<<Disclaimer: Verify this information before applying it to your situation.>>
First off I want to say this list is the greatest! You people are so
incredibly helpful. It is so reassuring to know I'm not alone and that
there is such a warm community of fellow sufferers who are willing to help.
To summarize the advice generally (I'll post specifics here too), it went
from incremental change to radical change. Personally, I plan to try the
incremental change first, though I know the advocates of radical change
might suggest I'm just wasting my time. Why hit a mosquito with a hammer if
you're not 100% sure you have to? There were also a lot of people who
suggested I do things I am already doing -- check labels, eliminate foods,
look for hidden gluten.
So below are the suggestions I found most helpful. I put them in the order
that I'm most likely to try them. I hope this summary proves helpful to
others who are having the same issues I am.
Thanks again,
Richard Paul
rlpaulproductions, LLC
http://www.rlpaulproductions.com
3704 Alton Pl., NW
Washington, DC 20016
Documentary productions/Fundraiser production
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TAKE A PROBIOTIC
this happens....because you gut hasn't healed yet. The villi are gone and
your sensitivity has increased. But, help is close. My nutritionist, who
teaches on the graduate level, told me to take WITH EACH MEAL ONE
L-GLUTAMINE CAPSULE AND ONE PROBIOTICS COMPLEX. The probitoics heals the
gut and the glutamine acts as a catalyst. You will start to feel better
within a few days and your gut will totally heal within six months, at which
time lactose intolerance will be gone. Stay away from cow's milk and cow's
milk cheeses...you are lactose intolerant as long as the villi are damaged!
Eat goat's milk or soy cheeses instead. For gluten symptoms, go to a health
food store and get VERATRUM ALB 30C, a homeopathic remedy. 2 pills under the
tongue will stop the symptoms cold! My md recommended this and even tho I
have been gf for almost 15 years and can't remember when I've had a gluten
attach, I still carry these with me always. Cost is $5 a vial.
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DON'T TAKE IRON
1. Iron supplement tablets are one item that I have not been able to use
without symptoms. EVER!
2. I do have a comment about iron supplements. Iron supplements are
notorious for causing stomach/intestinal distress and I have heard from many
people who do not tolerate them well. Particularly the over-the-counter
variety. I take a prescription supplement - Chromagen Forte - which is much
more easily tolerated and includes other things like ascorbic acid that aid
in the absorption of the iron. It's a bit expensive - around $20 - $25
dollars a month - but saves me a lot of stomach upset and really takes care
of my anemia, which was a primary symptom for me. If you want to learn more
about it, I have included the web address of the pharmaceutical company that
makes it.
http://www.savagelabs.com/2%20-%20Products/C%20-%20prod_chromagenforte.htm
3. I finally decided -- after chopping a million things out of my diet --
that it was possibly because of supplements I was taking -- which I had been
buying from GNC. I stopped all my supplements. It took about a month, but
the skin problems settled down greatly. There is no "scientific" way I have
to know if it was one of these supplements, but I have to think that it was.
If I decide to go back on supplements, I will seek out a much more reputable
manufacturer of these pills. I'm very gun-shy right now, though. All the
pills from GNC were supposedly "gluten-free" -- but my first suspicion
should have been when, each time I got new pills, they LOOKED different even
though they were the same supplement and same dose, and (I assume) were
obtained from a different manufacturer.
4. The iron supplement could have some gluten in or it might not have gluten
in but have gluten on the lines on which it is made. The chopped dates that
I used did not have gluten added but of course they picked up some on the
lines as they were packaged. The company that made them thought that should
not count. My mother who did not have CD could not take iron more then
twice a week or she got diarrhea and her stools floated. On the other hand
I get constipated when I take iron every day.
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NO PROCESSED FOODS
1. I think it will just take a few years for things to right themselves. The
recurrences of problems lessens for me with each passing month, but I still
am not completely well. One thing that has helped me is to remove all
processed food from my diet - this is hard, lots of shopping and cooking,
but it has helped. So, I only eat whole foods that I have prepared myself -
nothing packaged of any kind. I also recommend, if you haven't already,
removing all grains and flours of any kind, including rice and corn, if you
currently eat these. This means, of course, no baked goods of any kind, not
even ones you prepare yourself. It has helped me enormously - big
improvement in problems on trying this. It makes for a very difficult diet,
but it's worth it. That has helped me a lot with bloat, pain, and the
problems you describe.
