Overwhelmed and unable to accept

[GFinDC]

Congrats on getting through the gluten challenge EGS1707!  That's not easy to do!  I hope your GI does take biopsy samples for review.  Sometimes they don't.  You might want to verify they are planning to do 4 to 6 biopsy samples.  Some of the damage characteristic of celiac disease is microscopic, so naked eye inspection doesn't always tell the tale.

[egs1707]

Yup they took samples as I don't get the results for a week or so, something about microscopic analysis in a lab? Only remember a few minutes either side of the procedure so looks like the sedatives did the trick. Deep down I know the result anyway just based on the reactions I've had since being back on the gluten, this is just a (very expensive) box ticking exercise imo.

Feeling worse about the situation day by day with very little hope of any kind of normal future now. Watched a video the other day that said these key points...

1. an amount of gluten the size of 1/8 of a fingernail per month is enough to trigger the autoimmune reaction
2. if the above occurs 6x increase in mortality rate as a result
3. 2x increase in mortality rate generally for people with celiac

I can't see any way of being that strictly accurate to the avoidance as an amount that small can easily be picked up from a desk, work surface, hell even a keyboard \ mouse could probably do it. Especially so in a mixed household and working environment. Short of being locked up in a clean room where no gluten ever comes in it seems that amount of ingestion is almost certain so if that's the case what's the point in even trying?

[Gemini]

2 hours ago, egs1707 said:

Yup they took samples as I don't get the results for a week or so, something about microscopic analysis in a lab? Only remember a few minutes either side of the procedure so looks like the sedatives did the trick. Deep down I know the result anyway just based on the reactions I've had since being back on the gluten, this is just a (very expensive) box ticking exercise imo.

Feeling worse about the situation day by day with very little hope of any kind of normal future now. Watched a video the other day that said these key points...

1. an amount of gluten the size of 1/8 of a fingernail per month is enough to trigger the autoimmune reaction
2. if the above occurs 6x increase in mortality rate as a result
3. 2x increase in mortality rate generally for people with celiac

I can't see any way of being that strictly accurate to the avoidance as an amount that small can easily be picked up from a desk, work surface, hell even a keyboard \ mouse could probably do it. Especially so in a mixed household and working environment. Short of being locked up in a clean room where no gluten ever comes in it seems that amount of ingestion is almost certain so if that's the case what's the point in even trying?

It is not hard to avoid gluten in daily life if you understand how cross contamination works.  No one should be using a computer if they haven't washed their hands after eating lunch that is gluten heavy.  Who wants to get smeared food on their electronics?    Plus, hand washing should be the norm, not only for gluten avoidance but for general hygiene....especially during flu season.

I have been gluten-free for 11 years and am a very sensitive, diagnosed Celiac who gets sick from crumbs.  The last time I was glutened was 2 years ago and I find it very easy to go that long, or even longer, without getting sick.  My antibodies are always in the excellent range and they were sky high when I was diagnosed. With each passing year, it becomes easier to do this because you have an added year of experience.  I'm pretty anal about it, though.  I just never take chances with food I am unsure of.  If you follow good protocol all the time, you can very successfully eradicate it from your life.  I know it seems overwhelming at first but that is because it is all so new.

The statistics you stated aren't quite true.  After 5 years on a strict gluten-free diet, mortality rates fall to that of the general public.  The key is to be strict with your diet, eat healthy, and I would bet you have a good chance of living a long, healthy life. You should not worry about keyboards, mouses or doorknobs because one should never be putting their hands in their mouth without washing them first. If people could be glutened this way, we would never be able to leave the house and would have to live in a bubble.  Relax.....with some education and experience, you'll be fine!

[ravenwoodglass]

I have to agree with Gemini. About 4 years ago I took a job at a local motel cleaning rooms.  I was undiagnosed and very ill for most of my life and am very sensitive. A glutening for me means a day of suicidal ideation with severe D followed by a 3 day GI bleed and about 3 weeks of joint and muscle pain and balance issues. The crumb level can be quite high in some of those rooms. I was a bit nervous when I started that I would end up being CC'd but that hasn't happened. I even sometimes eat my gluten free PB&J as I work. I just put my sandwich on a clean paper towel, wash my hands before I eat and will hold a section of sandwich in one hand while I dust with the other.

