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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
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 Dr. William J. Walsh. 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 Pfieffer Treatment Center packet of information where Dr. Walsh has done a lot of his work:
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.
Nice to see you are all still here! I disappeared last fall as I was about to go into my first IVF. Long story short, it didn't work out, and I'm starting on my second one next week. I have this annoying habit now of sleeping for only 5 or 6 hours, and then I can't get back to sleep, so here I am...
An update on me: I stopped seeing my ART lady because I was overwhelmed with the cost and I just wasn't convinced I was seeing results. I went in for a dental cleaning last week, and who did I see behind the counter but my ART lady . She had just started working there and I guess she needed some supplemental income.
The one good thing about switching dentists and having all my amalgams removed last year is that I started flossing regularly. My dentist said that this was probably more important for getting pregnant than having my amalgams removed! There is a link between periodontal disease and getting sick/miscarriage. At least my gums are happier and I haven't gotten any colds that have been more than a runny nose.
I also had some toxicity testing done. We didn't bother with the heavy metals since I am going to try to get pregnant again and we don't really want to move those around right now. The toxicity testing showed I had high levels of parabens and styrenes. I write more about it on my new blog in my post "Pick Your Poison". Oh yeah, I started a blog, so you can read all about my baby making adventures over there:
Anyways, back to the parabens. So I thought, how could I have high parabens when I buy all this "high quality" shampoo and makeup (not that I wear much of it) . Come to find, my shampoo, conditioner, liquid soaps, and makeup all have parabens . I'm really mad at Aveda now! I'm in the process of converting all my stuff over to paraben free.
I also got a chlorine filter for my shower. I wish I could get a whole house filter! I had some blood testing done, and my chlorine was on the high end of the normal range. My acupuncturist told me that the chlorine vapors from the shower are more dangerous than drinking chlorinated water because the inhaled vapors go right to your bloodstream. It's so much more pleasant to have a chlorine free shower .
The intestines have been mostly great. The only problems I have are when I'm taking the hormones for my IVF cycle. My acu said that taking any hormones will affect your gut, as it affects the pH levels.
Good talking with you all! Donna, you look fabulous! Rachel, since starting a blog, I thought you should start one on your healing adventures! It's pretty easy to be a blogger, though I might pick a different program now, knowing what I know. Sorry to hear about your "unwelcome guests".
I went back and studied my latest Asyra tests. I also had something come up that I wasn't sure about. It's something that I've been tested for and I know I don't have, but it came up on this Asyra test. Eve is away this week, so I haven't contacted her about this seeming discrepancy. As a result, I'm doubting the accuracy of this Asyra scan. I'm also doubting the last scan since it was so radically different than the first one. Eve was having some problems with the program before we started with my last appointment's scan. I'm kind of upset about it, but the way I figure it is that I'm probably only good for one or two more treatments anyways right now. My priority is for the mercury treatments.
Rachel, that's interesting about the Lyme. I think I will ask Eve to ART test it since, like I said above, I'm doubting that she has enough experience with the Asyra program to trust it's accuracy at this point.
Apologizes for not responding with more personals as I'm skimming stuff at this point!
I had my second LED treatment Friday. Eve the ART lady re-ran all my Aysra test results. She just got the machine when I first saw her about 6 weeks ago. I'm pretty sure she tested me for different things this time, like pathogens and Mercury. I watched her as she did the computer program this time, and you can check on different filters. My results this time are so different than they were last time. I'm thinking that the stuff that showed up now is more important than the stuff that showed up last time. Part of me is a little frustrated, but I also know I won't be treated for all the different things that came up for me in both Aysra tests before I try to get pregnant.
The filters she searched on were: Pathogen Susceptibility, Sulfa, and Mercury. Last time she didn't screen me for the pathogens or mercury because she had already done that with ART. Now she's saying that the Aysra is probably more accurate. I didn't have any problems with the Sulfa stuff. Just wait till you hear what came up for pathogens!
She usually treats for one toxin, one food, and one toxic foci each treatment. Here's what she treated me for Friday:
She treated me for Phenylisothiocyante, which are indicated in gastrointestinal distress, colitis, diarrhea, cardiovascular irregularities, hypertension, and thyroid dysfunctions. Not sure exactly what this is (maybe Phenols?), but I had to avoid a bunch of foods, mostly cow milk, legume beans, and a bunch of other random stuff mostly in the mustard family (broccoli, turnips, etc).
