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Dear List friends,
Our 16 year old daughter was diagnosed as celiac in 2002. Five
doctors didn't
know, but a celiac friend diagnosed her. The CD Suppport group sent us to
one of the
famous gastroenterologists who reviewed labs, looked at biopsies, did
history and exam.
Her barium swallow was normal. 24hour pH problem may not have been working
right.
Endoscopy cultures negative. Stool and urine cultures botched by lab.
Enterlab antibody
tests positive.
She was on Aciphex at the same time as biaxin, then augmentin
then cipro for ear
infection. One doctor theorized she had 'clean gut' with no healthy germs
left. Acid pills
stopped working after a couple of weeks. Maalox made her worse.
She was so sick she laid on the couch and needed help to the
restroom for 6 wks
while she had a lowgrade fever, and could hardly digest anything except raw
fruit, broth,
some chicken & potato with digestive enzymes. 1/2 her hair fell out, nails
broke, she had
skin rash on her hands, the bumpy deposition on the back of her arms, blood
that didn't
clot if she got a cut, bruises where she bumped into something, breast
cysts, bad bone pain,
breathing problems, very sluggish bowels and heartburn with gushes of
reflux.
She has been scrupulously gluten free for 2&1/2 yrs. All food
is from scratch, even to
griding our own rice flour. I check ingredients on every vitamin, ask about
contamination.
Her prescriptions are compounded. Reading medical journal articles,
magazines, tapes
from Columbia Univ, and support group meetings we have improved her
nutrition a lot.
Her hair is finally growing back and nails improving. She
regained her weight and has
started growing again a litle though her bone structure is very frail in a
large framed family.
Vitamin K supplementation finally improved the clotting. Vitamin D with
calcium/mag &
multimineral supplements finally got rid of the bone pain. Bone density has
improved.
Vitamin E 800IU mixed tocopherals a day got rid of the cysts, on instruction
from the breast
doctor. Bone meal with phosphorus and B 100 complex has improved energy
considerably.
Her allergist said keep a diet journal. Removing corn helped the heartburn
some, and
removing soy in all its forms got rid of the breathing problems.
Betaine made heartburn worse. Licorice helps sometimes. Slippery elm helps
occas.
Flax, more water and raw food with metoclopramide in emergency improved
bowel function.
Two questions:
(1) One odd thing for which we cannot find an answer is that she seems to
need a lot
of acid forming foods to feel better (beef, cranberry, plums). This
produces an acid urine
pH strip result. She feels better and the reflux is better though not gone.
She has to eat
beef every morning or she feels lousy. Without this she (and her dad) both
gravitate to a
very alkaline urine pH, and it produces more heartburn and reflux. Why?
What is the
mechanism?
(2) She usually feels like she has something in her throat. Sometimes the
sour taste
comes up in her mouth or she will even feel it come up in her nose even
being upright.
She sleeps sitting up, no elastic waistbands, tomato, citrus, caffeine etc.
With being GF, the
feeling of swallowing over a lump went away but the reflux and heartburn
persist. Despite
what they write, she feels much better on a high fat diet (olive oil, fat on
the meat, homemade
mayonnaise with olive oil).
She sleeps with a peptobismol tablet in her cheek, upright in a
recliner to avoid eating
over night because of all the fillings. Whenever an infection is going
around (head cold,
flu, whatever), the digestive problems get worse when the immune system
gears up.
They want to scope her again and do cultures and biopsies, which is a lot of
misery and
may not produce anything but incurs infection, hemorrahage and ulcer risk.
This kid is losing her whole high school life. She was advised to nibble
constantly and it
has produced 30 fillings in her already fragile teeth. It makes her
different and she loses
her singing voice. It is hard to participate in any activities with other
young people.
Some things I wonder about are
-- bacterial overgrowth -inadequate stomach
acid?
--other nutritional deficiency -some kind of
motility problem
-- too much bismuth (she uses a lot less than she used to)
-- maybe her esophagus is not making mucous coating
I have tried everything I or our friends know. We need an answer to this
reflux problem.
I would be grateful for any experiences anybody has. Thanks.
Paula in Pa. [log in to unmask]
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