notme

Hey Squirmy!
Looking forward to communicating with everyone again.  I do see that nothing ever changes.......people STILL having trouble being taken seriously by the AMA.  Well.....except for Olivia!  
There are more people in my family being diagnosed, which came as no surprise to me.  We even recently got back in touch with some of my mother’s cousins, who now live down south and guess what?  One of the adult daughters was diagnosed and she is like me......classic Celiac.  The poor thing has numerous issues due to the length of time figuring it all out.  If there is one diagnosed Celiac in a family, there will be others.....guaranteed!

Hey Arlene!  I'm still kicking but it's been an intense year.  We moved Mom into Assisted Living last summer and she resisted it all the way.  Made our lives hell....until she lived there for about 4 months and decided it wasn't as bad as she thought it was going to be.  They have Happy Hour!  ? But she thoroughly enjoyed trying to make us feel guilty....which we did not.  She will be 87 this year and she was trying to hide from us the fact she was having trouble taking complete care of herself.  Her health suffered but she is stubborn and did not want to move out of her house.  Guess who won that battle?  ?
This year, we are going to move my husband's mother into Assisted, from Independent.  She is 92. To say it has been busy is the understatement of the year.  Trying to do all this while still working is not recommended. So, come the end of September, I will be officially retired.  That way, I can still tend to the needs of the Mom's and actually have a life of my own.  What a concept, huh?  ?‍♀️
Hope all is well with you!

posterboy:.
she got that disgusting yellow kill-all medicine when she had the thrush.  it is long gone, and I do not expect it to return now that she is eating gluten free.  her immune system should be up and running like a champ!
when you have celiac disease, your whole body is at risk of catching everything or developing some weird a$$ disease because you're flying around in the uss enterprise with your shields down, basically.  
think of it as:  your body has a diesel motor that you're putting gasoline into and expecting it to run.  well, it can, very badly and not for long!  when you adhere to the gluten free diet, your motor will run properly and your immune system will come back online.  trust me, I went undiagnosed for 25 years, saw every doctor imaginable and endured every WRONG diagnosis you can think of.  no pills worked, no treatment corrected anything.
if you have celiac and eat a healthy, balanced, gluten free diet you should need less supplements as you heal.  like magic.  but not.  lolz 
 

I bring my own bread up to the altar with me and my pastor blesses it as 'the body of Christ, given for you' - then they have little glasses of juice/wine.  the pastor we have now has a son diagnosed with crohns, so he understands special needs diets.  but even our previous pastors were ok with it.  it's symbolic - we're not *really* drinking wine, anyway.  
we were out of town for Christmas one year, and it was Christmas eve candle light communion service.  I took my bread up, and the server blessed it.  but, they had a community cup, and there was no way I was dipping.  I just faked the motion lolz, the only one who noticed was the lady holding the cup.  
o, and I always bring a few extra pieces of gluten-free bread - my brother never remembers to bring his and if there's anyone else who needs it, they don't need to skip the sacrament  
I figure:  God made me this way, so he understands.  

it's funny, because when i was first dx'd, everyone who didn't know much about celiac thought i had to eat a vegetarian diet.  i was like:  noooooo.......  ?   i had a 'not ideal' reaction to mayonnaise, (not anaphylaxic, though, ugh that must be terrible!)  turns out i had a sensitivity to soy.  and, some people are sensitive to veggies in the night shade family, whether temporary or permanent, it is a real issue.  i had a terrible reaction to eggplant many moons ago - so much so that i have never tried to eat eggplant again.  try doing the food journal thing and maybe an elimination diet.  then just eat 'safe' foods <that you have no adverse reactions to) and then you can try adding other foods back in.  you may have to wait until you are healed to reintroduce some things.  good luck!  

lolz - same!  the ultrasound didn't even show the cyst on my kidney that the ct guy said I had.  lolz, they take my blood and tell me horror stories.  then, nothing is wrong.  oh, news flash - I have celiac.  nothing is 'normal' - but everything is normal?  blah.  I feel great.  my poor husband - they have had me dead and buried so many times.  he buys me kitchen appliances when he's trying to cheer me up.  I am out of cabinet space!  hahahaha  ? 

