Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Heavy Metals Testing - How To Do It Right?

Seeking2012

Recommended Posts

GFinDC Veteran
GFinDC
Posted

Hi Seeking,

 

I wanted to offer a reason the heavy metal theory may not make sense for a cause of celiac disease.  There are certain genes associated with celiac disease, and the people with those genes are the ones who tend to get develop celiac disease.  Other people don't get it.  Heavy metals wouldn't discriminate based on people's genes right?  There would be people without celiac genes having heavy metal loads also.  Yet there aren't lots of cases of people without the celiac genes devloping celiac disease.  So it seems like a link between heavy metals as a cause is not likely IMHO.  Just a thot, or another way to think of it.  I hope it helps.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

That isn't a valid explanation, in my opinion, GFinDC because you could just counter with "it only affects those who have the propensity to develop the disease."  The best reason is that there is no evidence.  There are many things that we have increased exposure to that could be a contributing factor with celiac disease.  What has increased in recent years: computer use, the use of cell phones, more exposure to power lines, more exposure to homone mimicers in plastics, more exposure to car exhaust, more particulate matter in the atmosphere, more use of pesticides such as round up.  The thing is that correlation does not equal causation.  To link one of these things as a cause we need actual evidence.

 

The study quoted for evidence above was not of a large number of celiac patients, it was for a small number of people with other medical conditions.

U Gluten Free Rookie
U Gluten Free
Posted

@seeking2012 — Heavy metal poisoning is increasingly rare. Decades ago, lead in paint and gasoline were a major issue. Unless you have a particular reason to think you have been exposed, I suspect that your CFS has some other cause.

 

Some "alternative" practitioners try to promote the myth that this is common, but I recommend that you work with a qualified physician. Likewise, supposed "detox" methods can be dangerous, so you need to work with a pro. I recently was told about a kid whose parents subjected him to a "detox" program. In my opinion, this was unethical medical research on a child who is not old enough to offer informed consent.

Seeking2012 Contributor
Seeking2012
Posted
  • Author

@seeking2012 — Heavy metal poisoning is increasingly rare. Decades ago, lead in paint and gasoline were a major issue. Unless you have a particular reason to think you have been exposed, I suspect that your CFS has some other cause.

 

Some "alternative" practitioners try to promote the myth that this is common, but I recommend that you work with a qualified physician. Likewise, supposed "detox" methods can be dangerous, so you need to work with a pro. I recently was told about a kid whose parents subjected him to a "detox" program. In my opinion, this was unethical medical research on a child who is not old enough to offer informed consent.

 

I am interested in any logical, scientific explanation--especially conclusive testing--that can explain CFS. I wonder what, in your mind, consitutes a "qualified" physician?

 

I read on your profile on a certain website that "Peter spent most of his career developing novel therapies for diseases in fields including autoimmunity, allergy, and cancer." I wonder what you have discovered during your career that could be a cause for autoimmunity, allergy and cancer, but especially the former. I didn't find anything written by you on Pubmed.

 

You come to this forum and immediately dismiss what I have said. You didn't indicate that you read anything about the subject on Pubmed, so I'm going to assume that you have not. And then you fail to offer any alternative ideas about the causes of autoimmune diseases and CFS. I'm not interested in dismissals. I wonder who called you over here to the forum to attempt to silence me, to make me give up, go home, and say "ho-hum I'll just think about something else now."

kareng Grand Master
kareng
Posted

I am interested in any logical, scientific explanation--especially conclusive testing--that can explain CFS. I wonder what, in your mind, consitutes a "qualified" physician?

 

I read on your profile on a certain website that "Peter spent most of his career developing novel therapies for diseases in fields including autoimmunity, allergy, and cancer." I wonder what you have discovered during your career that could be a cause for autoimmunity, allergy and cancer, but especially the former. I didn't find anything written by you on Pubmed.

