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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Homeopathic Remedies.... Having Big Time Cognitive Dissonance

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I haven't been on for a while, but I wanted to throw a topic out and hear your thoughts.


I am, in general, a rationalist. I believe in science and evidence - but I also know there are things we don't understand yet and I'm open to that. For example, I feel better after acupuncture. I don't know that it's for the same reasons my acupuncturist says it is... but it seems to work, so I go sometimes. I don't want to bring religion or politics in to the discussion, but lets just say I require supporting evidence. 


I have come to distrust most MDs. I've had terrible experience upon terrible experience with doctors who know less about my conditions (Celiac, complex migraine, others) than I do. I have been in the driver's seat with my doc, doing the research myself and asking for tests. It's been working, but I've hit a health plateau. 


After a year on the GAPS diet, I'm much better... but still no where near 100%. My condition has now been dubbed Chronic Fatigue Syndrome. I have debilitating fatigue, and neuro symptoms have increased. It does not appear to be MS or Lupus or Fibro (but lots of overlapping symptoms at this point). I've had MRIs, blood work, thyroid...all the tests that are recommended. Only abnormalities: low iron/ferratin (old problem) and *slightly* low on one of the white blood cell types. Vit D is "normal", but low for where I want it. 


One of my friends had an amazing experience healing with a Doctor of Osteopathy about an hour away. I got on the waiting list, and have now seen her 3 times. 


The good things: 


-She has re-aligned by body and cured 85% of the physical issues (pain, mobility) that I've been working with physical therapists and chiropractors for years

-She seems to really "get" the gut thing and has me on a slightly modified version of GAPS. Still grain-free, big on probiotics. I trust her nutrition and diet advice. It is aligned with what I've read and experienced. Although I get to eat a potato once in a while now. YAY.

-She has me on some natural supplements that have increased my energy slightly. 

-She seems very optimistic that I can recover 100%


The sketchy things that really make my eyes cross (and the reason for my post):


-She did live blood testing - which I found truly fascinating. I loved being able to see my cells and other *stuff* in my blood. However - quack watch and other sites say it's BS. She pointed to some groupings of cells that did NOT look like the lovely red blood cells or goofy white cells you see in pictures and told me I have "mycoplasma". I've spent some time researching that and have mixed feelings. 

-She used this other crazy machine (even she admitted it was crazy sounding)  - EAV testing. Also huge red flags/quackery on quack watch. BUT - the machine flipped out in two specific places and I don't have an answer for that. She let me play with it a little and answered the questions I hurled at her.

-She uses homeopathic remedies - I just started taking them. I DON'T BELIEVE they will work. But I'm taking them anyway (!!!) because: 1)  my friend got better under the care of this doc 2) no negative side effects that I know of (unlike most pharmaceuticals - I've had awful experiences) 3) I have no idea what the #*!! else to try. At this point, I'm ready to hike a volcano, burn effigies, witchcraft, voodoo, medicine man, pray to every god created...because I don't know what else to do! I've spent THOUSANDS of hours researching and trying to get healthy. I will not give up.


A note about these specific homeopathic remedies. They are low (?) dilutions - some have been diluted to only 1:100 or 1:1000 .... so it's not like the grain of salt in a swimming pool that some are.




-She also said she thinks I have Coxsackie virus (that is chronic/never cleared). When I first got sick pre-diagnosis, I had a nasty illness that hit me hard. I missed a month of work. It wouldn't surprise me if there was SOMETHING like that wrong with me (the way Lyme Disease or Epstein-Barr hits some). No one has been able to figure it out.


Thoughts? Anyone have any GOOD experiences with alternative/complementary medicine/doctors? I'm sure some of you will want to wave your BS flag - and that's fine, too... but I would love to hear if anyone has positive stories. 

Thanks for reading this far! =)

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Hi there, K !

