For All The Gene Experts...

[ShayFL]

It is great you have found a good doctor Rachel. That is half the battle!! My Doc. now is very good. She is nationally known and respected. Gets referenced in all kinds of alternative books, gives talks and has a featured spot on a nationally syndicated radio show. Impressive, but I still do not trust everything she says. And she makes mistakes that I have caught. She will at least acknowledge her mistakes.

But she uses EDTA for IV chelation. She will also use the DMSA orally.

I view doctors as "assistants" and not "CEO's" of my health. I am in control of my health. I know my body better than anyone and I have intuition for a reason. Ive walked out of doctor's offices. Ive looked a doctor square in the eyes and told her she was lying to me (when she was). They dont scare me. And I dont take any crap from them. My doctor now knows all of this about me and yet she works with me.....LOL

I may or may not have issues with mercury. Right now I am focusing on diet (gluten-free and the MS Recovery Diet). I have to give it time. I am only on week 7 and have noted some positive results. Less migraines and reduced pain, less gas/bloating, less BM's.

Im not going to go moving a bunch of Mercury around my body right now. If after 6 - 8 months on the diet, I feel good, I wont bother. But if I am not getting great results, it is an avenue I may travel.

I do appreciate ALL of this information and I have copied and pasted it into a file I keep on health stuff.

[mushroom]

Heres the info. I posted on another thread.

--------------------------------------------------------------

Rachel, thank you so much for reposting that. I have printed it out for digestion.

Neroli

[Rachel--24]

It is great you have found a good doctor Rachel. That is half the battle!! My Doc. now is very good. She is nationally known and respected. Gets referenced in all kinds of alternative books, gives talks and has a featured spot on a nationally syndicated radio show. Impressive, but I still do not trust everything she says. And she makes mistakes that I have caught. She will at least acknowledge her mistakes.

I'm glad you have a good doctor now too.

I really went through it the first few years because I couldn't get any Dr.'s to even listen to me...let alone help me. I think finding good doctors is the hardest part. No doctor knows it all...and mine have made some mistakes and have missed some things (like the copper toxicity) but I do trust them. For the most part we're on the same page but I also understand that they see alot of patients and cant possibly do it all without making some mistakes along the way.

What I like is that they dont have that arrogance about them that so many conventional Dr.'s seem to have (at least the ones I saw)....and they are so dedicated to healing people...not just handing out prescriptions but actually HEALING people. I actually enjoy my visits...I totally look foward to meeting with my Dr.'s and I always learn something from them.

I view doctors as "assistants" and not "CEO's" of my health. I am in control of my health. I know my body better than anyone and I have intuition for a reason. Ive walked out of doctor's offices. Ive looked a doctor square in the eyes and told her she was lying to me (when she was). They dont scare me. And I dont take any crap from them.

It sounds like we're alot alike!

I've had it out with quite a few Dr.'s before I finally got some good ones. I'm glad thats all behind me now.

I feel the same way about my health. I'm in control and the Dr.'s are there to help me....noone knows my body better than me. I'm very proactive and the doctors I see really LOVE that. I do alot of research and really pay attention to my body...they know that they can overlook something along the way and they really appreciate the patients that are involved in the whole process. Even if I had the best Dr. in the world I dont think I'd get very far without being proactive.

One of my Dr.'s told me that the patients who are very proactive have the best chance of recovery. Some patients just wait for things to happen and most of the time...it doesnt happen. He said those patients have less chance for recovery. The Dr.'s can only do so much....most of it has to come from our end.

I may or may not have issues with mercury. Right now I am focusing on diet (gluten-free and the MS Recovery Diet). I have to give it time. I am only on week 7 and have noted some positive results. Less migraines and reduced pain, less gas/bloating, less BM's.

Good luck with this! Hopefully, its all you'll need to do in order to resolve your symptoms....looks like its making a difference already.

[ShayFL]

They say a good man is hard to find. I say a good Doctor is EVEN harder.

For those still searching. Good Docs are out there. Dont give up!!

The doctor I am with now is actually the same doctor I consulted when I first started having these problems 12 years ago. Back then she didnt know enough to help me. A conventional M.D. who was about 2 years into Holistic medicine. But after 12 years and thousands of patients, she now knows her stuff!! It took courage for me to go back to her after she had "failed" me those years ago. But my intuition told me to go back to her.

