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Omg...i Might Be On To Something


Rachel--24

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Rachel--24 Collaborator
Yes, I am back home finally!! :D Got home mon.late afternoon, exhausted of course. Nurse in this am and PM dd Carolyn took me back to hosp to have heart monitor checked and renewed.

Have to go back Wed pm, only 60 miles 1 way, that is to be last one, hopefully. Will get a blood test also, then get to stay home a few days. So good to hear from so many of you, good to be remembered by friends!!

EVIE!!

I'm so glad you're back home!! We've all been thinking of you and praying for you. Your daughter gave us some info. about you last week. We were getting worried because we hadnt heard anything since. I'm so happy to see you're back. Hope all goes well for your next appt. and yeah....hopefully you wont have to go back. :D

You've made my night Evie....I'm gonna sleep really good tonite. :)

There is an "Evie" thread in the Gab/Chat forum. We were trying to get any info. we could....we shoulda sent the dingo's for you. :lol:


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georgie Enthusiast

Thanks Rinne,

Lyme Disease symptoms:

QUOTE

PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup )

Symptoms of Lyme Disease

The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)

Rash at site of bite

Rashes on other parts of your body

Rash basically circular and spreading out (or generalized)

Raised rash, disappearing and recurring

Head, Face, Neck

Unexplained hair loss

Headache, mild or severe, Seizures

Pressure in Head, White Matter Lesions in Head (MRI)

Twitching of facial or other muscles

Facial paralysis (Bell's Palsy)

Tingling of nose, (tip of) tongue, cheek or facial flushing

Stiff or painful neck

Jaw pain or stiffness

Dental problems (unexplained)

Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose

Eyes/Vision

Double or blurry vision

Increased floating spots

Pain in eyes, or swelling around eyes

Oversensitivity to light

Flashing lights/Peripheral waves/phantom images in corner of eyes

Ears/Hearing

Decreased hearing in one or both ears, plugged ears

Buzzing in ears

Pain in ears, oversensitivity to sounds

Ringing in one or both ears

Digestive and Excretory Systems

Diarrhea

Constipation

Irritable bladder (trouble starting, stopping) or Interstitial cystitis

Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System

Bone pain, joint pain or swelling, carpal tunnel syndrome

Stiffness of joints, back, neck, tennis elbow

Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems

Shortness of breath, can't get full/satisfying breath, cough

Chest pain or rib soreness

Night sweats or unexplained chills

Heart palpitations or extra beats

Endocarditis, Heart blockage

Neurologic System

Tremors or unexplained shaking

Burning or stabbing sensations in the body

Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis

Pressure in the head

Numbness in body, tingling, pinpricks

Poor balance, dizziness, difficulty walking

Increased motion sickness

Lightheadedness, wooziness

Psychological well-being

Mood swings, irritability, bi-polar disorder

Unusual depression

Disorientation (getting or feeling lost)

Feeling as if you are losing your mind

Over-emotional reactions, crying easily

Too much sleep, or insomnia

Difficulty falling or staying asleep

Narcolepsy, sleep apnea

Panic attacks, anxiety

Mental Capability

Memory loss (short or long term)

Confusion, difficulty in thinking

Difficulty with concentration or reading

Going to the wrong place

Speech difficulty (slurred or slow)

Stammering speech

Forgetting how to perform simple tasks

Reproduction and Sexuality

Loss of sex drive

Sexual dysfunction

Unexplained menstral pain, irregularity

Unexplained breast pain, discharge

Testicular or pelvic pain

General Well-being

Unexplained weight gain, loss

Extreme fatigue

Swollen glands/lymph nodes

Unexplained fevers (high or low grade)

Continual infections (sinus, kidney, eye, etc.)

Symptoms seem to change, come and go

Pain migrates (moves) to different body parts

Early on, experienced a "flu-like" illness, after which you have not since felt well.

