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Omg...i Might Be On To Something


Rachel--24

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AndreaB Contributor

Mia,

I may have been able to use seeds had I thought about it. Thanks for the suggestion though. :)

Carla,

I hope your kitchen goes smoothly and without any hitches so you can have it done by Thanksgiving.


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NoGluGirl Contributor

Dear Mia,

It is nice to see you on here! :) We have missed you. This is the first time in a week you have posted I think. Everyone is disappearing! There is a black hole, and people seem to be getting sucked in. :unsure: A vortex is sucking people out of Rachelville!

Meanwhile, how are you doing? Are the chelation treatments going alright? The colonics were helping the last you posted. That was good to know. Any new developments?

Dear tom,

Wow, those people must not be used to the forum at all! :o They will get the hang of it. Many people still will not use computers. I am surprised by how many people do not like using them. I am on them more than I should be.

Whose dog is that? What a beautiful St. Bernard! :) He may actually be as big or bigger than my aunt's dogs! She has English Mastiffs. They are big babies, but can be dangerous due to their playfulness and size! :lol:

Dear Andrea,

Too bad you did not know about the seeds before! At least you will keep it in mind for next time! I would love to have that AeroGrow Garden. You can grow fresh herbs right on your kitchen counter with hydroponics! Wouldn't that be nice?

Sincerely,

Jin

miamia Rookie

jin-

yeah i ahve not been posting much. It does seem people have been disapearing- julie, rachel, donna, etc. I hope everyone is ok.

I have my tenth chelation this week and will be tested afterwards- i am really curious to see the results . It is on wednesday. I am impatient!!!

I am still taking a worm, parasite medication its for 10 days. I am on day 8 today. I can't wait for it to be over it is taking its toll on me.

I have had a lot of trouble with C lately and am not quite sure what to do.

After the worm meds i may be doing a detox treatment just to slear myself out. I think i found one with ingredients i can tolerate. But who knows.

Miamia

mftnchn Explorer

Hi, everyone. Just caught up, have been busy for several days and now am on another trip. My schedule for the fall is heavy. Glad I am feeling better overall!

Mia glad to hear from you, I see you online--are you awake in the middle of the night again?

Patti, great to hear from you too.

Thanks Rachel for the mercury info. Actually I haven't had very strong symptoms around the DMPS, but will try to step up my regime. I can't easily get any supplements beyond what I have. I can't find chlorella here either, but can get spirulena. Would that help, anybody know?

Taking charcoal, eating lots of cilantro, doing the Vit C/magnesium (just morning BM's followed by ecoffee every day), take milk thistle for liver, mineral supplement except with the DMPS, and also theralac probiotic twice a day. Also cysteine and L-glutamine, and a dose of cellulose for a fiber. Skin brushing, when I remember. ;)

I could step up the Vit C and cellulose on the days of the DMPS and try to see if I would elminate more through the day.

I am not herxing now with the weekly Flagyl, but am having more nausea these days. I might go back on the mastica in case the ugly h pylori has reared its head again.

So far, I have had very little allergy symptoms during what is usually a bad time of year for me. I think that is excellent indication that something right is happening with my body!!

Hooray for all of us who have and are making progress!!!!

confusedks Enthusiast

Jin,

Did you have severe cramping with your gallbladder? I am having the WORST cramping and it feels like my period, but I don't have it and I'm not close to having it. This is really bad!!!

Kassandra

dlp252 Apprentice

HI everyone...sorry I disappeared. I haven't been able to log on since Friday...well, Friday evening I just didn't feel like being on the computer, so really didn't try, lol, but tried a few times yesterday and couldn't get on the boards.

ANDREA!!!! HAPPY BELATED BIRTHDAY!!!!!! I'm so very sorry I didn't get to wish that to you on your actual birthday!!! <_<

Mia, good to see you and will be curious to see how your session goes this week.

Sherry - I don't know you you do all the travel!!! Amazing!

Susie - For metals, I'm doing only a gentle detox at the moment, so I'm only taking chlorella and pectasol (a fiber) specifically for the metals. I'm also taking glutathione and alpha lipoic acid which are supposed to have some affect on metals (whether director or indirect) and a SLEW of other supplements which support general health.