lolz - same!  the ultrasound didn't even show the cyst on my kidney that the ct guy said I had.  lolz, they take my blood and tell me horror stories.  then, nothing is wrong.  oh, news flash - I have celiac.  nothing is 'normal' - but everything is normal?  blah.  I feel great.  my poor husband - they have had me dead and buried so many times.  he buys me kitchen appliances when he's trying to cheer me up.  I am out of cabinet space!  hahahaha  ? 

posterboy:.
she got that disgusting yellow kill-all medicine when she had the thrush.  it is long gone, and I do not expect it to return now that she is eating gluten free.  her immune system should be up and running like a champ!
when you have celiac disease, your whole body is at risk of catching everything or developing some weird a$$ disease because you're flying around in the uss enterprise with your shields down, basically.  
think of it as:  your body has a diesel motor that you're putting gasoline into and expecting it to run.  well, it can, very badly and not for long!  when you adhere to the gluten free diet, your motor will run properly and your immune system will come back online.  trust me, I went undiagnosed for 25 years, saw every doctor imaginable and endured every WRONG diagnosis you can think of.  no pills worked, no treatment corrected anything.
if you have celiac and eat a healthy, balanced, gluten free diet you should need less supplements as you heal.  like magic.  but not.  lolz 
 

A lot of good info here. https://www.makesauerkraut.com/fermented-pickles/
I use 1/2 to 3/4 cup of kosher salt per gallon of purified water, a handful of crushed garlic, a handful of bay leaves crumpled up, a bunch of dill, and Kirby cucumbers. A tablespoon or so of Crushed red pepper if you like a slight bit of heat. Remove the blossom end. Three days around 75 degrees on the counter and start checking. Put in the fridge to stop progression. I use an old one gallon rectangular Brita water filter because the top section holds the cucumbers under water and can hold 15 small kirbys.

if you have celiac and you eat gluten, you will feel terrible and do damage to your body.  there isn't any 'morning after' (for lack of a better term) tried and true remedy.  if i am accidently glutened (and i am insanely careful, so this does not happen often anymore) i find that drinking plenty of water and long, hot showers make me feel better, but it doesn't leave until day 14.  14 days.  ain't nobody got time for that.  no matter what i try, it's naps and snacks for 14 days.  then the fog lifts and my guts stop protesting. 
you will get better at avoiding gluten and cc by practicing being gluten free.  i would eat whole foods (avoid processed while your guts are healing) and skip eating out for awhile until you get better at knowing how to determine which restaurants are safe and which ones don't give a crap if they give you the craps <see what i did there lolz) go to the coping page and read the newbie thread.  there is much useful info there - more things to avoid than just bread - and ways to navigate this lifestyle.  welcome to your new normal.  pack a lunch, because if ya got celiac, every day's a picnic.  literally. 

perhaps spasm of sphincter of Oddi?  check out lavender oil and peppermint oil.

my daughter just got dx'd with celiac, and she's been hypoglycemic for years.  once her guts start absorbing vitamins and minerals, i expect this will also clear up.  it's amazing, isn't it?
doctors can't give you all the details, because most of them don't know them

your friend should definitely see a doctor.  period.  that amount of pain = he/she needs to rule out things that others have suggested.  diverticulosis <sp) is the 'diverts' that exist and will get seeds and stuff stuck in the holes then get infected.  my brother has this and the doctor gives antibiotics (which wrecks his gut flora)- less, though, since he was diagnosed with celiac and adheres strictly to gluten-free diet.  so, they should check that, as well...
funny thing - i had been having the exact thing happening every now and again.  the last time my husband was home and he rushed me to the e.r. (i was crying bc pain was so bad.  i don't cry.  he knows this.)  they did bloodwork and a c.t. scan - everything ok.  sent me home with a pocket full of scripts and i followed up with my g.i. doc.  he said either i got glutened OR i had an intestinal spasm.  made sense to me - i was nauseas and puking, nothing could move, i couldn't even keep water down!)  one of those magical drugs (i don't take the others he gave me - don't need 'em) was called dicyclomine - it's an anti-spasmodic.  at the first sign of it, i try to drink a ton of water and sometimes i can get it to move along.  but, i have the dicyclomine that i will take and it works like a charm, just makes me really sleepy and my day will be spent close to the bed and bath (not beyond <haha see what i did there
ask your friend if, after these episodes, their stool looks bright yellow (like you could see it from outer space) bc my g.i. doc told me that your body will try to make soft stool to try to move things past the spasm. 
definitely they should go to the doc to rule out other potential separate problems, but this is something i really never heard of and it helps not to panic when i know what to do about it.  i hope they get some relief.  you are a good friend.  everybody forgets but i'll quote dr. fasano: "your digestive system is a VITAL ORGAN."  and if ya had a heart attack, ya wouldn't put off prioritizing the problem.  it's the same with your guts.  you need them!!  every.  day.
good luck

