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Omg...i Might Be On To Something


Rachel--24

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dlp252 Apprentice
Oh...Donna....I'm pretty sure the tetanus shot does have thimersol. I got a tetanus shot awhile back...I didnt get sick from it though...I guess my body wasnt ready to break at that time. :P

Good thing you passed it up. :o

:o Phew! Especially after reading what Charlie posted below, lol. See, someone is looking out for me even if I can't quite do it myself, lol. :lol:

When I had my one tooth extracted Dr. A. sent me to a surgeon for that.

I've been meaning to ask (or maybe I did and just forgot the answer), did you have anything put in its place? Or is there just an empty space where that tooth was. :P

the tetanus shots do have thimerosal... it's the TT (tetanus toxoid) vaccine in table 3 on this site: Open Original Shared Link

unless you know otherwise about a specific vaccination, I would also assume that all adult vaccinations contain thimerosal... I'm sure some adult vaccs don't have mercury but the CDC only agreed to take the mercury out of pediatric vaccines (of course it's now in the flu one that's recommended for kids 6 months to 5 years annually)....

WOW, thanks so much for that link! That's a great chart.

donna, the other test for mercury that I couldn't remember is a test for at least certain types of porphyrins... I don't really know anything about the testing, just that they look for the presence of certain porphyrins... you can google porphyrins and mercury and get plenty of information.. I think UPPA (urinary porphyrin profile analysis) is the testing used... I think I've now written porphyrins enough that I won't forget the test again for a while B)

when I saw my nutritionist a week ago, I asked her what her opinion was on the different kinesiology-related testing... she didn't know much about bioset but she had some interesting opinions on NAET... she said that when a lot of western medical doctors start converting over to the more alternative approaches and treatments, they want to know the science behind any testing and whatnot... in the case of NAET, I guess there isn't too much firm science behind it but she was saying it's hard to argue with the results... she mentioned that in some cases people who had anaphylactic reactions to certain foods were able to eat them without incident afterwards... I'm sure it also depends on the practitioner at least to some extent...

either way, it was interesting to me as her view was in tune with what I feel about the subject as of now.. I'm still on the fence, probably mostly because I don't feel I have enough knowledge on the actual testing methods and the details behind them... but if it works and produces beneficial results (assuming I can hear that from people who have seen any practitioners I might check out), then I guess it doesn't really matter if I don't really know the reasons why...

That's where I'm at too, lol...don't really know the reasons why it works, but it seems to be so accurate. Here is the info from the booklet I received from Delicate Balance, written by Anna Manayan (for BioSET)...it is specifically talking about the blood vial, but there is also the general gist of how it all works. (My comments are in brackets)

"Part Two of The Initial Exam

Auto-Immune/Chronic Inflammation to Self

The computerized testing sends a signal out to the body and registers a block or no block in the electrical signal. This will show up as a drop or no drop [i think this is the audible tone that we hear...when we have a reaction there is a definite drop in the sound, but I'm not sure]. Signals are sent from the comptuer to different organs and meridian systems and we read your body's response to those signals.

We first test the blood vial to see if the body shows a reaction to the blood. When we place the blood vial on the testing plate, the body does not know what it is. It is like testing an apple. If your body blocks the signal, this is intepreted as an immune sensitivity to anything placed on the testing plate. What this means to us is that the patient is testing positive for some type of immune reaction to the substance on the plate. In the case of a patient's own blood vial, this means that there is "something" in the blood that the body's immune system has not come to terms with that is contributing to an immune response. This could be an inflammatory reaction to a toxin in the blood, or a pathogen. We have found common culprits to be chronic candidiasis, chronic low grade bacterial infections (strep, measles, staph, lyme etc.), chronic low grade viral infections (as in chronic fatigue viruses such as echo, cytomeg and epstein barr), or chemical or heavy metal toxicity.

No one knows the exact mechanism of how the nervous system re-programs the immune system, but by de-sensitizing the patient to their own blood, we boost that patient's immune system to coping with the offending agent in the blood. Patients' energy begin to improve often after that single treatment especially when reactive to their own blood. Also, unless the patient is "clear" to their own blood, we cannot get accurate computerized readings on the remainder of the testing because the blood acts as a "filter" and affects the electrical signs of the body to the substance being tested."

