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Omg...i Might Be On To Something


Rachel--24

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CarlaB Enthusiast
I'm gonna have to go eat my ice cream in the bathtub tonight.....so I can enjoy it without going numb. :P

Ice cream in the bathtub is fun. :P I guess you couldn't really eat ice cream in the sauna! :lol:


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AndreaB Contributor
I guess you couldn't really eat ice cream in the sauna! :lol:

You could drink it but it probably wouldn't be quite the same. :P:lol:

:lol::lol:

Rinne....ITS TRUE!! :ph34r:

I couldnt tell Andrea my appt. times because I'd forgotten them. :rolleyes:

Now I have everything written down....its hanging on the fridge. :)

Somehow I missed this.

I'm proud of you. Yay!!

Its gonna turn up dust. :lol:

I know that! :lol:

But what else will it turn up?

DingoGirl Enthusiast

hello everybody.....this is not even a drive-by, it's a blatant pop-in....I'm not caught up, I am SO tired, long day at work (but happy to report a much better day adn I didn't make any mistakes, that I KNOW of :huh: ), and i am crawling into the warm bed. Just wanted to say hi, love you all, :wub: glad Andrea's back, and Donna, OMG you're leaving soon! MIamia, rest up, I think I read that you might not have any blood left after your testing? :blink: Rachel....you are not too broken to be fixed.

OMG my dogs have gas. :huh: ugh.....I fed them the leftover stuffing. IT is of course gluten-free but evidently doesn't agree with Stinker's intestines.....

off to bed. :) I"ll try and catch up later but I dingo'd everything else.

-_--_--_- <--------- me, sleepy :)

Rachel--24 Collaborator
I'm proud of you. Yay!!

Thanks Andrea :D

I must confess though...it was mom who did it. :ph34r:

Actually I wrote everything down myself.....then my mom took it from me and put it on the fridge. I guess she probably knew that I would lose the paper. :lol:

Rachel....you are not too broken to be fixed.

Thanks Susan. :)

Glad you had a good day at work...with no mistakes. :D

I made a BIG mistake today...not even sure what I did :huh: .....I just know that I made a big mess for someone else to figure out and fix. :lol:

I dont try to figure out my mistakes anymore....I just accept that I make them and I'm thankful that I'm not the bookkeeper. :P

Have a good night. :)

evie Rookie

OMG my dogs have gas. :huh: ugh.....I fed them the leftover stuffing. IT is of course gluten-free but evidently doesn't agree with Stinker's intestines.....

off to bed. :) I"ll try and catch up later but I dingo'd everything else.

Quote

So do I Susan, glad you had a better day at work today...sure hard to keep up with you busy people, lots of pages to go thru..skipped a few!! More Dr appt monday and today, they seem to say I am bit better..it is taking lots of meds to do it, kidney and heart improving!!! Wed will bring the nurse and therapist, therapist 2nd day. next week I will be going in dor therapy, he says he is going to have my strenthg back in a few weeks even if I am quite weak now ( positve note)!! :) Just could not stay awake at supper time and had a long nap?!?

Sounds like many of you are digging into your problems and sure hope you find some answers that help you soon, of course I am looking too. Must do bit of work clearing computer and get to bed, hope to sleep late in am, no need to get up early for a change!! Just popped into say Hi all, have a ggod night.

Love, evie

Green12 Enthusiast

Hi Evie, how have you been feeling? I hope you are getting some energy back and feeling somewhat back to normal :)

Night Andrea!

Hi Susan :) The girls have gas? :lol: That can be some potent toxic stuff :lol: Glad you had a better day at work! Nighty night to you too.

I agree with Susan Rachel, I also don't think you are too broken to fix. It might just take some extra steps, but I know you will turn the corner and make progress soon :D:D

AndreaB Contributor

Susan! So good to see you. Glad you had a good day at work today. Sleep tight....see you in the morning.

Rachel.....your mom and your appointment paper. :lol::lol:

Evie...so good to hear that you are doing better. Yay for progress. Keep us posted, please. We love you. :wub:

Night Andrea!

I'm still up, even if I'm not really awake. Seth won't be going to be for another 1 1/2 hours or so. Mitch just got home and he's got to go way south tomorrow so won't be home tomorrow night. Figures he'd have to do that when the roads are supposed to be a skating rink. Maybe we won't get the precip they forecasted earlier. It may have been shoved off a day. Freezing temps, icy roads....I know you are used to that kind of weather right?


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Judyin Philly Enthusiast
Hmmm, about the chiropractor signing off on the Igenex test. Igenex told my bioscan paractitioner specifically an MD, DO, or psychiatrist ONLY.

