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.

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.

"poop hole itching"....now that made me laugh!! Laughing is good.

Looking forward to it Rachel.

Venting is good. And it is very hard. I had a pity party for the first two weeks and then I just got on with life.

Im eating burgers when I want them. And cookies. I just make them myself. Ive bought a nice nylon lunchbox and some nifty containers. I pack my snacks and meals with me if I am going out anywhere (shopping at the mall, the beach, etc.). You get used to it.

I think of all of the people who have it so much worse than me. The people who cannot tolerate ANY sunlight and must live indoors and can only come out at night. A life of seclusion. Living while everyone else sleeps. I cannot even imagine that kind of life.

Packing my own food isnt that big of a deal.

Mercury is a funny thing. I had all of my mercury fillings removed (12) about 11 years ago. I painstakingly found a dentist that would do it right. I had to drive an hour to get to him, but it was well worth it. Dental Dam, special filters for the room on top of an open window and a special mask for me. I was blood tested ahead of time to make sure the composite used was biocompatible for me. He did them 2 at a time every two weeks, so it took some time to get them all out.

Interestingly at the time my body temperature went from about 97 to normal 98.6 after the last ones were removed.

Then I took 1 DMSA pill and thought I would kill myself. I felt absolutely insane as the mercury was being pulled out of my brain. So I never took another pill. Instead, I took a lot of Vitamin C, cilantro and gave it time.

I do not know how much I still have in my system. But I know that I am unwilling to do the chelation challenge like my new doctor wants. You get the EDTA IV and then 24 hour urine. Then based on that, more chelation.

It just scares the hell out of me based on my experience with DMSA.

Keep us posted!!

If we are going to be very specific about the symptom "anal itching" I will throw in my experience as well. I have 1 hemmoroid that I devoloped when pregnant with my daughter. It rarely bothers me, but every once in awhile it gets swollen and it "itches like mad" for a few days. I dont scratch it. I use ice packs and witch hazel which takes care of it in a few days.

Rachel - What have you done for your Lyme?

Mercury toxicity?

And most importantly, is it working?

Did it bring down your Candida antibodies?

Symptoms?

I would def. look into the parasite angle. It sounds spot on.

Fedora...how long gluten-free???

Discrimination between Celiac and Other Gastrointestinal Disorders in Childhood by Rapid Human Lymphocyte Antigen Typing

Clinical Chemistry 44: 1755-1757, 1998;

"Eight of the 122 celiac disease patients lacked both the heterodimer (**this referred to DQ2 all through the article**) and the DRB104 alleles; therefore, we further screened the DQB1 locus to investigate if other alleles were present in association to celiac disease (2)(14). Two of these eight celiac disease patients showed the DQ2 molecule (DQB10201 allele in heterozygosis); but one of them carried also the DQB10501 allele, also found in Sardinian patients to be associated to celiac disease (15); four showed the DQ7 molecule (DQB10304 or DQB10301 alleles). Another patient carried the DQ8 molecule encoded by the DQB10302 allele, and the remaining patient had the haplotype DQB10501 in homozygosis (15). The DQ8 molecule seems to be an alternative to DQ2 in influencing susceptibility towards celiac disease, being present in up to 20% of celiac patients not bearing of DQ2 in the Mediterranean area (2)(14)(16). Our data do not support an earlier finding that HLA-DQ7 is a nonsusceptible molecule (2). In fact, DQ7 was present in 50% of our celiac disease patients in the absence of the heterodimer and of the DRB104 alleles. Because the DQ7 molecule is very similar to the DQ8 molecule, it could alternatively present similar gluten-derived peptides to restricted T cells (17). DQ7 has been detected in a few celiac disease cases in the absence of DQ2 but in association with the DRB104 alleles (18)."

***Very Interesting

I suppose it is possible that neurological symptoms develop with relation to length of exposure to gluten. I didnt have them until 12 years ago. I am 39. I have been exposed to gluten for over 38 years.

Thanks Rachel,

I had to go and check my records. I was tested for Babesia MIcroti, Ehrlichia Chaffeensis, HgEAb, Lyme, Q Fever, RMSF and Tularemia. All Neg.

I am on week 7 Gluten and Dairy Free.

Interesting looking at your symptoms. I didnt include symptoms I used to have like loose BM's and Gas/Bloating. Those have gone away fro me on the diet.

I too get strange ear pressure from time to time and weather changes can bring on a Migraine for me too.

I am DQ1 and DQ3 per Enterolab.

My main symptoms are:

Vertigo - major episodes about every year or so. But daily a since of disequilibirium.

Ataxia - I feel like I am being pulled to the side when I walk

Neuropathy - Numbness/tingling in hands and feet. Sometimes they get hot and burn. Stiffness in the a.m. Creepy Crawly sensations all over my body sometimes.