I had a massage yesterday and I got horribly congested as she was working in me...she said that was a sign that the massage was working and that I was detoxing...the subject of baths came up and she asked if I go home and take baking soda baths...I said I usually take epsom salts and sometimes put baking soda in there. She said "oh, that's a strong bath". :o

So I asked if it was better to do just one at a time and which was better...she said that the epsom salts are good for the muscles and relieving pain, but that the baking soda was good at pulling out the toxins from the body. She even said that if you eat a bunch of bad food then take a baking soda bath the water will turn grey...not sure if I believe that one, lol, but it sounded good. So Susie, that might be a cheap way to do a little detox.

dlp252 Apprentice

Okay, I'm breaking up my posts because one would have been much too long, lol. Anyway, I said I list the breakdown of ingredients in the Adrenal supplement I was taking:

Support Adrenals by BioMatrix:

Serving Size: 2 capsules (Note, I was taking 2 at breakfast and 2 at lunch, but the amounts below are for two capsules)

100 mg Vit C (88mg as Ascorbic Acit, 12mg as Ascorbyl Palmitate)

50 mg Thiamin (as Thiamin mononitrate)

50 mg Riboflavin

50 mg Niacin (40mg as niacinomide, 10 mg as niacin)

50 mg B-6 (30 mg as pyridoxine HCI, 20 mg as pyrodoxine 5 phosphate)

400 mcg Folate (as Folic Acid)

100 mcg B-12 (as cyanocobalamin)

2000 mcg Biotin

200 mg Pantothenic Acid (as calcium panthothenate)

1.5 mg Zinc (as Zinc Malate)

.55 mg Copper (as Copper Citrate)

75 mg PABA (para-aminobenzoic acid)

50 mg Lemon Pure Form Bioflavonoid complex

50 mg Choline Bitartrate

50 mg Inositol

36 mg Dried ethanol/water extract of rosemary leaf (4:1)

36 mg Naringin (extracted from grapefruit)

36 mg Hespiridin Methyl Chalcone

10 mg Rutin

8 mg DHEA (dehydroepiandrosterone, micronized)

8 mg Pregnenolone (micronized)

The only other ingredient was gelatin for the capsule. As I mentioned I took 2 at breakfast and 2 at lunch, plus supplemented with liquid DHEA, Pregnenolone and Progest. (This was based on an adrenal test I took...it showed which hormones I was deficient in and that is what they used for this regime.) I started this regime in November and continued for several weeks on a specific schedule that my doctor gave me. I think around January is when I came off this schedule and mostly just continued with what the BioSET lady put me on. The doctor did want to keep me on Progest but that is the one that causes my lips to burn so I stopped it myself. :P In January I started BioSET and she put me on a bunch of additional stuff, but specifically for adrenals was a multivitamin which looked a lot like that listed above and a separate sublingual B12 and a liquid B complex.


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tom Contributor
Whose dog is that? What a beautiful St. Bernard! :) He may actually be as big or bigger than my aunt's dogs! She has English Mastiffs. They are big babies, but can be dangerous due to their playfulness and size! :lol:

He was *pretty* darn BIG!! He belonged to that guy in the pic. The pic is in front of my fav SJ coffee house, in that nice tranquil little Willow Glen neighborhood, taken from my spot in the sidewalk table area. :mellow: ahhhhhhhh I love my Willow Glen.

It was funny to see the rest of dogwalkers look a little worried as they approached. This Big Dog could almost swallow some of theirs whole! :lol:

CarlaB Enthusiast
No! Now I'm wondering about the late 80s! :lol:

Ha! Married in '84 in Austin after graduating from Indiana University ... moved to Houston, then LA where oldest was born ... then to St. Pete., where #2 was born in 1990.

AndreaB Contributor
I have my tenth chelation this week and will be tested afterwards- i am really curious to see the results . It is on wednesday. I am impatient!!!

I am still taking a worm, parasite medication its for 10 days. I am on day 8 today. I can't wait for it to be over it is taking its toll on me.

I'm excited to hear the results from the next challenge test too. :)

I'm sorry about the parasite meds doing you in. Only 2 more days!

HI everyone...sorry I disappeared. I haven't been able to log on since Friday...well, Friday evening I just didn't feel like being on the computer, so really didn't try, lol, but tried a few times yesterday and couldn't get on the boards.

The boards were down for a little while yesterday.

