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Omg...i Might Be On To Something


Rachel--24

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dlp252 Apprentice

Oh, who was it...Kat?! I have Kick, PUnch Crunch too! :lol: Love that but haven't done it in a while...long while.

I do three sets of at least 8, and up to 10. I might be able to lift more, but not get those reps.

I think the bar is 45 pounds? Plus 20. I'm assuming you had 30 pounds on the bar?

I also do several other leg exercises so I don't need to wear myself out with this one.

Yeah, I try to do at least 8, but do 10 if the weight is a little light. I have a barbell at home...my bar is only 5 pounds, I have plates in small increments...2.5, 5, 7.5 and 10 pounds each, so I have a lot of flexibility with setting the weight. I work out only at home these days. :( 40 lbs was total weight. I could have gone heavier, but couldn't lift the barbell over my head and behind without chancing hurting my shoulders (without a spotter). I think maybe once I tried weighting upper body in addition to that, but it was clumsy so didn't do it again.

I can wear jewelry. My wedding ring is 14 K and gives me no problems. Once in a while it turns my hand black ... then I just accuse Adam of giving me a cheap ring.

I've never been able to wear post earrings very well. I can drop earrings with wires and they give me no problems ... or hoops. I think it's something about letting air in the hole.

I used to be able to wear any kind of metal post earrings...hoops, wires, whatever. Then I couldn't wear the cheap stuff but could still wear stirling and gold. Then I couldn't wear silver anymore, but could wear gold. Now I can't even wear 14kt gold. I've also tried 18kt but can't wear that either. I can wear hoops for a couple of hours without too much problems (just weeping), but longer than that and I get cysts in the holes. :(

Donna, I honestly don't know how you manage to work, I know I would be exhausted at the end of each day too.

I was explaining to a friend today that when you are really ill even responding to a friend's concerned email can be more than you can deal with. I know there are days when just feeding myself is all I am inclined to do.

As I have felt better I have been able to accomplish more but a full time job is beyond me.

I went back in the thread to when I first joined and I thought I had AS and Celiac, at that point Lyme was something I discounted because I hadn't had the bull's eye rash.

Yeah, when I first joined this thread I was excited because I thought CORN might be my problem. :P Then I thought it was MSG, NEVER would I have suspected it was Lyme!!!

Yeah, work is just draining. I am alert and good at my job (which surprises me most days), but I think it takes a lot out of me. My job is not physical, but it takes a lot of concentration and mental work...I also think that's one reason why I have such a hard time with the scientificness...my brain just wants to shut off after a while...darned work takes it all out of me.


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CarlaB Enthusiast
Yeah, I try to do at least 8, but do 10 if the weight is a little light. I have a barbell at home...my bar is only 5 pounds, I have plates in small increments...2.5, 5, 7.5 and 10 pounds each, so I have a lot of flexibility with setting the weight. I work out only at home these days. :( 40 lbs was total weight. I could have gone heavier, but couldn't lift the barbell over my head and behind without chancing hurting my shoulders (without a spotter). I think maybe once I tried weighting upper body in addition to that, but it was clumsy so didn't do it again.

I don't think lifting it up over your head is a good idea. ;):o I think that the most dangerous part of lifting weights is preparing to do the lifting. We are paying attention to form, etc. when we're lifting, so it's safe, but then getting the weights out and putting them away we're not paying attention as well ... that's when we'll get hurt.

I have weights at home, but I do to the gym.

Fiddle-Faddle Community Regular
I used to be able to wear any kind of metal post earrings...hoops, wires, whatever. Then I couldn't wear the cheap stuff but could still wear stirling and gold. Then I couldn't wear silver anymore, but could wear gold. Now I can't even wear 14kt gold. I've also tried 18kt but can't wear that either. I can wear hoops for a couple of hours without too much problems (just weeping), but longer than that and I get cysts in the holes. :(

Me, too!

I couldn't wear ANYTHING for more than 4 to 5 minutes--until I went off gluten. Now I can wear 14 karat gold for a couple of hours before it starts to itch.

I can't wear a watch any more, either, but with cell phones, who needs a watch?

I can wear my wedding ring, and that's it.

(Yay--I caught up!)

AndreaB Contributor
Yeah, work is just draining. I am alert and good at my job (which surprises me most days), but I think it takes a lot out of me. My job is not physical, but it takes a lot of concentration and mental work...I also think that's one reason why I have such a hard time with the scientificness...my brain just wants to shut off after a while...darned work takes it all out of me.

