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Omg...i Might Be On To Something

Rachel--24

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tabasco32 Apprentice
tabasco32
Posted

Yes Rachel, great news! Wouldn't this be a fantastic breakthough for all of us? Oh we will keep our hope. ^_^

It does seem like there is some missing piece huh? I knew it all along. :P

So epsom salt bath's are safe right?

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Green12 Enthusiast
Green12
Posted

I see what the problem is Birdy, it won't let you search for anything less than 4 letters, so th1 or th2 doesn't register.

So epsom salt bath's are safe right?

Lisa, all the research points to the epsom salt baths being very beneficial, but your Dr obviously has something specific in mind with you since he advised you not to do them.

Are you able to contact his office through email and ask why?

Rachel, do you have a link for the Feingold diet list of foods? I've been searching but I can only find explanations of the diet and info about Dr. Feingold. There's even a write-up about it at Quack Watch, which is amusing.

Would it be helpful to follow the diet? It's objective is to reduce the phenol and salicylate toxic loads in the body, right?

AndreaB Contributor
AndreaB
Posted

Page 1439, Rachel's post is near the top where she talks about th1 and th2. If your page numbers are different do a search on this thread for "dominant" and her post is from Sept 22 I think.

Green12 Enthusiast
Green12
Posted
Page 1439, Rachel's post is near the top where she talks about th1 and th2. If your page numbers are different do a search on this thread for "dominant" and her post is from Sept 22 I think.

Birdy, I was working on the th1/th2 immune system recently with one of my practitioners.

There is some info I posted that I can't find now......there is a test you can take to see if your immune system th1 or th2 dominant and then you treat accordingly. The things that build and strengthen the th1 side are detrimental to the th2 side, and vise versa.

EFA's like cod liver oil and etc. build and strengthen both sides, so that is why I have been taking high doses for several months now.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Heres what ART revealed for me...

Mercury is still showing to be a major stressor....but particularly in the head area. Mercury was the only metal which was really showing up this time.

My primary organ of stress was the entire head. She said mercury seems to be locked into the head area. This was the same thing Dr. M. was saying after I'd had my LED's. He tried acupuncture in that area and they also used the laser focusing on this area as a big toxic foci area. I had extra stuff done to this area without having repeated LED's.

At the time he also was focusing on something from the dental work possibly locking mercury into that area. He was wanting to check into the antibiotics as a possible cause but we never persued that and I havent seen him since summer.

As far as the bugs go...."No infections continue to be an issue." :D

This doesnt mean that I'm bug-free but they are just not major players right now...they're not showing up as stressors.

She said this is the 3rd time Lyme is not showing up at all so it seems that it was just hanging on for the ride while my immune system was knocked down a bit.

It seems like my immune system is doing a good job of fighting things off and I still havent gotten sick with anything. My mom and her hubby were both really sick with some bad bug thats been going around. I was around them all through it but I never caught it.

She tested all of my antimicrobials, antifungals, etc and said I dont need to be taking any of them. I told her I'm not taking them anyway...I havent taken anything for Lyme in months. She said I dont need to....I'm doing fine without it. :)

The only thing that might still be useful for me is GSE (for yeast)...but only in a small amount (5 drops daily). This was listed as my least important and I dont really need to start it right now unless I want to.

For mercury she wants me to discontinue the DMPS IV's. We will replace the IV's with TD-DMPS (transdermal). She said mercury seems locked in the head area and transdermal sometimes gets better uptake into this area. Shes ordering this for me but first will try to get me a sample to see how well I tolerate it.

It does contain sulfur and I dont test well for anything with sulfur so she wants me to try a sample first. We are not sure why I have done very well with tolerating DMPS (I do test well for it) despite not responding well to all other sulfur supplements.

We're not really thinking I'm getting redistribution from the DMPS because I've coasted through it without side effects. Its more likely that the IV DMPS is unable to move the mercury from the head area. For some reason its locked up there.

I'll continue to take epsom salt baths and I'm also starting on magnesium sulfate cream. I ordered Kirkmans brand and it tested fine for me. She said its tolerated very well by the kids she treats. I'll use it when I'm unable to do the baths. She said its best to apply to the back and the legs...especially behing the knees.

After I've been on the enzymes for a month she wants me to get back on the ketotifen....to help with the gut healing.

The two supplements I brought from Dr. S. were Taurine and L-Glycine. I was thinking I might not tolerate the taurine and I didnt...it stressed me so she doesnt want me taking it. The L-Glycine tested well so I'll start on that one tomorrow.

My probiotic tested well so I'll continue with that one.

