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Omg...i Might Be On To Something

Rachel--24

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CarlaB Enthusiast
CarlaB
Posted

Armetta, I'm glad it worked! History is different than cookies. History records the websites you've been to. I've had to delete mine before, too. LOL about the weight lifting, um, on the floor comments. Mine just disappeared when I lost weight ... my own grandmother asked if I had a breast reduction (yea, I got sick of them and had them completely eliminated!! :huh: )

Rachel, in the beginning, I lingered on the thread a bit, posted a little, but not often, so I know how it started, but wasn't really a participant, just an ocassional observer.

I think our common bond is that we've all been sick, we're all getting better and finding out what's making us ill. For me, the final culprit that I eliminated that's made me return to health was fruit juice, if you can believe that! When I got off the coffee, I started on fruit juice knowing that I am very sensitive to mold (they don't use the pretty fruit for juice). So, I eliminated the juice, and now feel better. So, I don't know if I really needed to eliminate soy at all. I'll test it when I've felt good for a couple months. Hopefully, in the end I'll be able to have soy as it's hard enough eliminating gluten and casein!

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jerseyangel Proficient
jerseyangel
Posted

Thank you Rachel--that was very well-put and heartfelt.

As someone who's been on the thread from the first few pages, I agree totally.

I've had my fun here, like everyone else. No denying that. But, recently I've found it increasingly difficult to even focus on the many pages per day to respond the way I wanted. Seriously, my brain can't handle it now, and some days I found myself backing away just because it had gotten to be too much for me. :blink:

If I had a vote, I would like to continue this journey as we began it. I've had terrific breakthroughs in figuring out my many health concerns right here. There's no substitute for talking things out with people of a like mind who share so many issues. Gosh Rachel--we connected about this stuff even before this thread was born! B)

I really hope that everyone will take what I wrote in the spirit it was intended. The friendships that I have here are very important to me--as Julie says, you guys are "my peeps"! :)

DingoGirl Enthusiast
DingoGirl
Posted

Well guys :( ......I"ve had heaps of fun here, but can't help feeling that I am one of the biggest culprits of all in the goofiness department and making this more of a chatroom, and felt pretty convicted that much of what Rachel said was directed at me....so, guess I"ll go on my merry way. :( I may visit occasionally, because believe it or not, I DO enjoy the science lessons, and have been able to help out some friends here and there.....and when people in my life start talking to me about their own or their friends' and relatives' various maladies and aches and itchies and the like, I find that I have learned SO much just from you guys, and all of the information you've shared here.

This thing was getting fast and furious - I am responsible for much of that - and sometimes I was afraid to check in knowing how I'd get sucked in again, and then create more....silliness...totally guilty. :ph34r: I don't have all the sensitivities and problems that many of you do, but do I fear developing those....and I hope I'd be welcome to come and visit.

I love you guys and how much laughter and entertainment - and scientifness - you've brought to my life. I"m sorry for contributing to things getting out of hand.....was totally caught up in the fun and camaraderie.

I will see you around.....but I"ve really got to finish painting the house, the floors, get the garden in order, learn soem new recipes (pretty sick of everythign right now), and then make heaps of jewlery.

good health and lots of love and laughs....for us all..... :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Susan,

:blink:None of what I wrote was directed at you!! In fact I just sent you a pm...please read it.

Actually what I wrote was directed at noone in particular. I just wanted to address what had been weighing on my mind and hopefully slow down the thread and get back to the way things were. You were here before things have gotten out of hand and I hope you will continue to be here. We need you and your dingos!! In no way are you responsible....we ALL are.

Susan, if you are guilty then I am guilty as well because I love your posts and I love responding to your silliness. I love that you dont read all my science lessons either...it gives me something to tease you about. :P

There is a rebel in every class...but seriously you've brought alot of yourself into this thread and its been a breath of fresh air as far as I'm concerned. I have read your posts since you joined the board (prior to this thread) and am happy that you took part in our discussions, brought us laughter, shared your stories and the fact that you have found the same joy that I've found here in this thread. Please dont leave us. :(

evie Rookie
evie
Posted
Well guys :( ......I"ve had heaps of fun here, but can't help feeling that I am one of the biggest culprits of all in the goofiness department and making this more of a chatroom, and felt pretty convicted that much of what Rachel said was directed at me....so, guess I"ll go on my merry way. :( I may visit occasionally, because believe it or not, I DO enjoy the science lessons, and have been able to help out some friends here and there.....and when people in my life start talking to me about their own or their friends' and relatives' various maladies and aches and itchies and the like, I find that I have learned SO much just from you guys, and all of the information you've shared here.

