New here! Anyone else with....

[johnsonmich990]

Hi everyone! Just wondering if anyone else suffers from gluco-amylase intolerance and wishes to share their story and how they manage it? I've been diagnosed about 3 years now and there is NO literature. Even my specialists are short for information.  Any help, stories, tips , and resources would be very appreciated. I've never met anyone else with similar intolerance.

[CMdeux]

Curious how you were diagnosed-- do you mean that you have a glucoamylase (MGAM) enzyme deficiency?  Or that you are intolerant TO the enzyme (and if so, do you know from which sources)?

I know that there is some thought that such a deficiency can lead to IBS symptoms, and that some percentage of people with IBS probably have such an enzyme deficiency which hasn't been diagnosed as such.  Given that the controls are dietary either way and the result of trial and error to find a tolerated diet, though, I'm not sure that there is a ton of pressure to diagnose people with unspecified IBS.

Not clear (in looking, and you're right, there's very little literature on it) that there are well-defined health sequelae as with celiac, but it probably wouldn't be a huge surprise to find out that there are, either.  Damage to the colon is probably a universal kind of trigger for bad things down the road either way, right?



More info on MGAM in particular:

http://www.nextprot.org/db/entry/NX_O43451



One thing that you may find helpful as you investigate here is that the community as a whole is focused on IgE-mediated immediate-type food hypersensitivity; that is, "food allergy" in particular, and that may have some significance on the quality and nature of others' responses to your inquiries or posts.  For us, avoidance must (in general) be very very thorough, and the result of an error in judgment is often catastrophic, resulting in a trip to the local emergency room and the administration of a raft of prescription medications intended to keep us alive until we recover.  The amounts needed are variable and individual, but can be very very low-- microgram amounts.  Such things tend (for those of us with IgE-mediated food allergy) to be immediate onset (within an hour or two) and last generally only a few hours, but in rarer instances a few days. 

So while we might be very able in terms of helping you find tricks to living "differently" from your friends and family where food is concerned, it's something to bear in mind about 'avoidance' and 'failures of avoidance' questions.  We also tend to think about proteins as allergens, and not starches. 



A warm welcome to you!  I hope that you are able to find useful tips and information here. 

[CMdeux]

I'm going to tuck some additional stuff in here for you--

http://www.ifr.ac.uk/SPM/glucoamylase.html

http://www.uscnk.com/directory/Maltase%28MAL%29-0253.htm

http://www.reeis.usda.gov/web/crisprojectpages/0402948-nutrient--gene-interactions.html
(the above CRIS entry includes a portion which looked at murine model MGAM knockouts-- that is, mice with this enzyme deficiency-- in order to examine starch digestion in them-- the way to find out more about that is to do a PubMed search using the authors names)

http://onlinelibrary.wiley.com/doi/10.1002/%28SICI%291097-0134%28199711%2929:3%3C334::AID-PROT7%3E3.0.CO;2-A/abstract

http://www.genecards.org/cgi-bin/carddisp.pl?gene=MGAM

If nothing else, knowledge is power, right?  Alternative naming systems for proteins/enzymes might mean that you or your specialists have overlooked something published under an older/archaic name.

(Yes, I'm a scientist by training, so I've accepted that sometimes this sort of name-game mix-up happens.  It's aggravating to have to use four different search terms, but it happens in some fields-- notably in molecular biology and botany.  {sigh}  But also in pharmacology, where drugs may have four different names, depending upon which naming conventions one is following.)


If, on the other hand, you are attempting to AVOID external sources of the enzyme itself--
understanding food processing that utilizes the enzyme is the important thing:

http://www.waytodeal.com/detail/product/10442/buy/Supply-Enzyme-Glucoamylase

(weird source, I know, but take a look at the fine print.)


Do you have access to a university library nearby?  If so, you might call and find out if you, as a member of the public, can have limited privileges in order to come in and do database queries and that way, you can probably get at research articles behind paywalls.