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Weight Loss


gfreemomthecook

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gfreemomthecook Newbie

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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Ahorsesoul Enthusiast

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.

YoloGx Rookie

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

sandsurfgirl Collaborator

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

Open Original Shared Link

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. (Open Original Shared Link 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.

YoloGx Rookie

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

Open Original Shared Link

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. (Open Original Shared Link 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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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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