Low body temperature

Allergies/Chemical sensitivities

Increased effect from alcohol and possible worse hangover

My hubbie has many of these symptoms which are still there after thyroid treatment and adrenal treatment. But he has never had the major symptoms of Lymes like a rash or joint pain. He is in Aust now and Drs here are not very aware of Lymes as we don't seem to have it or have a different strain. However, he lived in Eng and France all his life. He tells me he knew all about ticks and always wore long trousers through grass.

hmmmm

Rachel--24 Collaborator
Thanks Rinne,

My hubbie has many of these symptoms which are still there after thyroid treatment and adrenal treatment. But he has never had the major symptoms of Lymes like a rash or joint pain. He is in Aust now and Drs here are not very aware of Lymes as we don't seem to have it or have a different strain. However, he lived in Eng and France all his life. He tells me he knew all about ticks and always wore long trousers through grass.

hmmmm

Georgie...I never had a big noticeable rash. I had one weird bite that was smaller than a dime with a tiny circle around it. The only reason I noticed it was cuz it was on my shoulder.. and it stayed for about a month. I thought it was weird but didnt think much of it....I ignored it. If it had been on my back or on my head....somewhere not so obvious...I wouldnt have ever seen it. Also less than 50% of people with Lyme ever saw a tick bite or rash. Either not everyone gets the rash or its just not in a visible place.

I dont have alot of joint pain all over...my joints arent that affected I guess. I have alot of other symptoms. My jaw joint does bother me though and my neck bothers me but I'm nowhere near having arthritis or anything like that. Joint pain hasnt been high on my list of symptoms.

Judyin Philly Enthusiast

Evie..so glad your back home?

we were so worried.

There were messages sent in a thread and I'll try to find it for you.

The last time i sent a PM your box was full but you should have alot of messeges in your PM"S

Rest up and look forward to seeing them.

love and missed ya

judy

nikki-uk Enthusiast
Yes, I am back home finally!! :D

EVIE!!! :D:D

Thank goodness we 'found' you!!

Hope you're getting plenty of rest (in the comfort of your own home) :D:D

happygirl Collaborator

x

jerseyangel Proficient

Evie!!!

What a nice thing to wake up to this morning--you're home and on the mend :D We've all been so concerned about you--thanks for checking in! Take care and get lots of rest.

Yea!! Evie's back!!! :lol:


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miamia Rookie

Since I didn't join in the love fest yesturaday...

I just wanted to say how thankful I am to have found all of you. I have learned so much here. Being sick is so overwhelming and I know at times I feel like giving up - coming here though and seeing everyyone's strength and will to keep fighting makes me want to keep fighting too and I am eternally greatful for that.

I hope everyone has a great holiday.

Miamia

Rachel--24 Collaborator

Miamia...good luck with your appointment today!! :)

miamia Rookie
Evie!!!

What a nice thing to wake up to this morning--you're home and on the mend :D We've all been so concerned about you--thanks for checking in! Take care and get lots of rest.

Yea!! Evie's back!!! :lol:

Evie- so happy your back - everyone was very worried.

Oh god Thanksgiving- what do we eat? I don;t think there is one thing my familys making I can eat- looks like I will ahve to be a busy baker bee today - any suggestions?

jerseyangel Proficient
yes, patti...it is a long haul. i am just thankful to be feeling some better at this point. i have so much to be thankful for...including you, my "other" mom.

I feel the same about you :) It's wonderful to hear that you're feeling a bit better--have a great holiday, relax and enjoy! :D

Since I didn't join in the love fest yesturaday...

I just wanted to say how thankful I am to have found all of you. I have learned so much here. Being sick is so overwhelming and I know at times I feel like giving up - coming here though and seeing everyyone's strength and will to keep fighting makes me want to keep fighting too and I am eternally greatful for that.

I hope everyone has a great holiday.

