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Support for Carbohydrate Malabsorption (Dissacharidase Deficiency)

Hi there,

I am a 31 year old female recently diagnosed with Dissacharidase Deficiency, otherwise known as carbohydrate malabsorption.  According to my gastro, a bad viral infection I acquired almost 18 months ago knocked out only my lactase enzymes, but also the enzymes neccessary to break down sugars, most carbs and all starches.  I also became seriously sensitive to fructose, the sugar found in fruit.  Symptoms include extreme reactions to eating carbohydrates (except certain veggies and particular legumes) such as nausea, diarrhea (especially the kind that smells like sugar - if you have it you know what I am talking about), undigested food, ever changing appearance of bowel movements, acne within about 8 hours of consumption (must hit a critical mass) and rashes in response to simple sugars.

I've had a number of very serious health ramifications as a result of this condition, most of which were caused by severe nutritional/vitamin deficiencies.  I tell you, this stuff can get really scary if you let it progress.  

To make matters worse, I am a vegetarian and have been for 20 years.  Currently, my diet is restricted to eggs, certain nuts, avacado, most vegetables and some legumes.  I can't have any dairy, fruit, grains or starches.  Basically, I can't eat much and it's very frustrating and becoming a bit isolating.  I love going out to eat.  I was a huge 'foodie' before this all started....girl with an iron stomach if you will!  

I am coping and doing my best, but I was wondering if anyone knows of support groups for adults with either CSID or carbohydrate malabsorption.  I can find groups for parents with kids who have these disorders, but nothing for adults.  Just want share stories, make some friends who understand and perhaps swap some recipes.

Also looking for a good nutritionist/dietitian referral in the southern california area if any one can pass along a recommendation.  I really, really need someone to work with to create balanced diet and menu plans.

Thanks!
4 Responses
Avatar universal
Can you eat seeds?  That would allow you to eat wild rice and buckwheat, for two.  They are seeds, in the fruit family, not grains, and are quite low in sugars.  And what about fish?  The essential fatty acids in wild caught fish would probably help.  As for nutritional help in California, that's the center of nutritional help.  Probably a million of them.  Every actor and actress there has a nutritionist, and it's the center of holistic medicine in the US.  Sounds tough.  Good luck with this.  I assume you're using oral digestive enzymes.  By the way, you probably didn't have any lactase anyway; only a few ethnicities have it.  Some Scandanavians, some in India, and that's about it.  
Avatar universal
Thanks for the info about wild rice and buckwheat.  I had no idea they were considered seeds.

Haven't touched any form of meet in 20 years, but, yes, I am considering adding in fish because it is so nutritious.  

Also a yes on the enzymes - i take about 8 - 10 a day.  have to take them even when i don't eat.  expensive, but worth it.

thanks for your response, appreciate it!
Avatar universal
how did you get this malabsorbtion? any antibiotics or other meds before it precipitated? you say a viral infection according to your doc...but do you remember this viral infection? did you get diahreah?

for treatment you could try probiotics-prebiotics such as:
KIEFER!!! and SAUERKRAUT!!! they will provide the flora you are probably lacking who will provide the ezymes you need to break down food

you also may have low stomach acid. stomach acid is essential for most absorbtion.

try stimulating your tongue with bitter herbs before eating
or try betaine hcl
and digestive enzymes

the straightforeward medical community doesnt know how to treat this and doesnt want to.

i had limited carb digestion for a while and now i can digest everything. i also had candida and dysbiosis as the alt medicine community refers to it.

search ************

to health
good luck

~ruff
Avatar universal
Hey (:
No, I'm 14 and have just been diagnosed with the same thing. There's nothing that brings it on, it's just something to do with our bodies.
I was on an anti-biotic not long ago, but my symptoms have lated longer than that, and I haven't been on any previous anti-biotics.

I was wondering if maybe anyone had any recipes? I'm still a kid and because I've just been diagnosed, I've been eating a lot of plain rice and I'm getting very, very sick of it.
Appreciated (:
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