I was also treated for the parasite Urogonimus sp. , and the Mercury I group. The toxic focus I was treated for was the Sacral Ganglia.
I think the hardest part of the 24 1/2 hours was drinking the gallon of water. I measured it this time, and it was a lot of water!! I didn't notice many symptoms, except for being tired, but who knows if that was from not getting enough sleep the night before? Maybe a little headache also. I finished my Harry Potter book, so it distracted me.
Even though I was cleared for Fungal toxins last time, I had some fungal stuff show up, like Phomopsis , Penicillium veridicatum , and fungal based mycotoxins. I also had Pneumonia show up , and I've never had pneumonia.
I also had under "Lyme Disturbance" Borrelia hispanica . It didn't show up as really strong, and was further down the list. I've always said I wouldn't be surprised if I had Lyme since I grew up on the East Coast and have had a history of tick bites being outside a lot. I'm also not going to run out and get a test for Lyme because I'm not going to do anything about it at this point. I'm more worried about the mercury right now. As we have discussed here before, Eve said that mercury hides Lyme.
I'll have to wait another 2 weeks to do another LED to finish the mercury because Eve will be out of town next week. Well be doing the Mercury I, II, and III group which includes Thimerosal.
I also saw my acupuncturist this week, and he said my pulses look really good. My energy is still a little high, and we don't know whats up with that. I had PPP while on vacation. The only time I had gastrointestinal problems was after eating too much coconut milk and after having two pieces of tiramasu , which I just could not resist .
I talked with both my acupuncturist and Eve about DMSA chelation again. The plan for now is to continue with the chlorella and Algas also got added in. Algas some kind of seaweed. Eve also tested me on cilantro, but it didn't test well on me. She didn't have a test for DMSA, so we skipped that. Plus, I don't actually want to pull out mercury that's already stored in my body. I'm just more concerned about getting out what's mostly in circulation right now, so we'll stick with the milder forms of chelation. I don't realistically have the time to pull out the mercury that's stored elsewhere, so I actually want it to stay where it is right now. It will have to wait until after pregnancy and breastfeeding to come out!
I'm back in Colorado. I haven't posted since I returned because 1) I've been busy, 2) I got a copy of the last Harry Potter book and I'm waaaay more interested in that lately , and 3) we are being watched at work , so I gotta keep this short.
I'm posting now because I won't be able to after work since I have my next LED treatment!
I opened the article that Rachel sent me a link to a while back, and I was surprised to see my ART lady's picture on the article! She wrote it ! I don't know, but she's not as strict as Rachel's ART people about what to avoid afterwards.
Anyhoo, I'll let you know how it turns out. Gotta go!
Hi Kat, Sorry to hear about your challenges lately . Sometimes it's one step forward and two steps back. I think Tom could be a support for you on this one! You are not alone !
Hmmm, fun is not quite the word I would use for the retreat . It's kinda like detox for the soul. You get to look at all these really painful issues in a supportive environment and work with them. It's like the LED or BioSET treatments where it's like peeling back layers of an onion. We work on issues that are universal to everyone, so you don't have to have some big trauma to do this kind of work. However, we have had more free time during this retreat than usual. I think it's on purpose because we're supposed to be learning how to live in the world without losing ourselves.
DH and I went to Big Sur today. I never get tired of that drive down there. I decided to try a new state park to visit south of Big Sur. On the way, we saw 4 California condors!!! We were driving around a bend, and there were all these cars slowing down and people on the side of the road looking up. I said, they must see something. Just then, I looked up and saw a HUGE bird soaring. Even though I've never seen a condor in the wild, which would be pretty dang rare since there aren't many of them, I knew what it was immediately.
But wouldn't you know it, we didn't see any sea otters at the Big Sur beach . I said to DH, I guess you don't get condors (an endangered species) and sea otters (a threatened species) in the same trip .
As much as I love the California coast, sea otters, Monterey cypress trees, and redwood trees, my heart belongs to Colorado! I love my mountains there, the smell of the pine forests. It's weird, but redwood forests don't have any smell .
DH and I went to the Monterey Bay Aquarium yesterday. The best part about it was the sea otters. They are soooo cute!! I could have watched them all day long. They look a lot bigger when you are next to them versus looking at them in the ocean.
There was some interesting information about seafood there too, and which seafood is the best to eat for both environmental and health reasons. I wanted to include this link that describes which fish have environmental contaminants and how much you can eat of them in a month.