That's interesting about the baking soda......I'll have to keep that in mind.

Sherry,

Thanks for the update. I don't know how you do all the traveling all the time either.

Tom,

St. Bernards are beautiful dogs.

dlp252 Apprentice

Now, about my BioSET appointment yesterday. The main reason for the appointment was to go over the test results from the stool test and blood test. We really never went over them, lol. I asked twice and got a couple of things, but we ended up treating me for environmental allergies. :P

She called me back and I said I don't even think I have a treatment today...I have some tests to go over...she said, yes we do but I think I wrote something down about testing your thyroid. (pssstttt....we never did test for thyroid :lol: )

Anyway, I mentioned how I feel like I've taken a step backward, both with my energy and with my "allergies". I told her that when I found out about the gluten/casein and cut those out...my sinus issues went away almost entirely. The only time in the lsat year and a half that I've been bothered by them was when I get my allergy shots or if I ate too much chocolate. So we got to talking about the allergies and she agrees with me that they don't sound like true allergies. She also thinks I should stop the allergy shots (that's two of my practitioners now who think that, lol).

Anyway, she realized that we have never treated me for environmental stuff and that if I'm getting shots for them, maybe we should test and treat. Previously we just did foods, so she tested and then treated me for some environmental stuff. The stuff that came up was no surprise: vehicle exhaust, dust, dust mites (although on the last skin scratch test I had dust and dust mites no longer came up with positives), ragweed (this was new...that has NEVER come up on a skin scratch test), perfume, smoke (all kinds). A few other things came up which I can't remember. This will involve two more sessions, and then probably the thyroid panel, so at least 3 more sessions.

Now, about the tests. Didn't get much detail, but here is the gist:

Vitamin D - To me it looks like I'm in the "normal" range, but I am well below what they'd like to see the level at, so she is megadosing me for a month with a bunch of it, lol. She said the theory is to flood (and overload I guess) the "receptors" or whatever technical term she used which is now long gone from my brain, but this is the gist of it, for a month.

She said my intestinal disbyosis is reasonable but then gave me some things I could take for the candida. I didn't understand this and I asked twice but didn't get any clearer a picture. I can't tell by looking at the copy of the test she gave me either. We did two tests, "bacterial culture & sensitivities" and "yeast culture". The one she said was fine, so the one I got a copy of was "Yeast Susceptibilities", which looks to be from the "yeast culture" test. So I'm guessing I don't have a bacterial dybiosis problem.

Anyway, the introduction on the results sheet says: "When abnormal microflora or significant aberrations in intestional health markets are detected, specific interpretive paragraphs are presented. If no significant abnormalties are found, interpretive paragraphs are not presented." Then the next paragraph is for Cultured Yeast and specifically mentions candida but it seems like a generic paragraph and not one that would indicate a problem.

Now after that are some bar charts: One for Rhodotorula mucilaginosa...listed there are some prescriptive and some natural agents which this rhodo thing is either resistant to or sensitive to. After that is another chart for Candida guilliermondii. Looks like for both nystatin would work as both showed sensitive to it, and for natural agents Caprylic Acid and Oregano Oil came up, so Anna suggested I try both of these.

Now here's what I don't understand...there's one more chart thing for Mycology (Yeast) Culture. Normal flora is on one end and Dysbiotic Flora is on the other end. Both came up on the normal flora side with 1+ after them. There is absolutely no chart which gives what 1+ means, but at the location the numbers appear is pretty close to the center of where normal and abnormal meet.

Below that is another box which lists Yeast KOH (microscopic), then after that a box under the word Normal and a box under the word Abnormal, than a Reference range of None-Rare. In the box under Normal it says "none". What the heck kind of results are these. Sheesh. A lyme brain just can't handle that kind of thing. :lol: I need it to clearly say, YOU HAVE A PROBLEM. :lol:

So to me that sounds like I'm okay and that I have a normal bowel flora...now, I don't take that to mean I can go buy another package of cookies, but maybe I can have a little bit of fruit here and there, lol.

Rachel--24 Collaborator
jin-

yeah i ahve not been posting much. It does seem people have been disapearing- julie, rachel, donna, etc. I hope everyone is ok.

I havent disappeared...I think I'm still here. :P

Hehe....I pop in and out....yesterday the board was down. I was thankful I got in here before that and was able to wish Andrea a Happy B-day. :D

I hope you had a good day Andrea!!!

