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Many thanks to all for the many suggestions and well wishes for my 17 yr. old
son's painful gastritis. The encouragement is wonderful. We will probably
follow up on almost all of the remedies suggested......something is bound to
work. Thank you again....Barbara
1.-- I would suggest you to go to this other excellent site:
http://forums.delphi.com/celiac/start/
You'll see Abigail's GF food list there.
Very caring and knowledgeable people to answer your questions.
2.-- Read this post from today- (Fwd: Dr. Fine's recommendations) what about
the probiotic idea? Or what about taking papaya enzyme? I use papaya enzyme
with success. (And I feed it to my rabbits to prevent hairballs too!!!) Also
have him keep a food diary. And see a doc- it could be something other than
CD. Good luck!!
3.-- One thing that I have not seen mentioned on this list-serve, which was
mentioned on many sites related to celiacs or intestinal health on the
internet, is the high incidence of intestinal parasites in people with
celiacs. Because celiacs, especially pre-diagnosis, have what my doctor
terms "compromised intestines" they are more prone to becoming infected with
a parasite (all available in almost all water supplies in the US and Canada,
contrary to popular belief - info which is also available by doing a search
of the web and seeing the number of epidemic outbreaks in large cities as
well as towns and rural areas.) Just to rule this out, you may want to take
your son is not skeptical, and will test at least three times at intervals,
as the parasites are not always being passed and it is easy to get a false
test result.
4.-- If he's totally dairy free and GF, then the only thing I'd know to
do would be to do an elimination diet. My daughter started with nothing
but rice for two weeks, then carefully added just one thing at a time.
If the rice is sweetened and it does it, then cut the sweetener out and
try again. Just as we can lack the enzyme to digest lactose sugars, we
can also lack the enzymes to digest other sugars as well as refined
carbohydrates. You're in a tough place, it does take some determination
to trace it down. Best wishes.
5.-- Suggest to him that he eat more frequent, but smaller meals. Also try
reducing the fiber in his diet. I know that we are all supposed to eat a ton
of fiber, but many of the gluten-intolerant suffer discomfort from too much
dietary fiber. He might also have a little lactose intolerance--many
celiacs do. I can't drink fresh milk, but I can eat dairy products like aged
cheese, yogurt, a little ice cream. No problem as long as I control the
amount.
6.-- I would suggest using a food diary, documenting EVERY THING he puts
in his mouth. I changed salt shakers once and ended up very ill after a
week of using it. Such a small thing sure caused a major reaction and
it took forever before it dawned on me that the shaker I was now using
contained added ingredients I couldn't tolerate.
7.-- If you eat meat, check out what they are possibly putting in it or
on it. I recently found out that a lot of pork products, including
Hormel, are either basted or injected with vinegar, salt,spices, etc.
Also, some poultry is basted or injected with broth which may not be GF.
Hormel advised me that a particular cut of pork chop which listed some of
the ingredients, were not safe for celiacs. At least one of our local
supermarkets carries nothing but the pork with added ingredients.
8.-- I cannot eat rice or I get the symptoms you mention in your son.So many
gf recipes have lots of rice in them, so I can't use most of them.
9.-- My 7 year old daughter went through that after being gf for
9months. They discovered she also had ulcers! She's doing fine now on
Previcid, couldn't get a straight answer about prilosec. Good luck.
10.-- Very noisy stomach gurgling could be due to a motility drug, if he is
taking one, such as Reglan, octreotide, or Propulsid (I think Propulsid is no
longer available). It is also a sign of bacterial overgrowth in the small
intestine. Have you let his doctor know about the noise also?
11.-- I can only say that the only time I get acid reflux since going GF is
when I get gluten. My most recent experience was when Costco brand coffee
filters were used instead of the previous Melitta brand. I mention this only
to illustrate how weird some of the sources of gluten can be. Apparently
paper sometimes is made with wheat paste glue between layers. I was sick for
months. Another source of problems was calcium fortified Minute Maid Orange
juice. He is getting something. Toothpaste? I use Toms of Maine. For a
long time I was drinking IBC rootbeer believing it to be GF. It is not!