She has a unique way about her and she dresses in a very quirky way. But she has a sense of humor, she listens, she takes notes if I bring up something she doesnt know about. She talks turkey with me. As equals. Partners in getting me well. This is what I love most about her.

If anyone is near Tampa FL, PM me and I am happy to share her name with you.

[Rachel--24]

She talks turkey with me. As equals. Partners in getting me well. This is what I love most about her.

Yes! Thats the way it should be. Thats the kind of relationship I have with my doctors and I totally LOVE it. I can go in there and feel like an equal. They're always interested in what I have to say....I dont get dismissed. My thoughts and opinions matter.

One of my MD's started out conventional....but now he's integrative. Its like the best of both worlds. Another MD I was seeing is totally holistic. Then I see an AMAZING naturopath who's actually not in my state but I'm fortunate to see her about 4 times a year (she comes to my area). I also was seeing a very knowledgeable practitioner for several months and doing alot of desensitization treatments and working on some dysfunctional detox pathway issues.

Thats my little mini-team of doctors. They all have something different to offer. It helps that they know of each other and there is no conflict as far as how I need to be treated. Theres a respect among these doctors/practitioners.

Its been a great experience for me.

[Lizz7711]

I remember reading somewhere that people with mercury poisoning do not like cilantro. I have always hated cilantro! And I do have high mercury and a mouth full of fillings.

So the recommendation is to avoid cilantro I take it? And what about garlic? I love garlic, that would be a bummer.

Liz

The dentist I used, said that cilantro is one of the most powerful chelators of Mercury. So powerful that he said he would never even eat it. He did mercury fillings for many years 3 decades. He knew he was toxic. He now spends his time removing them from people's mouths.

[Fiddle-Faddle]

I remember reading somewhere that people with mercury poisoning do not like cilantro. I have always hated cilantro! And I do have high mercury and a mouth full of fillings.

So the recommendation is to avoid cilantro I take it? And what about garlic? I love garlic, that would be a bummer.

Liz

I also have a mouthful of fillings--but I love cilantro, sometimes even crave it. And I have the gluten sensitivity/celiac (don't know which) while my husband, who doesn't (that we know of) hates cilantro.

???? ???

Where do we fit in?

[Lizz7711]

LOL, well there goes that theory!

although...craving something often means our bodies have a problem with that food....so maybe there's something to the theory after all...who knows!

I also have a mouthful of fillings--but I love cilantro, sometimes even crave it. And I have the gluten sensitivity/celiac (don't know which) while my husband, who doesn't (that we know of) hates cilantro.

???? ???

Where do we fit in?

[Rachel--24]

I actually like cilantro. I wouldnt say that I LOVE it...and I wouldnt say that I crave it either. I could take it or leave it. It doesnt matter to me either way. I just dont eat it because it supposedly crosses the blood brain barrier and mobilizes mercury in the brain.

Now ICE CREAM...thats a whole 'nother story.

[holiday16]

Could be the pregnancy that triggered the problems. Did the house have mold issues? Thats a big trigger for chronic illness. It was one of the things my Dr. wanted to rule out before we moved onto the possibility of mercury/heavy metals.

We did find as we did some work on the house that there were some mold issues which I've always suspected contributed to everything. When we pulled up the floor in the kitchen it was covered in mold underneath. Thankfully I was not home at the time and my dh was the one that had to treat the area. I did begin to feel better after that and I think that was the worst source in the house. We still have to tear apart the laundry room and we already did the bathroom. There was quite a bit of mold under the tub and behind the tiles. I think the carpet in the house is also a contributing factor since the house had no air conditioning and it sat vacant for a year. You can just imagine what that must do to carpet and mold. That's my goal right now to make enough money to replace the carpet in the entire house.

One other thing my dh found was that as he tore the wall out to expand a room he said there was a heavy pesticide odor and we suspect the house was probably treated heavily at some point probably for ants. I'm sensitive to pesticide so that probably contributes as well.

Some people get sick and some people dont. As long as the immune system can deal with it we're not having symptoms...the scales can tip at any time and we end up chronically ill. Sometimes the scales may tip slightly but then the immune system handles it and it balances itself out...symptoms can come and go when we're under heavy stress or dealing with infection. Eventually we get hit hard enough and the immune system becomes too burdened.

