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Omg...i Might Be On To Something


Rachel--24

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tom Contributor
Blush, blush, the rinnebar is better. :lol:

I want a Rinnebar!!!!!!!!!!!! :D


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Rachel--24 Collaborator
I went to see my gyn/doc today. I've gone to the same guy for about 17 years. Last year I told him about gluten, how I felt better off it, but all my tests came back negative. He said to quit looking for clinical proof as dietary response WAS clinical proof.

Anyway, I had to tell him about the Lyme because he needed to know what medications I was on (because of why I was there). He was totally anti-lyme. He told me the tests weren't perfect. I told him that the test was VERY positive, I had most of the symptoms, and I'm responding to treatment ...

He then told me he was sure I could find someone locally to treat me, that anyone treating only Lyme is suspicious and could be running a scam. I told him I didn't care, I was getting better and that's all that mattered.

I thought it was odd that he finds a Lyme specialist suspicious ... after all, he's a specialist, too ... should I also find him suspicious? What about an oncologist? What about a dermatologist? Or an orthodontist? Can every health complaint have specialists EXCEPT Lyme?

What is it with these mainstream Dr.'s anyway?? :rolleyes:

Yeah....when I was going to Kaiser they would pretty much act as if I was a crazy person for even suggesting that *maybe* I have mercury poisoning...or Lyme. :o:o

***Warning*** Mentioning Candida will surely get you a pass straight to the shrink's office. :rolleyes:

MORONS. :angry:

From what I witnessed during my heinous time as a Kaiser patient....I came to the conclusion that these Dr.'s feel the need to rip alternative Dr.'s apart...I mean...they go OVERBOARD....makes me think they feel threatened by the fact that these other Dr.'s are actually helping people....the same people that the mainstream Dr.'s are FAILING to diagnose.

They dont like Igenix for diagnosing the Lyme patients....they dont like LLMD's for treating the Lyme patients....they dont like to see people getting well under the care of Dr.'s who are making them look less them competent (to put it nicely).

These Dr.'s are brainwashed into believing that Lyme is a non-issue....same way the dentists are brainwashed by the ADA into believing that amalgams are perfectly safe in our mouths.

In both cases all of the evidence is to the contrary. The scientific evidence has been presented time and time again....only to be ignored.

If amalgam is considered hazardous material in ANY place other than in our mouths....why the heck would *anyone* think that once they're installed into our teeth...they magically become non-toxic?? :blink:

Yeah....its illegal to dispose of amalgam in a landfill...but perfectly safe to put them in our teeth. :rolleyes:

I used to bring my books on these subjects to my Dr. appt.'s....OMG.....these guys would almost lose all control.....especially when I carried arount my "Yeast Syndrome" book. :lol:

tom Contributor
... "naturally derived citric acid"

I'm thinking either way its "naturally derived"....whether it comes from citrus or from aspergillus.

I haven't gone and looked anything up, but . . . .eh I shouldn't go there.

The fermenting mold process was invented. Hence the distinction.

"Naturally derived" sounds like it's more of a "harvesting" situation.

Muir Glen is a pretty reputable company. Not sure if they're entirely organic or just mostly.

AndreaB Contributor
I thought it was odd that he finds a Lyme specialist suspicious ... after all, he's a specialist, too ... should I also find him suspicious? What about an oncologist? What about a dermatologist? Or an orthodontist? Can every health complaint have specialists EXCEPT Lyme?

You have a very good point.

I only have two words for you, Enjoy Life. :P:lol:

Yep, I love my enjoy life chocolate chips! :P:D

Citric acid was originally discovered in fruits...but thats not where it comes from today.

You can find out anything by researching online. I never take someones word for anything w/out doing the research to back it up. The answers are out there....you cant always trust what people write on message boards or on their own pages. I wouldnt want someone to take my word for anything I post....which is why I try to always use quotes like this.

The fact is that when you see the words "citric acid" listed in the ingredients.....nowadays its coming from mold....not citrus.

This stuff on citric acid is interesting to me. Talitha reacts to most of it but not all of it. :huh:

I just called my doctors office today to tell them about ART. Didn't get to talk to him though. I told them that my doctor is supposed to be involved in any treatment recommendations and that I assumed that Dr. Elizabeth would want to send them a copy.

