<<Disclaimer: Verify this information before applying it to your situation.>>
Dear Group,
Last week I posed some questions to this list regarding various tests
and asking for responses from others who have used Great Smokies and the
ELISA/ACT test. I was disappointed that I didnt get many responses.
Following are the questions I asked, with some of the replies.
1. If you have been diagnosed with this amoeba, (Dientamoeba fragislis)
what did you do, and was it successful?
I got no response to number 1.
2. If you have been tested for Candida albicans(Great Smokies Labs),
what were the results? I have never heard of anyone being tested and
told No Growth or Normal Flora, which are 2 of the choices. If you
have been, please tell me more about your situation.
######
I have gone through thousands of dollars on testing and supplements
regarding supposed intestinal yeast and giardia. I've been on numerous
medications like Flagyl, Humatin, etc., etc. It's still the same -- To
give you one example, I went to one doctor and the lab he sent me to
kept sending back reports that I still have giardia, despite getting
treated with all these meds. I changed doctors, went to another lab
(which seemed to me like a much more professional operation), and they
told me there was no giardia.
In the meantime, the symptoms are still the same.
########
I took Flagyl when I was having bouts of diarrhea (one about 3 days).
It was awful! That is one nasty drug. This was before I figured out
that I was gluten intolerant.
########
I took Flagyl back when I was tested for everything, BUT cd! The
doctors couldn't understand why a little amoeba that is in "everyone's
gut", was "bothering me so much"! This was a very quote from the
internal disease specialist that my family doc consulted with. I had
gotten to the point where I had horrible black stools several times a
day. Even water gave me terrible pains right where the small bowel and
intestine hook up. I dreaded eating or drinking anything. I would double
over with pain. After taking Flagyl, which the one specialist said I
didn't need, because the parasite was NOT in big enough numbers, I
seemed miraculously cured. Of course I now know on hindsite that I had
celiac, which both docs missed. The reason I was so bothered by that
"common parasite" in "low numbers" was BECAUSE of my Cd. Later I got
symptoms again, but they weren't as bad as when I did have the parasite.
My doc then diagnosed me with IBS! I went on the internet and one link
led to another and I found the celiac symptoms. I seemed much more like
this than IBS. I told my doc this on my next visit and he "pooh-poohed"
me, because I wasn't skinny and didn't look like a concentration camp
survivor! Fast forward 3 years and my sister started having the same
symptoms I had had. Her gastro even started treating her with Flagyl for
a parasite, when all of a sudden he called her and said he was treating
her for the wrong thing! He thought she had celiac! I thought back to
the 3 years that had passed since my conversation with my doc! She was
blood tested, biopsied positive for celiac! I immediately tried to get
into my doc, but since it wasn't an emergency he made me wait 6 weeks to
see him! In the mean time I found this listserv and found there were
many heavy-set celiac people! The reason? We have auto immune
thyroditis(Hashimoto's) probably from NOT being diagnosed soon enough! I
read him the "riot act' for not believing me 3 years earlier!
When I went to my gastro (recommended by CSA) he was as rude to me as my
family doc and tried to say fat people don't have celiac! Arrrgh! I KNEW
better because of this listserv and told him I had hypothyroidism which
caused my weight gain, because know one caught it for years! I also had
positive blood tests. When my biopsies came back was he ever "singing" a
different tune. He didn't apologize for his rudeness, but I have to say
it was VERY satisfying to hear the incredulous tone of his voice as he
told me my biopsies were positive! I told him it was no surprise to me!
I had been trying for 3 years to get doctors to listen to the fact that
I had it!
Oops, sorry. I'm running on. The only question I can answer is that I
DID have symptoms and the Flaygl did really help for quite a while. I
was told by the gastro that Flagyl is gf, but since he didn't believe I
had cd until he saw my biopsies, I'm not sure his "word" is so great!lol
The meds didn't bother me though and even though I didn't know it, I DID
have cd when I took it. Hope this was of some help.
#####
Before taking the nizoral tablets, I too had tried taking beneficial
bacteria, which did help but still didn't get rid of the yeast. I truly
think treating the underlying thyroid problem and taking the nizoral are
what fixed the yeast problem. I hope you consider it. I also highly
recommend Dr. Fine's test.
I did the gene test and I had two genes for celiac - worst possible
scenario. And all the other docs said I didn't have celiac even tho I
reacted every time I ate wheat!
######
When Great Smokies did my CDSA, they also included a page titled "Yeast
Sensitivity". This page listed the Prescriptive Agents and Natural
Substances that were "required to inhibit growth of the yeast organism".
I had already taken 2 of the meds on the list- Nystatin and Plant
Tannins. We then tried the Diflucan because it was listed as a "most
sensitive" Prescriptive Agent. Of course they didn't solve my problem
because my problem was Celiac Disease.
