notme

if i waited for my doctors to give me a firm diagnosis, i would be dead by now.  almost 11 years later, they finally wrote on my medical records "celiac:  confirmed"  🙄
my blood test was neg, because my gp told me to start the diet without testing first.  i was so underweight that the gi doc didn't want to risk a gluten challenge, and basically told me when they drew blood for the test that it would more than likely come back negative.  when my gi doc could actually *see* the damage when she did my endoscopy, that was good enough for me to start the gluten-free diet.  
my opinion is that once you get a celiac dx, the medical industry can't make bank on you anymore, because the 'cure' is a diet.  not meds or operations.  plus, they can't treat stuff like dh or peripheral neuropathy (ie) or all the myriad of other goodies that come along with untreated celiac.  
i had migraines, but more importantly, i had a 'background' headache that i didn't even know i had till it went away.  and a laundry list of other symptoms that mysteriously went away when i went on the gluten-free diet.
my advice:  stop wasting your time, your positive reaction to the diet is one of the 5 points of diagnosis.   😎 👍

if i waited for my doctors to give me a firm diagnosis, i would be dead by now.  almost 11 years later, they finally wrote on my medical records "celiac:  confirmed"  🙄
my blood test was neg, because my gp told me to start the diet without testing first.  i was so underweight that the gi doc didn't want to risk a gluten challenge, and basically told me when they drew blood for the test that it would more than likely come back negative.  when my gi doc could actually *see* the damage when she did my endoscopy, that was good enough for me to start the gluten-free diet.  
my opinion is that once you get a celiac dx, the medical industry can't make bank on you anymore, because the 'cure' is a diet.  not meds or operations.  plus, they can't treat stuff like dh or peripheral neuropathy (ie) or all the myriad of other goodies that come along with untreated celiac.  
i had migraines, but more importantly, i had a 'background' headache that i didn't even know i had till it went away.  and a laundry list of other symptoms that mysteriously went away when i went on the gluten-free diet.
my advice:  stop wasting your time, your positive reaction to the diet is one of the 5 points of diagnosis.   😎 👍

I wanna be like Scott Adams when I grow up.. Celiac and all... 
But I'm still not taking any vaccine!

Thank you! I’ve had a quick scout around, a little shocked to see the prices but in awe that Asda do gluten free mozerella sticks 😂 this is a great resource and reams of useful info so I’ll be lurking around for sure. Thank you again x 

by the time they get to my 'group' (non-essential, low risk/healthy, mostly self-isolated) there may be several fda approved vaccines.  i am a bit nervous over the pfizer one because i do have weird allergies.  i am expecting to be probably in the last group to be vaccinated, so i hope i can choose the safest one for my situation.  i would think that everyone would choose the vaccine that is best for their health and safety.  
i have considered not taking it, but i'm hearing that you may need to have it to travel and go to music venues, two things i'd rather die than live without.  rock on, alllllllll, y'alllllllllllllll  
i am super sick of just hanging out with kevin the robot vacuum............  🙄

no offense, but go see another doctor.  a doctor can not tell you that you don't have it just from what you are able/unable to eat comfortably and without testing.   from experience, i can tell you that most doctors don't know much about celiac.  my (trusted!) doctor treated my 'ibs' for 20 plus years before he even suggested that i could have celiac (i had never even heard of it) - i was super angry that this had never been explored before they were ready to put me on a feeding tube because i was so emaciated.  the night sweats are nothing to fool with - get checked out by a gastroenterologist.  
stay on gluten until your testing is complete, you need to have the antibodies for the test to be accurate.  good luck - i have been in your shoes!  

In addition to choosing the vaccine you feel is safest, you might want to be sure that the facility where you receive it is able to treat allergic responses, and hang around for 15-30 minutes after the injection. Allergic reactions to vaccines typically happen pretty quickly.  I had a drive up flu shot this year and they made everyone stay for 15 minutes after the shot, just in case.

You didn’t forget, I hadn’t mentioned it before. But it does explain why my posts tend to be technical!

i'm curious as to how the parrot died.......
my next-door animal hoarding neighbor has one that screams obscenities.  i think she put it in the basement where she is hatching chickens........ joy..........  

