# "Rare" Sugar Intolerance May Not be so Uncommon



## KLH (Dec 28, 2015)

My story begins about 10 years ago, when I noticed that I had frequent diarrhea. I was in my early twenties at that time, and I attributed it to alcohol, which although I rarely drank in excess, I drank frequently, bartending through college. A couple of years later, I noticed that my problems were not actually caused from alcohol, but it certainly could exacerbate them. I began experimenting with eliminating things from my semi-vegetarian diet. Nothing helped. I found my symptoms were episodic, with terrible diarrhea one day, and then many days of perfectly healthy bowel movements. I felt there must be something causing it, but since it was not problematic on a daily basis, I ignored it for several more years. It nagged at me, whenever I had a bad day, I would think and think about what it could be that caused my alleged IBS to flair. I rarely complained to anyone, but finally one day I vowed to do another attempt at an elimination diet, this time taking it more seriously. I began with the obvious ones, lactose, wheat, alcohol, and caffeine. I did them for 2-3 weeks at a time, never noticing any improvement. Sometimes I would make it a week with no problem, begin to get hopeful, only to be disappointed when my diarrhea came roaring back. I tried less common triggers like peppers, carbonated beverages, raw vegetables, rice, and shellfish. I could not find a cause for my intermittent, severe diarrhea. When I read about other people's symptoms of IBS, mine did not sound like theirs. I ate healthy, exercised, and felt good most of the time. I wasn't under any particular stress, and simply could not connect my problem to a source. I felt sure that there was something that I was eating that my body could not digest, but I couldn't determine what it was. Defeated after many months of elimination experiments, I gave up trying to figure it out yet again.

The following year, in a new job, with a fast paced professional healthcare environment, I went to see a GI doctor, frustrated with my rushing to the bathroom on bad days. I told him my symptoms, all of the eliminations that I had tried, and how convinced I was that it was not IBS, but some sort of reaction to a food that I could not identify. He told me to keep a food journal. I left, frustrated knowing that I wasn't likely to do a very good job of this. I can't remember to write everything I eat and all of my bowel movements down!

That's when I found an app called MySymptoms. This clever little app changed my life, because after about 3 weeks of vigilantly tracking my every meal, snack, poo and medicine, this damn thing told me what I couldn't figure out for myself. The cause of my problems was mushrooms.

Now, let me just briefly elaborate on the irony of this discovery. I am a mushroom lover, not just your store-bought throw it on a pizza or salad type either. I have loved wild mushrooms since I was a teenager. I have hunted them with family and friends over the years, and devised culinary masterpieces using various species of gourmet fungi. I was flabbergasted at the possibility that one of my favorite foods could be the source of my problem. I smacked myself in the head for not eliminating them on a whim years earlier. I didn't dare tell anyone at first, wanting to make sure that it was, in fact, the mushrooms before telling my family the ridiculous source of my problems.

After about 3 weeks of almost no symptoms, I was convinced that it certainly was mushrooms. I began googling. What I found was fairly interesting, but scarce. The source of my problems was a sugar called trehalose. I had an autosomal recessive genetic mutation that made my stomach lack the enzyme trehalase, needed to digest the sugar. This is when it hit me that my aunt always said she couldn't eat mushrooms. She was adamant, and I recalled having several arguments with her over the years about how even if she had trouble with the store-bought species, that didn't necessarily mean she couldn't try my truffle-mashed potatoes! They weren't even in the same phylum! I called her immediately, quizzing her of symptoms, baffled that it had taken me so long to put it together.

There is very little literature on trehalase deficiency, and it is dated. I was googling everything I could come up with, and learning some chemistry in the process of reading as much as I could about my condition. I learned that trehalose is naturally occurring in several foods other than mushrooms, such as shrimp, lobster, and honey. The sugar is actually quite interesting; it acts as a preservative, helping to prevent things from drying out. This is why there are companies that now sell it by itself, allowing for it to be added to some food products, such as pastries, to keep them fresh for longer. You can go buy a big tub of it right now on Amazon. This is why every so often I would get a dose of it from a food that didn't quite make sense, like Costco croissants.

I felt so much relief, just from knowing. I was overjoyed at the discovery, despite the implications for eliminating one of my favorite foods. I experimented with shrimp and lobster, but since most of the sugar is found in their exoskeletons, I didn't notice many problems, other than the tiny shrimp used in some Asian dishes. My relief far outweighed missing mushrooms.

I took a small stack of literature back to my GI doctor to tell him what I had found. He was confused, totally clueless that there was such a thing as trehalose intolerance. He seemed intrigued, and asked if he could keep the literature that I brought. I was a little disappointed that he didn't know what the hell I was talking about, but like many medical specialties, I suppose everyone has their niche, and may not know a lot outside of that.