Right now I am trying another course of action that you might want to
consider also. I have started the Specific Carbohydrate Diet (SCD). I
felt much better after going gf (one year ago) and a lot of symptoms disappeared
-migraines, fatigue, depression, diarrhea (of course). So I felt great -
- that is until I started to add back into my diet the gf breads, cakes
and other carbohydrates. Now my migraines have returned (not as
frequently though) and the fatigue, depression and a nasty need to clear
my throat always (mucus). When I stick to the SCD, the first thing I
notice is that I don't have to clear my throat anymore. Going off the
SCD will bring this symptom right back. So I am trying this course of
action. I have purchased the book and joined the SCD listserve. Let
me know if you are interested in this course of action. The diet robs
the microbes in your gut of the carbohydrates that they feed on.
######
I'm not sure if you had found a clever way of asking,
"why does everyone test positive for overgrowth?" or
if I just interpreted your statement incorrectly. I
must confess that I won't submit to testing through
Dr. Fine's lab because I've not yet heard, on this
list, anyway, that someone tested negative for celiac.
I am trying to find a reasonably unbiased opinion of
the ELISA tests, but can't seem to find anyone without
any interest in one side or the other. I'm pretty sure
I have food sensitivities I haven't yet identified,
but at my rate of discovery, I'll be dead before I get
through the first six foods I test.
I hope you get good info to apply to your situation
which will help you. All I know of Flagyl is that it
is primarily used to treat fungus infections and makes
me terribly nauseous...it's a very strong drug. GF? I
don't have a clue.
########
HIGHLY recommend not taking Flagyl for ANY circumstance!!!!
My husband took Flagyl after a minor surgery and within a week
had peripheral polyneuropathy. It took at least 6 months for his
nerve tests to clear up. And this was a very scary 6 months in
which we didn't know if he REALLY would clear back up!!!!
It's never worth taking Flagyl, and there are a lot of other drugs
available for the situations, by doctor prescription.
#####
Mycology: Candida albicans was 4+ (the very highest on their scale)
Bacterial Dysbiosis Index was 9=moderate (due to excess Candida)
Whenever I ate, I had diarrhea off and on for years, then steady
diarrhea for 6 months. That is how I got the Candida overgrowth. I
haven't had a repeat test done since being diagnosed with CD so I don't
know if anyone ever receives a "no growth or normal" rating.
#######
>... ELISA/ACT test for food sensitivities which can be detected in the
blood. However, I am not certain that reactions in the blood are always
also reactions in the gut.
I agree. My boss, a doctor, has food allergies so severe that
he must carry an Epi-Pen with him at all times. He's gone into
anaphalaxis several times. Yet he has NEVER tested positive for any of
the ELISA/ACT food allergy tests not even to the foods he knows cause
reactions. However, I know of others who have benefitted tremendously
from having them done & eliminating those particular foods from their
diets. I personally have benefitted & saved myself a ton of money by
following Dr.
Peter D'Adamo's recommendations in his book, "Eat Right for Your Type"
[the blood type diets]. So IMHO, because you may not benefit from the
ELISA/ACT food allergy tests I'd recommend you try the blood type diet
first. If that doesn't help, try the allergy elimination diet, a trial
& error approach to finding hidden food allergies. [Search the
internet, you'll find something.] Then if all that fails, then go for
the more expensive ELISA/ACT food allergy tests, accupuncture,
chiropractic, naturopathic, etc.
>Flagyl...GF?
Flagyl is not listed in the Stoke's Pharmacy book, "Celiac Sprue - A
Guide Through the Medicine Cabinet." I would assume it contains gluten.
If you have gluten sensitivity, this is not a good drug for you.
#######
I have had the Elisa/Act blood test. It is very expensive about $1000,
but my insurance paid 70% - so be sure to check with your insurance
company.
Dairy showed up to be my main allergy - all cow dairy. Also a few other
things. The wheat did NOT show up since I had been avoiding a long
time...and I finally got diagnosed in May through Dr. Fine's gene test.
My acupuncturist and environmental doc think I have leaky gut also. I'm
just starting to take UltraClear Sustain for that and in two weeks I'm
supposed to add Sea-Cure a protein derivitive or something that heals
the gut. I had the stool test from great smokies diagnostic labs about
3 years ago and candida showed up as +4 which meant it was off the
scale. Now I think they show the results differently, (can't quite
remember) but I had it done early in the year and it showed no growth!!
Last fall my doc gave me a round of nizoral to take and I guess that
cleared it up. Plus I started low dose of cytomel for my thryoid last
year and I've read that if you have an underlying thyroid problem that
you will never get rid of the candida. If you haven't had tests, be
sure to get T3, T4 and all the rest, not just TSH.
#######
3. If you have taken this test, what was the dysbiosis risk index
indicated, and what does in mean in your situation?
######
My dysbiosis was not normal but I can't remember what it was or what I
was supposed to do. I think if you add back good flora and take flax
oil that's supposed to help.
########
There is also this other excellent site:
http://forums.delphi.com/celiac/messages/
with very caring and knowledgeable people to answer questions..
####
So, that's it Folk's! If you have any other comments on this subject,
feel free to send them my way.
Anne in Texas
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