This may not make you feel any better, but as someone who is newly diagnosed you may have temporary intolerances that could go away after a few months, or sometimes longer (mine took ~1-2 years to go away). At my diagnosis I could not eat chicken eggs, tomatoes, cow's milk/casein or corn. After about a year I was able to add some back, and I think it took me longer with chicken eggs.
You may also have additional intolerances that won't go away, and it is important to identify them. There is not easy way to proceed, other than keeping a food diary and noting things that cause issues and eliminating them. Enzymes may also help you. You may be able to add items back once you've healed.

here is a helpful place to start looking for ways to manage our diet better.  it takes a bit to get "good" at it, lolz, don't feel alone.  the struggle is real, but not impossible.  i think i didn't eat out/take out for a solid year.  yeah, at first i was like:  o, yeah, no big deal, i'll just order off the gluten-free menu.  haaaa ha ha, there are a million and one ways to get cross contaminated when you're trusting somebody else to feed you safely!  
also, maybe start a food journal - everything you eat, and how you feel - you may need to skip dairy for awhile, and you might be sensitive to raw fruits/veggies for a while until you heal some.  depending on how long you went undiagnosed it may take some time.  i am still seeing improvements (mostly neurological now, it's the last to leave the party lolz) after 10 years on the gluten-free diet.  take heart and have patience.  welcome to the club you never wanted to join  

here is a helpful place to start looking for ways to manage our diet better.  it takes a bit to get "good" at it, lolz, don't feel alone.  the struggle is real, but not impossible.  i think i didn't eat out/take out for a solid year.  yeah, at first i was like:  o, yeah, no big deal, i'll just order off the gluten-free menu.  haaaa ha ha, there are a million and one ways to get cross contaminated when you're trusting somebody else to feed you safely!  
also, maybe start a food journal - everything you eat, and how you feel - you may need to skip dairy for awhile, and you might be sensitive to raw fruits/veggies for a while until you heal some.  depending on how long you went undiagnosed it may take some time.  i am still seeing improvements (mostly neurological now, it's the last to leave the party lolz) after 10 years on the gluten-free diet.  take heart and have patience.  welcome to the club you never wanted to join  

the medical community can't continue to make $$ if you get a diagnosis of celiac, the gluten free diet is the cure.  no meds, no surgeries, etc.  my doctors never did test me until i was so malnourished they were ready to put me in the hospital on a feeding tube.   i had wonky blood tests and vitamin deficiencies for years, but they never did suggest celiac.  i never even heard of it, to be honest.  then, my pc told me to try the diet, which i did, and i immediately put on weight.  by the time i got to my g.i. appointment, the doc was afraid to have me do a gluten challenge because i was still underweight.   which gave me a negative blood test.  so, that's how that happens.  when she did the endoscopy, she could actually see the damage, therefore i got a dx.  good enough for me.  i follow up once a year with my gi doc.  
my story is not exclusive.  

same here - 'ibs' for 25 years  

I felt worse for a few weeks, in a way I can't quite describe. Most people I know didn't feel that way but I know it's not uncommon. And things that were better felt weird so uncomfortable (ie. stomach all light and airy rather than constantly full). I was starving and sweating and shaking, too, after not having much appetite for years. 
But I felt better after about a month. Nausea took a few months I think? Much longer than I'd expected. Random panic attacks and dizzy spells took about a year to see any change. To the point where I figured they were unrelated and strangely better for no reason but when glutened I get them, now. It's bizarre. I couldn't make one happen if I tried to, I no longer mind public speaking, my whole personality shifted. I'm still neurotic (ha. Always) but not 'anxious'. Years later and my brain feels totally different and maybe it's unrelated but I don't think so and that is better and more noticeable than the abdominal stuff. I don't have bouts of crying or anger that I was having daily, I laugh at stuff, no panic attacks. 
But it took a long long time. If it's even related. Migraines stopped 2 years in after having them multiple times a week for decades. Again, maybe unrelated. Seems like a really long time. 
And I still get sad! Around the social consequences of this, in particular. And overwhelmed. And stressed. To a normal and situational degree though. 
I hope you feel better soon! 

Congratulations!  And it is sooooo true!  

Hi! 
Just a positive note from someone 4 years into the gluten-free diet who had questions about worsening food intolerances, no change in lifelong insomnia and ongoing panic attacks (which came out of the blue a few years prior and lead to full blown agoraphobia quite suddenly 'for no reason'). It ALL went away. It took a while but all went away and feels like a different life now. 
I think I'm just posting to say...people told me that some things would take time. And they did. Even if you're feeling better, you might be going to feel even better still in the future . 
I'm STILL feeling better each year. You've got this . 

If you had been gluten free for 7-8 months your tests would be negative. If you feel you can't do a gluten challenge you will just have to go with your bodies diagnosis. That doesn't mean that you may not have something else going on as well. Also liver issues are common with celiac and may resolve on their own. If you don't want to challenge just go with being celiac avoiding all that anyone who is celiac or has gluten intolerance would avoid. If you haven't read the 'Newbie 101' thread in the Coping section for all you need to do to be safe. You may want to drop dairy and soy for a bit to make sure those are not an issue. Add them back in one at a time after you are feeling better. It takes some time to heal so try to be patient.

lmao.. exactly.  A troubled prodigy. 

Michael Jackson?