Thats about it for supplements. For me she said "less is more". :)

My entire supplement/med list looks like this:

L-Glycine

Magnesium sulfate cream

Magnesium glycinate

Ketotifen

TD-DMPS

Epsom salts

No Fenol, AFP Peptizyde, Zyme Prime

Armour thyroid

HLC Intensive probiotic

GSE

She also said its not necessary to have the mineral IV's right now. YAY!!

The only reason I'll need to continue with IV's is if by chance my Dr.'s Data results do show a big increase in mercury excretion. If that were to be the case I will continue with IV's. Otherwise as of right now I'm done because they just arent getting the job done. We may go back to it later.

She would like me to try the detox foot pads (Scott has some on his site) because they may pull the metals away from the head area.

Kassandra, if you ever get interested in trying ART...Scott told me that Dr. H. is very open to this, as well as most other types of alternative testing/treatments. He currently has several patients who are using ART as a tool. :)

So Amy was really wanting to see if she if she could somehow test the phenol issue and then Scott handed her a vial labeled "phenolics". This vial stressed my system pretty good. I told her that Anna has a couple panels with all the phenols in them except I dont think she has a tester for "salicylates" specifically.

Her and Scott went and got the panels and we tested them. Wow...it was a huge stressor for me!

She also tested the sulfation pathway and there were some problems there as well....but it wasnt the entire pathway affected.

She said we're definately onto something with the phenols because *everything* in those panels were hugely stressing me AND both the phenol and sulfation issues were strongly related to the head area. So its more than likely all connected.

Hopefully we'll be able to piece it all together and make sense of it. I feel that even though I'm really messed up...its not something we cant fix. I think shes right when she says its not hard to fix once we find the problem. Dr. S. had said basically the same thing....that its probably one or two "glitches" causing a whole big mess.

I'm looking forward to finding out more in the upcoming weeks.

Scott wanted to have a few things tested for himself...so at the end of my appt. I got to participate a little bit with ART. I got to take his place as the "arm pusher". :D

I wish I could do ART more frequently because its still my favorite thing of all! Scott and I both love it...its been the best thing for both of us. I know I wouldnt trade it for anything and I soooo look forward to these visits. For now I'll be continuing to look into this phenol issue to see if theres anything else I can find that might help us.

Scott is also interested in this because he also has had the phenols come up for him in energetic testing. She said she has alot of patients reacting to phenols but my sensitivity is more pronounced. I'm really limited with foods. :(

Other than all that...I'm pretty darn healthy! :lol:

Keeping my fingers crossed for more clues. :)

Green12 Enthusiast
Green12
Posted
Hopefully we'll be able to piece it all together and make sense of it. I feel that even though I'm really messed up...its not something we cant fix. I think shes right when she says its not hard to fix once we find the problem. Dr. S. had said basically the same thing....that its probably one or two "glitches" causing a whole big mess.

All of it is very encouraging, but this especially.

I have to agree that you are onto something, like you and Scott both experienced when I think back phenols always came up for me in my energetic testing, and things just wouldn't hold in general once cleared. There's got to be something to that and once the key is found that unlocks everything everything should fall into place.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel, do you have a link for the Feingold diet list of foods? I've been searching but I can only find explanations of the diet and info about Dr. Feingold. There's even a write-up about it at Quack Watch, which is amusing.

Would it be helpful to follow the diet? It's objective is to reduce the phenol and salicylate toxic loads in the body, right?

Julie,

I have to look through my bookmarked pages. I'll post some links tomorrow cuz I'm past my bedtime again. My moms gonna kill me and I still have to take my bath. :rolleyes:

Stupid Quack Watch!! :angry:

Yeah...I think its VERY helpful to follow the diet. Most of the kids benefit from it and I know that its helped me more than anything else so far. Obviously I dont wanna stay on it forever though. ;)

The purpose is to reduce the toxic load by removing these foods. They are only problematic for those of us who cant metabolise them. This takes a load off of the PST enzymes and hopefully helps improve detoxification. Alot of symptoms can improve on the diet..less aches and pains, less brainfog, etc.

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Andrea....thanks for doing that search. :) I'm exhausted now. Gnite. -_-

tom Contributor
tom
Posted

OOPS!!!!!! I see Andrea found some th1/th2.

What I found is from Dec14 '07.

***************************

I see what the problem is Birdy, it won't let you search for anything less than 4 letters, so th1 or th2 doesn't register.

It's just the forum's custom google which has the 4 letter requirement.

Outside, through the main google, I searched "th1 OR th2" using Advanced Search so I could limit it to this thread - or try to anyway.

(Site:Open Original Shared Link)

BUT .. .it still didn't work quite as well as I'd expected.