...

They always use my blood vial anytime I'm tested there. One time she had just started testing me, and something wasn't working correctly and then she noticed she hadn't put the blood vial on the testing plate. :) I still don't know how something in a little glass vial can register on a computer testing plate, but I'm willing to run with it, lol.

Yesturday I had my first chiropractor appt. I decided to try this because the pain in my gut- escessive pressure is definitly putting stress on my back as well. It was interesting because he felt a lot of misallignment and especially alot of issues on my left side which is where I feel most of my pain along my rib cage in the front. The chiropractor does not take my insurance but my father goes to him and he takes his so he has agreed to just put me under my dad so I just have small co pay- isn't that amazing!! So he thinks for now I should try to come in 2 times a week and see if by ]easing some of the pain in the back I can ease some of the pain in the front. I definitly felt looser after the appt. So I am curious to see if it can be beneficial for me.

I think it's been helping me a lot, so I'm anxious to see if it helps you too!


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dlp252 Apprentice

And, I found this on her website (regarding BioSET):

"For more information on the technology behind the computerized diagnostics and energy medicine component, read Virtual Medicine, which will discuss the physics behind bio-energetic medicine."

CarlaB Enthusiast

Miamia, I'm glad the chiropractic is working out for you. It's always been helpful to me.

NoGluGirl Contributor

Dear Donna,

Wow! That is so neat! That testing really sounds cool! Now, that is BioSET? Or is it NAET that Charlie mentioned? This is great info!

Dear Mia,

We are glad to hear a payment plan could be made out possibly. Chances are, if your father was accepted, you will be too! The chiropractic adjustments seem really helpful. I bet I am all out of alignment. My jaw is, so I assume that could throw off the rest of your body too, right?

Sincerely,

NoGluGirl

dlp252 Apprentice
Wow! That is so neat! That testing really sounds cool! Now, that is BioSET? Or is it NAET that Charlie mentioned? This is great info!

Sorry, that was BioSET, but I've also heard good things about NAET.

AndreaB Contributor
So he thinks for now I should try to come in 2 times a week and see if by ]easing some of the pain in the back I can ease some of the pain in the front. I definitly felt looser after the appt. So I am curious to see if it can be beneficial for me.

Yay on the chiropractor and the co-pay! Keep us posted on this and the other doctor as you can.

Donna,

That post about bioSET was interesting.

Rachel has a gap where that tooth was.

Gotta get T started on her schoolwork. :) I'll be back. I always check this thread millions of times a day. :P My last batch of horses ends tonight as well. :)

dlp252 Apprentice

I think I'll have to list some things on eBay as well...I just made an appointment with the LLMD for testing and YOWZA is it expensive! :blink::lol:


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AndreaB Contributor
I think I'll have to list some things on eBay as well...I just made an appointment with the LLMD for testing and YOWZA is it expensive! :blink::lol:

Every little bit (or lots bits) helps.

dlp252 Apprentice

I'm hoping my insurance will cover the 70% they usually pay for out of network stuff, but the upfront cost is very :o:lol:

Course, getting reimbursement from my insurance company is like pulling teeth, very painful, but they have paid some of the claims I sent in.

Rachel--24 Collaborator
I think I'll have to list some things on eBay as well...I just made an appointment with the LLMD for testing and YOWZA is it expensive! :blink::lol:

Is your appt. with Dr. S.??

Yeah....the initial appt. is not cheap. :o From what I've heard its ALOT cheaper than what Dr. G charges.....she's in the same office but only treats Lyme. I wont be seeing her. :P

Rachel--24 Collaborator
Rachel has a gap where that tooth was.

Yeah....I got a hole in my mouth. :D

My friend works in a dentist office....she was telling me all the stuff they could do but I just really didnt feel like making a decision until I figured out why I was sick. I'm glad I didnt go ahead with anything...with everything going on with my head...I think its best that its just left alone.