I remember you and wondered how you have been doing. :)


Like you, I have tried EVERYTHING under the sun ( and even some weird stuff like "rolfing") to get well and achieve more mobility and reduce the horrid musculoskeletal pain. It has taken me almost 2.5 years, but I have started working out at the gym again (first time in years!) , but I had PT and MT 2X a week for this entire time to get me to this point. .Now, I have a massage and a chiropractic adjustment weekly to keep me limber and I am progressing slowly, but steadily. 


Sorry, kiddo, I'll cut to the chase. I do not buy this "live blood cell" malarkey. Quackery.


"An attorney for the state Board of Examiners in Chiropractic Medicine described the test as as "useless" and a "money-making scheme " A state medical board official said that the test has no discernible value and the public should be very suspicious of any practitioner who offers it  Edzard Ernst, M.D., Ph.D., a professor of Complementary Medicine at the University of Exeter, summed up the situation in an article in the British Guardian:


Seeing one's own blood cells on a video screen is, admittedly, a powerful experience. It gives patients the impression of hi-tech, cutting edge science combined with holistic care. And impressed patients are ready to part with a lot of money. American websites explain how a practitioner can make $100,000 (£57,000) annually by purchasing the equipment necessary for performing LBA. The bulk of this money is made not through charging for the test itself but by selling expensive nutritional supplements to the patient with the promise that these will correct whatever abnormality has been diagnosed.

In other words, patients are potentially cheated three times over. First, you are diagnosed with a "condition" you don't have; then a lengthy and expensive treatment ensues; and finally the bogus test is repeated and you are declared "improved" or "back to normal." [13] 




No credible scientific studies have demonstrated the reliability of LBA for detecting any  conditions


And sorry, but  I do not find homeopathy useful for our issues either..


You may recall my story, but I spent a small fortune on all that crap and the bottom line is: it did nothing for me.

Acupuncture, osteo manipulation, massage--these are all proven therapeutic modalities 

I do take collagen supplements, cal/mag/D, amino acids, probtioics and omega3/6. They all help


If you want to give the "undas" etc (those homeopathic remedies ) a try, I do not blame you one bit. But IMHO, they are not effective for the treatment of musculoskeletal pain that has resulted from long unDXed celiac.


And finally, the Coxsackie virus occurs most often in small children in communities and day care centers, (places like that ) and spreads like wildfire.One such outbreak affected hundreds and killed 22 children in China once.

Dr. Gilbert Dalldorf, a scientist working at the New York State Department of Health first took fecal samples that led to his discovery of the virus.

He was conducting experiments (trying to find the cure for polio), but instead, he discovered other viruses that often mimicked mild or nonparalytic polio. The virus was eventually given the name Coxsackie, for the town in New York, not very far from me. 


The chances that you contracted that (and did not know about it at the time) are highly unlikely because there would have been an outbreak and it would have been on the news.  It goes away and does not "linger" in the body for years. You would have had big sores on your hands and feet or your lungs and other organs would have been deeply affected.


No one has been able to figure out the viruses I had at times during my life either. I had the Lyme test done about 5 times before a

infectious disease doctor finally said to me," It's not Lyme. Your symptoms sure do mimic it. but I think it's the damage from the celiac" .

This is the same thing 2 neurologists and a spine specialistssaid to me too. They urged me to be patient while I heal and things would get better.


So far, they have been correct. Am I "all better and pain free?" Nope, not yet, but it's so much better. I never stop believing I will achieve optimal health.


I do have a histamine intolerance (high histamine in various foods will trigger muscle, joint and nerve pain and other symptoms that mimic a "glutening" ) and reducing the level of histamine I ingest has also led to more symptom relief.


I wish you all the best. I understand how frustrating it is to be in pain and ask "why? what is causing  it?" and have medical pros look at you and say "I don't know". :mellow:

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As far as homeopathy goes, yes, I've used some homeopathic allergy pills and they work reasonably well during some allergy attacks. If pharmaceuticals seem to be overkill, there's no reason not to try homeopathics; however, I urge you not to consider them harmless even at a strong dilution.