For those just starting out, please see this article:
And this post, which is rather old, but mostly still useful:
 

You have Chrohns disease and the doctor isn't doing anything about it?  chrohn's  is a serious life threatening disease .  Celiac is serious, but not like  Crohn's.  
 
 
.  

I am sorry to hear about your frustrating experience with the physicians.
To me, the real question is: are you on a strict gluten free diet, and are you feeling better and healthier?
If you are, you don't need to "convince" any doctors, you don't need their blessing, certainly not their attitude.   It is your own body, if you know that gluten makes you feel bad, don't eat it.
My daughter was diagnosed 4 years ago.   We haven't seen our GI doctor in 3+ years.   Celiac disease does not require medication.   You self medicate through a gluten free lifestyle.
BUT...if you have been on a gluten free diet for years now, and still have issues, then you might want to be open to listen to the GI doctor about other possibility (perhaps in addition to celiac) that could be giving you health problems.
 

Posterboy,
Stop spamming everyone's posts with "I think you have pernicious anemia". You have also messaged me and probably everyone else saying they have that. Neuropathy caused by gluten exposure (or similar proteins i.e. oats or brown rice) is a real thing. It doesn't mean I don't process B12. I have anemia, the regular old iron deficiency kind, and have been tested several times. My B12 is fine. I am not diabetic.

Late to the post. My 2 cents. A celiac no longer a celiac? Sigh. 
I have no documented villi damage either, Can t finish my g challenge, have a lifetime of celiac symptoms, a gold standard cousin, and have several patches of DH tonight from skin exposure Friday. My chart finally says NCGS they misdiagnosed me for decades despite numerous opportunities to "see" it. So you had damage and inflammation levels enough for someone to declare you celiac, but not enough for someone to declare "enough" for him or her? Sounds like his/her problem.
Something going on there. Otherwise it would be all clear completely normal years back squeaky clean. Null and void. Not so!
My body and little patches of DH remind me what I am. Apparently I have read those with DH can eat gluten not show gold standard villi damage. Well even if test have come a long way, most professionals have not, I find most only know basics. 
My 2 cents live like a celiac. You are. No reason to doubt that except by another's interpretation. As very few Dr's think outside of box. Inflammation came from somewhere and cleared up Gluten-Free? Enough said.
I opened up Pandora s box -wish I never had. Don't be a lab rat. My NCGS diagnosis is still meaningless to most Dr and society. Ah and more importantly it is still a misdiagnosis, but at least in ball park . It got me sicker than when I ate gluten and two years  of illness and a job loss.I did it for the official diagnosis and to help my kids. My kids Dr still doesn't believe my kids could have gluten intolerance ?
Dr's are humans, some are bias, and as many of us on the forum can attest to they make mistakes. Live as a celiac or get a second opinion as the "danger Will Robinson" vibe is pinging me for my fellow commrade.
Stay safe
Good luck

