# New to forum / disaccharide intolerance



## hrutger (Oct 21, 2013)

Hi everyone,

As someone with digestive health issues that are life-disrupting but difficult to discuss, I'm longing for the day they really invent the Point of View Gun from the film version of "Hitchhiker's Guide to the Galaxy" - the thing you can fire at someone to make them understand what it's like to be in your shoes.

Until then, it's nice to have a forum where we are not alone.

I'm completely new to this forum. I'm 28 and I've had digestive health issues for over 10 years. Below is my summary. Please let me know if you have any questions or thoughts.

Also, I'd certainly be interested in finding penpals or finding meetups in Southwest Florida.

And just a quick note before my summary: One thing that has helped immensely with the stress and anxiety surrounding this condition is mindfulness meditation. This secular meditation practice helps me stay calmer and avoid agonizing over symptoms, and it allows me to feel alive between bouts of difficult symptoms, rather than simply worrying about what'll hit me next. I cannot recommend it more highly to a group like this. I started to learn meditation practice from the book "Mindfulness: Finding Peace in a Frantic World" by Mark Williams and Danny Penman. I encourage others to try it out (it makes EVERYTHING more bearable - GI issues included).

Hayley

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Symptoms / treatment summary:

I have had digestive issues - including: diarrhea and loose stools, with abdominal pain, sometimes back and forth between diarrhea and constipation, along with gas, bloating and sometimes major fatigue - since just before turning 18. At first they were intermittent, and then they became more constant when I was around age 19/20.

During college, there was a break in the symptoms during freshman year when I felt a lot better, had relatively regular bowel movements, etc. Around the end of freshman year, in 2004, the symptoms returned. I read about certain carbohyrdates causing a problem in bacterial overgrowth - the book I read focused on complex carbs - and so I tried removing those. But simpler carbs, not starches, seemed to be emerging as the real problem.

It took a lot of trial and error -- including restricting my diet to mostly protein and very low-sugar veggies for awhile -- to figure this out. A colonoscopy in late 2007 or early 2008 did not show inflammation of the colon, and it was suspected then that I had IBS. At the time the doctor didn't give me any really specific instructions (I think just a standard info sheet suggesting certain foods and more fiber. It was unhelpful). Then I moved for school / internships and didn't continue with that doctor.

Through trial and error, I have found which foods seem to make the symptoms better or worse - in short, the fewer disaccharides and monosaccharides I eat, the better I seem to feel. There's much more to it than that, but here are some of the key things that I survive on: complex carbs like rice, potatoes, oatmeal and quinoa pasta (not wheat); protein from meat and egg whites (not yolks, not tofu, not much beef at once); green veggies like spinach and celery (but not things related to broccoli and cabbage); carrots and several other things high in vitamin A, including pumpkin and sweet potatoes; lactose-free Swiss cheese (lactose is DEFINITELY a problem). Pure Stevia from KAL brand is my sweetener of choice.
This is only a snapshot of some key things that generally don't hurt me.

One supplement that seems to make a great difference for the better is calcium carbonate - I normally take that twice daily. It seems to slow the passage of food.

Doing that, and following the trial-and-error diet I've created, I often only pass stool once a day, but it's still often abnormal in quality - too hard or too soft.

Often after meals I experience lethargy. After I've eaten something problematic, a common pattern is extreme lethargy and a feeling of tightness around the solar plexus, and/or tightness or fullness felt elsewhere in the belly or back, along with lessened appetite. Often I notice that my mouth feels drier. Then there tends to be strong but vague abdominal discomfort , and there may be constipation for a time. I feel what I'm pretty sure is bloating - the best word I can think of is "pressure" - and also there's a sense that normal digestive motion is stuck - and it feels...perhaps not numb, but at least dull, as if I can't sense what's going on to the usual degree. Then typically later, after suffering this state for awhile, my gut starts to feel more relaxed (in fact my entire body seems to relax) and I'm able to pass stool - and it is often partially or fully diarrhea in these cases (or it may be harder stool, often with mucus, followed by the former). And around this time I'm also able to release gas from the stomach and/or intestines. These occurrences tend to alleviate the symptoms a great deal, and I regain some energy and mental clarity. Often though, I am left with pain and less normal digestive symptoms for a day or more after, it sort of feels as if there's some damage left in the wake of these symptoms.

In addition to foods causing problems, stress and/or excitement is definitely a factor. One thing that can happen, during stress or certain kinds of strong excitement, is a feeling of discomfort or tightness/fullness in the gut, in that solar plexus area or elsewhere, with loss of appetite. And I tend to breathe more shallowly during stress - I wonder if that contributes to or aggravates the problem. This stress can cause a pattern of digestion feeling "stuck" and then seeming to resume unpleasantly. Anything that substantially derails my daily routine, especially in the evenings, can cause my symptoms to flare - often constipation followed by diarrhea. Traveling is a big stressor for my gut. So is prolonged socializing - feeling like I can't get a break from other people.

One of the latest updates is: I started working with a gastroenterologist again this year. He performed an upper GI endoscopy and records said my anatomy looked normal but there was gastroparesis - not enough stomach movement. He prescribed Domperidone, a Canadian drug, which has helped with the gastroparesis and reduced some of the upper GI feelings of bloating, nausea and fullness. At some point I asked the GI doctor if my issues could relate to intestinal flora. He didn't seem to think that was causing the problem for me. I must admit, I'm unconvinced. In the end, given what I had said to him about foods triggering issues, he diagnosed "disaccharide intolerance" and said I could try investigating disaccharidase deficiency. Even if this was diagnosed, he didn't seem to think it would help me find a treatment. I have not followed up on this.

Regarding intestinal flora: Before going to the above doctor, I had tried a couple of probiotics for...I think...periods longer than a month. If I remember right, some of the included flora were L. acidophilus, B. infantis, L. plantarum, and other members of the genera Lactobacillus and Bifidobacterium.) No probiotic made a substantial difference, and I discontinued them in part because of cost. One seemed to help slightly for awhile, but it was unclear whether the probiotic was actually helping, or I was eating tolerable foods at the time, or was just experiencing a bit of placebo effect. In any case, none of them seemed like they would resolve my issues.


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## rmiller1985 (Sep 13, 2011)

Hi hrutger,

Having a problem with disaccharides but not more complex carbohydrates sounds strange to me.

I've been on the Specific Carbohydrate Diet for four and a half months, and it has greatly reduced my IBS-D symptoms. I believe I had SIBO, and switching to a diet with zero complex carbs starved the bad/misplaced bacteria. If oatmeal doesn't seem to be a problem, I'm not sure that our situations are similar, but you might check out, "Breaking The Vicious Cycle" by Elaine Gottschall anyway: there might be something in her descriptions of proper gut function and compromised gut function that rings a bell with you.

Cheers,

Rich


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## hrutger (Oct 21, 2013)

Hi there!

Thanks for you comment. "Breaking the Vicious Cycle" was actually the first book I tried to follow (I should've mentioned it by name above). Many of the foods it suggested did NOT work for me, unfortunately. For instance, honey is terrible for me, as are many of the other foods rich in monosaccharides.

However, clearly I can eat SOME simpler sugars, as I can have things like carrots, pumpkin and strawberries, which do have some simple sugars. It's still a mystery to me.


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