Miamia

You have a lovely holiday, too, Miamia! :)

~~~~~~

Susan and Rachel-- :( about yesterday for the two of you! Susan, I hope that you got a lot of rest and mindless TV last night :P Today is bound to be better ;)

Rachel--the body's energys are powerful things. I'm sure that your reactions last night were from the treatment. Hope you slept well, and you have some nice plans for Thanksgiving :)

Andrea--You must be running around like a mad woman right about now--or I would be, anyway :D Have a safe trip, and I'll be thinking about you as you head out to visit with your dad.

happygirl Collaborator

x

dlp252 Apprentice
Lyme Disease symptoms:

Open Original Shared Link

I've got 47 of those symptoms! Those are the ones that I've had the most...I've had a couple of others maybe once or twice! YIKES!

I know there was more but can't remember. Big trauma at work today, but I am too tired to explain it. It was my brain..... :( And I walked away from my boss and burst into tears. One of my best friends was in teh store, I had not seen her come in, but she witnessed the whole thing......never mind. I think things will be okay but it is just the same old story....the confusion in my brain. :(

wub to all :wub: I am heading into bed to get warm and read and watch stupid things on tv.

Hopefully a minor bump...sorry you had a bad work day.

Speaking of mojo...was everyone born with one and does everyone have one, cuz I don't think I was or do. :lol:

Yes, I am back home finally!! :D Got home mon.late afternoon, exhausted of course. Nurse in this am and PM dd Carolyn took me back to hosp to have heart monitor checked and renewed.

Have to go back Wed pm, only 60 miles 1 way, that is to be last one, hopefully. Will get a blood test also, then get to stay home a few days. So good to hear from so many of you, good to be remembered by friends!!

DD carolyn will be here till Sat., sure thankful for that..have good dd's ( 3 of them) have all been helping me at some time past few weeks, really helps us. :) I hope to start getting some energy back soon, but so many DR. appt. over the next month & most 60 mile away. Read many pages tonight, finally jumped fwd.

Hope many of you are finding answers for problems, if not yet hang in there, I plan to also. Love you all, evie :)

EVIE!!!!!! I missed you! Glad to hear from you...take it easy my friend!

Guys....I had a traumatic night. :(

So sorry! HOpe you were able to get some rest!

happygirl Collaborator

x

dlp252 Apprentice

INSOMNIA!!!!!!

That stupid old "friend" of mine is back. I have been waking up at 12:30 a.m. and only two nights was able to go back to sleep...one night woke up at 1:30 and couldn't get back to sleep. I sleep great until 12:30 or 1:30...grrr. Last night it was 12:30...I FINALLY dozed off at around 3:45 (I get up at 4:00, lol), and had the strangest dream about flying out of state to a wedding which was Hawaiian themed, but I forgot all my tops (no comments), so had to wear my pajamas and every time I tried to go take a shower, someone beat me to the bathroom. :P

I stopped taking my Zyrtek a couple of weeks ago when the HN doctors gave me all the supplements. She's got me taking 6mg of melatonin before bed so I wanted to see how that would work....apparently it doesn't, lol. I'm not sure how long to give it, but I figure I'll try at least 1 more week, but I'm taking my Zyrtek with me on my cruise, lol.

Green12 Enthusiast

Quick drive by for me this morning:

Laura, thanks so much for sharing the e-mail you got from your lyme contact, great information :D Hope you have a wonderful Thanksgiving with Eric.

Rachel, so sorry you had a tough night. I hope you got some sleep and wake up feeling better :)

Hi Susan, you have been a stranger the last few days, how are you?? Thinking about you hoping you are doing ok :)

Donna, so sorry about your insomnia :( That is not fun at all. Hope that turns around for you.

Mia Mia, best of luck with your appt today, look forward to hearing all about it.

And Evie, I'm so happy to hear from you! We have all been so worried about you. It must feel good to be home and on your way to recovery. I'm glad you have such wonderful DDs and family to take such good care of you :)

Welcome white and georgie :)

wub :wub: and hello :) to everyone else!

CarlaB Enthusiast

Just a drive-by ... I'll be mostly gone for a couple days as I'm cooking dinner for tomorrow.

Evie, so glad you're okay, we've been worried about you.

I dingo'd the other thing I was going to say.

AndreaB Contributor
Since I didn't join in the love fest yesturaday...

I just wanted to say how thankful I am to have found all of you. I have learned so much here. Being sick is so overwhelming and I know at times I feel like giving up - coming here though and seeing everyyone's strength and will to keep fighting makes me want to keep fighting too and I am eternally greatful for that.

I hope everyone has a great holiday.

Miamia

Miamia,

Enjoy your holiday too. Please let us know how your appointment goes......and NEVER give up. We are here for you. :wub:

