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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
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Hi all-

Recently I wrote about many reactions to liver cleanses, glutathione cream and various meds. When people wrote back sulfur metabolism issues was listed as a possible cause. I have read up on it and I am sure I have this. I recently thought I was having issues with balsamic vinegar because of gluten, but I now only realize it was the sulfites.

I have done many searches and have joined the sulfur yahoo group, but I still have many questions and I would appreciate any help.

1) What kind of doctor is well equipped to treat this with supplements, diet changes etc? My naturopath knew very little.

2) Does Molybdenum help any of you that have this issue? (my blood minerals came back low for molybdenum).

3) What other supplements may help?

4) Could this issue also be responsible for why I am having bad reactions to my thyroid meds?

5) What tests OTHER than the liver enzyme test are helpful in detecting these kind of issues...like sulfur level tests, etc.

Thanks and please share!!!

Nancy

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1) What kind of doctor is well equipped to treat this with supplements, diet changes etc? My naturopath knew very little.

2) Does Molybdenum help any of you that have this issue? (my blood minerals came back low for molybdenum).

3) What other supplements may help?

4) Could this issue also be responsible for why I am having bad reactions to my thyroid meds?

5) What tests OTHER than the liver enzyme test are helpful in detecting these kind of issues...like sulfur level tests, etc.

Nancy,

None of these questions can be easily answered. If you do have a problem with sulfur metabolism it can be quite complex and correcting it would more than likely depend on getting to the root of the problem.

I see in your signature that you have alot of other issues as well? Some of those things may be a factor....chronic infections or heavy metals or other problems which might lead to an imbalance could be causing/contributing to the problems with sulfur metabolism. There could also be a genetic weakness.

I'm working on this problem with one of my Dr.'s. Unfortunately, there is not a ton of research on this and what we do know is from very recent studies involving Autism. The vast majority of autistic kids have problems with the sulfation pathway....a major detox pathway. My Dr. is primarily treating Autism and although they have come a long way in treating this condition....there are still some things that they dont know at this time.

I dont know what types of things you've learned through your own research but some things to look into would be the "sulfur oxidase enzyme"....which is one of three very important enzymes requiring molybdenum as a cofactor. Also "phenol sulfur-transferase (PST)".....this is the enzyme used to process/detox many chemicals including food chemicals (phenols) as well as neurotransmitters and hormones.

Do you know if you have high copper levels? This would be a good place to start as copper is an antagonist of molybdenum and vice versa. High copper can cause a deficiency of molybdenum and a deficiency of molybdenum can inhibit the sulfur oxidase enzyme. If you are unable to convert sulfur to sulfate (because the enzyme is deficient) this could result in a cascade of additional problems with the sulfation pathway. Also, sulfate is necessary for maintaining the integrity of the intestinal lining...so a deficiency of sulfate leads to leaky gut.

The phenol sulfur-transferase (PST) enzyme needs an adequate supply of sulfate to function.

There are urine strip tests that can be ordered to check levels of both sulfites and sulfates in urine (2 seperate tests). High sulfites in the urine indicates that the body is unable to convert to sulfate. When there is a problem metabolising sulfur it can build up to toxic levels which can cause symptoms....there can also be symptoms when consuming any sulfur/sulfites in food as well as supplements.

If you test your copper...make sure its a RBC (red blood cell) test.

I wouldnt expect your naturopath to know much about this (if anything). Its mostly the doctors who are treating autism using biomedical treatments who are figuring this stuff out....and its very complicated. The problems arent limited to Autism but until now there just hasnt been alot of research in this area.

My Dr. is communicating constantly with other doctors across the country...trying to learn everything they can about Autism. The sulfation pathway is where my problems seem to be and this is where we're focusing our attention right now....but like I said...answers dont come easy. Theres alot of kids with the same issues but they are non-verbal which makes it even harder for the doctors. Since I'm able to do my own research and to communicate what is going on with my body we're hoping to learn some things.

Metals can be involved....mercury can damage sulfur metabolism. This might not be the case with me and I'm still being tested for various things.

I have high copper and I'm taking molybdenum but this isnt exactly a "cure" (at least not for me). I also was doing chelation treatments to bring the copper down.

Yeast and other infections are involved somehow (I think). For me yeast has been a big issue.

Are you sensitive to other foods in addition to those containing sulfur/sulfites? If you're sensitive to high phenol foods such as cocoa, milk, apples, red grapes, tomato, mint, spices, food dyes, banana, peanuts, oranges, colored fruits, etc...that would indicate a problem with the PST/sulfation pathway.

I have problems with sulfur as well as all phenolic foods.