Just 10 results and most aren't on this thread.

Here's one post that may have what's being looked for.

Julie,

Have you ever been tested to see if the MMR...or specifically the measles virus is a problem for you?? Have you ever been treated with nosodes for the MMR or measles??

I actually talked to Anna (my bioset practitioner) about your situation several months ago...you werent posting at the time. She immediately said she would look at the MMR..she said the measles may not have been cleared by your immune system.

It would not be mercury from the MMR....because the MMR never contained thmerosal....but if exposure has been high prior to the live vaccines...the immune system may be compromised and unable to fight the viruses as it normally should.

There are 2 sides to the immune system...TH1 and TH2. When heavy metal and environmental toxin loads are high...the immune system may be operating more on the TH2 side. The TH2 side deals with metals and toxins while the TH1 side deals with certain infections... intracellular bacteria, yeast and viruses...also cancer.

If your immune system is compromised by metals its more likely to be operating more on the TH2 side....which leaves us more vulnerable to those infections. I think also if the immune system is revved up on TH2 side...we are more reactive to everything...foods, chemicals, etc.

Anyways...if you could see someone like Amy...who is really experienced with ART...you might be able to pinpoint if the MMR has caused your problems or not.

In the book I'm currently reading "The Natural Medicine Guide To Autism"....there is alot of discussion about the MMR.

The book is very imformative and includes information from several different health care practitioners and researchers. There is a chapter about the work of each Dr.....including Dr. Klinghardt.

Most if not all of these Dr.'s use the nosodes to successfully clear the MMR viruses.

This is a portion of what Dr. K says in the book...

ART can identify the connection between an individual childs autism and specific vaccines. For example, muscle testing indicators of the illness may "resonate" with the Hepatitis B vaccine, which means there is a strong "yes" from the test muscle that the autism is connected to that particular vaccine.

There is often a multiple vaccine connection.

Dr Klinghardt notes, supporting the data that indicate that there is a synergetic effect between the vaccines. "The more vaccines, the more chance of developing Autism", he states.

Like the heavy metals, the vaccine viruses impair various biochemical systems, including the enzyme system. "On the most superficial level, people develop a deep disturbance in their fatty acid metabolism. "We know that for sure", says Dr. K.

Vaccines also change the bowel flora in favor of pathogenic microorganisms. The situation in the bowel sets the child up for allergies, excema, and asthma.

He also says that in his experience the MMR is the most common culprit, but the hepatitis B and the pertussis vaccines have been instrumental in a number of cases as well.

So you may want to consider looking into this with one of the Dr.'s who is very knowledgeable about the vaccines....especially MMR.

In Google's Advanced Search, there are different boxes for things like "limited to this site" etc.

AndreaB Contributor
AndreaB
Posted

Sounds like a really great appointment Rachel! :D

Looking forward to you guys finding the key to unlock everything.

I like ART to, just have no money to pursue it for us. Still hoping to get my teeth taken care of this fall.

confusedks Enthusiast
confusedks
Posted
There's even a write-up about it at Quack Watch, which is amusing.

I think that is the most offensive website EVER! They are just horrible. Ugh. Julie, when you posted about the LEAP allergy tests, I googled it and I didn't realize I somehow ended up on Quack Watch, and I was wondering why this site was bashing it so badly. :rolleyes:

Kassandra, if you ever get interested in trying ART...Scott told me that Dr. H. is very open to this, as well as most other types of alternative testing/treatments. He currently has several patients who are using ART as a tool. :)

Yea, that's so funny. I talked to a fellow Lyme friend who also sees Dr Amy and she was telling me about this. :) I would LOVE to do ART testing (do you say it like Art or A-R-T and pronounce every letter...cuz if I ask, I don't want to sound stupid, LOL) but it's a matter of finding someone who does it and someone we can afford.

I want to talk to him about it at my next appt. on April 6th. I'll try and remember, and I'll report back what he says. :D

I'm glad your appt went well Rachel! YAY!!!

Donna, I hope you get well soon! :wub: I was wondering why the EM thread has been so slow, LOL! :lol:

mftnchn Explorer
mftnchn
Posted

Good point, Kassandra. I've had ART, and now that I think about it, I don't know how to say it either!

Green12 Enthusiast
Green12
Posted
Julie,

I have to look through my bookmarked pages. I'll post some links tomorrow cuz I'm past my bedtime again. My moms gonna kill me and I still have to take my bath. :rolleyes:

Ok, thanks. I'll keep searching too, this morning I came across quite a few sites where you have to purchase a book, or educational material about the diet, and a few "samples of what not to eat" lists.