Thanks Juliem guess she hadn't ck'd with them yet.

I'll tell her this.

thanks for pointing it out to me.

hate to post incorrect info.

how are your feeling by the way?

judy

Donna. just saw your post...mine can perscrible meds so maybe she is an Md also.

have a great time on the cruise.

judy

miamia Rookie
I didnt explain it at all really....cuz I'm not too sure myself. :unsure:

Julie explained it better. Yeah...I guess BioSET lady #2 is gonna test the water when I go see her on Saturday. BioSET lady #1 is gonna do some other testing (I think un-related to the water?) when I see her next week.....I guess to try to find out why I'm not noticing improvement.

I actually didnt think much of it...I figured it was too soon to notice improvement. I just happened to mention it to #2 last Saturday....I was asking when I'm suppossed to feel better??

Remember Julie mentioning that there might be "clouds" while I'm going through the treatments??? Well thats what I was asking about....if I should feel bad before I get better?? The lady said yeah....its common to feel bad after the treatment but then it clears and you should feel better. I told her "Oh....well I dont get to the feeling better part. :unsure:"

So I guess I should have been noticing improvement but I just havent. :(

Apparantly they discussed it and are now gonna try to figure out whats wrong...hence the water thing and other testing.

I think I'm just broken...maybe I cant be fixed. :(

I dont think I could be the *only* one though....I'm sure there have been others who didnt get "cleared" initially.

Maybe this is backwards....and the Lyme and mercury need to be dealt with first. Thats what my Dr. said....he said to *not* continue with the Bioset treatments right now because they wont work if I have Lyme and its not treated yet.

Rachel-

Sometimes I feel exactly this way like I am "broken" It is very frustrating. I have met people who ahve had similar problems did things to fix them and gotten better I ahve done those things and no results.

Its hard to have multiple problems like most of us here to because it is our instinct to want to fight everything at once and sometimes you have to just take it step by step. It is very frustrating but at least you are taking steps- if you ahve to attack the lyme and deal witht the other things later at least you are activly fighting the lyme. Just be happy you are attacking one of your problems don't think of what you are not fighting just think if your self as moving one step closer to regaining your health.

:lol::lol:

Rinne....ITS TRUE!! :ph34r:

I couldnt tell Andrea my appt. times because I'd forgotten them. :rolleyes:

Now I have everything written down....its hanging on the fridge. :)

I can usually remember my appts. this is not my big problem. my problem is I know thursday I have biofeedback- but thursday comes and I don't realize its thursday I think its tuesday or wednesday. Does this make sense? I want my brain back!!!

OMG my dogs have gas. :huh: ugh.....I fed them the leftover stuffing. IT is of course gluten-free but evidently doesn't agree with Stinker's intestines.....

off to bed. :) I"ll try and catch up later but I dingo'd everything else.

Quote

So do I Susan, glad you had a better day at work today...sure hard to keep up with you busy people, lots of pages to go thru..skipped a few!! More Dr appt monday and today, they seem to say I am bit better..it is taking lots of meds to do it, kidney and heart improving!!! Wed will bring the nurse and therapist, therapist 2nd day. next week I will be going in dor therapy, he says he is going to have my strenthg back in a few weeks even if I am quite weak now ( positve note)!! :) Just could not stay awake at supper time and had a long nap?!?

Sounds like many of you are digging into your problems and sure hope you find some answers that help you soon, of course I am looking too. Must do bit of work clearing computer and get to bed, hope to sleep late in am, no need to get up early for a change!! Just popped into say Hi all, have a ggod night.

Love, evie

Evie-

I am so happy to hear there has been improvement and the doctor feels like there is some relief on its way!!

dlp252 Apprentice
That's coming up so quick!

You'll have such a nice, relaxing time. Just what you need. :D

Exactly what I needed. I've decided, no singing, no working out...just relaxing...maybe my neck will improve a little, lol. :P

Donna, how exciting!!! I will make a strong mental note about your departure on Friday, but just in case can you drop a reminder here and there before then?? :lol: You know, brain fog :ph34r: I want to make sure to give you a big send off :D

:lol: Mia

No worries, I think I can handle that, lol. ;):lol:

Donna, I hope you have a fabulosa time on your cruise. :)

I no doubt will, lol...what could be better than having nothing more to do than eating and sleeping! :lol: Eating will be slightly more challenging than my past cruises, but I'm sure I'll find something. :lol:

Donna....whenever I've called them and got the machine I've just called back later. I hate leaving messages...usually the receptionist girl will answer at some point. I'm not too suprised that she didnt call you back though. Its the same girl who didnt schedule all my appts. when I first asked her to. :lol:

:lol: Yep, I thought so, lol. :lol: There WAS a message on my voicemail when I got here this morning...um, when I left the message I SAID I was only going to be here until 1:00 yesterday, lol. She called MUCH later. :P

Maybe this is backwards....and the Lyme and mercury need to be dealt with first. Thats what my Dr. said....he said to *not* continue with the Bioset treatments right now because they wont work if I have Lyme and its not treated yet.