This thing was getting fast and furious - I am responsible for much of that - and sometimes I was afraid to check in knowing how I'd get sucked in again, and then create more....silliness...totally guilty. :ph34r: I don't have all the sensitivities and problems that many of you do, but do I fear developing those....and I hope I'd be welcome to come and visit.

I love you guys and how much laughter and entertainment - and scientifness - you've brought to my life. I"m sorry for contributing to things getting out of hand.....was totally caught up in the fun and camaraderie.

I will see you around.....but I"ve really got to finish painting the house, the floors, get the garden in order, learn soem new recipes (pretty sick of everythign right now), and then make heaps of jewlery.

quote

Ditto to several of you, I have spent a few hours here getting thru many postings in the time i had on the computer and have gotten SO MUCH info from this valuable site. As someone said (Rachel) newbies might have given up looking for help by the time they got thru all the posts and I do think it is important that we continue trying to get information out to those who need it so badly. that was not too long ago for me!! I did not come in to this thread util half way or so but I SURE have learned a LOT!! B)

I also want to say If I said anything or intimated anything that hurt or confused anyone..I am sorry <>

I do not think we should drop all the fun but maybe cut it down somewhat, not because I am not good @ written homor but for sake of not having so many pages. Also on a different thread last night I read a new person telling another that she would appreciate better language (not suggestive or??) Because her children read the forum sometimes, maybe we want to watch that too?? :huh:

Now, if you all get upset with me for that last remark so be it, since as far as I know I am the oldest one here, maybe I will be given the right to speak out??? And BTW our oldest dd was here for 2 days & she put me on a new pic. I wanted her to show me how to do it but she did not know how, she just did it!! :huh: our middle dd will show me how & I will write it down.!! I ma seated @ my computer & maybe my light was not on, bit dark and I was midway in my celiac struggle in mid May. Just as well light was low, but I have held my own rather well in spite of celiac and wrinkles (what's them)?? :angry::D:blink::o All have a good evening. Love u all!! evie

good health and lots of love and laughs....for us all..... :)

CarlaB Enthusiast
CarlaB
Posted

<-------- What???? I'm not silly at all, what do you mean, we are all silly?!! :rolleyes:

EVIE!!!!!! So nice to finally see you!!!!!!!!

DingoGirl Enthusiast
DingoGirl
Posted

*a mildly weeping and *sniff* - grateful dingo girl writes this...

Wow....things DO go fast here in R-ville....just after I wrote my last post I made a business transaction (yay! $$ - jewelry) and took a shower. I logged on to email someone OUTSIDE of R-ville (you mean they really exist??) and had already received a few PM's, one from our beloved President, as she noted above. It literally brought tears to my eyes and took the heaviness immediately from my heart.

Rachel....I will PM you back, but no, no hard feelings at all....and I thank you profoundly for your kind words, from the heart. We here in cyber-land don't see each other in person - and, 90% ? I believe statistics say, of communication is non-verbal, and all we have here are written words....and our friends here :):PB):lol::o and even THOSE are limited..... ;) But I think I have seen the hearts of many of you, and feel that were I to travel to many parts of this country, I could oh-so-comfortably share a cup of tea, a laugh, a shoulder and much joy with so many of you. We are all in this Silly Yak boat together, and I have no friend here, in the flesh, with Celiac, in my own world....so you guys have provided immeasurable empathy and comfort.

I am such a goof, nothing transparent about me and have unfortunately used this as my online journal.... :ph34r: in fact told my mom that if I suddenly die, just print out about 200 - 250 pages of this OMG thread, then she can see what I was going through (not that she doesn't hear it on the phone or in person every day - God bless her :lol::lol: ), so, I guess I"m still allowed in R-ville - - :huh: but won't visit as often as life requires my attention here.....and won't pour out my whole freaking heart :o in, ahem, quite the way that I have.

wow. I have never been on a forum in all my life until this one, joined back in end of January, but it wasn't until I found R-ville did I "meet" or become friendlier with people (except Lynnie, where are you?? who extended herself to me months ago). Somehow, your scientifness - - YES RACHEL I DO READ THEM ALL!! - pulled me in, it was all so interesting to me, really, but your warmth and comraderie is what held me.