As far as the epsom salt baths, the sulfate component of the epsom salt has mostly been covered here, but my ART practitioner is focusing on the magnesium component of the epsom salts for me.

The magnesium is good for inflammation and nervous system regulation, skin conditions can be connected to an overactive nervous system (hives, rashes, eczema) and magnesium calms the nervous system.

The epsom salt baths are a good way to raise the body's magnesium levels as it is absorbed through the skin as you soak.

Kassandra, I have always said "art" and I am trying to think if my practitioner corrected me or looked at me funny. I don't remember, good question.

confused Community Regular
confused
Posted

Ok i have an question and I hope it makes sense and I hope someone can help me figure this out.

Well I just found out that the city i live in has never put chlorine in the water, hence why we have the salmonella outbreak. So could my immune system be in the shape that it is in, cause i have ingested water all these years without chlorine flushing some of the bad stuff out of the water. Cause hubby and I were talking and we never had allergies til we moved up here. I have lived here alot longer then hubby but i drink way more water then he does. Also all the kids have very sensitive skin. I know this might be a long shot, but im thinking the water is to blame.

any ideas would be appreciated

paula

rinne Apprentice
rinne
Posted
.....

Now cut that OUT!!! :lol:

:lol:

Donna has been really sick with a cold or sinus infection and unable to sit at the computer for any length of time, so she hasn't been keeping up with any of the posts.

...

Thanks for the update Julie, I hope she feels better soon, I was wondering about her.

I think that is the most offensive website EVER! They are just horrible. Ugh. Julie, when you posted about the LEAP allergy tests, I googled it and I didn't realize I somehow ended up on Quack Watch, and I was wondering why this site was bashing it so badly. :rolleyes:

.......

Hi, yes and it is a great site to go for if you want to find out how the pharmaceutical companies want us to think! I read the "Victim" of the Feingold diet and it was as if someone had sat down and wrote a script to make mothers think they will ruin their children's lives if they follow this diet. :huh: Reading it, it is obvious the diet wasn't the problem.

Green12 Enthusiast
Green12
Posted
Ok i have an question and I hope it makes sense and I hope someone can help me figure this out.

Well I just found out that the city i live in has never put chlorine in the water, hence why we have the salmonella outbreak. So could my immune system be in the shape that it is in, cause i have ingested water all these years without chlorine flushing some of the bad stuff out of the water. Cause hubby and I were talking and we never had allergies til we moved up here. I have lived here alot longer then hubby but i drink way more water then he does. Also all the kids have very sensitive skin. I know this might be a long shot, but im thinking the water is to blame.

I don't know Paula, I guess it could be possible.

But is chlorine used routinely, or just in the cases when bacteia is found in the water supplies? I guess I was under the impression that chlorine is used after the fact, to desinfect the water supply in emergency situations, such as the salmonella outbreak you guys are having.

How are you holding up btw? I heard you can't do anything with water except for flushing toilets for a week or more.

AndreaB Contributor
AndreaB
Posted
But is chlorine used routinely, or just in the cases when bacteia is found in the water supplies? I guess I was under the impression that chlorine is used after the fact, to desinfect the water supply in emergency situations, such as the salmonella outbreak you guys are having.

As far as I know city water's are chlorinated. I know they are here in Washington anyway.....and then you have lots of cities adding fluoride. <_<

I don't have any idea either Paula. :(

Oh, and I've always said art when I've called in to make appointments.

confused Community Regular
confused
Posted
I don't know Paula, I guess it could be possible.

But is chlorine used routinely, or just in the cases when bacteia is found in the water supplies? I guess I was under the impression that chlorine is used after the fact, to desinfect the water supply in emergency situations, such as the salmonella outbreak you guys are having.

How are you holding up btw? I heard you can't do anything with water except for flushing toilets for a week or more.

From what i have read, you are supposed to have a small dose of chlorine in the water, some places have more then others. That is what keeps the water safe. Of course the amounts they are putting in here now, well in parts of my town, is lots higher.

I am going crazy, i thought i was going to be ok with all of this. But now im freaking out really bad. We can still use the water for laundry and dishes in dishwasher in my neighborhood. They are going neighborhood by neighborhood, and we have no idea when it is our turn. I think that is the part that is pissing me off. Every morning i tell the kids ok this is your last bath, and every morning they tell me but mom you told me that yesterday lol. And every morining i say ok this is my last load of laundry or last time i can run the dishwasher, then i sit and wait.

paula

confused Community Regular
confused
Posted
As far as I know city water's are chlorinated. I know they are here in Washington anyway.....and then you have lots of cities adding fluoride. <_<

I don't have any idea either Paula. :(

Oh, and I've always said art when I've called in to make appointments.