You cant see it (its in the back)...even if I smile really huge...you still cant see it. :D

The only reason I'll even put something there is so the rest of my teeth dont shift. My teeth are all straight and I dont wanna mess it up. :P

Rachel--24 Collaborator

Donna...thanks for posting the scientificness on BioSET. :)

I had never read that before.

I didnt know exactly why the blood vial is always on the plate and then in the glass....but I knew it had to be an important part of the "desensitization" process. :P

I have to read it again later when I'm not eating and in a rush....so that I can try to wrap my brain around the whole thing. :rolleyes:

Rachel--24 Collaborator

Ok...so the oral surgeon I wanted to see has retired. :(

So thats why I couldnt get through to his office...there is no office to get through to. :rolleyes:

I was wanting to see Dr. Hussar...in Reno.... he has the most experience with cavitations and is also well known in the Lyme world....but now he is not an option. :(

Anyways...I got some new stuff I'm working on. ;)

I'll post about it later when I get more details. :D

I want to go see another Dr....anyone who's researched Lyme stuff has probably heard of him....but I will have to travel to see him. I think he's in Texas or Arizona....so a very short flight.

Anyways....this is not really relating to cavitations but he would now who does do this stuff and could probably tell me where to go...or how to proceed. I just found out some stuff this morning so havent had the opportunity to really do any research yet.

I have to find out more before I can make a decision if its worth my while or not....sounds really promising though. :)

dlp252 Apprentice
Is your appt. with Dr. S.??

Yeah....the initial appt. is not cheap. :o From what I've heard its ALOT cheaper than what Dr. G charges.....she's in the same office but only treats Lyme. I wont be seeing her. :P

Yep, Dr. S. They quoted me the price for the first visit and the second visit (to discuss results), and those prices didn't even including the actual lab work.

Yeah....I got a hole in my mouth. :D

My friend works in a dentist office....she was telling me all the stuff they could do but I just really didnt feel like making a decision until I figured out why I was sick. I'm glad I didnt go ahead with anything...with everything going on with my head...I think its best that its just left alone.

You cant see it (its in the back)...even if I smile really huge...you still cant see it. :D

The only reason I'll even put something there is so the rest of my teeth dont shift. My teeth are all straight and I dont wanna mess it up. :P

With everything you've been posting about the dental stuff I think it's a really good thing you didn't do anything yet. My teeth are very crowde, so I think I could use a little space. :lol:

Donna...thanks for posting the scientificness on BioSET. :)

I had never read that before.

I didnt know exactly why the blood vial is always on the plate and then in the glass....but I knew it had to be an important part of the "desensitization" process. :P

I have to read it again later when I'm not eating and in a rush....so that I can try to wrap my brain around the whole thing. :rolleyes:

You're welcome. They just gave this little booklet to me a couple of visits ago...I think this is what they're giving to new patients now...it has a lot of the same stuff they gave us on our first visit but has a lot of explanation of things...what I posted, and how to take some of the supplements and terrains and how to add stuff in.

AndreaB Contributor
Ok...so the oral surgeon I wanted to see has retired. :(

So thats why I couldnt get through to his office...there is no office to get through to. :rolleyes:

He's the one that was listed on my sheet from my doctor too. :(

If you go to dental help website it lists doctors who do the cavitat. That's how I found mine and he does surgeries as well. I would assume that these doctors would know how to read xrays as well.

dlp252 Apprentice
Ok...so the oral surgeon I wanted to see has retired. :(

So thats why I couldnt get through to his office...there is no office to get through to. :rolleyes:

Well, that's a huge bummer, hope the other stuff works out then.

Rachel--24 Collaborator
He's the one that was listed on my sheet from my doctor too. :(

If you go to dental help website it lists doctors who do the cavitat. That's how I found mine and he does surgeries as well. I would assume that these doctors would know how to read xrays as well.

From what I understand the x-rays are hard to read....only a handful of people in the country who are really good at it....Dr. Hussan was one of them.