i'm with frieze - an undiagnosed celiac is a medical industry's GOLD MINE.....  i suspect that is why it's so hard to get a firm diagnosis.  alllllll those lovely symptoms that they cannot make a zillion dollars on when you get diagnosed.  i recently had a doctor say i probably don't have it, then i said "i don't care.  it'll never be a pre-existing condition, then"  so he wrote it on my chart!!!   whatttt??!! 
my brother has been to doctor after doctor about all his issues, so far, he has:  diverticulitis, diverticulosis, discussed surgery, had his throat stretched (??!!), all kinds of things - the only thing that cleared everything up was gluten free diet and when he told his doctor that i had celiac, the doctor said well then, you probably do, too....   LOLZ
my sister, bless her, has been tested and tested - she has had soooo many health problems - she will never try the gluten-free diet without a doctor's dx.  i think she may be (legit) losing her mind and i wonder if that could be the cause.  because, celiac is so systemic.
one thing that really drives home the celiac dx for me:  one of my kids has r.a.(at age 12) and the other one has type 1 diabetes.  here, kids, have some autoimmune genes ? so, if you have any close relatives who also have celiac or one of their autoimmune cousins, it would be a pretty good indicator that you carry the wonky gene.  good luck!  get a second opinion! 

i'm with frieze - an undiagnosed celiac is a medical industry's GOLD MINE.....  i suspect that is why it's so hard to get a firm diagnosis.  alllllll those lovely symptoms that they cannot make a zillion dollars on when you get diagnosed.  i recently had a doctor say i probably don't have it, then i said "i don't care.  it'll never be a pre-existing condition, then"  so he wrote it on my chart!!!   whatttt??!! 
my brother has been to doctor after doctor about all his issues, so far, he has:  diverticulitis, diverticulosis, discussed surgery, had his throat stretched (??!!), all kinds of things - the only thing that cleared everything up was gluten free diet and when he told his doctor that i had celiac, the doctor said well then, you probably do, too....   LOLZ
my sister, bless her, has been tested and tested - she has had soooo many health problems - she will never try the gluten-free diet without a doctor's dx.  i think she may be (legit) losing her mind and i wonder if that could be the cause.  because, celiac is so systemic.
one thing that really drives home the celiac dx for me:  one of my kids has r.a.(at age 12) and the other one has type 1 diabetes.  here, kids, have some autoimmune genes ? so, if you have any close relatives who also have celiac or one of their autoimmune cousins, it would be a pretty good indicator that you carry the wonky gene.  good luck!  get a second opinion! 

Actually, it is offen not corn starch these days - it’s cellulose or potato starch.  But, even if it were corn, corn is safe for Celiacs.  The protein in corn is not the same  as they proteins in wheat, rye or barley.  
 
“Numerous studies have failed to detect any immunogenicity by prolamines outside of wheat, barley, and rye. Therefore, corn doesn’t contain gluten,”
https://www.cureceliacdisease.org/faq/does-corn-contain-gluten/

amen to this - show of hands of who found this out the HARD WAY...?
this past thanksgiving, i did everything gluten-free - finally perfected my mom's stuffing, brined my bird, found gluten-free fried onions for that green bean casserole that i don't even like (lolz - everybody:  suffer! hahahahaaa) and outlawed those crescent rolls.  nobody died!  everybody said how delicious everything was.  even for snacks, they make gluten-free pretzel crisps i used for crackers, and those milton crackers are the bomb dot com.
i used to make a 'gluten corner' and then freak out trying to keep everything safe.  which, i have had success with if i lay out the rules:  i keep the main part of the meal which is gluten-free on one side of the kitchen, the gluten can be in the dining room or the other side of the kitchen with PHYSICAL DISTANCE between them.  i use paper plates or bowls, and people must get a new plate or bowl if they want seconds, say, if they're eating gluten crackers with their chili, if they want that second bowl, i don't need the ladle hitting a contaminated bowl then ending up back in the chili.
also, yes, what the other poster said:  you have to be firm.  it's not mean.  it's reality. 
we were out to dinner and the server went to box up my leftover appetizer.  she says 'i can put extra bread in there with it if you want'  i thought she was kidding until she waited for my answer.  i grabbed the dish back and said:  NO.  YOU BRING BOX.  I PUT IN BOX.  i still tipped her well.  people just don't know and if they don't have to, they don't remember.

