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Omg...i Might Be On To Something


Rachel--24

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mydogisdewey Newbie

hi everyone here. brand new here. i posted the following 2 items in another thread and was asked to cross-post them to your thread? i'd love to read your thread more thoroughly and condense these two posts but i have to run out the door.. so here's what i wrote fwiw:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

just found your discussion on a search. i was diagnosed with full-on celiac -- had the biopsy - villous III atrophy - also have both genes, HLA DQ2 and HLA DQ8. that was about four years ago i found out. i have done absolutely everything right since then. i've eaten a perfect gluten-free dairy-free diet of amazing whole homemade organic foods. i've only had 3 gluten "incidents" :-) in all those years. also, for more than 4 years, i stuck to a candida type diet and took a bit of nystatin most mornings and other anti-fungals from time to time. i ate very little starch or sugars of any kind. i hardly even ate fruit as that caused bloating

but still, after 4 years i have serious food allergies (more and more) and bloating and, i'm pretty sure if i were to be tested tomorrow, my small intestine would still look like mown down grass. to make matters worse, i started to develop terrible chemical sensitivity. to everything it seems!

again, even though i, a confirmed celiac in every way had stopped all gluten, i was still not getting better. i was getting worse.

well, last week i received a test back for heavy metals and lo and behold, i have some of the highest mercury and lead content of any human my several doctors have ever seen. (i'm starting the andy cutler protocol where it's small doses of chelators done frequently. it's a very disciplined regimen that seems best for my high amounts.)

that's my story, simplified. i stumbled on this site because i started getting curious to know if there was any correlation between villous atrophy and mercury toxicity. i especially wondered if one's gut get could damaged simply from toxic metals.. i haven't an answer yet but i CAN tell you that, at least in my experience, there's something more than gluten that will mess up your gut.

being the good celiac girl that i am i will end my post by emphasizing here that i DO think gluten is behind all of my woes (and probably most other people's woes) simply because, since it messes with everybody's gut, yeasts, bacteria, mecury, lead, arsenic, aluminum and what have you all have an open door into one's bloodstream.

gluten is surely to blame but i now think these other things have to be addressed as well if we are to recover our good health.

~robin

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

okay now here's the other post. forgive me if i am too off-topic. i'll try to write a direct post when i get a bit more time.

QUOTE (GlutenWrangler @ Dec 25 2007, 01:11 AM)

Robin,

You may have Refractory Sprue, which is what I have. It is rare, but its defined as: presence of persistently damaged villi in the small intestine that are not repaired after the gluten free diet has been successfully initiated and/or maintained, an increased presence of intraepithelial lymphocytes (IEL) in the small bowel, and severe malabsorption. If you still have flattened villi, it may be a possibility. I hope you feel better soon,

-Brian

hi brian, yes, my mainstream celiac doctor, a couple years ago, told me that he thought i had a "refractory" case. what I'M hearing him say though is that he is giving up; shoulders raised, hands in the air, "mystery illness" pronouncement, (once again,) "have a nice day" and "next?"

i mean, simply knowing the name, or simply knowing that my body isn't healing like he told me it would is no consolation and has only sought to made me look elsewhere for the why? of it...

that's how i found the other M.D., an integrative guy who helped me conquer the enormous yeast/mold population, bacterial infections, parasites and now metals i built up and housed over the years.

and throughout all this we've steadily been considering lyme and i've completed atreament with some homeopathics that helped me a great deal a year ago.

and now, to that end, i'm using something called sycirque (sublingual and lotion) and san pharma firmus (both from an evolution of the pleo remedies) to help my body search out and eliminate any residue of lyme or any other pathogen that might be the cuprit. having very recently completed this array of remedies, i get to move up to the next step in treatment. as mentioned, the stuff relies on a sublingual, a suppository at night and a cream you put on the liver points. interesting and i have absolutely no idea if it's working.

of course the heavy metal toxicity is firmly in my sites at the moment.

thanks for your kind wishes. i hope you feel better soon, brian.

~robin

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

oops. and here's a third one. hope this fits into your discussion??