12.-- give him that veratrum alb 30c which you can get from a health
food store...it is a homeopathic remedy with no side effects...2 pills
under the tongue as needed....costs about five dollars a vial...check
his food and meds...sounds like a gluten reaction...check esp for vinegars.....
13.-- He may need to keep a food diary...A steno notebook works well..
List all foods eated down the left side w/ approx time--AM, lunch, Dinner,
evening. On the right side of the page, list the symptoms corresponding to
the approximate time in the left colums. It is a real bore to do this, but
if your feel too bad to have a life, it's something to occupy your time.
Things to consider...canola oil, milk (either lactose or casein), rice, guar
gum, corn, tapioca, soy, or a problem w/ yeast/fungus--which includes yeast
breads, mushrooms, fruits that mold easily--cantalopes, strawberries,
raisins, etc, & even xanthan gum--technically a corn fungus & possibly a
double offender (probably didn't want to know that). I know of celiacs who
that these individual sensitivities. (Mind is potato starch--just gives me
bone pain.)
Might also be related to trace amounts of gluten slipping through somewhere.
Could be trace amounts consumed on a daily basis (in my book that included
Kellogg's Corn Pops & Pebbles cereals (eat the Malt-O-Meal brand instead), as
well as Squirt soda even though it's supposed to be okay) or a product which
is eated regularly, but the ingredients are not the same--source of modified
food starch changes regularly. Sometime it would be okay, other times not.
Same problem exists in manufacturing process. While vanilla ice cream is
usually ok because it's the first flavor made, the flavor made after cookie
dough or cookies & cream would be contaminated.
Could also be related to high fat or high fiber or even constipation--
exercise/dehydration can cause that as can gluten. If the food/gas
doesn't go down, it needs to go somewhere. (Probaby should track
bathroom trips under symptoms.)
If all else fails, have the gall bladder checked. Good Luck. Feel better
soon.
14.-- Check for other food allergies. I had a "relapse" after going GF, and
it turns out I am allergic to peanuts, soy and all tree nuts. I read a post
about Dr. Fine, where he said 50% of his patients are also sensitive to soy.
Good Luck.
15.-- My daughter was just diagnosed with h-pylori bacterial infection,
which went along with her chronic active gastritis. We are doing the
antibiotics now and we are seeing much improvement in pain. Loss of
appetite due to the meds, but I'm sure that will return. Hope this helps
16.-- I get similar from cheese. Try Phazyme for gas pain, it's GF.
17.-- Try sodium bicarbonate tablets. These neutralise stomach acid.
Also take garlic which kills off unpleasant bugs.
18.-- Soybean products give me the same symptoms as gluten. They are in more
products than gluten. Are there other intolerances?
19.-- I would higly recommend food allergy testing, as many celiacs have
additional food allergies. These allergies are delayed, so it is impossible
to figure them out on your own. I was totally disabled, with severe
abdominal, back and joint pain, severe shortness of breath, stroke symptoms,
rashes, bloating, the list goes on and on, and it was all from food
allergies. There is a lab in Fla. that does the testing via the mail, and if
you don't get better in 3 months, they give you your money back. The testing
also includes a dietician working with you over the phone for a year, which
is very helpful as you have to rotate your son's diet. You can have a
reaction up to 3 days after eating something, so that is why you cannot
figure it out yourself. If you are interested, call Lisa Durow at Better
Health U.S.A. at 1-800-684-2231 ext. 6251 Good luck!
20.-- I have these problems in "cycles" and have not found a real "cure".
The last two times this happened were about 1 year apart. I have been
scoped with these episodes and told there was chronic inflammation in the
esophagus. The previous time I tried a prescription for Prilosec which I
felt was not effective. I was then started on Pancrease, a prescription
pancreatic enzyme. I was better for many months and felt that was the
solution.
A few months ago it all began again--the pain, noisy insides that
sounded like a war was going on inside and loss of appetite, weight loss
etc. Tried a new doctor and had the usual recommended endoscopy. She
suggested increasing the amount of the Pancrease and it has improved.
Don't know if this was the answer or it just ran its course and improved
but I am pain free right now.
You might mention this to the doctor but I'm just not sure what did/or
didn't help. Hope your son feels better soon.
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