I really like the idea of knowing what things will work best for a certain treatment. I'm thinking mainly mercury. We don't have an Anna up here so I don't know what I'd do about bioset if we needed that. I assume they could recommend a practitioner if need be.

I need to try and remember to ask her if she knows of the dentist I'll be seeing. She does referrals to holistic dentists.

Mitch's oldest and his wife came by tonight. She's starting field school for the summer 1/2 hour south of us. He'll be heading back to eastern washington in a few days to resume his work. I think her course is 6-8 weeks. He's coming back in the morning.......the children don't know this. :)

It's late and I've got to get to bed. I have read everything though. :)

AndreaB Contributor
I haven't gone and looked anything up, but . . . .eh I shouldn't go there.

The fermenting mold process was invented. Hence the distinction.

"Naturally derived" sounds like it's more of a "harvesting" situation.

Muir Glen is a pretty reputable company. Not sure if they're entirely organic or just mostly.

My daughter reacts to Muir Glen. She's fine with Eden Organics though.....no citric acid.

rinne Apprentice
I went to see my gyn/doc today. I've gone to the same guy for about 17 years. Last year I told him about gluten, how I felt better off it, but all my tests came back negative. He said to quit looking for clinical proof as dietary response WAS clinical proof.

Anyway, I had to tell him about the Lyme because he needed to know what medications I was on (because of why I was there). He was totally anti-lyme. He told me the tests weren't perfect. I told him that the test was VERY positive, I had most of the symptoms, and I'm responding to treatment ...

......

:(:angry: Idiot doctor.

I'm sorry that happened Carla. I know that it is probably not a big deal because you have educated yourself and are confident that you are on the right track but being treated without respect takes energy to deal with and who wants to expend that energy on idiots?

What angers me about doctors who do this is that for someone who is not coming from a strong place those kinds of statements can be devastating.

Great news Bev. Makes me glad I wasnt too reluctant to post about this stuff.

It seems to have done wonders for both you and Carla.

Best thing is that now I'm not the ONLY one here doing it!

Yup...I'm with you on that one! I'll take coffee my coffee any which way as long its gonna help me shed some of these toxins.

I'll also sit nekkid in a strange looking Spiceship everyday....whatever it takes.

I'll take my coffee anyways I can get it. :ph34r::lol: Add me to the club and yes it does seem to be helping. :)

And I'm with you, whatever it takes. :)

Today was a really good day ( though I am awake in the middle of the night that is in part because I fell asleep at nine) I cleaned thoroughly, put away a ton of stuff, rehung pictures and generally made our little house into a pleasant space to be in. I've been laying on the couch looking at a disaster zone for the past week.

We moved everything out of the closet, small second bedroom, and turned it into my office and as a result half the closet has been sitting in the living room.

Further, I had very little pain which was very nice.

....

Show me a teenaged boy who never wanted to be a Playboy photographer when he grew up and I'll show u either a liar, an asexual, or a boy that wanted to be photographer for a similar, yet markedly different magazine.

:o:ph34r::lol:

....

I'm the opposite of Carla.

...

:lol: I'm a racheller too.

Mutant mosquitos from mercury??

Judging from the way things have been going with the #2's lately I'm thinking you must be done with this book already. :P

So what happened....who won the battle?? .....the giant robot or the mutant mosquitos??? :lol:

:lol:

Lisa, glad to see your humor shining through. :)

I want a Rinnebar!!!!!!!!!!!! :D

I wish I could say, "coming soon to a grocer near you" but that would be very premature of me. :lol:

I am still in the start-up stage with a number of stores wanting to carry them but I do have a marketing guy who has taken a couple of small organic companies national very interested. So, it is possible that that may be true in the next couple of years.

What's exciting is that they appeal to a wider market than just gluten and dairy free, several of the stores that want to carry them really don't care about that they just think they are good.

.....

From what I witnessed during my heinous time as a Kaiser patient....I came to the conclusion that these Dr.'s feel the need to rip alternative Dr.'s apart...I mean...they go OVERBOARD....makes me think they feel threatened by the fact that these other Dr.'s are actually helping people....the same people that the mainstream Dr.'s are FAILING to diagnose.