Migraines - 2 times monthly

Muscle Twitches

Hypothyroid

Depression - the distymia (sp?) type

Lesser symptoms:

Dry Eyes

Some bone loss in jaw/spine

Low Libido

Tooth issues

Dry/cracked skin in areas (mostly feed/elbows)

Fatigue a lot easier than I used to

Since going gluten-free, I have seen improvement in my Migraines and my daily BM's are down from 5/6 a day to 2/3. Very little gas now. Right now my neuropathy and vertigo are really bad. And no chance of CC. Im anal. Brand new kitchen with all new equipment/cookware/utinsils, etc. Really I just got a new kitchen. Everything down to the drywall was gutted. All gluten foods were thrown out. Im cooking all my own whole foods. No eating out. ALL gluten free toiletries, cosmetics, etc. Even my dogs get gluten-free food. So dont know why the symptoms are worse.

I am interested in hearing what other have to say about their symptoms!

That is a great idea! I would be curious too.

Here is what I have found so far. You know, when I went into the book store a couple of weekends ago looking for "gluten free cookbooks". I found the section and "The MS Recovery Diet" literally jumped out at me. I bought it. I pray to God that this is the answer I have been looking for. As I research now, it is all adding up. I have the right gene for it and many of the neuro symptoms.

Multiple sclerosis - DQA1*0102 was the most frequent allele in the MS patients and DQB1*0602 increased significantly in the MS patients (11)(12)

# ^ Amirzargar AA, Tabasi A, Khosravi F, et al (2005). "Optic neuritis, multiple sclerosis and human leukocyte antigen: results of a 4-year follow-up study". Eur. J. Neurol. 12 (1): 25-30. doi:10.1111/j.1468-1331.2004.00901.x. PMID 15613143.

# ^ Fern

Is there a connection to DQ1 and MS? Im going to research that.

I am starting the MS recovery diet. I have not been dx MS, but I have a lot of the symptoms and truth be told, I do not want an official dx of a disease like that. I had MRI's and cat scans years ago that were fine. And 2 different neurologists. Im not going back anytime soon. But this diet made sense to me, so I will try it. Ive got nothing to lose.

Basically it is: No Gluten, No Dairy, No Legumes, No Eggs and No Yeast. Limited sugars. It also requires you to limit your saturated fat to around 15 grams a day. It is the fat that I have the most problems with adhering to. Even a handful of nuts has 1 or 2 grams. It is in all meat, even lean chicken. So that will be tough. Right now I am doing everything except counting my saturated fat grams. I will get there. It is also recommended to get an ELISA for other food intolerances (which is only about 80% accurate from what I have read), but I will be doing that on Tues. and should have the results in 10 or so days.

I will cut out any additional foods that show up. I am going to do my BEST to do the 4 day rotation of food families to prevent new intolerances from showing up and give my body time to heal.

I honestly do not know what will be left for me to eat. But if all of this does not cure me or give me at least some relief in the next year or so, then I will stop looking at food. I will be over food!!

I hold on to hope. I was "normal" at some point, so I can be "normal" again. I refuse to give in or give up!

Right! I do not have DQ2 or DQ8. I wasnt thinking straight. The genes are oh so confusing.

So I am DQ3 at least.

It says: Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

It thought that meant I was DQ3 and DQ1 ??????

HLA-DQB1 - Allele 1 - 0301

HLA-DQB1 - Allele 2 - 0602

The Enterolab Interpretations is confusing. I also had tests with Kimball and am negative for either Celiac gene.

Am I DQ1? DQ2?

I would like to know this too as I am in the same boat. 7 weeks gluten-free with no resolution of neuro symptoms. In fact I am in a pocket of worse symptoms at the moment. Anyone???

I am in the process of cutting out all legumes. I have neuro symptoms and am following the MS recovery diet even though I do not have MS. Anything that can heal my nerves sounds good to me. Anyway, the diet cuts out gluten, dairy, legumes, eggs and yeast. I am already gluten-free and DF. So now I am cutting the rest.

In my research I discovered that virtually ALL of the cinnamon sold in the US is actually Cassia which is a LEGUME. And Licorice is a legume. I didnt know this. So I have ordered some "real cinnamon" because I do love the taste.

Here is a list of legumes. It is not all inclusive because it doesnt list every bean/pea. But it points out some that you might not be aware of:

Legume:Acacia; Acacia Gum; Alfalfa; Arabic; Black-eyed pea; Carob; Carob (St. John's Bread); Cassia; Chick Pea; Field Pea; Green Bean; Green Pea; Guar gum; Jack bean; Karaya Gum; Kidney bean; Lentil; Licorice; Lima bean; Locust Bean Gum; Mungo Bean; Navy Bean; Peanut; Peanut oil; Pinto Bean; Soybean; Soybean oil/flour/lecithin; Split Pea; String Bean; Talca Gum; Tamarind; Tonka bean; Tragancanth Gum; Urd Flour.

Some that surprised me: Acacia, Guar Gum, Cinnamon and Licorice.

I bought real cinnamon here:

Open Original Shared Link

But it is a little cheaper here and you can buy smaller quantaties:

Open Original Shared Link

Curious One....check your dates.....Seems you will be going gluten-free in the future.