Just wash before you eat and don't rub your eyes or pick your nose unless you have washed first.

As to your thinking that celiac is a death sentence I had DH starting at around age 5 and GI symptoms started at that point with severe C and bone pain so severe that I would lay in bed at night screaming. It broke my Moms heart that she couldn't do anything to help the pain other than hold my hand and cry with me. The last 15 years before I was diagnosed I never had a full nights sleep as I would be up every night with severe D and the neuro, jopint and muscle issues were so bad one of my children told me the family would understand if I committed suicide. I was an undiagnosed celiac for over 40 years. I recovered.  It took time but I recovered. You can also.

[GFinDC]

Hi Egs1707,

It's perfectly possible to live gluten-free successfully.  Yeah, we need to learn how to avoid cross contamination, and avoid foods with gluten in them, but we do learn!  When I first went gluten-free I was sick very often, due to not understanding the diet well and not understanding the being very well after years of yummy pizza etc.  But I did learn to clean up my diet and got better.  Eventually I identified several additional food intolerances and removed those foods.  And I began supplementing my diet with vitamin D and selenium sometimes, stopped drinking caffeine (that was tough) and taking a multi-vitamin.  I've recovered quite  darn bit IMHO.  I sleep better, I have some energy, and I think better.

I even live with gluten eaters and don't get glutened.  I wouldn't have thought that was possible the first several years, but now that I am healed up some it works.  Heck, there is a pile  of flour on the counter sometimes but just avoid it.  My brother bakes sometimes and I just leave the area while its going on.

So, yes, you can live and learn even if it takes  a while to get there, its worthwhile.  Feeling better is a great reward for your effort.

[Pegleg84]

Jumping in a little late, but just want to say welcome to the club! Glad you'll have a firm diagnosis and can start looking forward to feeling BETTER! You had already started feeling better when you went gluten-free the first time, so it's all up from here. It might feel like an uphill battle for a while, and your body is going to do all kinds of weird things for a few months, but it's just readjusting. As others have said, stick to natural, unprocessed foods. Yes, you will have to learn to cook, but make a big batch of something simple and eat leftovers for a few days. One evening of prep could feed you for a week. Making the time and effort to do that is much better than wandering the streets hungry. And traveling is do-able too. It just takes a lot more advance planning.

Eating out is definitely the hardest. Find out where in your area you might be able to get something safely. If there's a spot you love to go, talk to the chef/management and see what they can do for you. If you're invited out with (non-jerk) friends, either suggest a place you can eat safely, or eat beforehand, or bring your own. You can easily go out for coffee or a drink or a walk or whatever. And yes, if someone doesn't want to go out with you because you can't kiss them at any moment and have to be careful about what you eat so you don't get horribly sick... then they are definitely not worth it. You will find the person who doesn't care about that, and who will be supportive. they are out there. There's lots of them.

Oh, and since no one said it, the "cross-reactivity" thing is more or less bulls$#&, meant to sell a useless test. Yes, many Celiacs end up developing temporary or permanent intolerance to other things, but it has nothing to do with other proteins being mistaken for gluten. As far as research stands, if you have another intolerance (dairy, soy, etc), it can cause inflammation and indigestion and other fun, but it won't trigger the same immune response/intestinal damage as gluten will (someone back me up on this!)

Also, this is still one of the best places on the internets to get experienced and informed and compassionate advice. I've been at this for almost 8 years, and couldn't have done it without this forum (which is why I'm here trying to pass that on a little). You will get better. It will take time. It might never be 100% again, but 90% isn't bad. Much better than feeling horrible all of the time.

Anyway, we've got your back!
Peg

[frieze]

you are understandably depressed, and grieving.  a psychologist, not psychiatrist, maybe of some help.  and yes, been there, not for celiac, but other issues that caused grief.

[egs1707]

So I haven't updated this in a few weeks... a quick summary...