You do have mentally tiring work, that's for sure.

(Yay--I caught up!)

:lol:

rinne Apprentice
Me, too!

I couldn't wear ANYTHING for more than 4 to 5 minutes--until I went off gluten. Now I can wear 14 karat gold for a couple of hours before it starts to itch.

I can't wear a watch any more, either, but with cell phones, who needs a watch?

I can wear my wedding ring, and that's it.

(Yay--I caught up!)

We talked about this a while back, it seemed like mostly everyone had problems with earings and glutening.

Congratulations on catching up. :lol: It is a real accomplishment at times. :lol:

miamia Rookie

ok-

i will try to post about my appt. today, but i will probably leave stuff out becasue i am really tired.

I first had my appt. with the doc and that went really well. I talked to him for over an hour and went thorugh my whole history. We discussed lyme along with worms and parasites as the possible "root" of my illness. We went over some of my old tests- lyme and c d 57 etc.

After the meeting with him i had a bunch of blood work done for heavy metels and then i had 4 intrivenous drips- one was DMPS , one was Vitamin C , One Calcium, and one was just minerals becasue all of the others can be very depleting. This whole thing was very time consuming. And aftrer I had to pee in yes- out favorite- orange Jug- for 6 hours . This was all to test for metal toxicity.

Before i left i also did a stool test but it was an andoscopy and you don't actually go to the bathroom they just stick a tube up there and take a few swabs. This is the coolest stool test i have ever had and the results will be for this at the begining of next week.

So thats the basic info. I ahve a follow up in a few weeks when all the results should have come in.

God i am exhausted i know there is more to say. Tomorrow i ahve Physical therapy and i am praying i will be able to complete the last day of my other stool test- which requires actual stool.

i really want a day off with no appts. and no tests and just nothing!!!!!!!!!

CarlaB Enthusiast

Miamia, sounds like it went really well, I hope this appt. starts to point you and your doc in the right direction for treatment.


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AndreaB Contributor

Mia,

Thanks so much for the update. Get some rest.

Hope you can complete the other stool test tomorrow.

I'll be anxiously awaiting your results along with you. :)

Rachel--24 Collaborator
And, I've been reading about EMF fields on LN and actually learned a little bit about them from (of all places) Ghost Hunters. :lol: Anyway, they (the Ghost Hunters) are able to debunk a lot of paranormal stuff that can be attributed to high EMF emissions in homes. I wouldn't doubt it one bit if I've got bad EMFs running around here. :lol: My cordless phone is about 6 feet away from my bed, but I think there is a cable line right by my headboard. :(

I've read alot about the EMF's over there too. Gigi posts alot of the stuff she's learned from Klinghardt....the EMF's, cell phones, geopathic and electromagnetic stressors, etc....thats probably the stuff that scares me the most. :ph34r:

I read that Klinghardt is saying that geopathic stress is even worse than mercury. :o

I've recently unplugged my cordless phone thats next to my bed...I dont use it anyway...all calls are forwarded to my cell so I figured I better just unplug it.

Dietrich Klinghardt, MD, PhD, an American pioneer and authority on neural therapy, confirmed that geopathic stress is "huge." If he could remedy only one thing, that would be the one.

I got that quote from this Townsend article on geopathic stress as a cause for crib death.

Open Original Shared Link

I read one story of some patient of Dr. K's who had brain cancer (I think thats what it was). They tested her bedroom for geopathic stressors....found some problem in that room....she moved into another room and her cancer was cured. :o

So she gets pregnant, has a healthy baby....which she ends up putting into her old bedroom. At 2 years old her baby died of brain cancer. :(

I brought this stuff up at my appt. with Dr. Amy....told her it scared me. :(

I asked her about the computer and if all this stuff could actually not allow me to get better no matter what I do?? :unsure:

She said right now we just really need to focus on getting me to detox and we really need to get the metals out. She just said to try to keep my body as far away from the computer box as possible. She said the computer could react with the metals in my body.

I've actually had reactions to the computer lots of times....but mostly when I was going through galvanic reaction and the amalgams were still in. Sometimes my head swells a little still.

Anyways, she said they know that this is a big piece of the puzzle. She said she has some autistic kids who will go totally nuts if you drive them by a cell phone tower....they just go nuts.

Then there are others who must have some type of electronic device in their hands or in front of them at all times or they have a complete meltdown.