Andrea--You must be running around like a mad woman right about now--or I would be, anyway :D Have a safe trip, and I'll be thinking about you as you head out to visit with your dad.

Thanks Patti. Not running around yet. Gotta get some things done today and find out if we can stuff everything in carryons or have to pack a suitcase.

I've got 47 of those symptoms! Those are the ones that I've had the most...I've had a couple of others maybe once or twice! YIKES!

:blink::o I do hope you'll get tested as soon as you are able.

wub :wub: and hello :) to everyone else!

:wub: back.......I need to write you still. :ph34r:

Carla,

Have a good weekend.

I'll be on through tomorrow until we leave. Seems like it may be quiet here this weekend.

Susan......Rachel.......feeling better this morning?

Jestgar Rising Star
INSOMNIA!!!!!!

This sounds odd, but I find that listening to the Harry Potter books on tape (disc) puts me to sleep. I started by listening when I was really tired, so now I've created as sort of Pavlovian response to that guys voice. When I put a disc on, I fall asleep almost immediately. It worked for those 12:30am wake ups as well.

And if sometimes it took a little longer to fall asleep, at least I was entertained....

CarlaB Enthusiast
This sounds odd, but I find that listening to the Harry Potter books on tape (disc) puts me to sleep. I started by listening when I was really tired, so now I've created as sort of Pavlovian response to that guys voice. When I put a disc on, I fall asleep almost immediately. It worked for those 12:30am wake ups as well.

And if sometimes it took a little longer to fall asleep, at least I was entertained....

LOL, or you could sign up for a college course ... no one seems to have trouble falling asleep when they're supposed to be studying!

My grandmother always said, if you're awake, then maybe your body only needs rest ... just lay there and get some good rest and don't worry about not sleeping. I take her attitude and after a bad night's sleep, but a good night's rest, I usually feel pretty good the next day.

TriticusToxicum Explorer
This sounds odd, but I find that listening to the Harry Potter books on tape (disc) puts me to sleep. I started by listening when I was really tired, so now I've created as sort of Pavlovian response to that guys voice. When I put a disc on, I fall asleep almost immediately. It worked for those 12:30am wake ups as well.

And if sometimes it took a little longer to fall asleep, at least I was entertained....

I have a similar Pavlovian response to Baby Einstein videos (Baby Mozart, Baby VanGogh, Baby Bach etc). When Olivia was colicky we used to put the tape in - and now whenever I hear classical music I get sleepy (then again this was probably always the case and I'm just now aware of it :P ).

DingoGirl Enthusiast
There is an "Evie" thread in the Gab/Chat forum. We were trying to get any info. we could....we shoulda sent the dingo's for you. :lol:

the dingos WERE dispatched.....see, she's back!!!! :lol::P

EVIE!!!!! It gives my heart such joy to see you back! we are thrilled. Get lots of rest, and just RECOVER. :)

Speaking of mojo...was everyone born with one and does everyone have one, cuz I don't think I was or do. :lol:

:lol::lol::lol: Donna you crack me up! I don't have the answer....my mojo's been missing for a couple of weeks now......

OMG, I hope YOU will get the Igenix testing soon.....47 symptoms? :o

I dingo'd the other thing I was going to say.

Easy to do, ain't it? :huh: And because I"m dingo'ing things at work (all the minutae and stupid paperwork that they are obsessed wtih), I could lose my job. :(:o doesn't matter that customers LOVE me, that I am the ONLY artist working there and know how to USE products (not just the scientifness of paints, which the brother knows exceedingly well), and I help to create a MUCH more pleasant atmosphere than already exists....I have to COUNT CHANGE back to people (very hard for me) and staple these three receipts in three places and print extra receipts for this and that and put this stamp on that and write this number on these two pages and blah blah blah blah blah.....I understand the importance of protocol, but, IMO (and many others', I"m finding out), they are obsessed with this and focusing more on that than on customers.....they have their noses pressed into their paperwork and order sheets all day long, and don't look up that often....one lady, who's been there about 20 years, never smiles and never greets anyone. :huh: It boggles me.....they are the ONLY strictly art supply store in town, a family-owned business now competing w/ the internet and stores like Aaron Bros. and MIchael's.....wouldn't they WANT to give the best customer service around????? It makes me sad and furious. :( My friend saw how my boss reacted to me, and then of course to her (my friend, it was tika's nanny) when I introduced her as one of my best friends in the whole world......said, "she really is a bit harsh, isn't she?" It is sad.....