Endoscopy gave the result I knew anyway, intestinal wall damage and with the blood test pretty much certain diagnosis. No surprise there, talk about a lot of pain for little gain 

Have to see a dietician for the complications of being vegetarian and have a Dexa scan as per the usual follow-up steps. Been supplementing meals with Huel gluten-free as otherwise I fear my weight dropping like a stone and I can't afford that to happen, have to keep an eye on it and hope for the best.

The lifestyle change sucks and I hate it already. Everything now is about what I can't eat, can't go, can't do because of the dietary restrictions. Christmas meals out in restaurants the first casualty, already I'm becoming more isolated socially because of the illness. I don't have much belief in counsellors as all the talking in the world doesn't change that reality, nor does it change people's reactions and views... that's just cold hard facts imo.

Although it seems I may see some physical recovery (some small improvements in the last day or two) the lifestyle is so restrictive that while I may well be able to exist my hopes and dreams for the future ended the day I got the first diagnosis

[Peaceflower]

25 minutes ago, egs1707 said:

So I haven't updated this in a few weeks... a quick summary...

Endoscopy gave the result I knew anyway, intestinal wall damage and with the blood test pretty much certain diagnosis. No surprise there, talk about a lot of pain for little gain 

Have to see a dietician for the complications of being vegetarian and have a Dexa scan as per the usual follow-up steps. Been supplementing meals with Huel gluten-free as otherwise I fear my weight dropping like a stone and I can't afford that to happen, have to keep an eye on it and hope for the best.

The lifestyle change sucks and I hate it already. Everything now is about what I can't eat, can't go, can't do because of the dietary restrictions. Christmas meals out in restaurants the first casualty, already I'm becoming more isolated socially because of the illness. I don't have much belief in counsellors as all the talking in the world doesn't change that reality, nor does it change people's reactions and views... that's just cold hard facts imo.

Although it seems I may see some physical recovery (some small improvements in the last day or two) the lifestyle is so restrictive that while I may well be able to exist my hopes and dreams for the future ended the day I got the first diagnosis

Hey egs1707,

I've been thinking about setting up holidays for people with Coeliac disease and Gluten Allergy.  I have not been diagnosed with coeliac disease, but was diagnosed with an airborne allergy to gluten after I lost my speech and muscle strength (full body paralysis) after 20 mins in a bakery.  I had already given up gluten, began making the kids lunch with brown bread, then with frozen brown bread, then had to get rid of bread from the house when I'd been given an epipen.  I know you must feel completely alone, but that's normal and you will feel bad for a few month after giving up gluten until your system is totally clear of it.  I can't go into kitchens, coffee shops, restaurants, friends' houses.  I even had to stop going to my mum's until I plucked up the courage to say I got migraine and numbness from just stepping in the door.  I lost my speech and ability to walk after a staff meeting at work in a room where food had previously been prepared.  I gave up my teaching career because I could not avoid bread and biscuits in some capacity.  They served breakfasts in that school.  I moved out of the area to start a new outdoor life and less than a year in, I was working as a teacher again, in a school where the staff kept the lid on the biscuit tin if I was around and where the deputy asked the entire teaching staff to eat their food outside the meeting room because of my allergy.  People are amazingly sympathetic when you are not afraid of being honest.  I went to my mum's for lunch last week and noticed she had packed away the toaster and any trace of wheat or gluten and made me a baked potato on a baking sheet in the oven, with a new butter, new cheese and a tin of Heinz beans.  I started taking my own mug and teabag everywhere with me so I can join people in a cup of tea without using a teabag or teaspoon that may have been in contact with gluten.  I can't accept tea from someone who has used their own teabags because they may have put their hand in with crumbs on it at sometime.  I cannot eat some of the supermarket frozen vegetables because they are produced on a line handling Barley, I discovered after being ill and tracing it to frozen sweet corn. I bake my own bread every day using Dove's Farm bread flour and a Panasonic bread maker with a gluten free setting.  I had my father-in-law for lunch and made soup and sandwiches and he kept asking for more because the bread was so delicious.  Embrace life and you will feel free.  It will come eventually, but never assume people don't care and don't be apologetic about the need to be careful what and where you eat.