So yeah...that stuff scares the cr** out of me. :ph34r:

Clark Bent as Stupor-Man Contributor
I don't know what RSD is. Or maybe I do but don't remember what it stands for. It's very hard to get someone to change their diet unless they are motivated to do so. Hoping you'll be able to convince her to do the celiac disease-57 test also.

RSD is reflex sympathetic dystrophy (also known as CRPS - Complex Regional Pain Syndrome)... it's a chronic pain condition typically localized to a certain part of the body and triggered by an accident or injury of some sort.. the type of pain often includes hypersensitivity to the point in which merely scraping a fingernail lightly across a patient's affected arm might be more painful than punching them in the arm... RSD can be essentially put into remission to the point a patient is asymptomatic or can persist as a chronic pain condition and spread to other parts of the body...

in my sister's case, it was triggered in her foot from one of her surgeries after she stepped on a piece of glass working as a lifeguard when she was in high school... then it became active in her left arm (not positive how this happened, might have been from a different surgery to remove a tumor)... this was the case for years, but she's learned recently that it has apparently spread throughout her entire body...

Yeah...I think in this case the CD57 would be very telling.....and necessary.

I hope everything works out in the best way possible for your sister. I totally agree that diet changes would be helpful for her...no matter what her main underlying issue is...she would no doubt benefit from a healthier diet.

getting my sister on a good diet for her situation is tricky though... she generally doesn't have much of an appetite, is a picky eater, and finds comfort, so to speak, in eating (or I guess racheling) certain foods... with her situation, the number one thing is to try and keep her spirits up and I think cutting out some of these comfort foods might make her a little more depressed...

and she has tried different diets over the course of her sickness... she was seeing an integrative med. doctor who practices homeopathy and put her on a number of diets including an alkaline vs. acidity one... I don't think she ever cut out all things though (such as say, gum w/ aspartame)... but I think the only way my mom and I could get her to make substantial dietary changes for at least the foreseeable future would be having her hear it from others who have gone through what she has with RSD and used nutrition to help recover and maybe with some pressure from certain doctors of hers...

Well I got conflicting info on band 18. <_<

thanks for looking... I think I came across similar information about band 18 when I looked... all I remember is that nothing struck me in regards to her positive bands... I know there's some stuff that could be going on with some indeterminate bands if they were indeed positive...

Charlie, I hope your sister can get a more definitive test result but it did look to me like there were indications of Lyme. Please keep us informed. I'm sorry if I missed this but how old is your sister?

my sister's 2 years younger than me... 25

Chloe's test was "less positive" than this one, so I can say that my doctor would treat your sister. My LLMD is looking for abx response in Chloe, and we're getting it. Though her headaches are better, her joints hurt more often.

with my sister's situation, I think we would need some solid test results to shift things, at least partially, in this direction... the germany thing in a few months is pretty much a lock at this point and even if she tested strongly positive for lyme, I'm not sure how we would proceed... any slight or possibly lyme test results will probably be discarded for now... what I would like to see happen is for her to make changes (like dietary, maybe some detox things, probiotics, etc.) that would benefit her regardless of whether or not she had lyme..

Rachel--24 Collaborator
After the meeting with him i had a bunch of blood work done for heavy metels and then i had 4 intrivenous drips- one was DMPS , one was Vitamin C , One Calcium, and one was just minerals becasue all of the others can be very depleting. This whole thing was very time consuming. And aftrer I had to pee in yes- out favorite- orange Jug- for 6 hours . This was all to test for metal toxicity.

Mia...sounds like you had a long day. I hope you can get some rest now. :)

I'm excited about all this....its been a long time coming. I think you've really *needed* someone to run all these tests and to also look at everything that was previously done with the Lyme testing.

Its exhausting but hopefully now you'll get more answers and more direction.

It sounds like this Dr. is gonna work out better for you. I cant wait to hear how your follow-up goes.

I'm glad they did all these tests for the metal toxicity as well....I think it might be a critical piece for you....either way its good to get these tests done and out of the way and to hopefully get some clear answers. :)

Clark Bent as Stupor-Man Contributor
I brought this stuff up at my appt. with Dr. Amy....told her it scared me. :(

I asked her about the computer and if all this stuff could actually not allow me to get better no matter what I do?? :unsure:

She said right now we just really need to focus on getting me to detox and we really need to get the metals out. She just said to try to keep my body as far away from the computer box as possible. She said the computer could react with the metals in my body.

I've actually had reactions to the computer lots of times....but mostly when I was going through galvanic reaction and the amalgams were still in. Sometimes my head swells a little still.