Trying to etch this on my brain for future reference.... :P

Donna....I'm only doing this at my mom's house. I gotta leave the water out for 3 days before my appt. I already put it out.....it should contain enough of my "environment" by Saturday. :D

In my house it would contain more than my environment...did I ever mention I'm not much of a susie homemaker, lol. :lol:

I'm jealous...its probably alot warmer where you're going.

It's been cold here hasn't it, lol?! Yes, it's been in the upper 70s low 80s in the port cities we're going to. Florida hasn't been too warm though, lol.

OMG my dogs have gas.

:lol: May I just say that I don't miss this part of dog ownership one bit....one gas manufacturing plant in the house is enough, lol. :lol:

So do I Susan, glad you had a better day at work today...sure hard to keep up with you busy people, lots of pages to go thru..skipped a few!! More Dr appt monday and today, they seem to say I am bit better..it is taking lots of meds to do it, kidney and heart improving!!! Wed will bring the nurse and therapist, therapist 2nd day. next week I will be going in dor therapy, he says he is going to have my strenthg back in a few weeks even if I am quite weak now ( positve note)!! :) Just could not stay awake at supper time and had a long nap?!?

Sounds like many of you are digging into your problems and sure hope you find some answers that help you soon, of course I am looking too. Must do bit of work clearing computer and get to bed, hope to sleep late in am, no need to get up early for a change!! Just popped into say Hi all, have a ggod night.

Love, evie

Hi Evie!!!! More encouraging news!!! Yay! Rest up, we'll still be here, lol.

miamia Rookie

Donna-

I am jealous!! but so happy for you. I am in new york and everyone keeps talking about how warm its is- its like 50-60 . people are walking around in sweatshirts- meanwhile I am freezing and in a winter coat and gloves. God- I hope you ahve a great time you deserve it

dlp252 Apprentice
Donna-

I am jealous!! but so happy for you. I am in new york and everyone keeps talking about how warm its is- its like 50-60 . people are walking around in sweatshirts- meanwhile I am freezing and in a winter coat and gloves. God- I hope you ahve a great time you deserve it

Thank you mia! I am hoping you will be well enough soon to do something similar! (psst...it's around 55 here these days, and I've got my winter coat and gloves on too!)

rinne Apprentice
hello everybody.....this is not even a drive-by, it's a blatant pop-in....

Drive by, pop in, a chapter of your memoirs, it is always good to see you. :)

Evie, I am glad to hear that you feel the meds are helping and that you are getting better, you have been missed. :)

I am starting to venture into co-infection territory and what a confusing place that is, first of all I don't know what coinfections I have but by my symptoms babesia appears to be one of them also the Meridian Stress Assessment showed babesia microti. It seems that Lyme bacteria are smaller than babesia bacteria and so the Lyme hide inside the babesia and if you only treat for Lyme you miss the sneaky ones. Artemisin seems to be one treatment for Babesia and I am thinking the salt/c must work for Babesia too but need to learn more.

The three most common coinfections are babesia, bartonella and ehrlichia:

All three of these coinfectious agents are considered to be emerging infections. All three have been recognized as unique epidemiological agents only since 1990; research on them is recent and not very deep. A great deal is unknown.......What is clear, however is that the severity of the diseases caused by each of these organisms increases if there is a coinfection with Lyme spriochetes. The impacts of the Lyme spirochetes and the severity of the Lyme symptoms increases as well. The organisms are highly synergistic with each other.

- from "Healing Lyme" by Stephen Buhner

Green12 Enthusiast
Thanks Juliem guess she hadn't ck'd with them yet.

I'll tell her this.

thanks for pointing it out to me.

hate to post incorrect info.

how are your feeling by the way?

judy

Donna. just saw your post...mine can perscrible meds so maybe she is an Md also.

Hi Judy, I'm doing ok, thanks for asking. How have you been feeling lately? I'm glad you posted this, I want to follow up on it and see if it is possible for a chiropractor to sign. I would have it made then, I know so many chiropractors! Take good care :)

Yep Andrea, I am used to the cold, snow, and ice this time of year. Although, over the years the winters have gotten a little more mild in the city. We just got dumped on last night , however, and it is freezing today. Winter is definitely here. Hope you got some sleep last night :)

Green12 Enthusiast
Sometimes I feel exactly this way like I am "broken" It is very frustrating. I have met people who ahve had similar problems did things to fix them and gotten better I ahve done those things and no results.