QUOTE (mftnchn @ Dec 25 2007, 02:04 AM)

Robin with the mercury toxicity, I'd also check out lyme. There seems to be a high correlation there.

I am pretty sure I have celiac, plus have lyme and mercury toxicity. I am homozygous for DQ2. However, I haven't had biopsy or blood testing, just Enterolab since I'm overseas. After reading your post, I am thinking it could be still working checking to see if I have flattened villi, especially if my malabsorption hasn't improved when I check it next month.

hi mftnchn, having gone through the biopsy required for gaining the "marsch stage III villous atrophy" designation, i must say, in retrospect, it was, in my opinion, rather unnecessary and highly invasive. it's a pretty decent sized surgery, further messes up an already struggling system. and to what end? it will probably tell you something you already know...

as i said, i'm new here and have learned a lot since i got snapped up into the american medical establishment's pronouncements. this is no big news here when i say i quite honestly think that gluten isn't good for anybody, especially those with the hla genes. genes or not, if you don't eat it and then eat it and feel bad for awhile, maybe just a day or two, then you probably have some stage of gluten enteropathy. if you eat a mere grain of it and feel terrible for a month then you probably have a full-on problem, as i do, and probably have one or all the genes. you probably also have some stage of villous atrophy.

gluten intake has become quite easy for me to control. i don't even miss it. that's why i'm rarely on boards anymore. i'm definitely out of the loop on the politics and group-think about celiac these days so please forgive me if i sound glib.

what a person calls celiac or doesn't call it makes little difference to me these days. i think that widespread damage caused by gluten leads to all sorts of widespread damage by other things. it might be metal, it might be yeast/mold, parasites, bacteria, allergies, chemical sensitivities.. i've had them all because i was a rip-roaring wheat munching 52 year-old when i simply caved in with illness and health disasters. some of you may remember me from the native nutrition, gfcfnn yahoo group but i had poisonings, an h. pylori bacterial infection that put a hole in my stomach, the works. 911 on the speed dial i used to say... i finally had to move way up to the mountains to try to stay alive. get a handle on things. i was really sick.

i'm doing great compared to then but am now plagued by the continued lack of energy, weird food allergies and chemical sensitivities (the worst of the three).

but i continue to feel that if i peel each layer away, one tiny bit at a time, my so-called refractory sprue/celiac will be a thing of the past and, once again, i will be able to tell the doctors that they were oh so wrong. i can heal this thing.

~robin, sorry to get on a soapbox at the end thar... :-P


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mftnchn Explorer

CarlaB Enthusiast

Welcome, Robin!

I had heavy metal toxicity, but mine was low ... I had my amalgams removed in 1991 and chelated back then, so this time around it was lead, but it wasn't bad.

My main issue has been Lyme and treating the Lyme has made my gluten intolerance go away completely, but I'm not a celiac, though at one point I had celiac symptoms and reactions to gluten.

I also had bacterial dysbiosis (klebsiella and citrobacter) and a tapeworm.

I've been treating for almost a year and have gone from being pretty disabled to about 90% of normal.

A lot of us are in the same boat. It sounds like you're on the right track. Lyme could be the missing piece of the puzzle, it certainly wouldn't surprise me as you have the symptoms most of us here have and most of us have turned out to have Lyme.

Andrea, I didn't know that ... but thinking about it, I should have known ... makes sense.

dlp252 Apprentice

Welcome Robin!

Many of us here are dealing with more than just the gluten issue, so just about anything is on topic these days. I have lyme, heavy metals toxicity, mold toxicity and of course the gluten and casein intolerance. I also was getting more and more chemically sensitive...developed allergies out of the blue, tons of them, lots of food intolerances, etc.

mydogisdewey Newbie

to sum up (i can't help it) of all the things i've sought to eliminate or control over the years, here's the order of what i have systematically done:

1. get gluten and dairy out of the diet (public enemy number one)

2. control expected yeast/mold over-growth (esoterix has great molds test) i happened to be extremely high in candida albicans, aspergillus and penicilium. used candida scd intense diet for 6 months and only THEN added natural anti-fungals like thorne sf722. later nystatin, even diflucan occasionally and itraconozole. i still use nystatin powder first thing in morning. great stuff.