I just read your reply after I posted... in that timespan, the guests at the bottom went from 12 to 7... think you're scaring anyone away? B)

I know I'm probably surrounded by computers, cell phones, electronics, etc. too much between work and home but what are you gonna do? I figure if all the other changes I make in my life won't benefit me because of this, then so be it, it wasn't meant to be... I don't really have anything bad in my bedroom in my new apt though besides my cell phone... put the computer out in the living room area and will probably leave it there...

tom Contributor
Donna, I honestly don't know how you manage to work, I know I would be exhausted at the end of each day too. :(

. . . . I know there are days when just feeding myself is all I am inclined to do.

Yes Donna I honestly do not know either.

<tom rejects prev instinct to check that holster's not empty>

And :( ya Rinne, those days. Too many times b4 candida dx, I'd end up hungry for hrs and just fall asleep hungry on the couch rather than try to do something about it.

But usually finding just enough energy to get fed.

P.S. Loving SJ! Every minute I'm glad it's not 111deg.

And spent hrs jabbering w/ old friend who ALWAYS talks like my most unLymifiable posts. (Well. At least every 3rd sentence)

It was a riot!

Rachel--24 Collaborator

PART 1

Ok...I have a "theory" :)

I think its been a long time since I've posted a theory...seems like I used to have different theories almost daily. :lol:

Yeah...that was back when I used to torture myself w/ questions....thank God for good Dr.'s and real answers. :D

Anyways my Methyl B-12 is coming tomorrow. The pharmacy called me again today to double check everything and it got shipped out a little while ago.

I didnt have to cancel my blooddraw cuz she said the B-12 will be on ice....and she put an extra ice-pack in there since I probably wont be home. :)

So anyways....been reading about the whole methylation thing that Anna and Amy say is probably causing me to have problems with that pathway and with detoxing the metals.

Theres a ton of scientificness....it gets really difficult to understand. Most of the research is with regards to Autism since for some kids the Methyl B-12 is the "magic bullet".

It seems like there can be genetic problems (missing enzymes, etc) which could cause slow methylation or dysfunction with that pathway.

But also...mercury can deactivate enzymes and basically wreak havoc on the pathways and prevent detoxification.

I dont know how they can determine if the problem was already there or if the mercury caused the problem?? :unsure: I guess they cant....probably just like with my discussion with the lady from the dental office yesterday..."You cant PROVE it." :rolleyes:

I'm thinking there might be some weaknesses...I'm sure we all have genetic weaknesses.....but I think its mainly the mercury causing such severe problems with detox. People might start out as slow detoxers due to genetics but the mercury is probably interfering even more with those pathways and further inhibiting detoxification pushing them into autism, CFS, or other chronic illness.

Anyways...

How does mercury toxicity affect methylation?

Mercury toxicity may disrupt this cycle making it practically unsolvable until the metals are removed.

Mercury is highly attracted to sulfur. If there is mercury floating around, it will gravitate to sulfur compounds and tie them up. Any or all of the sulfur reactions will be faulty, and it will be hard to fix unless (or until) you remove the mercury or other metals.

Ok...so this is one suspected problem with me. This is one of the reasons we're looking into LED to treat this sulfur issue first.....to get sulfur residuals out of my body so that chelating agents can be effective. But also the pathways need to be functioning....and I've been having problems with faulty pathways.

Hopefully the Methyl B-12 and folate can help with the pathways.

Mercury is involved in defeating so many pathways. Mercury may lead to the problems with phenol intolerance too. The mercury disrupts the cysteine pathway, so sulfate is limited and is not supplied for detoxing the phenol compounds (or other compounds).

So we know I've had faulty cysteine pathway...thats the one I had to keep getting treated for at BioSET. I'm not sure how its doing now but I'm suspecting I'm gonna need to get treated again. I think the NAC may have messed things up again...I dont think I can eat eggs anymore. :(

I also have problems with all the phenols...I already knew that even before BioSET. Thats basically the preservatives, food dyes, BHT, MSG, salicylates, amines, etc.

I still avoid all those things except the occassional yams. :ph34r:

I think the problems with the yams is that they're high in salicylates.....I'm ok as long as I dont eat them too often. I dont eat anything else high in salicylates

I'm pretty sure I cant tolerate the herbal supplements or veggies because of both the salicylate issue and the mold issue. Salicylates give me a totally different reaction than molds do....and the yam thing isnt a mold reaction.