[Gemini]

1 hour ago, egs1707 said:

So I haven't updated this in a few weeks... a quick summary...

Endoscopy gave the result I knew anyway, intestinal wall damage and with the blood test pretty much certain diagnosis. No surprise there, talk about a lot of pain for little gain 

Have to see a dietician for the complications of being vegetarian and have a Dexa scan as per the usual follow-up steps. Been supplementing meals with Huel gluten-free as otherwise I fear my weight dropping like a stone and I can't afford that to happen, have to keep an eye on it and hope for the best.

The lifestyle change sucks and I hate it already. Everything now is about what I can't eat, can't go, can't do because of the dietary restrictions. Christmas meals out in restaurants the first casualty, already I'm becoming more isolated socially because of the illness. I don't have much belief in counsellors as all the talking in the world doesn't change that reality, nor does it change people's reactions and views... that's just cold hard facts imo.

Although it seems I may see some physical recovery (some small improvements in the last day or two) the lifestyle is so restrictive that while I may well be able to exist my hopes and dreams for the future ended the day I got the first diagnosis

I am really trying hard to be empathetic with your posts because you are so new to this but really?  You reject counseling, which is a very good idea, you feel that your life has ended and now you can never go out to eat and are totally isolated socially and the only word I keep seeing is can't.  You know what?  You are probably right because what you put out, you get back. 

I was incredibly sick at diagnosis and down to 94 pounds.  I went years and lost years to being sick. I was 45 when I figured it out myself and had to go and ask for the blood work that they never offered.  Granted, the blood work was fairly new but, as I presented with classic Celiac, there really was no excuse for their malpractice.  After all that, not once did I ever feel my life was over.  I was ecstatic to find out I had Celiac because I could now start living again and regain my health.  Guess what I learned?  I can eat out safely at selected restaurants and the number of times I have felt restricted or left out socially is about 4 times over almost 12 years.  There have been those very few times and yes, it did suck but I am a grown up so got over it in about 1 day.  It could be a hell of a lot worse.  I could have had cancer and be dead by now. I could have been in an accident, like my husband's cousin was, and become a quadriplegic. Everyone is going to have bad things happen in their lifetime and it's how you respond to challenges in life that predicts the outcome.

I know this is much harder for some people but if you keep saying can't, can't, can't you will never recover emotionally. If you do not recover emotionally, you will not recover physically.  I am really hoping that things will change for you, mentally.  It does take a while to recover for many, including me.  It took 3 years before the very last symptom went away.  If anyone has a right to b%$@#, it's me.  I have 3 other AI diseases along with Celiac and the Celiac is the easiest one to deal with.  I have bad days too but for the most part?  I refuse to let this take me down and enjoy life much more than I ever did when I was a young woman.  Oh yeah...and I travel too. International travel.  It takes a few times before everything works out smoothly but it can be done.  You really must work on your attitude or this disease will do you in and there is no reason for that to happen.  Whatever help you need with eating out or food...whatever, just ask!  We are here to help and make the transition as smooth as possible.  You may get mad at me for saying all this but it needed to be said. I really hope things turn around for you soon and your body and mind start to heal!

[knitty kitty]

Egs1707, Did you ever get your vitamin D level checked???

I encourage you to do so asap.  Depression can be caused by a deficiency of vitamin D.  I was vitamin D deficient and the world looked as bleak and dark and foreboding as you see it now.  

Damaged villa can't absorb fats well, and vitamin D is a fat based vitamin.  Your brain needs omega 3 fats, too.  Try flax seed oil (or cod liver oil).  

You can get better. You will learn how to take care of yourself.  You will find find friends who will respect your dietary needs.  It takes practice.  It's like exercising.  The more you do it, the stronger and better you become.  Be proactive.  Ask your dietitian if you can get help to start a support group for Celiac patients in your area.  

It's a marathon. Pace yourself. You can have a wonderful life!

[egs1707]

14 hours ago, knitty kitty said:

Egs1707, Did you ever get your vitamin D level checked???

I encourage you to do so asap.  Depression can be caused by a deficiency of vitamin D.  I was vitamin D deficient and the world looked as bleak and dark and foreboding as you see it now.  