It is believed that chronic stress was a large contributing factor for me. I was a single mother and then I met my dh and we got married and moved to another state (he was military) and got pregnant. When our son was born he had a severe defect and had to have surgery right away. He had another one at 3 months and another at 3 years.

So in less than a year I got married, had a baby with severe health issues and I had a two year old that was having trouble adjusting to everything. It was quite a year ) When we moved and I found I was pregnant with my daughter the stress with that was tremendous after having had a baby with a defect. We had to go on base and were not comfortable with the care and when you're pregnant that creates an enormous amount of stress. As my Dr. said no one is meant to be under that much stress for so long. Also, during this time we had our own business which we started shortly after our son was born, but I think that actually provided a distraction I needed at the time even though it created stresses of it's own. I made enough extra money with it that it relieved stress financially so it all balanced out )

I think that the combination of prolonged stress plus the pregnancy plus the house was just too much and that's when everything really began to happen. I remember when my son had his 3rd surgery my youngest was 8 months old which made it all the more difficult, but thankfully my parents watched my daughters otherwise I'm not sure what we would have done as we had to travel for it. I was having quite a bit of trouble by then and it was so hard to get ready in the morning and I would have to rest because my arms would get so tired it was hard to do my hair. I noticed problems as soon as my daughter was born though and it just got consistently worse. They gave me some sort of IV antibiotic in the hospital and I've always wondered if that contributed.

There were two moments for that really stand out when I realized something was terribly wrong. One was when I had the kids outside and I went to mark with chalk where I wanted them to stop on the drive with their bikes. When I got back to the porch I was exhausted and all I had done was walk a little bit! The other was when I was at a party for my grandfather and I was talking with a lady in her 80's and everything she mentioned about her health and aches etc. I had too! When you're only 26 there is just something not right with that!!!

Did your mom have fillings?

I don't think my mother had fillings. She never had trouble with her teeth and I never did either until after I got pregnant with my kids. The only cavities I ever had was during pregnancy and then they were everywhere. I think my issues with mercury come mostly from pesticides. Where I grew up there is a high water table and the water is terrible because of all the farmland. My sister told me that we all had issues with it and that's when my parents got the reverse osmosis water purifier.

I'll be anxious to see how the chelation works with your edema (and mine). When I took the chelex before my test I seemed to actually feel quite a bit better while taking it, but it seems like it should be the opposite if it's pulling out metals. Could have just been coincidence. Guess I'll find out. I've been doing much better with metals since going gluten free and I think the reduced stress on my body helps me handle things better. Chemicals are not bothering me nearly as much as they used to either so that's a good sign.

Paulette

[nora-n]

Here they banned mercuty fillings almost from one day to the next: the new rule that mercury amalgam was not allowed anymore was made on the last workday before christmas, and the dentists did not go back to ordinary work until just after new-year and it cames as a surprise, and happened from one workday to another actically. The dentists complained that mercury amalgam was teh best filling material for some groups, like old people that did not close their mouth and the fillings dried out....

I never had two metals in my mouth. Here they just do not put in another metal opposite another, because of the galvanizing effect. We always get white crowns but often they have a gold something or another inside them from the place that manufactures them I was told.

I got ill from the first remolval of a filling, the dentist did not use any kofferdam mask but this was just at the beginning of the removing-amalgams-period and all dentists used it afterwards. He did use a vent that vented all the fumes outside the house, though and an assistant that used a vacuum hose close to the filling. But I got sick because he also should have used the dam.

I did not get worse afterwards when a different dentist removed the rest , a few months between each. I guess I was lucky. I noticed I had gotten more tired for each amalgam filling, starting at age 13.

I guess I am DQ1 but I cannot get it tested, as they only run the quick DQ2-and DQ8-test here. Someone posted she phoned Kimball and said the negative results did not fit, and they sent the sample to a bigger lab and they found DQ8 after all.

I looked for the test at pubmed.com and found an article, sounds like it is this one:

Open Original Shared Link note they type the alpha chain in DQ2 also (not in DQ8) the pubmed reference is Open Original Shared Link

Forexplanation of the DQ , and a list of all the alleles, both alpha chains and beta chains, see wiki

Open Original Shared Link and you also need to read the DR wiki

Open Original Shared Link as tehy throw in DR all the time.