.....

I think you are right.

I think they know they are losing control of what has been a monopoly for them.

Jin, nice to see you in spunky form and I love your use of language. Bodacious.... :lol:

Hello to everyone. :)

rinne Apprentice
My daughter reacts to Muir Glen. She's fine with Eden Organics though.....no citric acid.

Thanks for the tip Andrea, I hope you are sleeping by now. :)


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mftnchn Explorer

Hi, sorry I can't really keep up reading the posts on this thread...but wanted to let you know that my lyme has recurred. Took about 4-5 months completely off treatment to start coming back. Started gradually about a month ago with fleeting pains in extremities and joints, increased to morning stiffness, then to all day stiffness and significant pain. With that and the ups and downs from adjusting to gluten-free, I've not been too productive. Pretty discouraging because before going Gluten-free Casein-free I was really doing quite well! <_<

Also more coffee enemas lately---one of the only things that helps. Maybe we could refer to it as ecoffee??? :ph34r:

Anyway, after a phone consult, I am now back on antibiotics: To start, azithromycin and flagyl. Also transfer factor daily (was weekly) which is a problem because it has milk in it. And up as far as I can as soon as I can on the cat's claw. Wants me to do phone appointments regularly to monitor what happens.

My doctor also confirmed the need to be gluten/casein free due to quite significant Enterolab results. (Glad both he and my allergist are on board with this.)

He's adding reservatrol to my regimen, it is a grape seed derivative. Anybody else on this and know about it?

Also, L-glutamine which I have also seen referred to on this site. Won't be able to start these two until August when a visitor can carry this to me here in China.

tabasco32 Apprentice
Lisa....forgot to tell you my Dads mexican. I'm half latina B) .....and yup....I want some mexican sweet bread.....I want some carnitas....I want tortillas. I miss eating at the taqueria by my house. :(

Oh me too!! You just don't know how much I miss tortillas with chorizo and papa's. At my favorite restaurant Bobby Salazars they have fancy burrito's. Chili con carne with beans inside and a lot of jack cheese on top! mmmmm. I also miss my grandmas mexican hot chocolate and rice pudding.

By the way what is a rinnebar?

Used a warm water enyma tonight. Got some pebbles out of there but not much. But some I guess is better than none. For some reason the water feels so much hotter in your colon than your hand.

Hey rachel do you think it's ok for me to do coffee enymas? And do you do them everyday or a few times a week? And can you do them everyday?

mftnchn Explorer
do you think it's ok for me to do coffee enymas? And do you do them everyday or a few times a week? And can you do them everyday?

I've done them daily without problems when I need it. Normally head for twice a week as a rule or less. At least that's what my doc said.

miamia Rookie
Actually this is a good question...one that I'm curious about myself.

That new OxyPowder has "naturally derived citric acid". <_<

I've only tried one pill (friday night) and I reacted to it immediately.

Stupid head pressure. :rolleyes:

I'm thinking either way its "naturally derived"....whether it comes from citrus or from aspergillus. Based on my reaction I'm leaning toward aspergillus but I'd like to know "for sure".

I'm gonna try the oxypowder again but I'm gonna wait till next week.

Rachel-

I have to say lately I seem really sensitive and the oxy powder seems to be too much for me- not in terms of producing alot of stool but just in terms of bloating and yes stupid head pressure!! So I am going to try to stay away form it for alittle while.

OH who mentioned FLAN now thats a desert I could get down with!!! I spent a summer in puerto rico when i was younger and my friends grandmother would always make us fresh caramel flan. YUM!!!!

miamia Rookie
Thanks for the tip Andrea, I hope you are sleeping by now. :)

theres finally one tomato that i can handle it does not have citric acisI think its BioNature or something.

tom Contributor
Oh me too!! You just don't know how much I miss tortillas with chorizo . . . . . .

Ahhhhhhhh Cho! (Not a sneeze. I'll try again)

Yay Chorizo!!