3. get control of bacterial overgrowth. doctors data test. i had high citrobacter among other things. used xifaxan because it mainly operates in gut.. don't even THINK of using parenteral vivonex -- biggest mistake i ever made. ack.

4. control parasites. labs are notorious for not finding these so good luck. also remedies are specific to types of parasites so helps to know. i finally was so desperate i went through glen wilcox in albuquerque who provides access to a nigerian doctor named iberheem.. when labs here found nothing, this doctor found pin worms and a couple of other very gross miserable things and i used his (expensive!) herbal supplements and, later, alinea. advice: don't even bother with test. try to get your hands on some alinea.

5. control environment. in my case it was mold exposure from living my entire life on the wet west coast. not an allergy, there are mycotoxins in mold spores (to keep them from being eaten by bacteria) and one can get toxic build-up from the spores. the toxin doesn't decompose afaik.

read more on mold if ya want by ritchie shoemaker (who is kind of over-the-top but his basic ideas about pathways and about a genetic predisposition to retaining toxins made sense to me. and, as i mentioned, i have both of the hla dq celiac genes and one of ritchie's the so-called "multi-susceptible genes" so, to my way of thinking this means celiacs have at least a 50% chance of being susceptible to other toxins, not recognizing them hence build-up. eventual overload. illness.

ok. for mold, heck i finally just up and moved to taos new mexico. i improved Dramatically! this was the largest single improvement i've made in all of this. simple clean dry air. natural cave man type building. ahhhhhhhhhh...

not everyone can move so try to learn about mold in your homes or work and control exposure there. nothing else you can do really. oh i guess you can wear a merv-11 mask - small enough to filter spores.

6. control metals: when, through diet and good remineralizing, elimination is good enough, get heavy metals test. doctors data is the gold standard afaic. i did the 6 hour provoked urine test but now i learn it's controversial in that the test alone is very hard on the body. the guy to read up on this subject is andy cutler. he recommends frequent, low dose chelation with dmsa and then carefully! small amounts of ala added in.

do not attempt to do ANY sort of detox until you've read his basic principles. they make sense and arbritrary detox, as i'd been doing, just continually stris things up and body reabsorbs.

i can explain this more as that's what i'm just starting now. as i mentioned my doctors data test indicated that i had three times the most elevated ranking you can have on the chart for mercury, lead, aluminum, arsenic and thallium.

so............. in retrospect i think this was the proper order of approach, one step at a time and patience achieves the goal. the real culprit is gluten and more or less of a genetic predisposition which, to my way of thinking, causes us to let all sorts of pathogens in the door to stay.

after each of these, sometimes long, regimens i felt noticeable better. i mean it was obvious and, in fact, each time i thought i had the whole problem licked and i was good to go.

not so. always another peel of the onion... stay focused and it passes before you know it. i DO think that, after gluten exposure, the metals is extremely key to all these problems we confuse with die-off and yeast and allergies and, well, just about everything. the symptoms of metal toxicity are very much like the symptoms of all these opther little pieces.

and it would make sense to do the metals right off the bat, after eliminating gluten, but the problem is the all these other pathogens inhibit the detoxification process and so you just redistribute the metals. can't get them out of the body. literally.

i wrote this fast and left lots out but you get the idea.

happy new year. best of health to all!

~robin

mydogisdewey Newbie

oops oops oops. yer right! i fergot lyme... well, another toxin, it makes sense we all have bits of that floating around too. my doctor is convinced that, despite my metals, lyme is still an issue. i'll try to explain his new lyme protocol when i get a chance. now i REALLY gotta run. thanks for the thoughtful notes!

~robin

mydogisdewey Newbie

btw, anybody know why my photo doesn't appear? ~r


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ShadowSwallow Newbie

Merry Christmas Everyone!! :D :D

aprilh Apprentice
oops oops oops. yer right! i fergot lyme... well, another toxin, it makes sense we all have bits of that floating around too. my doctor is convinced that, despite my metals, lyme is still an issue. i'll try to explain his new lyme protocol when i get a chance. now i REALLY gotta run. thanks for the thoughtful notes!