As far as the other stuff goes, I have no idea. I do know healing takes time and we each respond differently. What works for me may not work for you, etc.

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I never consider anything I put in my body harmless. A recent enlightenment has simply reinforced this for me. With celiac it takes the grain of sand in a swimming pool to set off the autoimmune reaction from gluten. I have issues, like you do, with intolerances to foods. Seemingly healthy foods, that leave me a complete train wreck. If things that are generally considered healthy can turn out to be harming us, how can anything ever be generally considered harmless to put in our bodies? Everything is suspect.

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Hey Irish! Nice to hear from you. :)

Glad to hear you're doing a bit better.

Yeah, I've read all of that about the live blood tests, etc.

It's frustrating, because I really like the other stuff this lady is doing (body work, supplements, nutrition, appropriate exercise program). I told her up front I didn't believe in the stuff. Ha. I wonder if she'll work with me on my terms... Like let me pick and choose the part of treatment I want. It's just hard to know which parts to trust when she's done such a good job with half of the treatment, but lives in looney land part of the time.

I still think she's more sane than at least 90% of the MDs I've seen. o.O

There are some AMAZING controversies in the chronic fatigue community. But, so many people have been through similar journeys (Many doctors, "it's all in your head").

By the way, while I'm obviously far from better, I am now working 2-3 hrs most days and prepping 80% of my own food, driving, AND from time to time am able to put in full long day of activity (as long as I can prepare/recover). Trying to have balance and not over-do (too often!).

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Wow, you're doing a LOT better than when we last talked! Major kudos!


And I am about 75- 80% to where I'd like to be, so I remain hopeful for full recovery. If you could see me today from where I was

2 years ago, the difference is drastic. I went from immobile little old lady to ....Riding a couple of dolphins last month in Key Largo.


The thing is, unless there is absolutely something organic and new going on, I suspect it's just plain old celiac damage.


Keep the stuff that helps you, and dump the rest, IMHO. If she is helping you, then take it. I just do not believe in quackery.


Hang in there. Tough times don't last. Tough people do! ;)

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I don't know much about the tests you listed, but I have had so e positive results with homeopathic remedies...when it is the right remedy that is. If you are taking the wrong remedy, it can actually induce the symptom it would improve in others. There are not many remedies that i take on my own except for arnica or to treat a virus - i've had great success with that. Often, the more diluted the remedy the better it works for me and others.

I try to keep a open mind to try things if it doesn't look like too much quackery, and is not too expensive. Acupuncture was considered quackery just thirty years ago(where I live) so I think given time, it is possible that some of what your osteopath is suggesting will become accepted as medically correct...maybe. lol. It is so hard to say.:)

Best wishes to you.

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"There is some evidence to show that homeopathic medicines may have helpful effects."


(that is from "webMD" --a site that usually pooh-poohs this kind of thing) so they are being very "enlightened" :) 


My experience with homeopathy, a naturopath and an "alternative med doc" (for 2 years) proved useless for me and as always, I offered my thoughts IMHO. 


I wish I had all the $$$$ back I spent on things that did not work. I would have a new car... and then some.


Acupuncture has more science behind it.


"In a review of 29 previous well-designed studies, which together looked at almost 18,000 patients, researchers at Memorial Sloan-Kettering Cancer Center found that acupuncture does, indeed, work for treating four chronic pain conditions: back and neck pain, osteoarthritis, chronic headache and shoulder pain."


I agree with you, Nicole- "-It's hard to say." I only know what has worked or did not work for me.

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I have had great experience with chiropractic care.  My chiropractor saved my life.  To mention briefly, I had high blood pressure which dive bombed when I stood up.  This is a very dangerous situation; I verified that on the internet.  I received supplements that brought my blood pressure to a normal curve.


I also am using an osteopathic doctor for my son.  He recovered from a parasite infestation that damaged his villi.  We used supplements and medicine and he is a healthy growing boy.  He is currently singing in the kitchen!