so that's my rant. I am drained from it. :( ....the anxiety and adrenaline kicked in SO hard after I got "in trouble" yesterday for being slow in counting the change back to people......she said, "YOU HAVE TO GET THIS RIGHT" and I have been a mess ever since, MASSIVE headache and the familiar sinking feeling. I did explain to her that Celiac causes LESIONS in teh brain similar to Parkinson's and Alzheimer's, that my brain had changed enormously and that numbers and minutae have NEVER been my strong points, but that it was worse than ever, and I make up for it with my charm (she agreed), and she was shocked, and VERY nice to me after that. Even made small talk (they never do, except the weird brother who talks to me all day long). Then increased my hours at the end of the day....I"ll be working six-hour shifts instead of four or five......scares me. but, my boss said, I will work with you on this and am willing to give it a chance. I just think that mistakes are so crucial to her, and I WILL make them from time to time, so that could decide my fate. I told her that it would be a HUGE personal setback for me to not be able to do this job successfully, and that I really needed it to work......*sigh*. WE will see.

You know, it was much easier at the tasting room, all the customers were drunk adn it didn't matter how you counted their change back. :huh: Everybody had fun, and that was what mattered to the owners (as long as they made money, and boy, did they ever).

Sorry to go on so long......I wish love and a happy, gluten-free Thanksgiving to all of you :) Andrea.....when do you leave? Look at Seth's picture.....quite the little man!

dingo'd everything else after my rant. :( So sorry for going on so long......but they would be RIDICULOUS to even think of losing an employee like me......they get me for next-to-nothing and I give them decades of experience......and make customers want to come back.

Thanks for the support. Love to all........... :wub:

dlp252 Apprentice
This sounds odd, but I find that listening to the Harry Potter books on tape (disc) puts me to sleep. I started by listening when I was really tired, so now I've created as sort of Pavlovian response to that guys voice. When I put a disc on, I fall asleep almost immediately. It worked for those 12:30am wake ups as well.

And if sometimes it took a little longer to fall asleep, at least I was entertained....

:D Don't have books on tape, but you reminded me...I have lots of exercise videos and if I just lay down and watch one I fall asleep, lol. Course I'd have to find one that ended in a black screen. :P

dingo'd everything else after my rant. :( So sorry for going on so long......but they would be RIDICULOUS to even think of losing an employee like me......they get me for next-to-nothing and I give them decades of experience......and make customers want to come back.

You bet they'd be ridiculous! Crazy people!

AndreaB Contributor
Then increased my hours at the end of the day....I"ll be working six-hour shifts instead of four or five......scares me. but, my boss said, I will work with you on this and am willing to give it a chance. I just think that mistakes are so crucial to her, and I WILL make them from time to time, so that could decide my fate. I told her that it would be a HUGE personal setback for me to not be able to do this job successfully, and that I really needed it to work......*sigh*. WE will see.

Susan,

Sounds like you add a lot of important and sadly lacking customer service in this store. Customers will come back for someone like you who takes an interest in what they are doing and can knowledgeably help them out. Surely, they can work with you on counting change or have someone else do it. It would seem your experience would be best utilized by helping customers with their purchases (what to buy).

Hang in there. We know you are a smart cookie and we love you. :wub::wub::wub::)

DingoGirl Enthusiast
Susan,

Sounds like you add a lot of important and sadly lacking customer service in this store. Customers will come back for someone like you who takes an interest in what they are doing and can knowledgeably help them out. Surely, they can work with you on counting change or have someone else do it. It would seem your experience would be best utilized by helping customers with their purchases (what to buy).

Hang in there. We know you are a smart cookie and we love you. :wub::wub::wub::)

Thanks Andrea. :wub: but, it's their store and not mine, and they are entrenched in these ways....I guess time will tell.

gotta go hunt down a turkey breast somewhere to make my own entire dinner for tomorrow. :angry: I know you all feel my pain so why am I whining about it here? But it is a crack up - - - ME, the non-cook, non-baker, FURIOUS about cooking, and I"ll be cubing up my bread for my own stuffinf, making my own cranberry sauce, and all the other crap......kind of funny since I have NEVER cooked one thing but mashed potatoes for TG in my life. harumph! :angry::lol:

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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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