Whew. kind of emotional. Gotta get back to work. I do have great fondness for all of you here, guess I"m not kicked out after all......and here we go again......you all witnessing one of my many meltdowns :lol::lol: only how funny is this, MY MELTOWN THIS TIME IS FROM OUR SILLY CULT TOWN....

am chortling to self over this.

Love and hugs to you guys. Rachel, very well said in your post - - even I didn't have the stamina to keep up with our madness!!

See you sooner rather than later. :wub: But not as often. Love surge.

EVIE - - nice to SEE you!! :)

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evie Rookie
evie
Posted
<-------- What???? I'm not silly at all, what do you mean, we are all silly?!! :rolleyes:

EVIE!!!!!! So nice to finally see you!!!!!!!!

YEP, that is silly older me!! How did you get your faces stretched?? Am sure a new product for computer I NEVER heard about HUH?? You have such nice daughters, nice of all of you to show us your families. Sometime i will put up one/ me and hubby, have another one with our 3 dd and me, may do too. Been off lots last 2 days with company here...fun, fun. Dd and I went rock hunting fri pm for her flower garden and instead visited a dear friend of mine from school years who lives near where I grew up. She filled in for me as surrogate dd for my Mom when I was busy working (out of the home and in) several years ago. Glad she could do that, her Mom was gone and later her step mom too. Helped us both!! :) Rachel, I do so admire your level head in a person your age. evie

Judyin Philly Enthusiast
Judyin Philly
Posted

Rachel

You know I've popped in and out for a long time on this thread--ever since you started it.

At first I was thinking a pole was a good idea but i think you have already made up your mind how you want this thread to proceed.

I can only speak as someone who so values your opinions and the support you have given me since the day i joined celiac.com.

I want you to know that since you began the thread, I started a RACHEL folder in my in box of CELIAC DISEASE folders.

I have well over 35 entries in there...ALL OF THESE WERE VERY IMPORTANT MEDICAL INFO THAT I WAS USING AT THE TIME, OR THOUGHT I COULD USE LATER IF THE NEED CAME UP.

You all know 'I'm a ditz' by now and have had alot of problems tracking and following this thread..just thought it was me.

The info on here is invaluable...the friendships too... One nite i stumpbled into the thread and found Susan and her dingos..I didn't know her at all.. She was having a bad nite-- just as bad as i was--. We pm'd each other and I'd like to think that we are now 'celiac friends'

This wouldn't have happen without the chatter BUT THAT BEING SAID--in my single opinion...I'd like to see it go back to more celiac/health issues postings so that it isn't so cumbersome to 'plod' through. Most of us don't have alot of time when trying to reseach immediate answers when having a 'special problem'

Rachel, please don't stop the thread. I don't have any idea how to 'edit' it to info only and maybe not realistic in terms of time or if it even can be done by you or scott....or just leave it as it is ..what ever.

I would hate to see it dissapear as there are still important issues that i haven't even had time to read but -

THEY WOULD MOST LIKELY APPEAR WHEN DOING A "SEARCH" SO THEREFORE IT WOULD BE IMPORTANT TO LEAVE IT ALL HERE....

JUST MY IMPUT AND OPINION...

WHEN WE OPEN OURSELVES UP EMOTIONALLY ON THIS FORUM-- OF COURSE IT'S A RISK--I FOR ONE HAVE ALWAYS FOUND COMPASSION, CONCERN AND HELPFUL INFO....

THANKS FOR STARTING THE THREAD AND I HOPE IT WILL CONTINUE.