 

You come to this forum and immediately dismiss what I have said. You didn't indicate that you read anything about the subject on Pubmed, so I'm going to assume that you have not. And then you fail to offer any alternative ideas about the causes of autoimmune diseases and CFS. I'm not interested in dismissals. I wonder who called you over here to the forum to attempt to silence me, to make me give up, go home, and say "ho-hum I'll just think about something else now."

I don't think he can give you a scientific explanation for Chronic Fatigue - because there really aren't any. This is something at is still being researched.

You know, many of us have worked on research but our names aren't on the official papers. Research requires the work of a lot of " little people".

You refuse to be tested for Celiac, yet keep coming on a celiac forum to get info about non- Celiac stuff. When people try to steer you back to some simpler explanations for your issues - like Celiac- you appear to ignore that and prefer to argue more obscure illnesses. I am not sure there is much more we can do for you?

cahill Collaborator
cahill
Posted

  Seeking2012  

 

While I agree with you that heavy metal toxicity  or poisoning happens more often than some of the members in this forum will  agree with ,,, (as I stated in my earlier post I am personally dealing with copper toxicity)  I have to agree with kareng that this forum may not be the best forum  in regard to your heavy metal issues/ questions

 

You have stated that thyroid and celiac testing are on your "to do list" please let us know how that testing works out for you,, Be well 

 

 

 

 **before someone asks** yes my copper toxicity was diagnosed by a  competent  doctor     

.Fred Askari, M.D., Ph.D. Assistant Professor Director, Wilson's Disease Center of Excellence Clinic at the University of Michigan .   not an "alternative" practitioner     

dilettantesteph Collaborator
dilettantesteph
Posted

  Seeking2012  

 

While I agree with you that heavy metal toxicity  or poisoning happens more often than some of the members in this forum with agree with ,,, (as I stated in my earlier post I am personally dealing with copper toxicity)  I have to agree with kareng that this forum may not be the best forum  in regard to your heavy metal issues/ questions

 

You have stated that thyroid and celiac testing are on your "to do list" please let us know how that testing works out for you,, Be well 

 

 

 

 **before someone asks** yes my copper toxicity was diagnosed by a  competent  doctor     

.Fred Askari, M.D., Ph.D. Assistant Professor Director, Wilson's Disease Center of Excellence Clinic at the University of Michigan .   not an "alternative" practitioner     

 

My I ask how you were exposed to high levels of copper?  I'm an inorganic chemist and have worked with all sorts of metals in the lab, so that's why I ask.

 

Seeking2012: You can find published papers of individuals by searching Google Scholar or a similar search engine.  Not everything is on PubMed.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cahill Collaborator
cahill
Posted

My I ask how you were exposed to high levels of copper?  I'm an inorganic chemist and have worked with all sorts of metals in the lab, so that's why I ask.

 

Seeking2012: You can find published papers of individuals by searching Google Scholar or a similar search engine.  Not everything is on PubMed.

It is not  a matter of high exposure to copper ,, we all ingest  the copper that is naturally found in our food ,for most people any excess copper ingested  is eliminated ,, in my case  my body does not eliminate  excess copper properly .

GFinDC Veteran
GFinDC
Posted

Hi Seeking,

 

Here are some older threads talking about chelation.  Maybe you wil lfind some answers in them.

 

https://www.celiac.com/forums/topic/47214-bitter-metalic-taste/?hl=chelation#entry431794

https://www.celiac.com/forums/topic/44728-heavy-metal-toxicity-forum/?hl=chelation

https://www.celiac.com/forums/topic/61513-anyone-get-tested-for-mercury/?hl=chelation#entry558888

https://www.celiac.com/forums/topic/54087-you-may-already-know-about-the-mercury-in-fillings/page-2?hl=chelation#entry496213

https://www.celiac.com/forums/topic/49135-celiac-with-high-heavy-metal-concentration/?hl=chelation#entry450548

https://www.celiac.com/forums/topic/16318-chelation/?hl=chelation

dilettantesteph Collaborator
dilettantesteph
Posted

It is not  a matter of high exposure to copper ,, we all ingest  the copper that is naturally found in our food ,for most people any excess copper ingested  is eliminated ,, in my case  my body does not eliminate  excess copper properly .