Oh i know its a long shot, but it could make sense just if i knew what to reseach to find out lol. Im thinking if do get brave enough to try humaworm tho that lots would come out of my system lol

paula

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Paula,

I think anythings possible. Theres bad stuff in most tap water....chlorine is toxic as well. I think its important to drink and bathe in the cleanest water possible but I dont know that the water alone is the source of your health problems. You never know though.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Kassandra,

I usually say A.R.T.

I guess I never paid alot of attention to how other people say it but I believe Scott also refers to it as A.R.T.

I sometimes say "Art" when I'm talking to my friends about it. For some reason I think saying it that way will be easier for them to remember. :huh:

ShadowSwallow Newbie
ShadowSwallow
Posted

Thank you Andrea and Tom! :D :D

Here are some interesting articles I've found about this:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I'm going to start taking charcoal again... the rash on my arms has developed into almost chronic hives. Every time I itch myself--anywhere--I get hives. <_< I'm hoping that the charcoal will help bind these toxins (it only became noticeably bad after my herx)... along with regular epsom salt baths. I'm also trying to creep up on the Parsley and Burbur, but I'm not testing very well to them right now.

Does anyone take an antihistmine or has success with them? (My blood pressure is lingering on the low side of things and I'm on Prilosec OTC (histamine receptor 2 blocker).)

tabasco32 Apprentice
tabasco32
Posted

Hey everyone

I'm at the library again. My computer has a virus .<_<

Great information. Yeah I really want to look into maybe doing A.R.T. or "art" someday. It just seems interesting.

I guess I'm just curios.

Green12 Enthusiast
Green12
Posted
From what i have read, you are supposed to have a small dose of chlorine in the water, some places have more then others. That is what keeps the water safe. Of course the amounts they are putting in here now, well in parts of my town, is lots higher.

I am going crazy, i thought i was going to be ok with all of this. But now im freaking out really bad. We can still use the water for laundry and dishes in dishwasher in my neighborhood. They are going neighborhood by neighborhood, and we have no idea when it is our turn. I think that is the part that is pissing me off. Every morning i tell the kids ok this is your last bath, and every morning they tell me but mom you told me that yesterday lol. And every morining i say ok this is my last load of laundry or last time i can run the dishwasher, then i sit and wait.

paula

I don't blame you for going crazy Paula. I have a hard time dealing with no water for a few hours when it is shut down, I couldn't imagine for days and days. It's in those times we realize how much we take for granted water.

I guess that makes sense about the chlorine being present in small doses, hence the need for a bath ball.

Speaking of, I found one at my local health food store, it sounds kind of like what you have Rachel. You hang it on the faucet and let the water run through it as you fill the bath.

The box says: Splish Splash Natural Bath, dechlorinating filter, by Enviro Products.

I'm going to start taking charcoal again... the rash on my arms has developed into almost chronic hives. Every time I itch myself--anywhere--I get hives. <_< I'm hoping that the charcoal will help bind these toxins (it only became noticeably bad after my herx)... along with regular epsom salt baths. I'm also trying to creep up on the Parsley and Burbur, but I'm not testing very well to them right now.

Does anyone take an antihistmine or has success with them? (My blood pressure is lingering on the low side of things and I'm on Prilosec OTC (histamine receptor 2 blocker).)

Birdy, thanks for the links.

Sorry about your hives getting worse, I thought they had started to improve with the baths? I was hoping that would continue for you. I hope the charcoal helps.

I took the antihistamine Claritin for quite sometime, initially it seemed to make a difference but then shortly after that they became ineffective, and then longer term they caused me more problems than good. But those were just my experiences.

Hey everyone

I'm at the library again. My computer has a virus .<_<

Sorry about your computer Lisa.

confused Community Regular
confused
Posted
Paula,

I think anythings possible. Theres bad stuff in most tap water....chlorine is toxic as well. I think its important to drink and bathe in the cleanest water possible but I dont know that the water alone is the source of your health problems. You never know though.

Oh i agree i dont think it is all from the water, but i wonder if it is part of the burden.

I just cant wait for this is all over and i can do the metal hair analyzes, i figured it would not be a good time to do it with all of the water problems.

Im still feeling good but i still think there is more going on with me, i just cant pinpoint it yet.

Well its official, no more water for anything but flushing, ughhhh.

Also one question can i just rub epsom salt on me to get some sort of detox going on, Im really needing something.

paula

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      how much gluten do I need to eat before blood tests?

      By trents · Posted

      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
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      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
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      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
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      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
      Accuracy of testing concerns

      By trents · Posted

      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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