I have my tenth chelation this week and will be tested afterwards- i am really curious to see the results . It is on wednesday. I am impatient!!!

I'm thinking that the results might look different from your last test. The last one was off the charts right?? I didnt know you still had amalgams in at that time. IV DMPS is known for pulling metals from the fillings....that may have contributed to the levels being so high....and also to the symptoms you were having from those chelation treatments.

If I had known you had the fillings I would have said "NO...DONT DO IT!!" But I did not know. :(

The levels may still be very high though...since you only had the amalgams removed recently and probably still have mercury which has not been stored yet.

I've been trying to learn more about the challenge tests and decided not to take one right now even though I'm on DMSA. I think the results would be pretty low for mercury...same as my hair analysis was.

I had 2 amalgams taken out 5 years ago (which led to this) and then the other 2 were removed 3 years ago. There isnt gonna be any mercury floating around....its all been stored for quite some time now. I dont think its gonna come flooding out on my first test having just taken a chelator for the first time. Its not gonna give me a clear picture of the mercury burden right now.

I see my Dr. tomorrow so I'm gonna see what his thoughts are about that.

From what I've learned the metals come out in different orders. When you become mercury toxic it interferes with detoxification pathways causing other metals to accumulate...referred to as "retention toxicity". If you are not mercury toxic other metals leave the body much easier.

When you take the challenge test mercury hides behind the other metals....the chelator will pull them out in a certain order...not everything at once. So you cant really get accurate results as far as the mercury burden with one test. The chelator will pull out lead before the mercury so if I take the test now I'm assuming it will come back high in other metals but low or normal for mercury.

Of course if someones got amalgams in or just removed...the mercury would likely show up...thats not the case for me though....so I'm gonna wait. I'm just gonna go by the muscle testing and ART which are actually locating the mercury in specific areas.

Since the chelator is gonna pull out the metals preferentially it'll probably take awhile for the mercury to start showing up in large amounts. I think the Dr. plans on testing me after this round of DMSA....which is gonna last 3 months. I wont finish the bottle of DMSA until December.

Its hard to know whats actually stored away without something like ART to locate it. Your levels would naturally be high doing IV DMPS with fillings in place...so it really doesnt show a heavy burden of mercury like I had originally thought. Although I do still think all of us who have had amalgams definately have mercury stored away.

I would have to assume with the low levels in my hair analysis my body isnt gonna just dump out mercury right away with the DMSA.....Its pretty well stored at these toxic foci areas in my body.

Dr. K. I think uses his own method for the challenge test. Because he can locate the mercury in the body he actually injects the DMPS into a specific site to get a flood of mercury to come out. But my oral DMSA is gonna work alot differently....so no challenge test for now. :(

I am still taking a worm, parasite medication its for 10 days. I am on day 8 today. I can't wait for it to be over it is taking its toll on me.

Are you taking toxin binders with the parasite treatment?? Parasites hold onto alot of metals....remember Dr. K. refers to them as "Knights in Shining Armour". You would be having alot of symptoms and redistribution of metals if you're not taking anything to absorb it and to support detox.

Anything you take is gonna end up making you feel worse if you're just taking something to kill with nothing to absorb/remove the metals and toxins. It shouldnt be taking a toll unless you arent able to remove this stuff from your body. The constipation situation is gonna make it even worse. You have to make sure you're not constipated while you're doing these treatments...its essential that you keep the bowels moving.

Have you tried vit. C and magnesium...together....and in high enough doses??

Rachel--24 Collaborator
So to me that sounds like I'm okay and that I have a normal bowel flora...now, I don't take that to mean I can go buy another package of cookies, but maybe I can have a little bit of fruit here and there, lol.

I dont know if I trust the results of stool tests. All of mine were showing everything to be normal. My CDSA showed no dysbiosis, normal yeast, normal flora. WTH??

Then later I show a problem with yeast and then next time its gone...even though I had done nothing to treat it. :huh:

Then I had C.Diff show up?? How could I have C.Diff overgrowth with no dysbiosis??