~robin

Robin,

I would be very interested to hear the protocol. I am still learning about lyme. I have been battling candida for a while now and now have discovered the heavy metal connection. My liver is sluggish and I have become very sensitive.

Needless to say, I started out thinking I was celiac, but I think there are so many factors in all of this that being gluten free is not necessarily always the answer.

april

Green12 Enthusiast

Just a quick drive by...

Merry Christmas everyone :wub:

confusedks Enthusiast

Carla,

I agree with thinking it's babs. The LLMD also thinks I have it...but I do think that the pink/orangish urine is from the b-12 shots.

Andrea,

At least there are some days they get along...lol!

Everyone,

I will call the Pharmacy that makes the b-12 shots tomorrow and see what they say about my strange urine issue. I also have started to have bm's of completely undigested food! (sorry...TMI, but I figure nothing is TMI on this thread :lol:) I literally saw the bark I ate :ph34r:. Very strange!

mftnchn Explorer

Welcome Robin! Glad you jumped right in.

Merry Christmas to all! I'm a day ahead of you all, but had a great traditional meal that was GFSFCF except the dinner rolls that the other had carefully. ;) We had turkey which was a real treat, the first time in the 6 years I have been here.

Felt a little better the last two days and am not going to break with the zithromax this weekend, hopeful it will help. Leaving on my next trip on Friday for 10 days and not much energy to do so. Will do another "gua sha" and a very cautious massage, LOL! Maybe I'll ask her to do my abdomen and see what happens after Donna's good experience.

I haven't hit the Candida diet hard yet, but the next couple of days will definitely start.

Robin, to recap for you: I was diagnosed with lyme in 2000 and got hugely better, but can't successfully get off abx. I learned about the mercury toxicity at the same time. Have been chelating for a couple of years, mostly oral due to being overseas. It has not caused much change in my mercury levels. Discovered the celiac in April, 2007, after doing Enterolab to try to see if this was a cause of constipation that hadn't responded to many other approaches. Was shocked to discover double DQ2, plus very severe malabsorption and positives for gluten sensitivity. AFter going gluten free the lyme disease flared and I have been struggling with that the rest of the year.

I've decided with the help of this support group to do some alternative testing next month to see if we can figure out the missing pieces and prioritize what to do. We are now also wondering if I have untreated Bartenella coinfection. I'm returning soon to the USA for two and a half months so hope to get some answers.

Kassandra, looking forward to hearing the answer about the B12. I have been giving it in my arm...I wonder if that is a good thing? But no stinging, or hardly any.

mftnchn Explorer

Does anybody know what the differences in the two forms of B12 injections might be? My doc sent two kinds, and I am to try each for three weeks. I started with the one Rachel is taking, methylcob, and now am trying Hydroxocobalamine. Could my recent symptoms have been not tolerating the methylcobalamine? I might be a little better since switching.

Rachel--24 Collaborator
Everyone,

I will call the Pharmacy that makes the b-12 shots tomorrow and see what they say about my strange urine issue. I also have started to have bm's of completely undigested food! (sorry...TMI, but I figure nothing is TMI on this thread :lol:) I literally saw the bark I ate :ph34r:. Very strange!

I never had red/pink urine while taking my B12 shots. The B12 itself is naturally red in color....maybe you were excreting some?? Not really sure. Red or pink urine could also be blood.

I get very dark urine at times...probably because of my gut infections...but its definately not pink or red in color....its just very dark. I noticed I had very dark urine during the full moon.

I used to see just about everything I ate coming out undigested...whole pieces of lettuce, chunks of this and that....it was very worrisome at that time. Its very likely you have parasites as well as the yeast. I believe its the gut infections which cause inflammation leading to leaky gut and malabsorption. Its very unlikely someone would have yeast without parasites....or parasites without yeast.

Welcome Robin! :)

I responded to your post in the original thread you posted in.