Do your thyroid meds contain dyes? Usually the synthetic ones are colored according to doasge. You can request "white" pills...although they only come in certain dosages so you might not be able to get a pill with your exact dose. I take Armour thyroid. I was reacting to my synthetic pills and I suspected the dyes but this was a long time ago...before I knew anything about phenols.

When talking with other doctors and even those practitioners who do "allergy" desensitization treatments (such as NAET) my doctor was shocked at how little they know about phenols and sulfation issues. They really are in the early stages of research as far as this stuff goes.

Its good to educate yourself as much as you can. I have good doctors but they dont know *everything* and they appreciate any "light" that I may be able to shed on all of this.....since noone knows my body better than me. We wouldnt even be looking at the phenol/sulfation issue if I hadnt researched it and brought it their attention.

Some of my Dr.'s use alternative methods of testing such as autonomic response testing (ART), electrodermal screening or applied kinesiology. They can test anything and determine whether or not its a problem. We already were aware that my sulfation pathway was weak because it did show up in the testing they did. They were unsure as to what might be burdening the system. I also tested poorly for phenols many times but no connection was made between the two until I started researching everything and putting those pieces together. When I was recently tested for these issues (ART) it was pretty eveident that the phenols were a huge issue and more than likely the cause of high toxicity in my body.

As far as the 3 enzymes which require molybdenum...the most important in maintaining good health is the sulfur oxidase enzyme.

1. Sulfite oxidase catalyzes the transformation of sulfite to sulfate, a reaction that is necessary for the metabolism of sulfur-containing amino acids (methionine and cysteine).

2. Xanthine oxidase catalyzes the breakdown of nucleotides (precursors to DNA and RNA) to form uric acid, which contributes to the plasma antioxidant capacity of the blood.

3. Aldehyde oxidase and xanthine oxidase catalyze hydroxylation reactions that involve a number of different molecules with similar chemical structures. Xanthine oxidase and aldehyde oxidase also play a role in the metabolism of drugs and toxins

Deficiencies of molybdenum are identified by the absence of the three molybdenum enzymes. The deficiency of this element and the metabolic disorders are accompanied by abnormal excretion of sulfur metabolites, low uric acid concentrations, and elevated hypoxanthine and xanthine excretion.

The indications that I have (with regards to a deficiency of these enzymes) are elevated RBC copper, inability to tolerate sulfur/sulfites, low uric acid and a sensitivity to "aldehydes"....which includes toxins produced by yeast (candida). I'm still being tested for other things.

The low uric acid actually showed up in bloodwork done by my HMO during the first or second year of my illness. The lab reported that the findings had been retested and duplicated....so it wasnt an error. However, every doctor I asked during that time dismissed these results stating that only HIGH uric acid would be of concern...but low uric acid means nothing significant.

In doing my own research a few months back I came accross this info.

Several issues are raised when levels of serum uric acid (a natural antioxidant) are low. It has previously been thought that lower uric acid levels were not associated with any problems but that may not be the case. Low uric acid levels may be associated with a molybdenum deficiency, copper toxicity, and a worsening of multiple sclerosis.

This was what prompted me to test my copper levels...since there was already some indication of high copper in urine tests I'd done.

If you suspect problems with phenols let me know and I'll post some info. as to what I'm doing to try to reduce the toxic load of phenols. Everything I'm currently doing is to "help" the situation but in order to correct it we will have to determine the cause and correct the imbalances that have developed.

Hope this helps.

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Hello, I also have issues with sulfites and have a strong sulfur body odor when I detoxify. The problem got worse when we lived in a house with mold and as you mention, fungi secrete phenols.

I take Glucosamine Sulfite and take Epsom salt baths. I would like to figure out how to eliminate my sulfur body odor.

Thanks!

Edited by Balanced Concepts

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My son is 13 and we have been dealing with his unusual issues for years. By 3rd grade, he was The Hulk, breaking things, punching holes in walls and raging. He had depression, anxiety and panic attacks. His skin would have rashes or turn bright red and i didn't understand why (now i know it's salicylic acid added to conditioner, sunscreen, lotion, ect). We realized that dyes were a problem and cut those out. Little by little, we removed sulfur, sulfites, preservatives, salicylates (aspirin-we assume he will be allergic to this but he has never had it and we won't ever test it, most fruits, spices, veggies and honey), nitrates, soy sauce and many more. He lived on an all home made, special diet and he was better but not well. (We did the Feingold and Failsafe Diet but that wasn't enough). He was diagnosed with hypersensitivity to medication by 5th grade (tried anti-anxiety meds-big mistake). Consecutive doses of anything would get stuck in his body and then the real fun started, full body rash, suicidal thoughts, vomiting and my least favorite-hallucinations. He was in the ER for a fall from a tree and they gave ibuprofen and Vicodin. Within 30 minutes the rash spread up and down his whole body (including under the damn cast). The worst night of my life was trying to keep him from breaking his own cast off and talking him down from trying to hurt himself.                                                                                                                                                                                                                                                             We tested my son for everything and anything, hormones, vitamin deficiency (later found out they don't test for nearly enough to really know) and thyroid. Everything was normal but a mildly low vitamin D level. He was very unhealthy, he was sick a LOT, allergies were bad, asthma and he developed food intolerances out of nowhere. We did a gluten/dairy free diet (because his sister is gluten/dairy free) but it made no difference and his diet was already so restricted. We did a year long food journal and also found an issue with pork, apples, citrus fruit, cinnamon, ect. 