Enjoyed it some after going to Tucson for college, but *REALLY* got into it after a stint working at La Paloma Restaurant in Chicago. (Grrr or was that the Wrigley location? Same guys owned 2 w/ diff names) Sounds weird maybe but I wasn't the ONLY huero, just darn close. :huh:

I've been (until celiac anyway) making chorizo & eggs ever since. And the Queso Fundido there!! Yum! :)

miamia Rookie
Oh me too!! You just don't know how much I miss tortillas with chorizo and papa's. At my favorite restaurant Bobby Salazars they have fancy burrito's. Chili con carne with beans inside and a lot of jack cheese on top! mmmmm. I also miss my grandmas mexican hot chocolate and rice pudding.

By the way what is a rinnebar?

Used a warm water enyma tonight. Got some pebbles out of there but not much. But some I guess is better than none. For some reason the water feels so much hotter in your colon than your hand.

Hey rachel do you think it's ok for me to do coffee enymas? And do you do them everyday or a few times a week? And can you do them everyday?

Lisa-

maybe you should run this by your doctor before you try the coffee enemas.

do you mean the hot choclate that comes form the bars of choclate?

miamia Rookie

CUrious - what is everyones opinion on laxatives like ex-lax? not for regular use where it can work up dependence but for occasional use?

tom Contributor
My daughter reacts to Muir Glen. She's fine with Eden Organics though.....no citric acid.

Aha! Good info, Thx

Justifying my reluctance. Bought that can quite awhile ago, meaning to try it back then.

But it's one thing thinking that in the store.

It's something else in the kitchen, wondering if there's a quick bad reaction, do I really wanna cook *twice*?? :ph34r:

P.S. Mornin' Donna! I got up @donnatime today!

Didn't want to. Thought getting to sleep earlier would make for extra sleeping time.

But noooooooooo, instead I wake @4:30am.

Tried getting back to sleep, but how long can ya try before giving up? (Me=not very long. Too much exp over many yrs lying in bed wishing I were asleep & so have avoided that situation for >10yrs)

dlp252 Apprentice

MUIR GLEN = heinosity!!! Icky stuff which I do react to. I DO buy the 365 organic canned tomatoes and seem to do okay with them though. I think they also have citric acid, but that's about the only source I get of it.

Holy cow, I'm half hispanic too, but don't know any of that stuff. :lol: I may have had a chorizo or two, but don't know much about the other stuff (wasn't raised any hispanic influence obviously, lol).

Wow, excellent scientificness by Lisa!!

Carla - Amazing about that doctor! :angry: What's most aggrevating is that he has KNOWN you for so many years!!! It's bad enough with a new doctor, but to have someone you've had a history with for so long say stupid things is just weird. :P Besides, most lyme doctors don't just look for lyme and don't just treat for lyme...and at least with my doctor, they don't RUSH to any kind of treatment. I think most want to actually TREAT the right thing.

(Kids of old girlfriend)

Ah! Cute girls. :)

Oh and Chapter 3 is Titled: Mr. Mosquito Hates Mercury!

:lol: :lol:

Supposed don't-miss PBS series starts tonight!

Oooops, missed it. :lol:

Anna had me tested for antibodies to aspergillus because the problem with aspergillus kept showing up so prominently. I was negative on all the aspergillus tests so I dont have an infection....just really sensitive to it. I used to smoke...Anna said cigs are loaded with aspergillus mold.

I've got it all. :( All three of the biggies. :(

Best thing is that now I'm not the ONLY one here doing it!

:P Still no convert here though...

Heck.....all along its just cuz you're not hungry!

This never stops me from eating. Ever... Never... :ph34r:

Today was a really good day ( though I am awake in the middle of the night that is in part because I fell asleep at nine) I cleaned thoroughly, put away a ton of stuff, rehung pictures and generally made our little house into a pleasant space to be in. I've been laying on the couch looking at a disaster zone for the past week.

We moved everything out of the closet, small second bedroom, and turned it into my office and as a result half the closet has been sitting in the living room.

It's sooooo very good to see you feeling so good!!!

Hi, sorry I can't really keep up reading the posts on this thread...but wanted to let you know that my lyme has recurred.

Gosh, I'm so sorry!!!

P.S. Mornin' Donna! I got up @donnatime today!

Didn't want to. Thought getting to sleep earlier would make for extra sleeping time.

But noooooooooo, instead I wake @4:30am.