 

Again, I'm being snoopy, but why is that?  Do you have some previously unknown medical condition that doesn't let you eliminate it?  Does it also make you not eliminate other metals?  Please don't think I'm doubting or accusing you of imagined illness.  I'm curious only.  Is it some condition thought to be similar to Wilson's disease?   Did you respond to treatment?  I hope you are feeling better.

LauraTX Rising Star
LauraTX
Posted

My I ask how you were exposed to high levels of copper?  I'm an inorganic chemist and have worked with all sorts of metals in the lab, so that's why I ask.

 

The person you are questioning has already said they have the symptoms of wilsons disease, just not the currently known genetic mutation.  We all consume copper in our everyday diets, which usually isn't a problem unless you have a problem eliminating it, like they do.  So they likely did not have an overexposure, just a natural buildup over time without the output.

 

Years ago we actually had a scare with my husband of possibly having wilsons disease, turned out to just be arthritic knees (yay for overreacting but glad to get it eliminated I guess) and they immediately had him go on a low copper diet.  To me at the time it was eliminating a bunch of seemingly random dark colored foods, you can look it up more info at Open Original Shared Link.

IrishHeart Veteran
IrishHeart
Posted

 I'm not interested in dismissals. I wonder who called you over here to the forum to attempt to silence me, to make me give up, go home, and say "ho-hum I'll just think about something else now."

 

No one "called him to the forum". No one has dismissed you.

 

You came on there asking questions. You just do not like any of the answers.

cahill Collaborator
cahill
Posted

The person you are questioning has already said they have the symptoms of wilsons disease, just not the currently known genetic mutation.  We all consume copper in our everyday diets, which usually isn't a problem unless you have a problem eliminating it, like they do.  So they likely did not have an overexposure, just a natural buildup over time without the output.

 

Years ago we actually had a scare with my husband of possibly having wilsons disease, turned out to just be arthritic knees (yay for overreacting but glad to get it eliminated I guess) and they immediately had him go on a low copper diet.  To me at the time it was eliminating a bunch of seemingly random dark colored foods, you can look it up more info at Open Original Shared Link.

    

Glad to hear your hubby does not have wilsons. I have to admit  wilsons  is  very scary   :ph34r:

cahill Collaborator
cahill
Posted

Again, I'm being snoopy, but why is that?  Do you have some previously unknown medical condition that doesn't let you eliminate it?  Does it also make you not eliminate other metals?  Please don't think I'm doubting or accusing you of imagined illness.  I'm curious only.  Is it some condition thought to be similar to Wilson's disease?   Did you respond to treatment?  I hope you are feeling better.

I had my gene testing done  in Dec of 2013 . There are more than 300 disease-causing mutations that  have been identified in the ATP7B gene and they are continually discovering new mutations .

 

Yes I have responded well to treatment . In addition to my meds I am on  a low copper diet and  drink only distilled water.

 

 

 

This is a link to the wilson disease association web site ,,, lots of great information

Open Original Shared Link

dilettantesteph Collaborator
dilettantesteph
Posted

I had my gene testing done  in Dec of 2013 . There are more than 300 disease-causing mutations that  have been identified in the ATP7B gene and they are continually discovering new mutations .

 

Yes I have responded well to treatment . In addition to my meds I am on  a low copper diet and  drink only distilled water.

 

 

 

This is a link to the wilson disease association web site ,,, lots of great information

Open Original Shared Link

 

Interesting.  Thank you

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,963
    • Most Online (within 30 mins)
      7,748
    AlissaW
    Newest Member
    AlissaW
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.