I researched my kid like it was my job. We tried many vitamins and supplements and he had bad reactions to many of them. I finally found a man with several of the same gene mutations (we tested with 23andme.com) who's Dr. thought it was a PST-Pathway issue. We decided to try the protocol of vitamins, supplements and amino acids to see if it made any difference and OMG, what a difference. At this point, we didn't have a pediatrician that actually listened so I asked several doctors about the specific vitamin/minerals/amino acids and kept all the does to a child size dose. 

We had always used epsom salts as a response to a reaction in something, not as a preventative measure. We now soak his feet twice a day in Epsom salt water (or in the bath), it gives him a form of sulfur that his body was missing and now he can eat anything he wants (except soy sauce but we'll gladly leave that out). He takes molybdenum everyday with magnesium/calcium and vitamin D3 (and when we stop that, panic attacks come back. Weekly he takes milk thistle (we tried L-Glycine but too much gave him terrible insomnia (like 3 days of barely any sleep) and milk thistle works just as well to keep his liver open and working it's best), B vitamins, Cod liver oil capsules with Vitamins A and D and liquid Zinc. 

His personality changed on the L-Glycine in a more outgoing way but then in a manic, not himself way so that scared us. Since the supplements started (6 months ago), his anxiety and depression is gone (and it was really controlling how we lived). He would never talk to people before...he was diagnosed with selective mutism but we felt that was incorrect and he was just very shy. He never liked talking with adults. Now, there is no problem, he is not super chatty with everyone but all he adults in our family noticed immediately. He is ready to stop home schooling and start high school next year. He has become a responsible, sweet, calm and caring child. No more daily fights, no more holes in the walls, no more rage. Our daughter has anorexia and we have been very busy dealing with her behaviors and missed the daily vitamins on occasion for several days....old son comes raging back. It doesn't take too long to figure out the mistake and gets him back where he needs to be.

We did some genetic testing with a neurologist who specializes in metabolic function and while he tested for some helpful issues relating to hypersensitivity to medication, I still got the impression that he thought it was a placebo effect. We have burned through many therapists, pediatricians, a neuropsychologist, a psychiatrist, a gastroenterologist and possibly this neurologist. I hate not being taken seriously because while they may not agree with my ideas, they have nothing to offer in return.

  

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To Grace ,

Thank you so much for sharing your story here.

I have an infant that struggles with salicylate sensitivity and seems to have a problem with sulfates. 

I’ve started the Epsom salt baths and  I think MSM is helping, and I want to try Molybdenum. There is supposed to be an organic variety from of Molybdenum from Biotic Mo-zyme forte that I want to try (even though I have Molybdenum I know hyper responders like my infant might do better on that form?)

Did you ever try MSM with your son?

which Molybdenum have you found works for you?

have you done any probiotics that actually help? I know we have yeast overgrowth, but I am now learning that the gut has to be ready to invite the good bugs in if I want to see any progress. I’m nursing my child and can only consume certain foods and supplements at once, (or it becomes overwhelming for her system). 

Like you I’m experimenting with Failsafe and Feingold Diet and all that, but I KNEW there had to be another way!! I’m so so encouraged by what you’ve written here. I’ve officially told myself no more practitioners until I get on the right path and get us able to get more nutrients in!! I’m so happy for your son.

i understand how practitioners might not offer anything -because they haven’t been trained in that area-and good for you for going with your own gut. 

My goal is to balance out my gut and my child’s gut to not have to depend on supplements to heavily in the future, but for now just by presenting your situation you’ve greatly inspired and encouraged me.

i have vit D, Cal/Mag, Milk Thistle.. these are all personal discoveries I’ve made based off symptoms .. as to what we are lacking. I know I have a uric acid deficiency and a vit D deficiency and gut imbalance underlying everything.

 

our biggest symptom right now is a facial rash with the infant that doesn’t want to go away, hair loss, and if the chemical/phenols get too built up, vomiting and constipation. 

We want to prevent further reactions and you’ve helped tons. 

 

-raquel

 

 

 

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