I think this is one of the best guides I've seen on which fish are contaminated with mercury and PCBs.
Donna, happiness is a good massage therapist . On the birthday card DH gave me, he said "this is good for one dinner and one message". I knew he meant massage, so I thought it was hysterically funny ! He didn't realize the spelling was different .
Rachel, can't wait to hear about your LED treatment.
Andrea, good luck with you kids' up coming LED treatments.
Carla, hope the increase in antibiotics isn't too rough on you.
Hi Jin! Just saying hi cuz you always think of me .
Hi Susie Q, you crazy nut you .
I'm a little behind on the gossip. Anyone hear from Kay recently? I'm wondering how giving up the smokes is going?
A quick hello from the Monterey Peninsula! The Asilomar State Beach is fantastic. The weather has been amazing this year. We are actually getting sun for a change. Remember the famous saying from Mark Twain, the coldest winter I spent was the summer in San Francisco? We've been really enjoying the sunshine! I haven't seen as many sea otters as I would like. All you Bay Area/Central Californians should really check this place out sometime.
I've been pleased with my intestinal functioning since I have been here. The only time I had a problem was when I ate too much coconut milk. I had a few bites of regular birthday cake yesterday, but DH was sweet enough to get me a gluten free cake. I've been eating gluten and dairy free, and the staff at the Asilomar cafeteria have been very accomodating for my diet.
Thanks Rachel and Andrea on the info on mercury and LED. I don't know if I'll get caught up, but that info from last week was really useful. I'll go in for my next LED treatment in a week! We'll see where the mercury is at that appointment. I've been taking my chlorella consistently while here.
Thanks for all that LED stuff. I missed the part about abstaining from sex . DH would not like that! I also missed about using electric toothbrushes and hair dryer . Oops. Well, I'll know better for next time. Can you provide the link to that website where you got the info? I hope I can remember which page this is on so I can come back to it. I can't print it out right now.
I also didn't get from my ART lady that you can't wear metal jewerly or metal belt buckles after the treatment. I though you only had to take them off during the treatment? Actually, I can't really remember what she told me . Sheesh, that was a month ago!
I can't wait for my next treatment. My ears are ringing louder again after yesterday's smoke filled adventure. I also wonder if somehow the West Nile Virus got stirred up again in all this? I rarely get colds in the summer and the one time I did, I think it was actually WNV . This one wasn't so bad though, so I guess that's a good sign. I think my ears have been ringing more because of the increased mercury in my system after my amalgam removal.
I talked to my acu about testing me for DMSA. It sounded like he didn't usually test people for DMSA, which I found curious. How will you be tested for DMSA? Dr. F usually uses his electro-dermal Vega testing machine. Donna and I were talking yesterday about how scared we were to take the chemical chelators. Do you think you would take the DMSA different than how it would be prescribed for normal mercury chelation? I'm curious about how all this works. Plus part of me would like to speed up this process of moving the mercury out of my system. I think I need to be a little more patient . It's been less than 2 weeks since my last amalgams were removed!
I did a quick drive by of your photos. I love all your flowers. Nice paintings by DH! Love the nature theme!
I used to take HTP-5. It was great at first, then not so good . I had to stop taking it because it wasn't good for me anymore. I think you have to be really careful about the amount you take because you can take too much. I forget how it works, but I think maybe it builds up the hormones in your body. Can you get someone to test it on you to see if it's still good for you? I take my magnesium right before bed, 300 mg. My problem is getting up about an hour or two before I'm supposed to get up. It seems to have gotten better lately, and I'm not sure why. Maybe the LED treatment? If I had to be at work as early as you, I don't know that I would get enought sleep!
How do you think that works with the chelation starting after your 5th LED session? Just wondering why you wouldn't start chelation before LED and what you think the relationship is?
I guess I missed the whole cooking thing after LED, but my ART lady wasn't too worried if I wasn't super strict about avoiding stuff. She said you just do the best you can. I couldn't totally avoid my cell phone after my LED treatment, but it seemed to work fine. I'll have my next one when I get back from California
Our first Close Encounter of the Rachelville kind ! It is kinda strange how you get to know people on line, then you meet them in person. You know, like when you read a book and then you go see the movie, and the person isn't how you had imagined them in your head. Not in a bad way, but just different. By the way Tom, your secret is safe with me, at least for today ! Gotta make you sweat a little .
