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InterestsDiagnosed (by various doctors) with: IBS, narcolepsy, sleep apnea, asthma, depression, acid reflux, hemorrhiods, fibromyalgia, adenomyosis, and being a total pain in the ass.<br /><br />One GI diagnosed me with Ulcerative Colitis (after a colonoscopy), but two other GIs did subsequent colonoscopies and said they were normal.<br /><br />Positive tissue transglutaminase test 2003 (but the doctor just told me about it in August 2005), but since the biopsy was normal, he says I don't have CD.<br /><br />sons<br />Charlie, 5, probable CD<br />Jack, 9, Asperger's Syndrome, possible CD <br /><br />Hernia repair, 2000; Total Abdominal Hysterectomy, June 2005<br /><br />GF since early August, 2005
"So for me, gambling some money on some well-researched or doctor-recommended unproven treatment that won't hurt me, but might help me feel better is a well-placed bet. You win some and you lose some. But if it won't hurt then why the heck not?
Well, maybe I shouldn't have spoken up because I'm new, but this, on a board for a disease that some doctors don't even believe exists, really, really irked me."
I just want to address a few of my concerns about that point of view. It certainly is NOT personal, in fact, I find it enriching to discuss these things with the object of finding the most defensible position.
Nancy, when you suggest that this program is "well-researched," I tend to be skeptical. Show me the studies. My point was that a program like this is NOT well-researched unless it has been studied in a double-blind clinical setting with reproducible results. If you are wealthy enough not to be concerned about gambling your money, congratulations. But do you want that money to enrich a dishonest, unethical huckster who takes advantage of the chronically ill for personal gain? And who are these doctors who recommend these treatments? If you ask them about the clinical studies, do they squirm and shift their eyes? What do their collegues think of them?
Regarding the statement, "a disease that some doctors don't even believe exists," I have never heard of a doctor who doesn't believe celiac disease exists. I find that hard to believe. Exaggerrations of that sort don't support your argument. Just because there are doctors who underdiagnose celiac disease does not mean that the entire profession is corrupt or worthless.
In conclusion, I would suggest that it is a widely-held misconception that alternative therapies are "harmless at worst and helpful at best." If there is a lack of conclusive evidence that a therapy works, then anyone selling it is a criminal and anyone buying it is a victim. The time spent in pursuing these therapies is better spent researching medical journals or resting quietly in bed. If the money is disposible to you, then give it to charity rather than to those who would rob us of our health.
Here's a good article on the subject, which lists LEAP testing specifically as a dubious claim. It is also listed as "investigative" on Blue Cross's policy manual (just curious: did your insurance pay for these tests?).
Stephen Barrett, MD
I repeat my assertion,
It would seem that in order to design a truly blind clinical study, there would need to be three test groups. One would be a control group that did not change anything. Another would be the test group, which would follow the LEAP Program. A third, and most important group, would be given all the tests, given a list of ingredients that were forbidden, but they would have been produced randomly. That way this "placebo group" would believe they were on the LEAP Program. The physicians, patients, and all other staff would have to be blind as to who was on the "real" program and who was on the "placebo" program. If this trial were done with a large enough group of people and were replicated successfully, then a significant positive result for the Leap group over the placebo group would be meaningful.
Where is the hole in this logic? Perhaps you could ask your GI if he has results of clinical studies that were performed in a responsible manner. Opinions are for hairstyles and draperies, not health care.
We with unremitting symptoms are quite vulnerable to dubious claims. I do not know if this program is legitimate, but it certainly has a list of creditialed physicians on board. I do not, however, see a lot of clinical studies that support it. There are testimonials galore, but you can find testimonials for just about anything out there, from snake oil to drinking Drano!
It would seem that in order to design a truly blind clinical study, there would need to be three test groups. One would be a control group that did not change anything. Another would be the test group, which would follow the LEAP Program. A third, and most important group, would be given all the tests, given a list of ingredients that were forbidden, but they would have been produced randomly. That way this "placebo group" would believe they were on the LEAP Program. The physicians, patients, and all other staff would have to be blind as to who was on the "real" program and who was on the "placebo" program. If this trial were done with a large enough group of people and were replicated successfully, then a significant positive result for the Leap group over the placebo group would be meaningful. I see no evidence that such testing was done. I would no more spend my time or money on such an untested "cure" than I would spend it on sending Madonna to Mars.
No matter how desperate your physical situation is, don't let yourself be taken in. Insist on clinical trials and published studies in reputable medical journals!
I've read a lot of your posts and respect your opinion; it's hard to believe you're only 15!
Regarding your malrotated intestines, I had a doctor diagnose me with volvulus of the splenic large intestine once. He didn't suggest that there should be anything done about it, though. From what I understand from reading and from other doctors, that is a medical emergency that causes vomiting, fever, and acute symptoms. My symptoms are chronic and have occurred over many years. I'm quite confused about that subject.
You probably have suffered a lot over the years. In the last few months, I've lost my job, had a hysterectomy, and my husband left me. He couldn't stand my being sick anymore. I thought that I would get better on this diet, but I can't look for work now. I can barely tend to the children. I see no hope, but probably wouldn't really kill myself.
I think it's been almost a month since I went gluten-free. I had a positive tissue transglutaminase antibody test, but a normal biopsy. So my GI sent me a letter saying he personally did not believe I have celiac disease, but that it wouldn't hurt to try the diet. I have been vigilant about avoiding gluten. However, my family doctor did a blood test last week and the tTG and IGA and other tests were all normal. He said that doesn't mean that I don't have it, since I did have the positive test before.
But besides those negative test results, I'm still sick as hell. I have severe diarrhea and abdominal pain & distention. I sleep all the time and feel dizzy. This diet is not working. So maybe the GI was right, and this is just garden-variety IBS. If that's the case, I can't do a thing about it and am considering suicide.
I want you to know you're not alone. I also have narcolepsy and celiac disease. When my pain and diarrhea are bad, I will sleep through the entire day. Sometimes I have to drive in the morning, and I am terrified I will fall asleep. I take Provigil, but it hasn't helped me much. Coffee makes it worse because it exacerbates the diarrhea. I just hope that after a longer period of time gluten-free, these symptoms will abate. Maybe that will be the case for you, too.
chicken breasts or fish fillets, dipped in beaten egg, rolled in a mixture of cornflake crumbs and nut meal (almond or walnut is available at Trader Joe's) with salt, pepper, and spices. Fry it till it's golden brown and drain on paper towels. Takes about 20 minutes from start to finish. Serve with veggies, salad, or mashed potatoes. The kids love it.
If you overcook any cheese, it separates into clumps with liquid. There's no saving it once it gets to that point. Cheese must be gently melted, usually with some milk added, on low heat or just on top of hot pasta.