I can relate to this too Miamia. I will hear of someone getting better doing the simplest of things and in no time at, all and years go by and I try everything with no results. It's frustrating, but there has got to be answers for us as well.

:lol: May I just say that I don't miss this part of dog ownership one bit....one gas manufacturing plant in the house is enough, lol. :lol:

:lol: Donna

A couple more days and counting for your cruise....I remembered :lol: I have never been on a cruise, where are you going exactly?

rinne, thanks for posting about the coinfections :)

miamia Rookie

Rinne-

what does the treatment for the coninfections involve?

thats one of the tests I had done on Monday. I hate wating for results.

I can relate to this too Miamia. I will hear of someone getting better doing the simplest of things and in no time at, all and years go by and I try everything with no results. It's frustrating, but there has got to be answers for us as well.

:lol: Donna

A couple more days and counting for your cruise....I remembered :lol: I have never been on a cruise, where are you going exactly?

rinne, thanks for posting about the coinfections :)

Julie

I do believe there are answers for all of us- but I really would like it if someone just gave me one already!!!

dlp252 Apprentice
A couple more days and counting for your cruise....I remembered :lol: I have never been on a cruise, where are you going exactly?

Well, since you asked, lol:

Friday, fly to Ft Lauderdale and stay overnight

Saturday, sail away from Ft Lauderdale

Sunday, at sea

Monday, Montego Bay (countryside tour), Jamaica

Tuesday, at sea

Wednesday, Panama Canal

Thursday, Limon, Costa Rica (aerial rainforest tram)

Friday, at sea

Saturday, Grand Cayman (pirate encounter, lol), Cayman Islands

Sunday, Cozumel, Mexico (Speed-boat escape--my friend is driving...can you say "back-seat driver blues", lol)

Monday, at sea

Tuesday, back to Fort Lauderdale, then off to Orlando, FL and Disneyworld!

AndreaB Contributor
Yep Andrea, I am used to the cold, snow, and ice this time of year. Although, over the years the winters have gotten a little more mild in the city. We just got dumped on last night , however, and it is freezing today. Winter is definitely here. Hope you got some sleep last night :)

Didn't appear to get as cold as it was supposed to last night here. The short ice/sleet storm is supposed to be here tonight and will turn to rain by morning. We live near the Columbia River so stay a little warmer. It's south of us that usually gets hit bad. Portland/Vancouver and the Gorge (Columbia river through the Oregon/Washington borders to Portland).

(Speed-boat escape--my friend is driving...can you say "back-seat driver blues", lol)

Sounds like this day may not be as fun as the rest. :P

Have a great, great time......only 2 days away!

rinne Apprentice
Rinne-

what does the treatment for the coninfections involve?

Miamia, that is about where I am at, asking what are the treatments? In "Healing Lyme" Buhner talks about Artemisinin and Red Root. From what I understand it is important to know what the coinfections are and to treat them first because if you don't deal with them you will never be able to deal with the Lyme. That is what the Lyme hiding in the babeosis is all about.

Well, since you asked, lol:

Friday, fly to Ft Lauderdale and stay overnight

Saturday, sail away from Ft Lauderdale

Sunday, at sea

Monday, Montego Bay (countryside tour), Jamaica

Tuesday, at sea

Wednesday, Panama Canal

Thursday, Limon, Costa Rica (aerial rainforest tram)

Friday, at sea

Saturday, Grand Cayman (pirate encounter, lol), Cayman Islands

Sunday, Cozumel, Mexico (Speed-boat escape--my friend is driving...can you say "back-seat driver blues", lol)

Monday, at sea

Tuesday, back to Fort Lauderdale, then off to Orlando, FL and Disneyworld!

Okay, now I see you, hair flying in the ocean breeze :) but pictures will be appreciated.

Rachel--24 Collaborator

Miamia,

From what I've read about co-infections it seems like most people with Lyme will also have co-infections. If you dont identify the co-infections and just treat Lyme....you dont get better. The co-infections should be treated before or at the same time as Lyme treatment.

The more co-infections you have the sicker you are. Babesia is the most common co-infection. As many as 66% of people with Lyme have Babesia.

People with concurrent Lyme disease and babesiosis suffer a greater number of symptoms and a longer duration of illness than patients with either infection alone, concludes a June report in the Journal of the American Medical Association co-authored by several NIAID grantees.

