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Thanks for all the responses and suggestions on my brother's situation
(ulcers in esophagus and intestine), everything ruled out but a severe
"case" of Celiac, although he's been gluten free since being diagnosed with
celiac several years ago.  Many people asked if he could have refractory
sprue.  I've forwarded that plus an explanation of what refractory sprue is
to my brother, it seems like the most likely possibility.

Here's a summary of other responses I've received (in addition to the
possibility of having refractory sprue):

I can't give you any specific references beyond the standard "maintaining a
gluten free diet is sufficient for *most* people" but certainly our doctor
figures my son's ongoing health issues are related to his having CD, even
though he is absolutely GF & his villi have healed.Everyone is individual
and everyone's immune system is individual. If your brother had been sick
for a long time before being diagnosed his system may have suffered more and
different kinds of damage than the "norm." As our doc says, a "99% cure"
rate isn't much help to the other 1%!
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From my experience,  stomach ph is very important.   Beatine Hydrochloride
is mild and adds a little acid to your digestive system.    You can be GF
but if that acid bottle (stomach ) is not at the right ph food will not be
digested.   It took a long time to learn this myself.   In previous years I
did have blood in my stool.   Had a check just last week .   No blood.  Some
people's stomach produce too much and some not enough.   I think I've had a
low acid stomach all my life.
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Hi, I continued to show symptoms (diarhea particularly) but testing showed
that my antibodies were extremely low after being on the diet for awhile.
The nutritionist at the Celiac Disease Center in NY (Ann Lee) explored my
diet with me, times of day I would  get sick and what I was eating.  It
seems that fiber and possibly fructose were causing problems.  I am going
for more testing this summer to see if I have a fructose intolerance, but I
cut back on fruit, nuts beans, oatmeal and I've  been much better.  I
started to reintroduce pineapple, which after a few pieces made me sick
before, now it seems better.  It seems I'm recovering. But black beans still
send me over the edge.
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I know that I did not improve at all until I went on the Specific
Carbohydrate Diet
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Since the ulcers continue into his esophagus, I am inclined to rule out
Celiac.  Did the Doctor test for acidity in the esophagus, stomach, and
small intestine?  Did he prescribe any stress or acid reducing medications?
Get a second opinion from an Internal Medicine doctor.  There are also forms
of infection than can cause ulcerations.  Was a biopsy done on the ulcers?
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I don't know if ulcers in that part of the anatomy could be related to mouth
ulcer, but mouth ulcers are no uncommon in celiacs after dx. Gf diets which
high in corn tend to be deficient in l-lysine, an essential amino acid,
since corn does not contain lysine. Supplementing with l-lysine (Nature Made
is probably the easiest g.f brand to fine..) often helps.
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Unfortunately, some with celiac suffer from other conditions as well (or as
bad), including ulcers.
On the Celiac Delphi Forum:  http://forums.delphiforums.com/celiac/start
some say they have this condition as well.
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She [author's daughter with similar problem] does better and has less
bleeding on the SCD yogurt that is high concentration in acidophilus
cultures.  We use Stonyfield for the starter and make the yogurt on goatmilk
to avoid the cow sensitivity she has.
Coconut milk and the white meat of coconut pureed with water in the blender
has a soothing effect.  I have read it is also antibacterial and the fat is
healing in the gut.  We use it raw but I suppose you could cook it in a
sauce pan.
I am also thinking about using it to make yogurt on instead of goatmilk.
There is a website that sells kefir starter: Body Ecology which I plan to
try.
She has had several problems that turned out to be vitamin deficiencies that
disappeared when I gave her vitamins (E for breast cysts, D with bonemeal
for bone pain, K when she was not clotting).  I have recently read that a
vitamin C deficiency produces scurvy, which I knew, but when I researched
scurvy I found out it causes intestinal bleeding!  It can also be life
threatening.  I have started her on 500mg of Solgar Bioascorbate buffered
vitamin C a day, and some of the bleeding has turned brown which could mean
healing. I am going to up the dose to 2 caps a day and see if she improves
further.
She is also on an EColi antibiotic called Xifaxan that is designed to not be
absorbed but kills bugs in the gut.  She has improved some with this.
Eating fruit makes her worse which suggests that she may have a yeast& mold
issue because they grow invisibly on fruit.  I plan to try kefir which is a
yogurt like drink that has beneficial yeasts in it that can control bad
yeasts in
the gut.
He should be checked for H Pylori.  There is a breath test, I think it is
hydrogen gas after you drink something.    Many ulcers they now know are
bacterial and cultures don't always work, but there are regimens using acid
suppressing pills (aciphex, prevacid type stuff) with Biaxin and another
antibiotic for several weeks to clear the
gut then you have to repopulate it with good bugs, nuclear strength
acidophilus combinations to prevent it coming back.
There are also intestinal enteropathies that can be brought on by soy or
milk proteins.  You can put "soy enteropathy" into google and you will get a
bunch of hits.  Soy makes her much worse, and the Kennel Club breeder where
my mother gets her dogs told my Mom that a lot of purebred dogs get
intestinal bleeding
from the dogfoods that have soy meal in them.  They are using ground meat
and rice as the base for these German Shepherd dogs, give them a banana a
day and table scrap vegetables and the dog is doing very well.  A celiac
dog??
-----------
One of the celiac websites has a blurb that if one still reacts on a gluten
free diet, then suspect, dairy or soy or bacteria or parasites....maybe one
or two other items were listed...it has been a while since I read it...has
he had a stool test done?  Has he been tested for h. pylori? Put oregano,
rosemary or thyme in his food to kill bacteria.  A chicken soup remedy--may
not help, but won't hurt.
------------
Going GF helped me a lot, but I had to do a lot more to finally get healthy.
I think a lot of it has to do with dysbiosis: the bacteria in the gut are
just incorrect, after years of gut damage. Also I had to stop dairy, as it
was almost more problematic than gluten. And I did a feast/fast diet for a
year or so, which really helped, and took probiotics, and have a massively
nutrient-rich (and very tasty, I might add) diet.
The two things that, I think were key in the gut department were:
1. Kefir. The bacteria or yeast in kefir make amazing differences in the gut
flora. I can't do dairy, so I make
"kefir beer", which tastes a lot like regular beer so it's not really a hard
medicine to take. I dont' know exactly why
it works, but it does, for a lot of people.
2. Pascalite. Taken with a meal, it seems to change how the meal is
digested. Massively. And it's cheap.  I suspect that if a person with major
problems takes it with every meal, most of the problems disappear.  You
still need to change your diet to get permanent change, but pascalite is a
quick fix. Works great for eating out too. (I don't work for the company. I
found out about it on this list).
---------------

Thanks for all your help (both to those I've quoted here and to those I
didn't quote, because they're comments were so similar to these)!
Clare

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