Everyone,

Well I had a totally normal Xmas dinner last night! I had mashed ptotaoes, gravy, stuffing, ALOT of cornbread :ph34r: , carrots (I skipped the green beans cause my body really hates them), yams (a small amount cause of past experiences) and pumpkin pie. The only thing I didnt have was the turkey! I had my beef and peas as well. :rolleyes:

I had 2 platefuls and the only symptom I got was bloating! :huh:

I did not get *any* reactions other than the bloating??

The only reason I can think of is that the Ketotifen (antihistimine) worked!! I just started taking it...I take it 30 minutes before eating. The first few doses made me very drowsy which is a common side effect for the first few days. Last night I did not get tired after my dose. If it was not the ketotifen I dont know what else....maybe God just gave me a break. :D

During the day I ate a few snacks here and there...including cheese, some chips, dip etc. I DID have minor reactions to all the snacks I was eating but I didnt take the Ketotifen before eating this stuff. I did not expect to get away with eating a whole dinner without sufferring to some degree. I did not even wake up today swollen or with numb hands! :blink:

Anyways...I did get bloated and gassy...and I did feed the beasties so this is definately a one time thing. ;)

Heres some info. about Ketotifen....there is also more info early on in this thread...I was taking it for a short time in early 2006.

Open Original Shared Link

Open Original Shared Link

I hope everyone had a wonderful Xmas!! :)

CarlaB Enthusiast

Rachel, I'm glad you got to eat a normal dinner.

Sorry, I don't know anything about B12 injections.

I saw another piece of worm the other day .... it's the one that I can't tell whether it's "digested" tapeworm, or a roundworm. But, I'm thinking maybe I shouldn't wait the full 90 days to use Humaworm again .... maybe 30 days just wasn't enough for me.

Then again, I'm not taking anything right now that would be attacking a worm, and I'm still excreting it .... that must mean I'm not good terrain for a worm anymore. :)

My cold seems to have taken a turn for the worse ... I was so clogged up at 6AM that I took a Benadryl ... then I slept till 9:30 but was too groggy to get up for another hour. My knees hurt, so the Lyme is flaring a little, but that's really the only Lyme symptom right now .... I think I'm sluggish from the cold.

I didn't do a coffee enema yesterday .... I wonder sometimes how much credit to give that .... could that take so much of the toxic load off that it would make a difference in a cold? I just pretty consistently feel better when I do them ... I guess even if it's a mental thing, it's still worth the effort. :lol:

AndreaB Contributor
I've decided with the help of this support group to do some alternative testing next month to see if we can figure out the missing pieces and prioritize what to do. We are now also wondering if I have untreated Bartenella coinfection. I'm returning soon to the USA for two and a half months so hope to get some answers.

Kassandra, looking forward to hearing the answer about the B12. I have been giving it in my arm...I wonder if that is a good thing? But no stinging, or hardly any.

I can't wait to hear how that goes! :)

My doctor told me I could do the shot in my arm or my thigh, so it shouldn't matter with that.

Well I had a totally normal Xmas dinner last night! I had mashed ptotaoes, gravy, stuffing, ALOT of cornbread :ph34r: , carrots (I skipped the green beans cause my body really hates them), yams (a small amount cause of past experiences) and pumpkin pie. The only thing I didnt have was the turkey! I had my beef and peas as well. :rolleyes:

Fantastic! :D

Kassandra,

I'll be waiting to hear what you find out.

Carla,

Sorry about the cold turning worse. :( I don't know about the enemas, but they obviously don't hurt.

More worms. :ph34r: That's got to be a good thing too.

mydogisdewey Newbie
Does anybody know what the differences in the two forms of B12 injections might be? My doc sent two kinds, and I am to try each for three weeks. I started with the one Rachel is taking, methylcob, and now am trying Hydroxocobalamine. Could my recent symptoms have been not tolerating the methylcobalamine? I might be a little better since switching.

i think that for we sensitive types, the methylcobalmin is the way to go. and the reason is that i THINK the regular cobalamin contains preservatives and some people have had reactions to these. the methylcobalamin is another form of regaular cobalamin but don't know enough to explain exactly what.