I read in one posting that the lab also tested for DR 14 and 15 or whatever it was, I guess it is how they tested for DQ1 , I guess for MS.

The DR4 codes both for DQ7, two types, and Dq8, five types, maybe that is why it is hard to test accurately for DQ8??

I find 11 types of DQ1 on the DR wiki page too. (=DQ 5 and 6)

There is a list for DR types for MS too on that page.

Here is an article about a child that was ddiagnosed celiac, and where diagnosed celiac disease went away:

Open Original Shared Link

in reply to Open Original Shared Link

nora

[nora-n]

I have some references that they keep finding close to one percent DQ1 beside the DQ2 and DQ8 and all the half DQ2 (they can be DQA1 0501 alone or DQB1 02* alone)

Note they call DQ1 for DR13 so the wiki on DR comes in handy. But it makes serching for DQ1 and celiac very difficult so one has to know what DQ1 can be called, like the other link calls it DQA1 *01.

Open Original Shared Link

Open Original Shared Link

They almost hide taht DQ1 is a celiac gene that way, and if one reads the new Mayo clinic bulletin on testing , one is convinced that any other gene than DQ2 or 8 means that one must rule out celiac, especially after looking at the algorithms for testing.

Open Original Shared Link

nora

[diamondheart]

So is there anyone here with DQ1 who has had severe neurological symptoms which have completely resolved on the gluten-free diet...with no remaining food intolerances or additional health problems?

This thread is a little old, but there is some interesting information in here and I would like to reply. Hopefully, someone will read it!

I have two identical copies of DQ1 subtype 5. I don't have the exact information in front of me. At the time of getting my genetic results, I did a lot of research on the gene site. I have gluten sensitivity, and also a sensitivity to dairy. At one time, I was also sensitive to corn, soy, and some nuts, but I have been able to add those things back in. I still avoid soy and corn, but occasionally eat some. The only dairy I allow myself now is from sheep, as I seem to tolerate the sheep cheeses the best. These are the oldest cheeses from my ancestry, which is from Italy.

My main neurological condition was depression. Removing the gluten entirely seemed to help with that. I haven't been at this site much at all in the last year, but I used to post on the OMG thread for awhile.

Everything was hunky dory until I got pregnant. I had the worst anxiety and depression that I have ever experienced in my life. I felt like I was living in a nightmare. I still did not eat gluten, but I had added back in dairy as my body was craving it and I had many food aversions. I did not have a happy ending with the pregnancy, unfortunately.

Fast forward to about a month ago, I read an interview with Open Original Shared Link. He studied many prisoners and serial killers to find out if they had mental illnesses. He discovered that many of them had biochemical imbalances includine heavy metal toxicities, particularly problems with the copper/zinc ratios.

One of the depressive types Dr. Walsh identified, particularly in women with post-partum depression, was high copper levels. Here is a quote from the Open Original Shared Link where Dr. Walsh has done a lot of his work:

High-copper depressives usually have a history of hyperactivity, tinnitus, and skin sensitivity to metals.

Females with this condition usually have significant PMS and are prone to heightened depression during

hormonal events such as childbirth and menopause. They often report a worsening of depression after

estrogen or multiple vitamins. Treatment focuses on release of excess copper from tissues, promotion of

copper excretion, and stimulation of metallothionein (a metal-binding protein). Caution must be exercised due

to the tendency of blood copper levels to rise during the first 10 days of treatment.

I have tinnitus and I get depressed when I ovulate and when I get my period. It's usually just a day of my period, but I can be down right suicidal. I also get crazy when I take birth control pills, which I have not done much in my life. Not much is really known about prenatal depression, but those who have it usually end up with post-partum depression as well.

With this information, I recently ditched my multivitamin with copper, and am having a hair analysis done for heavy metals. Reading information from Rachel on this thread gives me even more information about copper and the mercury connection. I hope to have my hair analysis results back soon.

So no, just eliminating gluten with double DQ1 genes did not solve my neurological problems. However, I did find some obscure information somewhere about the links with the same HLA site as DQ1 with lupus and Sjogren's syndrome. My aunt has Sjogren's syndrome. There could be a link between DQ1 and autoimmune diseases, but I don't think there is enough research out there yet on it.

I'd love to hear some feedback on this.

Thanks, Claire