The problem with salicylates started within the first few months I got sick. I had to stop using all the facial stuff, sunscreens, body scrubs....anything that contained salicylic acid. It was burning the heck out of my skin....causing pain...thats what happens when I eat too many yams.

Sensitivity to phenols like salicylates is definately related to mercury....I read about that way back in the beginning...its written in my mercury toxicity book.

Selenium binds with mercury and parks it in the liver in an insoluble form, as well as aiding the manufacture of glutathione which is a mercury detox pathway. So by adding Selenium you may start making some ground in correcting the pathways.

I'm taking selenium in my mineral supplement. :)

About B12 and Increasing Methylation

There is a "newer" interest in vitamin B12. This is supplemented in two forms. One is called Cyanocobalamin. The other is Methylcobalamin (M-B12) and is the methylated, coenzyme form of B-12 (cobalamin) active in the brain and central nervous system.

The cyanocobalamin form needs to be converted to the methylcobalamin form, so the latter is preferable if possible. B12 is needed to work with folate (folic acid or vitamin B9). B6, B12, and folate have a synergistic effect when given together. The B12 working with the others is needed for good nervous system working and myelin integrity.

So mercury can totally disrupt the methylation cycle and prevent detox but Methyl B12 can increase methylation and working with supplementation of folate and B6....it seems like the pathway problems might improve.

Some Autistic kids get better (indistinguishable from other kids) while on Methyl B-12 shots.

It seems obvious that a deficiency in B12 or a "block" due to mercury toxicity can slow down methylation and the body's ability to detox.

The methyl group allows other metabolic pathways to "go" or work properly.

Some other places that those most likely to be deficient in B12 are those "Individuals with stomach and small intestinal disorders may not absorb enough vitamin B12 from food to maintain healthy body stores"

Also, vitamin B12 can not be manufactured by any plants, and therefore is only found in animal products. So, vegetarians may not consume dairy products or meat which are good sources of B12, and they need to take care not to become deficient. Older people are also likely to become deficient. B12 is getting more recent press because of how it might aid in Alzheimers.

That subject's come up here a few times already....vegetarians have a much harder time detoxing. Sounds like B12 deficiency is another reason for that.

Q: Why would someone necessarily be deficient in methylation other than a lack of the proper nutrients? Is there a genetic variation serious enough that a person with sufficient vitamins would still suffer from insufficient methylation?

A: There are genetic variations that make some people especially deficient or "slow methylators". There are several kinds of such people and variations i.e. several genes and the enzymes they produce that can be inefficient or even missing altogether.

Hmmm....so maybe I've always been a slow methylator and things were building up....maybe the last big mercury exposures were just way too much and as a result the pathway became totally dysfunctional. <_<

Rachel--24 Collaborator

PART 2

If you are Gluten-free Casein-free this probably becomes much more of a concern because you loose primary sources of the B vitamins including folate and B12, amino acids and minerals;There is quite high B12 in milk. If you have an injured gut by any means, you sharply reduce your ability to absorb B12. If you go grain and dairy free in addition to this, you are very likely to be B12 deficient.

Dont know how true this may be....BUT....this is where my theory comes in!!!! :)

For some reason I thought about Sherry when I read this. She had wondered why she got alot worse when she went on the diet. :huh:

She said her Lyme symptoms came back.....everything started coming back once she went strict on the diet. <_<

She's also mercury toxic. I think she said shes been chelating for 2 years but the levels arent coming down...she still has high levels of mercury.

So....I'm wondering if there might be a problem with her pathways...maybe shes a slow methylator??...that would cause her to not be able to detox the metals efficiently. It could also be because of sulfur residuals in the body...that would prevent the chelators from doing their job.

So if shes a slow methylator the change in diet might have greatly reduced her B12 and furthur slowed down methylation....making her even less able to detox.

So if she's a slow methylator AND shes mercury toxic....a deficiency in B12 caused by diet change might have slowed down detox and allowed the Lyme toxins to start building up again...causing symptoms.

With mercury still in the body the environment is still favorable for the microbes.

So thats my theory....dont know if its plausible...I dont know what her diet was like when she went gluten-free....I dont know if she also went off dairy. Heck...I dont even know if any of this makes any sense?? :rolleyes:

I think its interesting though...and theres MORE...

Histamine levels may be a good indicator of whether someone is an over or under-methylator.

High histimine = under methylator :o

Q:How can I lower the histamine level, and the results of a histamine reaction?

A: Some people who have trouble converting sulfur to sulfate, and who have a sensitivity to certain foods and chemicals because of this, often times develop a high histamine level.