amen to this - show of hands of who found this out the HARD WAY...?
this past thanksgiving, i did everything gluten-free - finally perfected my mom's stuffing, brined my bird, found gluten-free fried onions for that green bean casserole that i don't even like (lolz - everybody:  suffer! hahahahaaa) and outlawed those crescent rolls.  nobody died!  everybody said how delicious everything was.  even for snacks, they make gluten-free pretzel crisps i used for crackers, and those milton crackers are the bomb dot com.
i used to make a 'gluten corner' and then freak out trying to keep everything safe.  which, i have had success with if i lay out the rules:  i keep the main part of the meal which is gluten-free on one side of the kitchen, the gluten can be in the dining room or the other side of the kitchen with PHYSICAL DISTANCE between them.  i use paper plates or bowls, and people must get a new plate or bowl if they want seconds, say, if they're eating gluten crackers with their chili, if they want that second bowl, i don't need the ladle hitting a contaminated bowl then ending up back in the chili.
also, yes, what the other poster said:  you have to be firm.  it's not mean.  it's reality. 
we were out to dinner and the server went to box up my leftover appetizer.  she says 'i can put extra bread in there with it if you want'  i thought she was kidding until she waited for my answer.  i grabbed the dish back and said:  NO.  YOU BRING BOX.  I PUT IN BOX.  i still tipped her well.  people just don't know and if they don't have to, they don't remember.

amen to this - show of hands of who found this out the HARD WAY...?
this past thanksgiving, i did everything gluten-free - finally perfected my mom's stuffing, brined my bird, found gluten-free fried onions for that green bean casserole that i don't even like (lolz - everybody:  suffer! hahahahaaa) and outlawed those crescent rolls.  nobody died!  everybody said how delicious everything was.  even for snacks, they make gluten-free pretzel crisps i used for crackers, and those milton crackers are the bomb dot com.
i used to make a 'gluten corner' and then freak out trying to keep everything safe.  which, i have had success with if i lay out the rules:  i keep the main part of the meal which is gluten-free on one side of the kitchen, the gluten can be in the dining room or the other side of the kitchen with PHYSICAL DISTANCE between them.  i use paper plates or bowls, and people must get a new plate or bowl if they want seconds, say, if they're eating gluten crackers with their chili, if they want that second bowl, i don't need the ladle hitting a contaminated bowl then ending up back in the chili.
also, yes, what the other poster said:  you have to be firm.  it's not mean.  it's reality. 
we were out to dinner and the server went to box up my leftover appetizer.  she says 'i can put extra bread in there with it if you want'  i thought she was kidding until she waited for my answer.  i grabbed the dish back and said:  NO.  YOU BRING BOX.  I PUT IN BOX.  i still tipped her well.  people just don't know and if they don't have to, they don't remember.

amen to this - show of hands of who found this out the HARD WAY...?
this past thanksgiving, i did everything gluten-free - finally perfected my mom's stuffing, brined my bird, found gluten-free fried onions for that green bean casserole that i don't even like (lolz - everybody:  suffer! hahahahaaa) and outlawed those crescent rolls.  nobody died!  everybody said how delicious everything was.  even for snacks, they make gluten-free pretzel crisps i used for crackers, and those milton crackers are the bomb dot com.
i used to make a 'gluten corner' and then freak out trying to keep everything safe.  which, i have had success with if i lay out the rules:  i keep the main part of the meal which is gluten-free on one side of the kitchen, the gluten can be in the dining room or the other side of the kitchen with PHYSICAL DISTANCE between them.  i use paper plates or bowls, and people must get a new plate or bowl if they want seconds, say, if they're eating gluten crackers with their chili, if they want that second bowl, i don't need the ladle hitting a contaminated bowl then ending up back in the chili.
also, yes, what the other poster said:  you have to be firm.  it's not mean.  it's reality. 
we were out to dinner and the server went to box up my leftover appetizer.  she says 'i can put extra bread in there with it if you want'  i thought she was kidding until she waited for my answer.  i grabbed the dish back and said:  NO.  YOU BRING BOX.  I PUT IN BOX.  i still tipped her well.  people just don't know and if they don't have to, they don't remember.