JUDY IN PHILLY

CarlaB Enthusiast
CarlaB
Posted
YEP, that is silly older me!! How did you get your faces stretched?? Am sure a new product for computer I NEVER heard about HUH?? You have such nice daughters, nice of all of you to show us your families. Sometime i will put up one/ me and hubby, have another one with our 3 dd and me, may do too. Been off lots last 2 days with company here...fun, fun. Dd and I went rock hunting fri pm for her flower garden and instead visited a dear friend of mine from school years who lives near where I grew up. She filled in for me as surrogate dd for my Mom when I was busy working (out of the home and in) several years ago. Glad she could do that, her Mom was gone and later her step mom too. Helped us both!! :) Rachel, I do so admire your level head in a person your age. evie

:D The computer didn't do anything! We are actually making a fish face!! We're just talented, what can I say ;):lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Whew. kind of emotional. Gotta get back to work. I do have great fondness for all of you here, guess I"m not kicked out after all......and here we go again......you all witnessing one of my many meltdowns :lol::lol: only how funny is this, MY MELTOWN THIS TIME IS FROM OUR SILLY CULT TOWN....

am chortling to self over this.

:lol:

Yeah....our very own paradise cult farm has quickly started to become our own demise. :blink:

How ironic is that!!?? :lol:

Glad we are all better now Susan...I would hate it if you left us. I would have to get some of my own dingo girls and we would search you out and drag you back to R-Ville. :P I'm not really sure if dingos are good search dogs though (I'm thinking they might get side-tracked by squirrels :unsure: )....oh well...mine would be....they would be immune to the tempations of squirrel chasing! :P

Oh...this is still a place to pour your heart out....remember, we became drawn to the thread because of the support offered here. Thats what I dont want to lose...the warmth and the camraderie that you described. :)

VydorScope Proficient
VydorScope
Posted

Ive only poped in and out, not read evey post in this thread... I hope I have been a help here... and in case your wonder I am STILL waiting for the information on the water filter in our fridge :( GOnna have to call them soon.

rinne Apprentice
rinne
Posted

Rachel, thank you for your post. I support everything you have to say and hope that we may continue with a renewed focus on scientificness. :)

Muji is home after her adventure, apparently about 3:00 a.m. and just before the big rain started some folk arrived home to find her outside their house. She promptly sat down by the door very politely and waited to be invited in. The woman who returned her said they have a lab they had always thought a very smart dog until they met Muji. :lol:

I came across some interesting information on using a salt/vitamin C mixture to cleanse the body of parasites. Has anyone else heard about this? I have the information on the other computer and will try to sort it out. I do delete my history regularly but is there some secret history I don't know about? <_<

Susan, I'm so glad all that was sorted out, you are my absolutely favourite Dingo Girl. :D

And Evie, how wonderful to see you.

CarlaB Enthusiast
CarlaB
Posted

Have you tried decaf? Even it has some caffeine, but maybe if you drank a decaf in the morning, then it wouldn't affect your sleep. I drink regular in the morning (now that I can't have juice), and I don't have a problem sleeping -- it's only if I drink it too late in the day.

VydorScope Proficient
VydorScope
Posted

Floridian, Have you tried DeCaf?

Coffee is alot healither then ppl give it credit for, IMO.

jerseyangel Proficient
jerseyangel
Posted

Celia--

If it's not the warm-liquid thing, I'm thinking it must have something to do with the caffeine--a lot of people use coffee in the morning to help "move things along".

The acid part is interesting. Coffee is way too acid for me--I could never tolerate it, not even when I was younger. Sounds like there's something about it that your system "likes" :)

What if you experimented a little with the timing of drinking the coffee? Late enough to be useful, but not so late as to keep you awake. :unsure:

CarlaB Enthusiast
CarlaB
Posted

I have the same effect if it's caffeinated or decaf, it's just I like the flavor of the caffeinated better.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I want you to know that since you began the thread, I started a RACHEL folder in my in box of CELIAC DISEASE folders.

I have well over 35 entries in there...ALL OF THESE WERE VERY IMPORTANT MEDICAL INFO THAT I WAS USING AT THE TIME, OR THOUGHT I COULD USE LATER IF THE NEED CAME UP.

You all know 'I'm a ditz' by now and have had alot of problems tracking and following this thread..just thought it was me.