2. Are you eating processed foods? Stick with non-processed foods. Another
problem could be medications. Go to the web site: www.glutenfreedrugs.com
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ELIMINATE EVERYTHING
The only thing that has helped is eliminating ALL grains. I now eat PALEO
(caveman) FOODS and feel 100% better - no symptoms. I eliminated all
potatoes, yams, dairy, beans, legumes, grains, etc. PLUS I am healthier
than ever! YOu can find info about PALEO by doing a google search for PALEO
DIET.
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DIET CHANGE
1. Have you ever been on a diet of only fresh meats, vegetables and fruits?
And then added some clearly marked gluten free bread, and gluten free baked
goods after one month at least of fresh foods only and no restaurant
meals.If so, then assume that your symptoms are most likely transient and
due to healing. I found that I began to react to seeded fruits and
vegetables about 6 months along and also to heavy starchs. So I stopped
strawberries and raspberries, tomatoes and white potatoes. These foods were
causing gas and that will cause stool to float ( gas pockets).
2. It wasn't until I came across the SCD (Specific Carbohydrate Diet) that I
finally got my health back. I highly recommend you read "Breaking the
Vicious Cycle" by Elaine Gottschall. I literally would not be here today if
it was not for this woman and her book! After you read the book, you'll
come to the realization that it is not just gluten that is at the root of
your problems.
3. Eventually I just bought a bunch of Tupperware containers and a NEW
George Foreman grill, made myself a bunch of chicken breast and plain old
white rice, and lived on it for two weeks. Brought it to work in the
Tupperware. I added in some Land-O-Lakes margarine after a few days and
that was OK. After two weeks, baked potato with margarine.... then boiled
hamburger. Bad move; I had to back off hamburger. Found out it was
contamination from the grocery store, so I buy at a meat market now. It was
a long but happy process to find out what was doing me in. Portions had to
be cut; I'd been eating enough for five people, and had to cut that down to
a reasonable size portion. Big portions kill me. For a time I had to cut
out lactose completely. :-( I'm 3 years GF now and just had a bowl of
cereal, but if I overdo it I pay for it, big-time.
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YOU HAVE CANDIDA
1. Like you, I was eating a very restricted diet, so it was not too hard to
illiminate and then add back in. But sometimes things that I could eat one
time would then seem to bother me again. With a lot of advice and
experimentation, I finally came to the conclusion it was candida and lack of
digestive acid at times. I ended up following the advice of my nutritionist
who had at the very beginning recommended certain vitamins with digestive
enzymes and HCl, as well as taking probiotics with every meal. After a few
weeks of this things ironed out. I also had to give up my hot tea, totally
for about 5 weeks.
2. Looks like "Candida Albicans". It is tough to get rid of it, but there
are medications for it. Talk to your physicians about it. Most of us going
trough this after diagnose because we try to replace bread with sugarry
cookies.
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YOU HAVE CARCINOID
If you are contiuing to have problems, you may want to check on other
potential diseases which would not be helped by a gluten free diet. That is
where I am right now. Check on thyroid malfunction, carcinoid
syndrome,cushings disease and pheochromocytoma. They all behave with
uncontrolled diarrhea like symptoms, but if you have no other symptoms check
on carcinoid as it tends to behave in its early stages with minimal symptoms
such as diarrhea and food intolerances. Have your doctor run a CHROMOGRANIN
A blood test which has 98 percent specificity over the 24 hour 5HIAA urine
test. I have been going through seven years of hell trying to unravel my
medical mess which includes celiac disease. If your doctor says no you do
not fit the bill for carcinoid, DON'T LISTEN TO HIM AS THERE ARE ONLY A FEW
IN THE WORLD WHO KNOW ANYTHING ABOUT THIS DISEASE. INSIST ON THE TEST SO YOU
DO NOT PAY DEARLY DOWN THE ROAD.
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LOOK ELSEWHERE FOR ADVICE
I would suggest you to ask your questions at this other excellent site:
http://forums.delphiforums.com/celiac/messages
There are very kind & knowledgeable people there, among them doctors, to
answer your questions.
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