"An ecological community of pathogens may be found in deer ticks and the mice they feed on, comments Dr. Telford. A single bite may simultaneously cause two or more diseases, which may confound attempts at diagnosis and treatment."

Co-infections are hard to detect in testing....just as hard as Lyme. Sometimes the tests need to be repeated several times for the co-infection to show up...but they are nearly *always* there.

The treatment for co-infections is diferent from Lyme treatment....which is why its important to find out which co-infections you have...they arent treated the same.

Open Original Shared Link

Well, since you asked, lol:

Friday, fly to Ft Lauderdale and stay overnight

Saturday, sail away from Ft Lauderdale

Sunday, at sea

Monday, Montego Bay (countryside tour), Jamaica

Tuesday, at sea

Wednesday, Panama Canal

Thursday, Limon, Costa Rica (aerial rainforest tram)

Friday, at sea

Saturday, Grand Cayman (pirate encounter, lol), Cayman Islands

Sunday, Cozumel, Mexico (Speed-boat escape--my friend is driving...can you say "back-seat driver blues", lol)

Monday, at sea

Tuesday, back to Fort Lauderdale, then off to Orlando, FL and Disneyworld!

Donna....

That sounds like sooo much fun. When I get better...I'm going on a cruise. :D

I've never been on one yet.

dlp252 Apprentice
Okay, now I see you, hair flying in the ocean breeze :) but pictures will be appreciated.

I'll try to keep it sane...last cruise I took 330 pictures. This time my friend has a new digital camera, so I may let HER take the pictures, lol.

That sounds like sooo much fun. When I get better...I'm going on a cruise. :D

I've never been on one yet.

I haven't been disappointed yet! You can do as much or as little as you want, that's what's nice about them. And, when you get better, there's all the food you can possibly want! If you eat in the main dining rooms, you can have as much ice cream as you could possibly eat, lol. ;)

CarlaB Enthusiast

Donna, in Grand Cayman, go swim with the sting rays if you have the opportunity ... very cool!! If not, at least go snorkeling, it's KNOWN for the great scuba diving and snorkeling. I've also been snorkeling in Cozumel, but I think Grand Cayman was the better of the two places for it. There's not much else to see at Grand Cayman except for the beautiful beaches. And watch out, after sunset the mosquitos come out for their feast!! Hopefully, you'll be back on the ship for that!

Have a wonderful time!!

Disney is great, too. I love the Rockin' Roller Coaster at MGM, and the Tower of Terror -- I had to face my fear of elevators at the Tower of Terror, LOL.

Lymetoo Contributor
Linds,

Out of the 50 states your state (Minnesota) ranks in the top 10 for reported cases of Lyme Disease. The statistics I saw were for 1997-2003. Minnesota ranked high every year...especially 2002.

We all know that the "reported" numbers are FAR less than the actual numbers would be. I think I read somewhere that actual cases would be something like 10 times higher than whats reported.

Minnesota is FULL of Lyme disease. The problem there is MAYO CLINIC. Mayo has gone on record as saying "We don't do Lyme here." Great, huh?! Just let the people continue to suffer, not having a clue what is wrong with them.

linds Apprentice

Well i got in with my gp for an appointment tomorrow! Plus my mom is insisting she come with even though i am 21. She thinks i'm not forceful enough which is probably true. any ideas on what tests my gp should do?

Rachel--24 Collaborator
Minnesota is FULL of Lyme disease. The problem there is MAYO CLINIC. Mayo has gone on record as saying "We don't do Lyme here." Great, huh?! Just let the people continue to suffer, not having a clue what is wrong with them.

Yeah...real nice. <_<

Thats why I learned I have to be proactive as far as my health...and my diagnosis/treatment. No way would I completetly trust a doctor again.

I asked to be tested for Lyme almost 2 years ago...and was ridiculed for it...I was denied testing. :angry:

So now I got a doctor who's got some "smarts" and I get diagnosed with Lyme. :huh:

I wonder how much worse off I am now...as oppossed to if I was correctly diagnosed 2 years ago?? <_<

No matter....even if I'd have gotten tested by that idiot Dr. 2 years ago....I wouldnt have gotten diagnosed. He was an infectious Diseases Specialist and they dont use Igenix and they dont diagnose Lyme...even when they see a positive test. They ignore Lyme Disease....thats what my new Dr. told me.

He said I should be angry that this is going on...and that people are suffering needlessly.

Well yeah....I'm really angry about it now. The more I learn...the angrier I get. :angry:

Is Mayo Clinic in Minnesota?? I never knew where it was located. :unsure:

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      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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