<<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