That was about a year ago, and I thought that it was the end of the story for me. I was having very few problems, and I could always identify where my dose of trehalose had come from if I did have a problem. I felt confident that I had a grasp of what to avoid, and I was very satisfied with my digestive system.

That was until a few months ago, when I noticed that twice in one week I could not figure out what triggered my reaction. I certainly had no mushrooms, but I also hadn't had anything new or different from the cafeteria where I've eaten lunch for the last 4 years. I narrowed it to the salad bar, but it took me several episodes to decide that it was the cherry tomatoes. WTF. I'd never had a problem with them before, and there was no evidence that trehalose is found in tomatoes. Back to Google. It didn't take me more than about 5 minutes to discover that many companies now bioengineer tomatoes using trehalose to keep them fresh for longer. I couldn't believe what I was reading. Genetically modified tomatoes (and rice apparently too!) with this special protective sugar crossed into their genetics were causing my severe debilitating diarrhea to reappear with a vengeance. At first I was angry. Then I thought about it a little longer, and I realized that its actually brilliant that science has brought us to the point where we can grow food in environments where it would not grow otherwise with a simple tweak of the genetics. I'm not angry about biotechnology. I'm not even really against genetically modified foods. Outside of the scenarios which genetic modification is done for greed, not good, I'm all for it. Lets eliminate starvation. Lets reduce food waste. Lets bring fresh produce to all corners of the world. My concern is that there are unknown consequences to gene modification. There are no current or accurate studies of how prevalent trehalose intolerance is in America. Without good data on this sugar being digestible, should we really be tossing it around like its harmless? Clearly, it is harmful to some people. That incidence is a total mystery, and until someone has done a proper analysis of this sugar's digestibility, I think it would be prudent to keep it out of my salad.


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## jaumeb (Sep 1, 2014)

Interesting story. I use that mysymptoms app. I've done aggressive elimination diets in which I start with a single food and then add a new food every five days. But I am in pain even if I fast, so probably it is a bit more complicated for me.

And I am against gmo for many reasons. Specially after reading the book "seeds of destruction".


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## Moises (May 20, 2000)

Great post!


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## TroubledWaters (Feb 10, 2018)

Interesting to read someone else's experience of experiencing and self-diagnosing this unusual problem. I discovered that I couldn't tolerate mushroom soup or anything containing concentrated mushroom powder, after three unpleasant reactions to mushroom soup and also a packet of noodles - the flavouring powder contained mushroom powder as I later discovered. The first time I had fresh home-cooked mushroom soup I spent an uncomfortable half hour in the loo with stomach cramps and a feeling of bloating. The second time I had fresh mushroom soup, from a supermarket, I spent the following night and morning with stomach cramps, nausea and diarrhoea. The third time was a similar reaction to tinned mushroom soup, which put me out of action for the next 12 hours.

Apparently the boiling of mushrooms releases the mushroom sugar for which my body lacks the processing enzyme, hence all the unpleasant reactions. I'm fine with raw or fried mushrooms, but am now careful to avoid risottos and other recipes which might contain boiled mushrooms. My solution to the problem is one of avoiding the cause. Although I like the taste of mushroom soup, I can easily live without it. I haven't bothered mentioning it to my GP, but am a little concerned to see that trehalose may be used in some sweeteners and preservatives.


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## Lolinda (Aug 1, 2018)

KLH said:


> My story begins about 10 years ago, when I noticed that I had frequent diarrhea


Thank you KLH for all these details. Are you still on this forum? I hope so so much that I can reach you! You mention a stack of literature you found on trehalase deficiency. I would like to ask you if you found any source of information on trehalose contents in food? (I ask because I read that there is trehalose even in non-GMO flour, rice and in yeast, but I do not find quantities. I react badly to so many things. My trehalose-issue may be bigger, because my trehalase is fully dysfunctional, see below)

I found one detail in your story surprising: you write that you had diarrhea in your twenties but that "I have loved wild mushrooms since I was a teenager". So is it that mushrooms did not cause diarrhea in your teens?

Big thank you!
Linda
PS: My story is similar to yours in so many regards. I found it impossible to relate diarrheas to the trigger, too. Imagine, I even needed a full genome sequencing for 1300$ and went through countless genes myself (forget about doctors...) till I found that I have a frameshift mutation in the TREH gene. (frameshift means that instead of trehalase, my gene will produce complete rubbish, a dysfunctional protein). Then after I found it, doctors were able to comment that yes, indeed...


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