Just a few small studies on the Hepatitis B vaccine.   But it appears the vaccine works if the celiac patients are on a gluten free diet.  What is worrisome are those undiagnosed celiacs (80%) may not fare as well.  One more reason to get celiacs diagnosed.  Encourage your relatives to get tested.  
https://celiac.org/about-the-foundation/featured-news/2015/01/vaccination/
 

@Gemini
I use a clothes line still!  Nothing like sheets on the line.  Smells like sunshine.  In the summer, clothes can dry in 1 to 2 hours in Southern California.  Free energy too.  

Cyclinglady.......
It’s funny you should mention looking to older photographs regarding the fitness levels of people back then vs. today.  I have long said that also.  Not only are the food habits today really bad, but people just do not do the regular activities we did years ago that added up to keep us slender and fitter.  Cleaning your house, yard work, shoveling snow for those of us who live in colder climates, and hanging clothes out on the clothes line.......remember that?  Not that I think that is necessary but I remember lugging that damn clothes basket out back and having to hang heavy sheets and towels out.  It was not easy work but my mother made me do it.  😉. All these chores add up in calories burned.  I still do most of them except for the dreaded clothes line duty.  But, it is true.  I do not consider obesity a disease but a behavior issue......which can be changed.
I think there is a healthy balance with this stuff.  I do it, but I like to exercise and eat healthy.  I am “lucky” in that I am a thin Celiac and have remained so, even after gaining the necessary weight to be more normal.  When you exercise hard, you can have those extra cookies without damage and I like that!  😉  We also did not have those 7,000 calorie Starbucks drinks that are so popular.  Those Venti sizes are ridiculous!
As for bread, I was into the Whole Foods artisenal breads and they were good!  I always liked the peasant type breads that were dark and chewy. Little did I know they were killing me.  But when I was diagnosed, I was so sick that right away, I did not miss the old bread I was so used to eating.  The gluten-free bread did not taste bad to me.  Maybe it’s because I finally figured out how it was affecting me and i just lost all my yearning to eat bread that made me so sick.  When I ate my first slices of gluten-free bread, toasted of course, and I felt fine afterwards, that was it for me.  The bread was just fine.  I never had any trouble sticking to the diet because I never want to be that sick again, ever. It literally was killing me.
I agree with the other hidden issues one can have because I discovered the histamine problem I have just this year.  Who knew all that red wine I love was causing hives?  Gave that up and I no longer have the problem. It was the wine mainly and not the food.  So, yes, not all problems are caused by gluten and many Celiac’s have other issues which may be the real culprit.  Histamine can cause GI distress also and if you think doctors are bad diagnosing Celiac, run the histamine issue past them.  You’ll  get blank stares.  😳

It might be my age showing here but if you are that worried about the food supply, you are going to have a tough time with this diet.  I am 61 and have been gluten-free for 15 years, long enough to know that you can eat processed gluten-free items, even if you are very sensitive like me, and live to tell about it......and live very healthy and well.  Most of my diet is a whole foods diet but like many, I do enjoy the occasional cupcake or cookie.  I have to eat bread as I weight train and am a thin Celiac.  Carbs are very important and not just the whole foods one’s.
What your GI doc said about significant numbers of people still testing positive, even years later, from eating processed foods is, in my humble opinion, a bunch of baloney.  There are many people with Celiac who take huge risks most serious ones would never take and that is why they probably do test positive.  There are other reasons, of course, but I have been astounded by the numbers that cheat.  I have other family members who are diagnosed and they cheat all the time.  I do not.  They resent the hell out of me for it and I don’t care.  Other Celiac’s I have met all cheat.  Honestly, the serious ones come to this forum.  My numbers on re-test have always been so low, the doctors are amazed.  When diagnosed, they were sky high......so I must be doing something right.  There is a balance with this but people can most certainly have dessert and not ruin their hard work.  Life is too short to not enjoy a cupcake or other treat that can be safely consumed without the fear that you are killing yourself.
This is not rocket science and the average person can educate themselves about the diet and live a healthy and normal life.  I am very distrustful of doctors. They seem to like to make people think they cannot do anything without their advice.  What I have learned is that a GI doctor generally knows a lot less than the average, well educated Celiac regarding the diet.  Unless of course, they are a Celiac themselves.
 

Thank you for your input, I do have a question as I have seen conflicting opinions elsewhere. Many Gluten Free or Certified Gluten Free food items may also have a label that reads "Produced in a facility that also produces wheat products." Some have said that this is OK as long as the product hasn't been produced on the same equipment as the wheat products. Others have said that this is not OK, and to avoid the product even though it's labeled gluten free. Thoughts? Or does it really come down to ones own sensitivity? 
& yes my boyfriend and I cook gluten free meals together, he hasn't had a problem going gluten free as well and is still welcome to eat gluten food outside of the house. We share meals often but they are always gluten free meals. If he's cooking it by himself, he always reads the labels and if he's unsure about something he will ask me.