Tried getting back to sleep, but how long can ya try before giving up? (Me=not very long. Too much exp over many yrs lying in bed wishing I were asleep & so have avoided that situation for >10yrs)

Morning, lol! :lol: Yes, it's 6:38 here and I've been at work for at least 50 minutes or so, maybe an hour. For once I actually SLEPT til my alarm went off at 4:20!

tom Contributor

Re: Frico

It can also be done in the oven on parchment paper, I've made crackers with asiago that way, ;)

LOL I don't know why this suddenly came to me, but Rinne, I just had to find this post so I could say:

PARCHMENT PAPER??!!! Wow u really are a real chef!! (Just reading it in the sig is never enough to convince a doubting tom)

Maybe I've seen parchment paper at mom's or my sister's but I only KNOW I've seen it on tv. D'oh :lol:

If I could have cheese and didn't want exposure to any teflon (oops sidebar timeout! - it's a CHEMICAL BOND like salt's sodium to chlorine - each poisonous out of the bond!!. It'd be diff if it were simply sprayed on or painted on) I'd be out buying parchment paper TOOO-Day!

:);)

I'd never heard the story of the Rinne Bar, tho had meant to ask.

Until yesterday, I thought it was more like a LaraBar or whatever. I don't know anything about energy bars etc as there's always gonna be *something* in 'em I won't yet eat.

And now that someone else has asked (Lisa I think?), do tell a Rinne Bar story!! Or link to one.

Don't make me beg!

tom Contributor

Re: <big breath> twoallbeefpattiesspecialsaucelettucecheesepicklesonionsonasesameseedbun!! <annnnnnd exhale> :lol::P

LOL, mine happened about two years ago.

OH! I was SURE you'd learned it back when they had the giant promo. "Say it in <8sec & get a free one." Musta been product launch.

Anyone else remember early 70s sub 8 sec promo deal? Maybe it was just midwest? That makes no sense. :huh:

Sheesh I've far exceeded the amount of contemplation this topic deserves.

dlp252 Apprentice
Sheesh I've far exceeded the amount of contemplation this topic deserves.

:lol:

Wish I could make that guffaw face much larger! :lol:

CarlaB Enthusiast

I only have a couple minutes to post ... I'm not caught up.

So yeah....this guy removed his fillings and could suddenly drink fruit juice again....fruit juice is LOADED with sugars, molds and yeast. Its unlikely that the juice was chelating mercury from his fillings.....much more likely that he was sensitive to molds until he got his fillings removed and the yeast burdened was lowered.

I have always been able to drink juice I make myself, but NOT already made juice. They don't exactly use the pretty fruit for juice. This is what bothers me with peanut butter, too. I can take a little of it, but not two or three days in a row. Of course, right now, I don't take either .... but a little fruit juice from Wild Oats once in a while ... :ph34r:

Uhhh, I have to add <spaces> to show u tho, or it'll think it's coded.

[ / q u o t e]

Yes, I meant that if you could type in the opening quote, perhaps you could also type in the closing quote like you did above.

Dear Carla,

That O.B. is a moron! He is one of those people that thinks he is God in a labcoat. What kind of weirdo decides they want to stare at women's va-jay-jays all day long for a living anyway? Sounds like a pervert to me! I would not trust him!

I think this guy likes delivering babies ... but you have to remember Tom's point ... most of these guys decide what they want to be when they grow up when they're still teenagers ... you have to plan ahead for medical school.

This guy loves a pregnant belly though. It was rather funny back when I was having babies. He has a picture of his wife with a shirt on that exposes her belly when she was pregnant.

As far as the investment property, normally I'm totally detached from whether we get one or not (we have two), but since I wanted to use the kitchen in this one, I really wanted it!

It seems to have done wonders for both you and Carla. :)

Best thing is that now I'm not the ONLY one here doing it! :P

Yeah, we're all a bunch of freaks!!

So feel free to fantasize about the rich part, but u CAN make the "well" happen!!

Rich or poor is irrelevant ... healthy is key. I know many miserable rich people totally controlled by their money. Some of the happiest people I know are people who don't have all they want/need and work hard for it. I know this is not universally true, but in my experience, it is true more times than not. One of the best neighborhoods we ever lived in was "lower middle class". Everyone was there for each other.