I dont think I'm willing to pick a random Dr.....I'd rather wait to find out whos really got alot of experience. Anyone can buy a cavitat device and use it....but that doesnt mean they have alot of experience. <_<

I want someone who knows how to read the x-rays....I'm not too convinced the cavitat is totally accurate.

CarlaB Enthusiast

Rachel, another reason, besides teeth shifting, for you to get the space addressed is that the opposing tooth can grow to fill in the space. As part of my TMJ treatment, my jaw was moved and the back teeth no longer touched. I wear a nightiime appliance in addition to my braces which makes contact with most of my teeth that don't touch, but the very back teeth were not making contact with anything, so they grew to fill in the newly created space, which is what we wanted them to do.

Why are you thinking of going to another doctor? I thought you were satisfied with the care you are receiving from your current doc.

Donna, it is expensive, so is the testing. The two Western Blots are $190. The co-infections test is another almost $400. My doctor did a lot of other bloodwork, too.

Rachel--24 Collaborator
Why are you thinking of going to another doctor? I thought you were satisfied with the care you are receiving from your current doc.

Carla,

Yup...I'm totally satisfied with everyone I'm currently seeing. :)

I'm definately not ready to fire anyone yet. :P

How different things are for me now compared to a little over a year ago...when I wanted to fire EVERYONE....and I did!! :lol:

The thing is everyone I see offers me something different...yet they are all on the same page...if that makes sense?? :unsure:

BioSET is one thing that has been helpful to me (Anna is a wealth of knowledge), Dr. Amy is experienced LLMD and does ART (something I want to continue doing), My LLMD (Dr. S.) is experienced with pretty much everything and can also provide prescriptions or conventional stuff if necessary.

I'm always open to new things.

Seeing Dr. Hussar would have been great since he was not only an oral surgeon experienced with cavitations but also LLMD.

Anyways I was emailing a patient of Dr. K.'s to find out why the heck I couldnt get through to Dr. Hussars office....thats how I found out he retired. She asked if I'd thought about seeing Dr. Lee Cowden??

No...I hadnt thought of it...but I'd heard of him...from all of my Lyme research.

She said he does LED....told me to look it up if I wasnt familair with it. She's fully recovered but said she wished LED was around when she was getting treated....she would have done it.

I looked it up...its a fairly new type of detoxification treatment developed by Dr. Cowden.

LED = Laser Energetic Detoxification

It sounds really promising for me. For one thing the first LED treatment is for sulfur....to detox sulfur from the body so that furthur detox can be successful. I think this might be useful for me since I seem to have problems with excess sulfur.

Something like this can save me alot of time if it works for me. It can also get me to a better place where I'm able to also be able to handle chelating agents such as DMSA or DMPS.

Its totally non-invasive so it wouldnt hurt for me to try something like this.

Heres some links explaining what it is and how it works...

Open Original Shared Link (check out the success stories on the righthand side of this page)

Open Original Shared Link

So anyways...since I'm doing alternative stuff I can pretty much incorporate other things into my treatment. None of it can hurt...everyone has something different (and useful) to add to my treatment plan.

Tonight I asked Denise at BioSET if she was familair with LED. She said she'd heard of it and that it can detox lots of different things...not just heavy metals....which is basically what it says on the websites as well. She said she's not familiar with Dr. Cowden but definately has heard of LED.

She said if she were me she'd give anything a try.....plus I'm really determined. :P

I still need to find out alot more...and I plan on asking Anna, Dr. S, and Amy what they know about it.

The person who told me about LED also told me that Dr. Amy will be doing LED eventually too...I dont know if shes in the process of getting trained for it or plans on it sometime soon. Anyways...it would be great if she does start doing it since I'm already seeing her. :)

I still gotta find out things like cost too...I got alot of stuff I need to find out about LED before I make a definate decision....but so far I'm all for it! :D

If anyone has time to read the links...let me know what you think. B)

Rachel--24 Collaborator

Donna,

I just wrote a long post to you.....and then the site went down and it got lost. :(

Anyways, tonight I had asked Denise about why Lyme would not show up in BioSET for Donna (you :P ) and yet it showed up very clearly in ART. :unsure:

She gave a good (and understandable!! :o ) answer......which I had posted and lost. :angry:

Anyways...I will have to get back to that later...because I'm mad at the computer and chocolate ice cream and a warm cozy bed are calling my name. :P

MiaMia...I agree that its totally awesome of the chiropracter to put you on your Dads insurance!! WAY COOL! :D

I'm happy for you and keeping my fingers crossed that you will get some relief from your symptoms. :)

tabasco32 Apprentice

Hi rachel,

About rosecea sp? I get this after I take a shower or after I eat. Is this normal? This started happening also with the bladder and bowel stuff. Is this a neurotoxin happening. I was always wondering about this. My face gets blotchy red after shower and just red after I eat. Sometimes my neck and chest as well.

Lisa

NoGluGirl Contributor

Dear Lisa,

I get that as well! I was diagnosed with eczema, though. That may be what you have instead of rosacea. Yeast overgrowth can cause it. My hands always have it, too. It is so painful sometimes. Hot and cold have an effect on it. Hot water especially makes it worse. I cannot stand even room temperature water on my hands when washing them, though. It feels cold to me! My hands also get scaly. I have used hydrocortizone cream in the past, but even that started to burn. :( Sometimes this stupid rash pops up out of nowhere for no apparent reason on my neck and chest! :blink:

Dear Donna,

That BioSet info was really interesting! I do not know anything about NAET. Do you have any links? Is it similar to BioSet and ART? It is not something I am familiar with. I only heard of it when Rachel mentioned it before and then Charlie posted about it.

Dear Rachel,

LED might help you. It sounds like it could really be easier on your body, too. Some other detox treatments really make you feel rough. This may really get some of the nasty stuff out! Then you could feel better. ;)

Dear Mia,

It is so wonderful you will be able to see that chiropractor! It seems that the adjustments are helping already. That is a very good sign! Pain like that has to be fixed. You cannot function feeling like that!

In other news...our Yorkie had another set of seizures today. :( The poor little fella. He had three in about a half hour period. They were really bad. The first one lasted maybe ten minutes, and he began drooling a whole lot, but then it seemed to settle down. He jumped off of the sofa.

I called Mom, who was out running an errand, and told her. Well, while I was on the phone with her,

he jumped up on the sofa again to tell me it was coming on, and I petted him but then his legs gave under like they often do. He was laying there and he peed on the poster I had made for my best friend. (I really should not give it to her now.) Even so, I could not be angry with him. This was obviously not done on purpose.

My miniature schnauzer used to lose control of her bladder when she collapsed, too. She had milder seizures, but they were caused by heart trouble. It would look as if she was deflated. It was so sad.

Dart was all wet, but I had to hold him, because I could always change shirts if need be, so I held him and rocked him back and forth. It really helps him calm down.

His legs just wouldn't work for a while. Finally, when he felt like he could walk, I put him on the floor.

He stuck close by. I had a bad feeling another seizure was coming. Sure enough, within a few minutes, he began shaking again. So, I had to pick him up and rock him to try and calm him down. He cries in pain when they occur, too.

After the seizures finally stopped for good, he was not acting quite right. He went into the bathroom and puked a ton on the rug. It was white and foamy, and included only maybe a couple peices of his food, and a wad of my hair. I told Mom I want us to do a tox panel on him. I think he has arsenic poisoning, because he licks the wood around the house. Copper arsenate is often in wood treatments.

She said "He has to be groomed next week, make an appointment." I told her, I need to go to the doctor next week. She says "The dog has to be groomed!" I got so spinached off! :angry: I told her "You know how to bathe a dog, mother! It is not that hard!" I need to see my doctor. Do you think she would be open to the possibility of Lyme?

Sincerely,

NoGluGirl

miamia Rookie

Donna-

that was a really good explanation of BioSet- Thanks. Now that you have deiscovered the lyme what treatments do they want to put you on.

Rachel-

The LED sounds interesting- I like how nonevasive it is and how you don't have to take anything- I scanned noth links but I have to read them again- God I miss the days when i didn't have to read everything 10 times before fully absorbing it!!