I think the Feingold Diet, No-Fenol, or avoiding certain phenolic and high salicylate foods may help the sulfation problem and subsequently lower the high histamine level.

So basically thats the diet I studied and went on because I react to all those foods!

I was wondering WHY would histamine levels tell you about methylation function?

One way histamine is de-activated (eliminated) is by receiving a methyl group from SAMe. So if there is low methylation, there is low SAMe, and the histamine levels are higher because of the lack of methyl groups to deactivate it.

Q: Where does this histamine come from?

A: One source is when the amino acid histidine looses a carboxyl group. Some bacteria can faciliate this conversion too.

So if you have a bacteria overgrowth, it may be using up histidine and converting it to more histamine. Another big source is directly from foods. Some people may have a problem eliminating histamine from their foods and this causes reactions which LOOK LIKE allergies, but are not true IgE mediated allergies.

You may see a histamine reaction which is just too high levels of histamine and not because an antigen caused an immune reaction to something.

So thats exactly what happens to me....with the foods and also when I get upset....like the episodes I've had at work that trigger immediate reactions.

Anna had said it was because of too much histimine circulating through my body....alot of things are triggering those histimine reactions.

If someone has low methylation (maybe B12 deficiency or metal interference, etc.) then you may have high histamine levels and a problem eliminating the additional histamine from foods. You would also have more chemical running around in the body triggering histamine reactions.

That is exactly whats going on with me....I'm allergic to *everything* (but not really allergic :rolleyes: )....everything triggers histimine reactions (swelling, burning, headache, etc).

What are histamine containing foods?

Here is a great site on what foods contain what chemicals. The first link tells about "histamine intolerance" and amine foods:

Open Original Shared Link

Notice that many of the foods are often considered "phenol" foods even though they are not high in salicylates or phenols. They are high in amines/histamine. There are also foods that trigger a histamine reaction. This means that they directly cause a release of histamine - in some people, this includes the natural salicylates or other common additives:

So its really interesting how all these topics were discussed in great length during the early parts of this thread (salicylates, amines, phenols, sulfur, histimines) and here it all ties in together. Its all related to the mercury and the pathway/enzyme dysfunction.

and....if you actually read ALL this....WOAH...congrats to you!! :lol:

Double congrats if you actually understood it!! :P

tabasco32 Apprentice

Hey Rachel

I was wondering how your doctors know your pathways aren't working? Also would it be wise for me to eat food high in sulfur like broccoli, cauliflour or eggs? Their so much information. I am scared now and don't know what to do. :(

tom Contributor

Could that mysterious (to me anyway) retracing be involved w/ the situation a post or few up??

Rachel--24 Collaborator
Could that mysterious (to me anyway) retracing be involved w/ the situation a post or few up??

Unmasking?? Are you talking about Sherry's situation?

It could be involved in new sensitivities appearing....but she didnt just have new sensitivities showing up...her health deteriorated...she relapsed back into her Lyme Disease...worse chemical sensitivities, etc.

Thats not unmasking (or retracing)....thats just plain getting worse.

Gluten-free diet (if gluten is a problem) is suppossed to make you feel better...not worse.

AndreaB Contributor

Wow Rachel!

All very interesting. We don't eat dairy either and don't eat a lot of grains. I wonder what our levels are like. We do take multi's though.

I must get off the computer.

See you all tomorrow afternoon.

Rachel--24 Collaborator
Hey Rachel

I was wondering how your doctors know your pathways aren't working? Also would it be wise for me to eat food high in sulfur like broccoli, cauliflour or eggs? Their so much information. I am scared now and don't know what to do. :(

The Dr.'s know my pathways arent functioning normally because of the fact that I'm highly toxic. If my detox pathways were up to par....I wouldnt be this toxic and I wouldnt be reacting to everything.

Also I've had alot of energetic testing (BioSET) which focused on my pathways and basically identified all the problems in the pathways....then I would get treated to try to correct those problems.

Sometimes the problems would come back....because I'm still carrying around all these heavy metals....so the pathways would become dysfunctional again and I'd repeat the treatments to try to correct it all over again.

Those problems were because my immune system had started reacting to the actual things necessary to keep the pathway functioning. Stuff like sulfur, cysteine, folic acid, B- vitamins, etc.

My immune system got reactive to everything and so that pretty much messed up the function of those things in my body.

The treatments were to stop my immune system from reacting to these things so that they could do their job and help me detox.