~robin

ps. btw, i'll try to get the details of the lyme protocol that helped me. i THINK i can find out on thursday when i have a long over-due phone appt with my doctor. basically it was a combination of a whole bunch of homeopathic remedies given at different times. my doctor said he usually doesn't use homeopathics but told me that he has had success with them and treating lyme.

Green12 Enthusiast

Welcome to Robin, thanks for all the info you have shared :)

Carla, so sorry you are not feeling well today :( . (But your CHristmas sounded lovely so I am glad you were well enough to take part in all of that!!)

I imagine the coffee enemas contribute to clearing out a lot of the toxin burden. I know for me, even a clear water enema, or a lemon juice or acidophilus enema would make me feel night and day different if I was experiencing a lot of symptoms.

Rachel, OMG amazing you ate a typical holiday meal and just feel bloated. That's a pretty NORMAL body response :lol: and says a lot about all the progress you have made...CONGRATULATIONS!!! Hope you enjeoyed every last bite :)

Kass, I know nothing about B12 shots, hope you figure that all out.

I have really dark and concentrated urine lately. I contribute to what is going on with my kidney and liver function. It can also be a sign of dehydration and more water and fluids will help if that is the case. Some vitamins/minerals and supplements can also cause dark or different color urine, but i am drawing a blank on which ones....

Susie UK, thanks for checking in. I am sorry to hear you are struggling. I hope things turn around and get better soon for you. Don't be a stranger!

How was everyone's Christmas??

We got snow, lots and lots of snow :)

aprilh Apprentice

Lately I have been having a wierd symptom - i feel like my head is big. Almost like I can feel my blood pumping in my head. Its really hard to explain! But its wierd! I thought maybe it was from my liver, but really not sure on that. I really don't know what its from, but I wish i did!!

AndreaB Contributor
How was everyone's Christmas??

We got snow, lots and lots of snow :)

Our Christmas was very quiet.

We were supposed to get some snow last night but they changed the forecast to 500ft and above so we didn't get any. :( Mitch should be very happy about that though. :)

dlp252 Apprentice

Had my appointment today with the HN doctor to go over my latest adrenal/neurotransmitter testing. My adrenals are still not working right. :( My DHEA is really low as is a few other things. She doesn't want me to supplement with the individual stuff though...she wants me to take pregnenolone which is a precursor...I was taking this one year ago, but they only had me take it for a little while. So I'll be picking some up on Saturday.

She also wants me to try a trial period without any melatonin at all. My melatonin level was really low on my last test...I didn't think to ask her about that though. Anyway, she was saying that melatonin in some people can work the opposite way. Since every other sleep aid works the opposite way in me, maybe I've just gotten used to this and it's just not working the way it should. I think I've tried going without it before and can't sleep at all, but I guess I'll give it a try.

She also wants me to stop taking the 1 50mg capsule of 5-HTP. SHe wants me to up a few of the neurotransmitter supplements I'm taking already and wants me to wean off one completely. There's a new (to me) one she wants me to order from the lab.

Speaking of worms, lol, I haven't seen any of the rice like stuff in a few days now...maybe as long as a week and a half! That has to be good.

Kassandra,

Yep, no such thing as too much info here. :lol:

Sherry,

Glad you are feeling better. I've started my candida diet today. I'm not getting super strict just yet, but I am cutting out all obvious simpler sugars for the next couple of days. So far today, I've actually just had meat, lol. In a bit I'll make stirfry of veggies and chicken. Your dinner sounded wonderful! Ummm.

I don't know the difference. I'm wondering what kind I had. I know the sublingual tablets are methylcobalamine, but I don't know what the shot was. I still have to call them and ask questions about doing this at home, so maybe I'll ask about that too.

Rachel,

OMGosh, your dinner sounds heavenly! I made the mistake of eating some olives and three pieces of chocolate and I am still paying for it. :angry:

Carla,

Sorry the cold is worse! I've been impressed with how long you've been able to keep going with it though.

Julie,

Snow for Christmas is something I've always wanted to enjoy, lol.

