhi Tayal 7 hours later

Thanks for writing to us.

For reactive hypoglycaemia, taking complex carbohydrates at short intervals will help you best. Doing small exercise will also help in upregulation of glucose receptors.
For emergency situations when you feel too weak you can take a cup of fat free milk.
Blood glucagon levels need to be checked as this hormone is mainly responsible uniform glucose utilisation in the body.
If on repeated testing of blood glucose specially during these episodes of weakness, you get normal blood glucose levels then you can take plenty of fluids and milk to ward off this feeling.

I hope my answer and recommendations are adequate and helpful. Waiting for your further follow ups.

Above answer was peer-reviewed by
Follow-up: Sucrase-isomaltase deficiency, intestinal enzyme deficiency, bowel resection, bowel ulcers, limited necrosis of bowels, NSAID damage, unconsciousness, weakness, hypoglycemia. Serious? 2 days later
Thank you that is very helpful. Would a glucose tolerance test (the kind given for type 2 diebetese) be at all useful? I experience problems following physical exertion and if I don't eat for too long as well as after a carbohydrate XXXXXXX meal. So I am not entirely sure if it is truely reactive hypoglycemia or another type of hypoglycemia. With this in mind are there any other tests you would recommend?
Answered by Dr. Rakhi Tayal 4 hours later

Thanks for writing again.

Glucose tolerance test is only used for the diagnosis of Diabetes and not for the treatment. This test might help you in detecting diabetes.
Apart from this random glucose levels monitoring during the symptoms will help in diagnosing your problem.

Sincerely hope it will help.

Wishing you an early recovery

Above answer was peer-reviewed by
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