I still need to do alot more to get the pathways totally functioning. Thats why they're trying the Methyl B-12 shots...and then I'll be adding in Folate 2 weeks from now.

They have alot of experience with this stuff....pretty much experts on it....and they treat the Autistic kids who have the same problems.

They can get a pretty clear picture of whats going on from my history, my symptoms and from the testing they've done. Its been an ongoing thing though....they've been working with me since October of last year (9 months now)....except Dr. Amy who I just started seeing in March.

I am scared now and don't know what to do.

Dont get scared....you're just starting out...you just saw your Dr. this week. You still need to get your fillings out. Listen to your Dr. and follow her instructions.

BUT...write everything down....keeping a journal will help you SO much. You're not going to be able to tolerate every supplement. You need to do one thing at a time and pay attention to how your body responds to each thing.

Right now all you really need to focus on is getting your immune system stronger, building up some minerals and things to help you detox while your going through your removals.

You cant worry about everything all at once....its one step at a time...right now your focus is getting the amalgams out and helping your body cope with it...so that you dont get sick like before. This is what your Dr. is trying to get you ready for.

Yes...eating eggs, broccoli, garlic, etc...is all good but ONLY if you can tolerate those foods. If they cause symptoms or make you feel worse you should not eat them.

I wouldnt eat a ton of those sulfur foods but a little at a time is good if you can tolerate it.

Dont allow yourself to get too stressed out....just stay focused on where you're at right now....the rest will come later. Dont overwhelm yourself.

I'll still be around when you're done with the amalgam removals and I can repeat some of this stuff for you later but right now just pay attention to the important things you need to be doing right now...like drinking lots of water, taking the supplements, keeping your bowels moving, etc.

Try to think positive thoughts.....listen to your ocean waves and relax....it really will help you. :) Stress always makes things worse...trust me on that.

Rachel--24 Collaborator
See you all tomorrow afternoon.

Andrea (and Talitha).....GOOD LUCK!!!!! :wub::wub::wub:

I'll be thinking about you guys all day. Cant wait to hear all about it...have a safe trip. :)

rinne Apprentice
ok-

i will try to post about my appt. today, but i will probably leave stuff out becasue i am really tired.

I first had my appt. with the doc and that went really well. I talked to him for over an hour and went thorugh my whole history. We discussed lyme along with worms and parasites as the possible "root" of my illness. We went over some of my old tests- lyme and c d 57 etc.

.....

Miamia, I'm glad this doctor was so thorough, sorry it was such an exhausting day but hopefully the answers will more than make up for that. :)

....and....if you actually read ALL this....WOAH...congrats to you!! :lol:

Double congrats if you actually understood it!! :P

:lol:

Read through, but I can't say I'm positive I completely understand but everything you said made sense to me. :)

Andrea (and Talitha).....GOOD LUCK!!!!! :wub::wub::wub:

I'll be thinking about you guys all day. Cant wait to hear all about it...have a safe trip. :)

Yes Andrea, have a safe trip. I look forward to hearing how it went. :)

mftnchn Explorer
PART 2

Dont know how true this may be....BUT....this is where my theory comes in!!!! :)

For some reason I thought about Sherry when I read this. She had wondered why she got alot worse when she went on the diet. :huh:

She said her Lyme symptoms came back.....everything started coming back once she went strict on the diet. <_<

She's also mercury toxic. I think she said shes been chelating for 2 years but the levels arent coming down...she still has high levels of mercury.

So....I'm wondering if there might be a problem with her pathways...maybe shes a slow methylator??...that would cause her to not be able to detox the metals efficiently. It could also be because of sulfur residuals in the body...that would prevent the chelators from doing their job.

So if shes a slow methylator the change in diet might have greatly reduced her B12 and furthur slowed down methylation....making her even less able to detox.

So if she's a slow methylator AND shes mercury toxic....a deficiency in B12 caused by diet change might have slowed down detox and allowed the Lyme toxins to start building up again...causing symptoms.

With mercury still in the body the environment is still favorable for the microbes.

So thats my theory....dont know if its plausible...I dont know what her diet was like when she went gluten-free....I dont know if she also went off dairy. Heck...I dont even know if any of this makes any sense?? :rolleyes:

Hi, I popped in here today and saw you thinking of me, LOL.