 I am using a nurse practitioner, trained in Functional Medicine, that works with the Osteopathic doctor.  I just started with That.  They helped me know what to do with my food intolerance results, and it seems to be working.  I received an herb to help support my adrenal glands.  I could tell it had an effect!  They can check on my nutrient levels, which my MD would not do.


I could describe what constructive things that MD's have done for me, but I can't think of anything just now.  Wait, she helped with diagnosing various ailments.


I also use aromatherapy, herbs, and Organic natural food diet.  I have also successfully used homeopathics on occasions. I used a poison ivy remedy and one for trauma after mouth surgeries.   The diet (well balanced) can't hurt anyone.  The other things are used with respect and careful discretion.  They are powerful.

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Homeopathy means that things are diluted like a molecule in a swimming pool, or even worse, like you said.  There are things that say homeopathy on the label that actually contain stuff.  There is a zinc cough drop that says homeopathic that I used to take.  My iodine supplement says homeopathic on it, but it contains the daily requirement of iodine in a drop.  That gray area can cause people to think that homeopathic remedies work.  As a chemistry with many years of study about molecules and their effects I can't believe in the essence left behind stuff.  There is also the placebo effect.  


I felt much better after going to the chiropractor after throwing out my back.  He was really good and unfortunately retired and I never did find another one who was as good.  I think that it may have been more the massage effect and those soothing heat lamps than anything else, but it did feel great.  He didn't try to convince me about that mumble jumble stuff like some others have.


This gluten intolerance stuff is poorly understood and so many doctors listen to our stories and laugh at us or think that it is all in our heads.  That opens us up to anyone who will try to help.  Some people offer expensive tests and supplements that don't work.  Some of these things might work.  It is really nice to be taken seriously.  It's worth some money just for that.  How can we tell the difference between effective treatment and a rip off?  I think that there are many well meaning people out there who think that they can help who really have nothing effective to offer.  We get pretty desperate to do something to improve our health.


I try to read studies and make sure that there is scientific evidence for things before I spend my money on them.  It is important to look at the size of the study.  Look at who did the study and if they used control groups.  Sometimes you can find someone who has analyzed the area and blogged about it.  There is a nice "Science Based Medicine" site that I have read.  They talk about how often there are very small studies that seem to show an effect, but when they are done on a larger scale with control groups and everything, the effect no longer is evident.  These latter studies don't often get the media hype that the first ones do.  Then the supplements are still able to say that they have scientific studies that support their efficacy. I try to be objective about whether they are working or not.  


It is difficult and we each need to make the best decisions that we can.  Good luck to you.

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That Science Based Med website is a good resource, IMHO and I like to read their articles. There is no question, however that they are biased in their opinions.


They are a bit rough on chiropractors, I think. They dismiss their validity, but the one I see has really helped me with my very bad back and neck issues (but he does not  pretend to "practice medicine" as he says it is not what he was trained to do) No other doctor could do a thing for me, not even a spine specialist (telling me I had to live with the degeneration and nerve compression and take drugs). Pain meds were useless.


Like all things, there are good chiros and bad chiros.

Good medical doctors, bad ones.

Good naturopaths, and total quacks.


Choose wisely.

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I've enjoyed reading all of your thoughts. Some really weird shifts happening in my body now... Some good, some not so good. Cutting doses in half. People have been telling me I look really good, so that's a nice change.

The numbness/neuropathy I've been dealing with lately has been the most disconcerting. MD's just want to run another MRI. The body is a pretty crazy "machine". I do enjoy learning how it all works. Too bad I'm not getting paid for that. ;-)

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So, I stopped all of the supplements and remedies after having severe numbness in the right side of my body for days. It took about 5 days off of everything for it to go away. I will continue to see her for body adjustments since I've had FANTASTIC results from that. I'll need to do some more personal research to decide which supplements I'd like to try again.


Meanwhile, I'm looking into expanding my nutrient rich diet. (I just posted about the Wahls Protocol - check it out!)

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