I want to free my brother from his stomach issues.
July 13, 2009 7:55 AM   Subscribe

What could be wrong with my brother's stomach?

I come from a rather "robust" family, the kind of family where my size 10 makes me the skinny one and when I got to an 8 they thought I was sick, yet my youngest brother has always been very thin and a picky eater.

For the past year, he has had a severe digestive issue and has dropped an alarming amount of weight, its almost like his peristalic wave is severely retarded. I am going to give you a lot of back story in case somehow, somewhere, you can see a connection.

He started taking vitamins regularly at a very young age and has never seemed malnourished, however, he had the hardest time catching up in size and weight to his peers, he was a tiny, tiny child, until perhaps middle. He is currently 5'7 and normally weighs around 135 or so, so smallish, but in the realm of normal (I am 5'8 and my father is 5'9) We are also all academic, all of us (me and 3 brothers) were all star students, scholarshiped to death etc. My other brothers and I were diagnosed with ADD as young adults(19-21). He and I suffer from Asthma. I am allergic to shellfish, iodine, and wheat. He doesn't have food allergies that I know of, but he hasn't had the battery of tests I have.

I am going to give you a lot of back story in case somehow, somewhere, you can see a connection. I used to babysit an autistic child who also had horrible digestive problems, so there might be a connection. My brother had early signs of some manner of Autism (he is currently 27), the high pitched squeel, non verbalness etc. After lots of speech therapy, handwriting therapy etc. He is an awesome young man, not the most communicative, but awesome.

He received a double degree in French Horn perfomance/composition and physics, he understands the world in waves and is really a wander to behold, I had to learn about harmonics to talk to him more often. He ended up moving back home when he graduated to find a job. He ended up as a special needs teacher, one of his students said "I love Mr. Tim because he's just like me". He also started taking classes at night to get a teaching masters. He would drive almost two hours after school got out to get to his college. He understandably was a little stressed.

He doesn't show stress. He will nap as much as he can, etc. so when he started having stomach issues, everyone including the doctors thought it was stress. However, he finished his masters up, he transferred to a low stress small school and its still happening.

The biggest symptom that affects his life is that if he eats anything after 4 and then lays down around 10, it all just comes back up. Its not like he's throwing up exactly, its just rises back up into his mouth. The food that he does keep down takes a very, very long time to come out and he ends up painfully constipated. They tried laxatives, but that provoked some kind of crazy reaction that put him in the hospital (I am not clear on this, he doesn't exactly want to elaborate on his poo problems to his sister). He has done all kinds of research on his own, trying all manner of probiotics, supplements, etc. He has had scopes going up and scopes going down, contrasts etc. The doctors still almost blow him off, give him some antiacids and tell him to take it easy. It blows my mind. He is 27, 112lbs, and is now losing hair. He lives on yougurt, ensure, and vitamins. He is living a life dicated by when and how he can manage to get enough nutrition in him.

He's in the Chattnooga area, I am in the Atlanta area, I have want him to come live with me and see if any Atlanta specialist might have better luck. So wow, sorry, that was long and crazy. I am worried about him, worried about heart problems and quality of life. Hive mind, what can we try, what should he eat, who should we see?
posted by stormygrey to Health & Fitness (18 answers total)
See a Gastroenterologist.
posted by JayRwv at 8:18 AM on July 13, 2009

He did, they did the scopes up and down, contrast stuff.
posted by stormygrey at 8:21 AM on July 13, 2009

If his gastroenterologist hasn't gotten him several tests (a good one will do a biopsy AND the antibody test) for celiac, you need to find a new gastro. I can't imagine he wouldn't have been seriously tested since you can't eat wheat....but so many doctors are unwilling to look for food allergies.

Some specialize in rare manifestations of celiac like eosinophilic esophagitis, which it sounds like he might have. It took me several years to find a gastroenterologist who was willing to think outside the box and look at many factors instead of shoving more antiacids in my face. I also did lots of my own research. There are lots of people out there suffering from frustrating stomach issues.

I had some similar issues and ended up going the alternative medicine route when I had exhausted mainstream tests. A test showed I had low stomach acid, which was surprising, since most of my symptoms seemed like too much acid. I took betaine HCL for a long time, cut out wheat and dairy, upped omega-3 consumption, and started a paleo diet. Probiotics never made a big difference for me. I now have a normal digestive system. But I feel that such digestive problems can be very individual....there is still so much we don't understand about the "second brain."
posted by melissam at 8:30 AM on July 13, 2009 [2 favorites]

He might also want to look for an allergist rather than a gastroenterologist.
posted by melissam at 8:32 AM on July 13, 2009

He definitely should see a gastroenterologist, either a new one or the old one. It is essential that he call attention to the weight loss at the beginning of the visit. This should raise a red flag for the doctor. He shouldn't be afraid to say to the doctor: "I'm having involuntary weight loss. Either find the cause or send me to someone who will."