Today I ahve day 2 of chiropractor- hoping it goes well.

dlp252 Apprentice
Donna,

I just wrote a long post to you.....and then the site went down and it got lost. :(

Anyways, tonight I had asked Denise about why Lyme would not show up in BioSET for Donna (you :P ) and yet it showed up very clearly in ART. :unsure:

She gave a good (and understandable!! :o ) answer......which I had posted and lost. :angry:

Anyways...I will have to get back to that later...because I'm mad at the computer and chocolate ice cream and a warm cozy bed are calling my name. :P

Well poop! :lol::lol: I'll be waiting anxiously for the explanation cuz I certainly don't understand it and it's having a negative affect on my thoughts about me having lyme. :lol:

That BioSet info was really interesting! I do not know anything about NAET. Do you have any links? Is it similar to BioSet and ART? It is not something I am familiar with. I only heard of it when Rachel mentioned it before and then Charlie posted about it.

I'm afraid I don't know much about NAET. I think some people on this site have tried it with good results though.

Wow, poor little yorkie (Dart?)! That sounds really scarey. I adopted my last dog knowing she was old and sick, but she just got worse and worse. I felt so bad for her cuz she would just go stand with her head in a corner, or she'd just walk up to me and put her head on my leg...I think those were a type of seizure. I'd try to speak very softly and soothing which seemed to help.

Donna-

that was a really good explanation of BioSet- Thanks. Now that you have deiscovered the lyme what treatments do they want to put you on.

Well, according to the ART guy, my supplements seem to be helping, and with the addition of a couple of supplements that he recommended and tested me for, those would really help. I may be able to just go the natural route first. I'm going to see Rachel's LLMD on the 24th for consultation and the western blots and he might have other ideas though. I was probably fortunate to have been on high doses of antibiotic for nearly 3 years, so that may have taken the edge off the lyme if I've got it, and I'm hoping more antibiotics will not be necessary. The supplements are expensive, but probably not as expensive as IVs and antibiotics, lol.

CarlaB Enthusiast

Rachel, LED sounds like it could be beneficial to you. I didn't read the links, but I'll look at them later ... I'm going to try to get to the gym by 10:15 so I have time to come home and eat/take supplements, wait, then sauna, and still get the girls to their flute lesson on time! My days aren't busy, but involve a lot of waiting for food to digest! LOL I'll read it then!

I wish you had access to a far infrared sauna. It's amazing how different they are to a regular sauna ... and the heavy metals are detoxed, too, through the sebacious glands. You don't get any heave metal detox in a regular sauna. Since my LLMD doesn't think I'm strong enough right now for the heavy metal therapy, this is good for me ... I feel that I'm doing something. Plus, anything to help take the load off my liver and kidneys is good!

Morgan and I took a regular sauna last time I visited her. I didn't like it, there's no way I'd do that every day. She told me that if mine was like that she'd NEVER take a sauna. I thought it was a bunch of hype that they are that different, but it's not, they are.

My old voodoo doctor does one of those alternative treatments now. I don't remember what she said she was getting, but it was going to replace her use of hair analysis.

I'm probably going to take Chloe to her for candida, allergy, and Lyme testing. Chloe has such bad learning difficulties, yet she's very smart. It's not just me being her mom, even her teachers agree that she's smart, but just can't do the work. I want to rule out these problems since they could be the cause of her learning difficulty. In the meantime, we're working with the teachers to get her into special ed. It will be good because it's not like it was when I was a kid, and it will allow her more time on standardized tests, including things like the SAT. Even if she gets better from it, that's a good thing LOL. ;)

I'll check out what she does when I take Chloe in there. Just because I think she's too alternative for my taste, doesn't mean that some of the things she does aren't valuable. :) She was purchasing it last fall, so by now she should have some experience with it. All I remember is that she said it had something to do with the hand in some kind of equipment. Does that sound familiar? She said that they did it on everyone in the office. One woman had her lungs show up as a problem area, so they all thought it was bogus. Then she confessed to being a closet smoker!

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    • lmemsm
      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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