So yeah....they dont seem consistent or 100% reliable to me. <_<

My gut is pretty messed up with parasites, bacteria, yeast and metals...according to what the Dr.'s are finding. I think I would have to agree based on symptoms and the fact that I cant eat hardly anything!! :rolleyes:

Rachel--24 Collaborator

Carla, I saw your post on LymeNET....was gonna "wave" at you but didnt want to stray from the topic. Besides...when can I ever just type up something short?? :lol:

Anyways, I'm upset about what happened...especially after all the rudeness and deliberate attacks I've seen on posts having to do with alternative treatments. It doesnt make sense to me at all. :(

So I'm a little late here but if you still have my email...can I get an update?? :)

AndreaB Contributor

Donna,

I can't make heads or tails out of your results either.

CarlaB Enthusiast
Carla, I saw your post on LymeNET....was gonna "wave" at you but didnt want to stray from the topic. Besides...when can I ever just type up something short?? :lol:

Anyways, I'm upset about what happened...especially after all the rudeness and deliberate attacks I've seen on posts having to do with alternative treatments. It doesnt make sense to me at all. :(

So I'm a little late here but if you still have my email...can I get an update?? :)

Sure! I need your email though ... I wasn't organized enough before to add everyone to my address book ... :blink:

They're so paranoid on LN about new people posting for the first time especially on a sensitive topic that I wanted to be sure they knew some of us knew you. :) I saw the post that she got booted for, and quite frankly, she must have been having a bad day ... but to get booted over one post is just wrong.

Donna, if your test is anything like mine, 1+ is slightly elevated, but nothing to worry about. My Klebsiella and Citrobacter were 4+ (the highest rating). Don't know if that helps ...

Well, I FINALLY got the Levaquin thanks to knowing the pharmacist!!! LOL For some reason, my doctor's office hadn't called the insurance to get more than 21 days approved, so the pharmacist called the insurance company several times and got it to go through! They are getting a box of candy for Christmas. :)

Anyway, I herxed within a couple hours ... all in the head! I felt like I had had a couple drinks! This is good since the doc is saying that if my cognitive symptoms don't improve I'll need IV. This med is for Bartonella, which can also cause the cognitive symptoms. In fact, I've read a Dr. B article that says, well, I'll find it and quote it. The bolding is from the original article, not me.

Indicators of BLO (Bartonella-like organisms) infection include symptoms involving the central nervous system that are out of proportion to the other systemic symptoms of chronic Lyme. There seems to be an increased irritability to the CMS, with agitation, anxiety, insomnia, and even seizures, plus symptoms of encephalitis, such as cognitive deficits and confusion. Other key symptoms may include gastritis, lower abdominal pain (mesenteric adenitis), sore soles, especially in the AM, tender subcutaneous nodules along the extremities, and red rashes. These rashes may have the appearance of red streaks like stretch marks that do not follow skin planes, spider veins, or red papular eruptions. Lymph nodes may be enlarged and the throat can be sore.

Also, since taking this med, the rash ("red papular eruptions") that I used to have on my scalp and arms is back. Last summer the Cipro only took a week to get me feeling better (I was on it 20 days for the dysbiosis), then I felt GREAT for the next few weeks, so I'm hoping that after this initial herx I'll be back to where I was.

Rachel--24 Collaborator
They're so paranoid on LN about new people posting for the first time especially on a sensitive topic that I wanted to be sure they knew some of us knew you. :)

Thanks. :)

They do get pretty paranoid....I was hoping the fact that I registered in 2006 would prevent that from happening. They were jumping all over first time posters in another thread because they had just registered. :rolleyes:

I saw the post that she got booted for, and quite frankly, she must have been having a bad day ... but to get booted over one post is just wrong.

Yeah...I think she was probably having a bad day or fed up with people constantly attacking the alternative treatments. I didnt think there was too much negativity in that particular thread but in alot of others there is...and its usually the same people making waves.

I think its wrong and I dont see the people who are doing the alternative stuff going into the threads pertaining to abx and bashing the treatments. I pretty much only read the alternative stuff since I'm not doing abx and I get tired of these people being so negative...thats why I dont post. It gets too ugly for me. :ph34r:

There has also been some crazy personal attacks off of the board...its totally uncalled for. I dont know if I could hang in there and continue to post in that environment so I give them credit for that.

Anyways...like you said...to get banned for one post is crazy...especially since shes been a member since the board started. I've seen SOOO much worse.