I'm not at all sure how real the bile reflux syndrome is, but I suppose it's worth knowing about:
posted by neuron at 8:36 AM on July 13, 2009

A couple things to look into: hiatal hernia, celiac disease, and food intolerances/malabsorption syndromes.
posted by chez shoes at 8:52 AM on July 13, 2009

hmm...I had a hiatal hernia when I was young, don't know if they are hereditary.
posted by stormygrey at 8:54 AM on July 13, 2009

He needs to tell the allergist he wants ALL the allergy tests. Even the ones that are the equivalent of shooting a rabbit with a machine gun. Typically those will give results for more foods than he is actually allergic too, which usually necessitates a strict elimination diet to find out which ones are the real culprit. It's why it's important to have a very good allergist who is willing to supervise elimination diets...in my experience, many aren't and it can take awhile to find those who do. False positives are a real problem and elimination diets can be difficult, but for someone with persistent problems that haven't responded to normal treatment, an elimination diet is worth it. It sounds like your brother has a limited diet anyway, so he would not have an issue doing one.

this is a good article about it
posted by melissam at 8:55 AM on July 13, 2009 [1 favorite]

Just regarding the constipation: up the fiber intake, especially soluble fiber. Best is something like psyllium husk powder without any additives. Here's one example, very cheap and high quality. Work up the quantity slowly over a period of weeks, give the body the chance to adjust. Start off with a quarter tablespoon, and eventually work your way to 2 tablespoons a day. Mix in with plenty of liquid.

Obviously, a doctor should be involved in diagnosis to take care of the underlying issue, but for constipation, psyllium will be very helpful. The other thing, is that fiber has complex functions - some forms of it can inhibit absorption of nutrients, but other forms can actually make it easier to assimilate nutrients. Fiber can also stabilize the gut flora and provide a substrata for the probiotics to be effective. Soluble fiber can also be helpful in dislipidemia and bile uptake issues, and may help somewhat with reflux, particularly if the fiber is part of the food matrix (as in some fruits and vegetables).
posted by VikingSword at 9:14 AM on July 13, 2009

Seconding neuron about noting weight loss. When I walked into my gastroenterologist's office, I said, "I have lost 30 pounds in the past 3 months without trying. Please help me find out why." This got his attention immediately.

This might be a useless tactic, but has he tried sleeping with his back elevated a bit? I know that when my hiatal hernia was affecting me badly, I'd make a 30-degree hill out of pillows and make sure I wasn't encouraging anything to come back up.

I also went through months of testing and treatment, which is frustrating and life-interrupting, but eventually helped. I do hope he finds a gastro that wants to help him live a normal life again. Perhaps you can browse digestive-issue online forums [I looked at IBS and celiac forums] for doctor recommendations?

Best of luck to him.
posted by rachaelfaith at 10:30 AM on July 13, 2009

Thanks, yeah, he tried sleeping almost upright, but now he just doesn't eat much to compat the issue.
posted by stormygrey at 10:42 AM on July 13, 2009

Does he drink a lot of coffee? Does he tend to eat right before going to sleep?
posted by Civil_Disobedient at 10:43 AM on July 13, 2009

He drinks no caffine and as in the question body, he won't eat after 4 pm
posted by stormygrey at 10:48 AM on July 13, 2009

Any history of diabetes in the family?

Nerve damage caused by high blood sugar over a period of time can affect the way the digestive tract works. (Gastroparesis)
And rapid weight loss is a symptom of diabetes.

Allergies are another good avenue.
posted by FergieBelle at 10:57 AM on July 13, 2009

Yeah, go to an allergist. IANAD, but my SO has celiacs and a bazillion food allergies, and the two years before he was diagnosed sound pretty similar to what your brother is going through. The doctors also tried to convince him it was stress initially.
posted by PhoBWanKenobi at 11:52 AM on July 13, 2009

Just throwing this out there - has he seen a acupuncturist? I've always had kooky digestive issues (not nearly as sever as your brother's, though), and acupuncture has done wonders for me and my belly. Look for one that does both the needles and the herbs. That stuff's amazing. Sorry I can't recommend one in your area - the one I used to use was way down in Tallahassee.
posted by Pecinpah at 12:12 PM on July 13, 2009

Also look into achalasia. My husband suffered from symptoms similar to your brother's from childhood and was misdiagnosed and mistreated for decades. Weirdly, after he was diagnosed with cancer of the esophagus and had his esophagus removed, he has gained weight and his digestion has greatly improved.

I encourage you to keep researching and keep trying doctors. You cannot afford to assume one doctor, or even half a dozen, are right.

Your brother is very lucky to have such a caring sibling.
posted by Lizzle at 12:57 PM on July 13, 2009 [1 favorite]

Usually I would say to go to the MayoClinic since they specialize in caring for very sick people and getting to the root of these sorts of problems. The closest one to you is in Jacksonville, FL but I know that's a ways away. Your next best best is probably going to a be a teaching hospital like Emory University Hospital Midtown. This hospital specifically notes a focus on gastroenterology among other specialties.

Please be insistent that he is in failing health, listen to rachaelfaith about the weightloss especially! Get him to gather all of his medical record together so you can send them ahead prior to the first appointment- this includes copies of all of his scans, bloodwork, etc. Start him tracking his diet and and gastro problems now in a journal so the doc can see what his daily routine is like. Include a list of all medications he takes and any he has a specific reaction to (including the laxatives he had a problem with). And finally, you need to create a comprehensive list of your family's medical history include your allergies and health issues and those of your other family members. If you can bring your allergy report with you to show the results if the doctor requests, that would be good too.

I've gone through lots of doctors trying to figure out my gastro problems and finally got them under control with the help of an allergist. I went for two years in serious discomfort and now I'm a much happier, healthier person. I hope your brother gets the care that he needs and good luck!
posted by Mouse Army at 2:37 PM on July 13, 2009

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