April,

Yikes! That sounds scarey. I've had a return of the palpitations high up in my chest. It's so high it's almost in my neck. It kind of scares me for a while and I have to really concentrate on calming down. It happens at almost any time of day. I think Rachel has had the head thing happen to her...I think she gets it from certain foods that she eats...not sure exactly what, but I know she has said that she feel like her head is big.

AndreaB Contributor
Had my appointment today with the HN doctor to go over my latest adrenal/neurotransmitter testing. My adrenals are still not working right. :(

Was there any improvement at all? Even just a wee tiny bit? :(

confusedks Enthusiast

I called the pharmacy that gave the b-12 shots and they said pink urine is totally normal. Phew!

Sherry, I am doing the methyl shots...don't know if that helps you at all.

Robin, welcome!

Donna, I MUST start my candida diet soon! I want to start tomorrow, but I need to go shopping first because I need food! I am going to look over the links Tom posted so maybe I'll get motivated.

confusedks Enthusiast

Jin, The name of the lab we used for the candida test is BioHealth. The test name is D-arabinitol. :)

dlp252 Apprentice
Was there any improvement at all? Even just a wee tiny bit? :(

Not really I guess. My DHEA was off the last time too and my epinephrine is still really low and my GABA and Glutamate is high. My cortisol is okay until afternoon. :( My lowest time is in the morning, which totally explains why I can't work out in the mornings anymore and why I have such a hard time getting out of bed. I used to get up at 4:00, do an hour long intense workout, then go about my day with tons of energy most of the day. My afternoons are not ideal but they are more normal and my evening my levels are right in the optimal range. So my middle of the night and early morning levels are totally whacked out. :angry: I had been feeling more energetic, but in the last few weeks am back to feeling that drop in energy. I may have to start taking NT Factor again. I stopped when I started taking the neurotransmitter stuff.

Donna, I MUST start my candida diet soon! I want to start tomorrow, but I need to go shopping first because I need food! I am going to look over the links Tom posted so maybe I'll get motivated.

Glad to hear the pink urine is normal! Phew is right!

I was going to start the diet on Saturday after grocery shopping, but decided I can do it now...it will be better when I am better prepared, but I'm feeling like I really need to start now for some reason. I haven't been feeling well the last 3-4 days, and mostly I feel like it's because of the crap I've been eating, lol. :lol:

I also haven't been hungry, so decided to take advantage of that while I can--it doesn't happen that often. :P:lol:

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    • Kwinkle
      Thank you, Trents- are there any safe alternatives?
    • Scott Adams
      I agree with @trents, it's not typical for gluten exposure to cause symptoms as delayed as a week or two after ingestion. In most cases, reactions to gluten occur within hours to a few days, depending on individual sensitivity and how much gluten was consumed. The delayed symptoms you describe—stomach cramping in the mornings and flaky stool—might suggest that something else is contributing to your discomfort. Cross-contamination is a common challenge, especially when dining out, and it's great that you're doing your best to stay gluten-free. However, the inconsistency of your symptoms and the long delay between exposure and reaction could warrant further investigation. It's possible that another gastrointestinal condition, such as IBS, a food intolerance, or a reaction to something else in your diet, might be contributing to your symptoms. You might consider keeping a detailed food and symptom diary to identify potential patterns or triggers. Additionally, consulting your gastroenterologist could provide clarity. They may suggest testing to rule out other issues, such as small intestinal bacterial overgrowth (SIBO), microscopic colitis, or other sensitivities. If you suspect cross-contamination is a significant issue, you could also ask for follow-up bloodwork (e.g., tTG-IgA) to check if your antibodies are elevated, which might indicate ongoing gluten exposure.
    • Scott Adams
      Good to know, here is their website: https://polly-o.com/
    • Scott Adams
      No cure so far, and a treatment might still be years away. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      I'm not sure the article would be misleading, as it offers many different avenues to pursue for those with ongoing symptoms. The recommendation to keep a food diary and remove common food intolerance triggers would be a good way to discover issues with casein/milk, especially if you added that back to your diet after a couple of months and your symptoms returned. Many additional food intolerance issues can be permanent in some people. 
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