This is why you're able to carla stuff!!!!! :o

.....and here I was thinking you were somehow able to show great "super human" restraint when faced with temptuous donuts and other sugar-laden treats. That you HAD to have some special abilities (that I clearly lack) to be able to make one donut last 3 weeks! :blink:

I WANTED that donut. It's only now that I'm not hungry. :rolleyes:

tom Contributor
So what happened....who won the battle?? .....the giant robot or the mutant mosquitos??? :lol:

I got a quid on the skeeters. :)

That robot will eventually succumb to environmental factors if nothing else.

Acid rain . . . . Lightning . . .. SOMEthing!!!

tom Contributor
theres finally one tomato that i can handle it does not have citric acid. I think its BioNature or something.

Aha Mia! I made a note of it.

Thx,

tomtom

rinne Apprentice
Hi, sorry I can't really keep up reading the posts on this thread...but wanted to let you know that my lyme has recurred. Took about 4-5 months completely off treatment to start coming back. Started gradually about a month ago with fleeting pains in extremities and joints, increased to morning stiffness, then to all day stiffness and significant pain. With that and the ups and downs from adjusting to gluten-free, I've not been too productive. Pretty discouraging because before going Gluten-free Casein-free I was really doing quite well! <_<

Also more coffee enemas lately---one of the only things that helps. Maybe we could refer to it as ecoffee??? :ph34r:

Anyway, after a phone consult, I am now back on antibiotics: To start, azithromycin and flagyl. Also transfer factor daily (was weekly) which is a problem because it has milk in it. And up as far as I can as soon as I can on the cat's claw. Wants me to do phone appointments regularly to monitor what happens.

My doctor also confirmed the need to be gluten/casein free due to quite significant Enterolab results. (Glad both he and my allergist are on board with this.)

He's adding reservatrol to my regimen, it is a grape seed derivative. Anybody else on this and know about it?

Also, L-glutamine which I have also seen referred to on this site. Won't be able to start these two until August when a visitor can carry this to me here in China.

It's good to hear from you and no problem with not reading all the posts, even for us regulars it can be hard. :lol:

So sorry to hear about the Lyme coming back. I have heard that this happens. :(

I'm confused about using ABX and nutraceticals such as cat's claw at the same time, is this a common practice?

And yes to the ecoffee. :lol:

.....

By the way what is a rinnebar?

...

It is a gluten and dairy free frozen dessert which resembles a Hagan Daas ice cream bar. I invented it. :) It has chocolate and almonds and bananas and a few other ingredients in it.

theres finally one tomato that i can handle it does not have citric acisI think its BioNature or something.

Thanks Miamia, I haven't seen that brand but will look for it. :)

CUrious - what is everyones opinion on laxatives like ex-lax? not for regular use where it can work up dependence but for occasional use?

I've taken various herbal laxatives and might again but my past experience tells me that none of them work that well for me. The ecoffee does though. :lol:

....

It's sooooo very good to see you feeling so good!!!

....

Thanks Donna, I find myself amazed at how well I am feeling. I realize now how much of me didn't feel it was ever going to happen.

There were months and months where nothing I did seemed to make much difference and that made it difficult to have confidence in what I was doing but now I realize that when you get really ill it takes time to recover.

tom Contributor
MUIR GLEN = heinosity!!! Icky stuff which I do react to. I DO buy the 365 organic canned tomatoes and seem to do okay with them though. I think they also have citric acid, but that's about the only source I get of it.

Yay another datapoint for me. I'm also pretty sure 365 has citric acid.

I got the can of Crushed Tomatoes for Giada's Fish Florentine recipe and it was terribly hard to even find the Muir Glen, which at a minimum isn't the *same* mold-origin citric acid. :huh:

Now I feel like I just better try it before I move. I belong in San Jose. Well, maybe Portland.

Either way I need out before the stretches of 115 degrees begin. :ph34r:

(What's a word beyond heinous?) :lol:

Ah! Cute girls. :)

Nic'n'Nat are the greatest. Helped keep me alive for a couple yrs.

P.S. Reminded of some lyrics hehe

"I was a poor magician

I could never understand

You can't make tears

disappear through sleight of hand"

timbuk3

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    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • 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
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