CarlaB Enthusiast
Thanks. :)

They do get pretty paranoid....I was hoping the fact that I registered in 2006 would prevent that from happening. They were jumping all over first time posters in another thread because they had just registered. :rolleyes:

... unless they're like me and look at how many posts and totally miss when the person registered. :ph34r::lol::lol:

I think its wrong and I dont see the people who are doing the alternative stuff going into the threads pertaining to abx and bashing the treatments. I pretty much only read the alternative stuff since I'm not doing abx and I get tired of these people being so negative...thats why I dont post. It gets too ugly for me. :ph34r:

I read the alternative stuff, too ... I am interested in it and want to be there eventually, just a different order than you. Herbs are generally accepted, but you are right, they are not open to the voodoo stuff ;). I have seen some people who are on maintenance abx get attacked by the more alternative crowd, but it's usually the other way around. The same things not going to work for everyone ... I like to read about it all.

There has also been some crazy personal attacks off of the board...its totally uncalled for.

Tell me about it ... I had to block someone myself ... and I haven't been argumentative, either ... I save that for this thread! :lol:;):P

jerseyangel Proficient
Patti

its so good to see you- hear you

Thanks, Mia--and right back at you :)

And not to make light of his/her frustration, but the one who created a thread and 10min later posted to it, a bit perturbed that nobody responded yet was a little amusing.

Yay!

I think I've finally stopped worrying about a jinxing or a serious relapse.

Mmmm Redbridge! Was it to your liking beer-wise? Some prefer New Grist.

(Ugh that sounds close to gristle :bleh: )

Yea--that happens from time to time where people expect an instant answer.

How long did it take you to stop worrying? I keep waiting for the other shoe to drop :P

The Redbridge was very good. This was the first beer I had in probably at least 3 years, so I've not tried any of the other gluten-free beers.

I always liked a light, crisp beer so the Redbridge is perfect.

Rachel--24 Collaborator

Well...I gotta say that LN is a walk in the park to me after visiting the Mercury forum last night. I havent been there is a long time and OMG...I dont think I'll return for a loooong time. :ph34r:

It was VERY depressing.

DMSA is OTC now (which seems crazy to me) and it seems like everyone on there is trying to self treat...no guidance whatsoever. It was scary...people were making suicide pacts and just totally losing it because they are stirring up metals and not under the care of a Dr.

I saw alot of SEVERE depression...totally sad. :(

tom Contributor
How long did it take you to stop worrying? I keep waiting for the other shoe to drop :P

Well, ok, I'm actually not entirely through worrying. I may worry, at least a little, for the rest of my days.

BUT!!! It IS *greatly* reduced since something that happened a few days ago.

I'd had a few 'not great' days in a row (nothing worth posting about and still better than most days even pre-celiac), and began to worry more that it may be the start of a decline. But it turns out it was just from trying to add too many foods back in, in close proximity, I'm pretty sure.

So, after a couple days of the most basic, safest diet again, I was back to feeling splendiferous and that halted much of the worry.

I really shouldn't have said it was "gone", just an eensy-weensy % of what it had been for months. Aargh now I'm confusing mySELF even!! Maybe not so eensy-weensy, but I am starting to believe the goodness can really be for good.

(Maybe I felt MORE like the worrying was over until I started *thinking* about "how much". So I'm gonna stop trying to quantify it now . . . . . .)

The Redbridge was very good.

Yum yum!

Broncobux ordered one today at 11am!! Perfectly understandable since he was heading off immed to attend an NFL game. :) Just a lil off-site tailgating. ;)

jerseyangel Proficient
I really shouldn't have said it was "gone", just an eensy-weensy % of what it had been for months. Aargh now I'm confusing mySELF even!! Maybe not so eensy-weensy, but I am starting to believe the goodness can really be for good.

(Maybe I felt MORE like the worrying was over until I started *thinking* about "how much". So I'm gonna stop trying to quantify it now . . . . . .)

I completely understand what you're saying--really :D I doubt whether people like us, having gone through so much for so long, will ever be able to get it completely out of the back of our minds.

But, this is pretty darned good ;)

I absolutely love the picture of you, Lisa, Armetta and Bronco! I'm so jealous--you guys must have had a blast.

Rachel--24 Collaborator
I completely understand what you're saying--really :D I doubt whether people like us, having gone through so much for so long, will ever be able to get it completely out of the back of our minds.