Judy,

Your post was very touching. I know you've had a hard time getting around the thread and finding out how I'm doing with my health. This is one of the bigest reasons we need to slow things down. Armetta wanted to know about the Ketotifen and she cant find any info. I gave an update a few days ago and hopefully I can find it and repost it for her. Its hard for me to follow whats going on and to keep up with how everyone is feeling and I'm on here several times a day. I can understand how you feel Judy, trying to figure things out when the thread is moving at lightening speed. Its not just you having a hard time...I think we are all a bit worn out.

Thanks for your words and input. So far it sounds like everyone is wanting the same thing so I think we can find that happy medium where the important info and health issues are the main focus but we can still have that warm and comfy feeling we once had. :)

tiffjake Enthusiast
tiffjake
Posted
Has this ever occured to anyone else? I am wondering just what compound is contained in coffee that moves the intestinal tract. I know it can't be the caffeine because it doesn't happen with caffeinated soda pop.

It probably is the caffine, because there is much more caffine in coffee than there is in a regular soda (but soda's like Jolt are packed with caffine). Also, Coffee itself, is a stimulant. Like nicotine. Anyone notice how "regular" they are after smoking? (Not that I want to get into a smoking debate....no, I don't, and no, it isn't good for you, but nicotine patches are often used "off label" for fatigue and constipation!)

So if it isn't the caffine, then it might be the coffee. In that case, you could do just the same with a strong Tea if you want to get away from the coffee.

Rachel- About your post....uh....I am new....so am I kicked out??? I didn't read this whole thread, but I read several scientificness-ed posts and felt like it would be a fun conversation......so.....let me know.......thanks.

CarlaB Enthusiast
CarlaB
Posted

Tiffany, I get the effect with coffee, caf or decaf, but not tea. Don't know why :blink:

tiffjake Enthusiast
tiffjake
Posted
Tiffany, I get the effect with coffee, caf or decaf, but not tea. Don't know why :blink:

This may be a long shot, but you might be coffee intolerant...many things that "make us sick" can "move things along" because your body is trying to get rid of it.....that just a thought.

Or....have you noticed that it is with a certian brand or flavor of coffee? Maybe try changing that....different coffees are cleaned/roasted/dusted/flavored different ways, and may have something do to with it......

CarlaB Enthusiast
CarlaB
Posted
This may be a long shot, but you might be coffee intolerant...many things that "make us sick" can "move things along" because your body is trying to get rid of it.....that just a thought.

Or....have you noticed that it is with a certian brand or flavor of coffee? Maybe try changing that....different coffees are cleaned/roasted/dusted/flavored different ways, and may have something do to with it......

Good point about the intolerance. I was just meaning to say I get the effect, not that I didn't desire the effect!! It usually only has that effect when I need it ... when things are normal, I'm fine.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel- About your post....uh....I am new....so am I kicked out??? I didn't read this whole thread, but I read several scientificness-ed posts and felt like it would be a fun conversation......so.....let me know.......thanks.

Nobody is kicked-out. :)

I just noticed that when people post a question (see Celias post above for perfect example) they are going unanswered due to the high volume of posts. Alot of posts are just chit chat that can be done in pms.....but they are getting more and more frequent and nobody can find anything helpful in the thread anymore.

I think youve only posted a few times here so you certainly arent guilty of anything. I am far more guilty and I recognize its not constructive and just trying to "fix" it.

So...NO...you are not kicked out. :)

You are sooo right about the nicotine. I used to be a smoker and yeah....my morning cig kept me quite "regular". I didnt understand why though...it was just something I'd gotten used to. Wasnt really into the scientificness of why stuff happened back then. :rolleyes:

Judyin Philly Enthusiast
Judyin Philly
Posted

Rachel says--

"So far it sounds like everyone is wanting the same thing so I think we can find that happy medium where the important info and health issues are the main focus but we can still have that warm and comfy feeling we once had. "

Rach, sounds like a winner to me.

have to get some dinner.

Judy in Philly

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Coffee has some kind of positive effect on the body....I know this has to be true. Reason being is that coffee enemas are suppossed to be extremely beneficial as far as cleansing the colon. I remember alot of discussions about it on other health boards I've been on. It cleanses the colon of toxins I believe. Maybe it has the same effect on the insides when you drink it?? :huh:

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      how much gluten do I need to eat before blood tests?

      By trents · Posted

      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
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      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
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      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).
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