I don't know how much fun we were. We were just sitting there all drinking our water, cuz we couldn't have something more exciting, ! Tom came to the rescue with his super fancy phone as Donna forgot her camera. I was waiting for him to stick his ATM card in it to get money. What else does that thing do? That was us in front of Whole Foods, the only "safe" place we could meet. I was so happy to see a WF again! I thought it would be nice to sit outside, but I was shocked how we were surrounded by smokers . That wouldn't happen in the People's Republic of Boulder .
Anyhoo, it was fun connecting with Donna and Tom. Just makes it a bit more personal around here, which is nice . We can be so different yet have this common connection. Hugs were given all around !
I'm in Santa Cruz now. I took a walk down by the beach, and wouldn't you know it, but I was surrounded by more smoke! It was one big party of bonfires. I think I'll go get some redwood tree hugging action tomorrow before picking DH up. It's my duty as the Rachelville granola. If I had my camping stuff, that's what I would have done tonight and no posting here! I love redwood trees !
I found a computer in the lobby of my hotel that I can work on for awhile before heading off to the airport to get my rental car.
On the field trip I went on for this conference, I was pulling off the meat from the sandwiches we were given for lunch. The gal next to me said she would be doing the same thing, so we got to talking about celiac and what not. When you attend a conference like this, they ask if you are vegetarian, but no one thinks to ask if you are celiac . Since I'm not technically celiac, I didn't mind getting a few crumbs on my sandwich fillings.
I got a sore throat after the field trip and I thought it might be the pollution in the area, but it ended up turning into a cold . I had froggy voice for my talk this morning . I'm so glad it's over!
I'm not surprised I got a cold. After all the stress I've been under at work, not getting enough sleep, then travelling and having 3 amalgams removed a week and a half ago, it all finally came to a head, my head . It wasn't too bad. I tried to sleep as much as possible in the last couple of days. I feel slightly better today.
I'd love to stay in a hotel with a kitchen when travelling. I bought a one pot burner for this trip and brought my camping pot kit . It worked out pretty good, but I think I have to be careful not to cook too smelly food. It smells kinda weird in my room now from the buffalo burgers I brought with me . Where I'm going to Asilomar, they cook the meals for us and have a great chefs who are accomodating for diets like ours. I just hope I don't drive them crazy! I've been there before, so I'm not worried about that.
Shelly, I didn't catch up with you soon enough for our Rachelville rendezvous .
Lisa, you do sound a little better since your last e-mail. Hope you can stall on taking the DMSA till at least the rest of your amalgams are out. Let us know how it goes.
Just popping in from San Jose to say hi! This conference certaintly isn't gluten-free friendly, but I met a celiac woman on my field trip today . A couple of people were talking on the field trip about the mercury mines up in the hills around here and how it comes down the watershed. Scarey .
My internet connection is really sketchy, so no long message here. Pretty much how I've been feeling today - a bit sketchy .
Sorry Donna, I can't help you. Dr. F my acupuncturist does BioSET a different way.
:blink: Wow, that's ALOT of magnesium!! The most I can tolerate a day is about 1000mg before getting D.
My massage therapist taught me an easy way to remember how to massage your intestines to help you pooh. She teaches mothers to do it on their babies. It's called I Love U. First, you start on your right side of your lower abdomen near your groin. Stroke up for the "I". Then, start in the same place, and make an upside down "L" going up your right side of your abdomen, then across just below your ribs. Next, start again in the same place on the lower right, go up, then across to the left, then down the left side for an upside down "U". You've finished the I Love U! The "I" is the ascending colon, "L" covers the Transverse colon", and the "U" picks up your Descending colon. It's much easier to show you, but I can't really do that here, eh ! Hope this helps you to remember it.
Rachel, think of it as a vacation! I think we all need time away from the computer. It can't be that healthy getting all these EMFs all the time! Same with the cell phone. Who knows what it's doing to my brain ?
I'm off to SJC Monday, so I really shouldn't be here. I have so much to do before I leave ! I probably won't be here much the next 3 weeks. When I start my spiritual retreat, I'm planning on staying off the computer, but we'll see if I have enough discipline to do that! I'd rather be going for walks along the California coast. I love the sea otters and Monterey cyprus trees!
A friend of mine just went on a meditation retreat, and she called it Grease Monkey for the mind ! My brain is looong overdue for an oil change !