This might shock some people but after reading this I realize that I dont worry about what I eat anymore!! :o

Of course I'm only eating a handful of foods...and always the same ones....so I guess theres not to much to be concerned about. :rolleyes:

But STILL...its much better than how I USED to be....as I'm sure most of you can recall. The food heinousities were neverending. :blink:

So yeah...now when I'm thinking about food...I'm only looking forward to what I'm GONNA be eating...and hopefully sooner rather than later! :)

Rachel--24 Collaborator

Patti,

I'm so glad you're feeling better these days!! I'm crossing my fingers (and toes) for you. :)

jerseyangel Proficient
Patti,

I'm so glad you're feeling better these days!! I'm crossing my fingers (and toes) for you. :)

Thanks, Rachel :D

I still have things I have to absolutely avoid, especially the tiniest traces of gluten--but compared to how I was when I first found you all, I'm so much better.

I'm glad to hear that you're doing so much better, also. Told ya it would happen and that you'd get to the bottom of things ;):)

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    • cristiana
      Looked this up.   Yes, forgiveness and bearing with people is people is vital.  
    • cristiana
      I must admit I've been on both sides.  Before my diagnosis, and in my ignorance, I thought all the special diets we see around us today were unnecessary and people were making a big fuss over nothing.  There is a shop in the small town where I live that sells organic and gluten free food and I used to see people walking in and buying things and thought they were being a bit ridiculous spending extra money on what I thought was a fad.  Yet since my diagnosis that shop has been a real lifesaver.  I guess It is hard for people to see the necessity of all this extra effort if they haven't experienced celiac disease personally, or observed the way gluten affects someone they love.  Honestly, I have wondered at times if I would have been as understanding had my husband been diagnosed with coeliac disease instead of me. He has been great.   It must be incredibly difficult if your close friends and family aren't supporting you.  I have read some awful stories from coeliacs where friends and families have not just been unsupportive, but go out of their way to continue serving up gluten.   In such extreme cases, where harm is actually being done, serious thought needs to be taken about removing oneself from harm's way.  That all said, I find that the world is now so full of people struggling with autoimmune illnesses now, allergies and intolerances, that people are definitely becoming more attuned to things.    Word is getting out there. In 2022 a long-running popular TV series in the UK, Doc Martin, ended with a final case: a patient being diagnosed with coeliac disease.  I don't know if anyone saw it but I was so heartened by that episode, that celiac disease was given centre stage for the last ever programme. The patient in question had been suffering from a horrible rash which turned out to be dermatitis herpetiformis. He also had anemia, felt faint and was plain exhausted.  It would have been good education to anyone watching who didn't know about the disease and they would have been left in no doubt about its seriousness and the need to follow a strict gluten-free diet.  I thought to myself as it ended, well, now, that's another piece in our campaign to make coeliac disease better understood!    
    • trents
    • CatS
      I understand your frustration about socializing while having celiac disease. I also have allergies to nuts, dairy, all forms of gluten including oats, strawberries and MSG. I get anxiety while grocery shopping and really take my time to read all labels. I always carry a magnifying glass with me wherever I go to read labels. Many products are labelled Gluten Free but contain Oats, and apparently this is becoming more common. I almost bought some gluten free flour but read that it contained oats. A certain percentage of Celiacs have this complication. I can’t help feeling offended and excluded when others act like I am being “high maintenance”. I am becoming better at being an advocate for myself.  I have had diverticulitis 3 times and each time hospitalized-once, the attending nurse didn’t know what celiac means-she had to research...  If others around me make comments I try to enlighten them, those who don’t get it are not my friends anymore. Be very careful about cross-contamination. I was sick recently for 10 days after a meal was contaminated while I was on holiday. If servers say they have gluten free buns or bread, ask if they use a toaster specifically reserved for gluten-free, or don’t chance it. On a positive note, I didn’t find out I had Celiac Disease until I was 60. Eating a gluten free diet means no more terrible headaches, hives, rashes, intestinal bloating and irregularity, Gastro Intestinal Reflux….when I follow a strict diet and mostly always eat at home, I feel great! I also weeded out “friends” who weren’t worth being around.
    • Kwinkle
      Thank you, Trents- are there any safe alternatives?
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