Daughter feels hungry constantly but eating food makes her feel sick

Posted by gingerdelmarco @gingerdelmarco, Mar 3 8:42pm

My 22 year old daughter has been dealing with undiagnosed stomach/digestive illness for the past 5 years. As she explains it, she feels hungry constantly despite eating regular meals and eating more food just makes her feel more sick. Her Leptin levels are normal. It is becoming debilitating and making it very hard for her to live normally. She cannot eat fruits and vegetables, as that just causes additional stomach pain and gas.

She is working with a Gastroenterologist and has had colonoscopies and endoscopies and everything always comes back normal. She has had gastric emptying tests and stool tests and everything comes back normal. She has had MRI’s and x-rays of her stomach.

She has seen more than 25 doctors over the years including gynecologist, neurologist and endocrinologists. Everything comes back normal (Thank God!) but yet she is still suffering.

What are we missing? Has anyone dealt with anything like this? Any advice or suggestions of where to go from here? Which type of MD or specialist may be able to help? Thank you in advance for your responses. It is greatly appreciated.

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lauracbaker | @lauracbaker | Mar 7 7:33am

In reply to @gingerdelmarco "@gboi THANK YOU for all of this infomation - she has been treated for SIBO but..." + (show)

@gingerdelmarco please be aware that antibiotics will destroy all the good gut flora, as well as the bad guys. A good probiotic may be needed to replenish and that takes a few months.

gingerdelmarco | @gingerdelmarco | Mar 7 9:33am

In reply to @gboi "Hello, I am sorry that you and your daughter are going through this. I wanted to..." + (show)

@gboi

Hello,

I am sorry that you and your daughter are going through this. I wanted to comment because the way you phrased her symptom, "constant hunger", is how I described my symptoms a few years ago (mine were particularly bad at night and would wake me up constantly). It turned out that I had small intestinal bacterial overgrowth (SIBO) as a result of a colon resection surgery. For people without colon surgery, this condition is thought to arise from an episode of severe food sickness that damaged gut nerves (this is a hand-wavy explanation, if you are curious there are more details elsewhere).

When you say she cannot tolerate 'fruits or vegetables without additional stomach pain and gas', this points to SIBO as well - the sugars, starches, and other oligosaccharides in fruits and vegetables can certainly set off bacteria in the small intestines, and can cause diarrhea, constipation, or a mixture of both.

Even if she was breath-tested for SIBO and that was ruled out, these tests are notoriously unreliable. Both false positives and false negatives are common. Treatment for SIBO usually involves several rounds of special antibiotics, but these are also rarely successful the first time and can be unpleasant.

If I were in your position, I would try a diet that avoids the foods most likely to set off SIBO like follows to see if it moves the needle one way or the other. Keep in mind that you may need to keep the diet for 3-4 days for to see the results, if you don't have results after 4 days, it is probably not bacterial overgrowth that is causing the issues. I am also happy to be more explicit in what she could eat, if you are having issues figuring out diet.

Absolutely need to avoid:
All gums - guar, xanthum, carob bean, etc. These compounds are sadly everywhere , so you need to check extra well.
Other starches including potatoes, rice, oatmeal, and even wheat, except for breads, see below etc.
Vegetables
Yogurts or anything else with live bacteria

Okay in small doses (small may depend on the person):
'White' breads that have been yeasted
Fruits or fruit juices, again small doses
Mission flour tortillas, although they have not been yeasted, seem to be well tolerated for whatever reason

Again, happy to trouble-shoot if you are interested in going down this route, but do not want to spend my entire morning yapping into the void if you are not.

Good luck!

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@gboi Can I please ask you to be more explicit on what she can eat while avoiding additives and gums? That would be super helpful! Thank you!!!!

gboi | @gboi | Mar 7 12:30pm

In reply to @gingerdelmarco "@gboi Can I please ask you to be more explicit on what she can eat while..." + (show)

@gingerdelmarco

It certainly isn't easy to avoid most starches and all gums, and it's not a way to go for the rest of her life, but it can be a strong starting point to assess food intolerance, especially for someone that bloats and gets gassy from fruits and vegetables.

To be more clear, what I am describing is essentially a "low fermentation diet" (you can search this on the web to find more information and ideas) to limit foods that bacteria can eat, which usually is what causes bloating sensations. You eat a lot of meat and fat, and limit yourself to small doses of simple carbohydrates.

More specifically:
Meats: beef, chicken, and eggs. If you're tired of cooking, Amylu makes chicken meatballs that are pretty clean (I find them at Costco and Whole Foods). Fish is fine too but a hassle to get fresh and cook unless you like eating tuna out of a can.
Starches: White/simple preferred over "whole grains". So pasta, rice, and potatoes. But all 3 of these can cause issues, especially if they've been heated, cooled down, and then reheated (the starches crystallize and become harder for your own body to digest). So I would recommend sticking to just one variety for 2-4 cycle test. As I said previously, breads that have been yeasted seem to be most tolerable (because the yeast opens up and digests starch clusters).
Vegetables: honestly just skip them while you're running tolerance tests
Fruits: Small servings of apples, citrus, berries, kiwis, grapes or melons can be okay. Also less than a cup of orange or apple juice per meal if it helps one get by.
Dairy: Gotta be lactose free. You can buy lactase pills but be forewarned that these aren't perfect. You can also buy lactase powder from Amazon and sprinkle it in/on and it seems more effective. Hard cheeses (like cheddar) are generally well-tolerated, but softer ones like mozzarella have a lot of lactose.
Other: A high quality but simple chocolate bar, have a serving equivalent per meal to keep morale and calories up. I like the brand Endangered Species from Whole Foods, either the pure milk chocolate or dark chocolate, skip the ones with other things in them for now.

Things to avoid: Again gums are in everything, you'll go mad when you walk through any aisle in the grocery store, pick up something bland and boring, and see the last ingredients all being some sort of gum. You also should avoid onion and garlic powder, these also sadly are primarily digested by bacteria and cause issues.

Good luck, I know it's a hassle but hopefully it's just a starting point.

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