Got out my Doctor's Data screens, and found a couple: In 2004:

Mercury 6.6 (reference <4) (This is elevated, not highly elevated)

Lead 8.8 (reference <18)

Tin 11 (reference <10)

Sulfer 460 (reference 280-1500)

In Jan 2007:

Bismuth 190 (<15) (I was taking bismuth for h pylori treatment, now think I am allergic to it)

Lead 6.8 (reference <5)

Mercury 4.4 (reference 4)

Tin 3.5 (reference <10)

Sulfur 490 (reference 280-1500)

So one question--does this compare to some of the others of you who have mercury problems? Right now my level is barely elevated according to the test results.

Rachel, yes I am both gluten-free and milk free, except I have restarted transfer factor that has a small amount of milk.

I'll try to read back through to try to pick up about the sulfur and stuff. This is all new to me.

I am clearly herxing on Flaygl so I know that the lyme is active again in my body.

My current theory is that I am indeed celiac (no blood work and biopsy) and that this has undermined my immune system that is now "waking up" slowly as I begin to heal, and rediscovering more stuff here like lyme. I think the retracing idea that Carla mentioned makes some sense.

Yes, I might not be detoxing well. Candida is an issue at some level. My intestine doesn't work very well though coffee enemas help majorly. Taking magnesium now 1000mg in the evening by itself, and after a week today I had stool in the morning. My doc (allergist) said there isn't a ceiling on how much to take (until I get diarrhea from it.) So I am going to go up a step every week until I have a BM daily.

After talking to him today I am going to try eliminating a food group for a week then a challenge and see if now that I am gluten-free I will be able to find and eliminate other foods that are a problem. Start with grains, secondly legumes, thirdly nightshades.

tom Contributor

Isn't the term retracing all about relapses?

tabasco32 Apprentice
The Dr.'s know my pathways arent functioning normally because of the fact that I'm highly toxic. If my detox pathways were up to par....I wouldnt be this toxic and I wouldnt be reacting to everything.

Also I've had alot of energetic testing (BioSET) which focused on my pathways and basically identified all the problems in the pathways....then I would get treated to try to correct those problems.

Sometimes the problems would come back....because I'm still carrying around all these heavy metals....so the pathways would become dysfunctional again and I'd repeat the treatments to try to correct it all over again.

Those problems were because my immune system had started reacting to the actual things necessary to keep the pathway functioning. Stuff like sulfur, cysteine, folic acid, B- vitamins, etc.

My immune system got reactive to everything and so that pretty much messed up the function of those things in my body.

The treatments were to stop my immune system from reacting to these things so that they could do their job and help me detox.

I still need to do alot more to get the pathways totally functioning. Thats why they're trying the Methyl B-12 shots...and then I'll be adding in Folate 2 weeks from now.

They have alot of experience with this stuff....pretty much experts on it....and they treat the Autistic kids who have the same problems.

They can get a pretty clear picture of whats going on from my history, my symptoms and from the testing they've done. Its been an ongoing thing though....they've been working with me since October of last year (9 months now)....except Dr. Amy who I just started seeing in March.

Dont get scared....you're just starting out...you just saw your Dr. this week. You still need to get your fillings out. Listen to your Dr. and follow her instructions.

BUT...write everything down....keeping a journal will help you SO much. You're not going to be able to tolerate every supplement. You need to do one thing at a time and pay attention to how your body responds to each thing.

Right now all you really need to focus on is getting your immune system stronger, building up some minerals and things to help you detox while your going through your removals.

You cant worry about everything all at once....its one step at a time...right now your focus is getting the amalgams out and helping your body cope with it...so that you dont get sick like before. This is what your Dr. is trying to get you ready for.

Yes...eating eggs, broccoli, garlic, etc...is all good but ONLY if you can tolerate those foods. If they cause symptoms or make you feel worse you should not eat them.

I wouldnt eat a ton of those sulfur foods but a little at a time is good if you can tolerate it.

Dont allow yourself to get too stressed out....just stay focused on where you're at right now....the rest will come later. Dont overwhelm yourself.

I'll still be around when you're done with the amalgam removals and I can repeat some of this stuff for you later but right now just pay attention to the important things you need to be doing right now...like drinking lots of water, taking the supplements, keeping your bowels moving, etc.

Try to think positive thoughts.....listen to your ocean waves and relax....it really will help you. :) Stress always makes things worse...trust me on that.

Rachel,

You don't know how much of what you said means to me.It really means so, so much.Your right stress does make things worse. I will try to just live in the now and do as my doctor and body tell me what to do.

Thank you for calming my nerves as I tend to get myself more sick with worry. Just like my Dr. said, baby steps is what we are going to take.

I think of you as a good friend. ^_^

Lisa M.

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    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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