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gfreemomthecook

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This is my first time ever writing anything but an email on the internet! I think I am desperate and I hope someone out there can help me understand my son's situation better. We finally have diagnosis (positive for Celiac 6 weeks ago) and he is still losing weight on the gluten free diet. Is that common? He also has mercury toxicity that is being chelated with IV therapy with our naturepath. He was a bit better, then really weak and breathless again today. Do you recover over time with good days and bad days, or should he not be experiencing any backwards steps? I want to remain upbeat and hopeful, but I think I am scared by his weight loss and his inability to be back into life. Any advice from experience? Thanks!

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Just how gluten free is his diet? Have you checked all his medications, his toothpaste, shampoo and everything he eats and drinks. Are you making sure his food is cooked in gluten free pans, doesn't use a toaster that has had glutened bread in it? Does he have his own peanut butter and jelly or is he getting contaminated with other gluten food? Is his food fixed with a gluten free bread board and plastic ware? Does he cheat at school (if school age)? Is he off dairy and soy until his intestines heal? Are you keeping a food/symptom journal to see if he had other food sensitivities?

My dd was having problems and I thought she was cheating. Then I found out the root beer she was drinking had gluten in it. Who knew? Why would anyone put gluten in root beer. Never thought. So it hides in funny places you wouldn't even thing to look.

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This is my first time ever writing anything but an email on the internet! I think I am desperate and I hope someone out there can help me understand my son's situation better. We finally have diagnosis (positive for Celiac 6 weeks ago) and he is still losing weight on the gluten free diet. Is that common? He also has mercury toxicity that is being chelated with IV therapy with our naturepath. He was a bit better, then really weak and breathless again today. Do you recover over time with good days and bad days, or should he not be experiencing any backwards steps? I want to remain upbeat and hopeful, but I think I am scared by his weight loss and his inability to be back into life. Any advice from experience? Thanks!

Its quite a lot to go through both going off all gluten and doing mercury poisoning chelation at the same time. You might want to slow down the detox/chelation for a little while just to normalize your son's system. If its totally wiping your son out then I think it may be too much. It really might be wise to slow down the process. He has after all the rest of his life to do it. The chelation should nearly always be done very gradually--with a person who is strong enough to do it. It stirs up the mercury so it tends to wipe a person out. Slow and gradual is thus the key word.

Also make sure the chelation method(s) isn't adding to any hidden glutening. I had a doctor who gave me all this detox stuff that had hidden gluten in it. He thought I was "just too sensitive"!! But in retrospect its obvious what the problem was. Thus make sure any pills your son is taking have no hidden gluten in them. Avoid Standard Brands especially!! Similarly avoid anything with an alcohol base--including most homeopathics.

Mud packs of the hands and feet are a good adjunct to the detoxification. They sell food grade bentonite or French or Indian clay that is excellent for this. Same with saunas and exercise once he is strong enough to handle them. If the toxins go out through the skin its less hard on the overtaxed liver etc.

Make sure too he is eating a ton of organic veggies (and/or blended/or juiced)plus is avoiding all sugars etc. Detox herbs like dandelion root and cleavers (if he can tolerate them!) are also good adjuncts to help clean out out the liver, kidneys and lymphatic system during this process. Slow and gradual again is key.

The main thing however in my opinion and experience is that its important to establish new habits being gluten free before really going on mercury chelation therapy. Otherwise your son will likely a basket case. This happened to me -- and I wouldn't suggest it for anyone. I was so much better when I went off detoxing until after I had firmly established myself as entirely gluten free. Meanwhile diet, herbs, exercise, and eventually mud packs and saunas are a gentle and in my opinion good things to do in preparation before doing the mercury chelation therapy.

Bea

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Here is an article about some of the dangers of chelation therapy.

http://autism.about.com/od/treatmentoptions/a/notchelate_2.htm

I cut and pasted this from the article.

Hair analysis is not recommended for biomonitoring, because false elevations may occur if the specimen is not carefully collected. Provocative chelation tests for mercury have not been scientifically validated and are also not recommended. Several chelating agents, including succimer, dimercaprol, d-penicillamine, and N-acetylcysteine, have been shown to accelerate mercury elimination from the body. However, there is no evidence that chelation therapy will improve developmental function when given to treat mercury toxicosis. Moreover, chelating agents can have significant toxicity (e.g., hepatotoxicity) and precipitate allergic reaction.

"Because chelation therapy has potentially serious risks, the committee recommends that it be used only in carefully-controlled research settings with appropriate oversight by Institutional Review Boards protecting the interests of the children who participate."

There have been at least two recorded deaths in children during intravenous chelation. (http://www.post-gazette.com/pg/05237/559756.stm; Philadelphia Enquirer 3/3/06, A20)

This is just one article and I can't vouch for the author, but since your son is getting so sick it is something to consider. In my experience, natural medicine doctors can be just as misinformed as the MD's can and sometimes their ego and their strong belief in what they are doing will lead them to continue treatment that isn't beneficial. I've had some wonderful natural medicine practitioners and am a big believer, but what I'm trying to say is just because a Naturopath or Acupuncturist or whatever says it's a good idea, doesn't necessarily mean it is or that it's not dangerous.

Heck, I had an anaphylactic reaction to the vitamins that my acupuncturist sold me because I didn't know I was allergic to royal jelly, something "natural" that is supposed to have numerous health benefits.

Those of us with celiac are so sick from a food source, so approach natural medicine and natural doctors the same way you would your M.D. They are ALL just practicing medicine.

I hope he gets better soon and you find support and help here. Online communities can be so wonderful.

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Here is an article about some of the dangers of chelation therapy.

http://autism.about.com/od/treatmentoptions/a/notchelate_2.htm

I cut and pasted this from the article.

Hair analysis is not recommended for biomonitoring, because false elevations may occur if the specimen is not carefully collected. Provocative chelation tests for mercury have not been scientifically validated and are also not recommended. Several chelating agents, including succimer, dimercaprol, d-penicillamine, and N-acetylcysteine, have been shown to accelerate mercury elimination from the body. However, there is no evidence that chelation therapy will improve developmental function when given to treat mercury toxicosis. Moreover, chelating agents can have significant toxicity (e.g., hepatotoxicity) and precipitate allergic reaction.

"Because chelation therapy has potentially serious risks, the committee recommends that it be used only in carefully-controlled research settings with appropriate oversight by Institutional Review Boards protecting the interests of the children who participate."

There have been at least two recorded deaths in children during intravenous chelation. (http://www.post-gazette.com/pg/05237/559756.stm; Philadelphia Enquirer 3/3/06, A20)

This is just one article and I can't vouch for the author, but since your son is getting so sick it is something to consider. In my experience, natural medicine doctors can be just as misinformed as the MD's can and sometimes their ego and their strong belief in what they are doing will lead them to continue treatment that isn't beneficial. I've had some wonderful natural medicine practitioners and am a big believer, but what I'm trying to say is just because a Naturopath or Acupuncturist or whatever says it's a good idea, doesn't necessarily mean it is or that it's not dangerous.

Heck, I had an anaphylactic reaction to the vitamins that my acupuncturist sold me because I didn't know I was allergic to royal jelly, something "natural" that is supposed to have numerous health benefits.

Those of us with celiac are so sick from a food source, so approach natural medicine and natural doctors the same way you would your M.D. They are ALL just practicing medicine.

I hope he gets better soon and you find support and help here. Online communities can be so wonderful.

Well said!

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