Damaged villa can't absorb fats well, and vitamin D is a fat based vitamin.  Your brain needs omega 3 fats, too.  Try flax seed oil (or cod liver oil).  

You can get better. You will learn how to take care of yourself.  You will find find friends who will respect your dietary needs.  It takes practice.  It's like exercising.  The more you do it, the stronger and better you become.  Be proactive.  Ask your dietitian if you can get help to start a support group for Celiac patients in your area.  

It's a marathon. Pace yourself. You can have a wonderful life!

Not had any blood tests since the ones that were done pre-diagnosis. Have to go back to the NHS for those and that means having another battle with the doctors to tell them what tests I need doing (as it seems their 10+ years of training are easily outsmarted by someone with Google and a forum login). 

Having said that none of the levels were of concern before so probably not much different now, it's the situation and people's attitudes that are making me feel this way and neither of those seem to have much likelihood of changing anytime soon sadly.

What will be interesting test-wise is if any of the other vitamins (E and K iirc) aren't right as those haven't yet been tested. Also wonder if pancreas tests may show up something as a new symptom is pain in the left side and back after eating, Dr Google throwing up pancreatitis there, which surprise surprise comes hand-in-hand with celiac it appears.

19 hours ago, Gemini said:

I am really trying hard to be empathetic with your posts because you are so new to this but really?  You reject counseling, which is a very good idea, you feel that your life has ended and now you can never go out to eat and are totally isolated socially and the only word I keep seeing is can't.  You know what?  You are probably right because what you put out, you get back. 

Can go out and eat at the non-gluten-free friendly restaurant... no I can't, that's the reality. Sure I can go and sit there and watch other people have their food, whilst being the butt of jokes for 2 hours but that doesn't appeal somehow. Can I make people more understanding and willing to help accommodate the gluten-free rather than laughing at it, nope can't change that either apart from cutting them loose completely. 

Can I go out on a spontaneous date and go into the first place that looks nice and eat normally, no can't do that either. It's just the reality once the sugar coated "you'll be fine just eat gluten-free" layer is stripped away. The reality of the condition is avoiding the foods that cause the problems so by definition it's an illness of what can't be consumed rather than what can.

19 hours ago, Gemini said:

the number of times I have felt restricted or left out socially is about 4 times over almost 12 years.  

In which case you're very lucky and be thankful for that. I was made to feel isolated and belittled in front of others at least 4 times in the first week after the diagnosis. If people in the real world (away from these forums and suchlike) had been kind and understanding maybe I'd feel a bit better about it. Sadly my experience so far has been that people either treat it as a joke, a weakness to exploit for their own gains or make sarcastic comments about overreacting, can you blame me for how that makes me feel?

Maybe it's a generational thing as the only people who have been a bit more understanding in the world world over the past few weeks have been a bit older. Unfortunately though the same doesn't apply with those I need to socialise with where thanks to dating apps, proliferation of social media people (and relationships to some extent too) are seen as disposable. I've seen that happen right in front of my eyes the past few weeks

Even saying the name of the illness is enough to send people running, I mean come on "celiac disease" even sounds like something you can catch, horrible turn of phrase for a horrible condition imo. Using "gluten intolerant" sounds a bit less threatening and slightly more socially acceptable. Only problem is that's verging into fad diet territory that again is right up there in the joke book to the point I'm seeing gluten-related comedy routines popping up in on my FB news feed.

The gluten-free diet in itself is manageable I get that, however the whole cross-contamination situation really does come across as quite neurotic to people living a normal life. As a test replace the word "gluten" for "dust" in terms of how you'd describe the conditions required in a kitchen and see how it sounds if someone was describing their cleaning routine...

Quote

It might feel like an uphill battle for a while, and your body is going to do all kinds of weird things for a few months, but it's just readjusting. 

Oh, and since no one said it, the "cross-reactivity" thing is more or less bulls$#&, meant to sell a useless test. Yes, many Celiacs end up developing temporary or permanent intolerance to other things, but it has nothing to do with other proteins being mistaken for gluten. As far as research stands, if you have another intolerance (dairy, soy, etc), it can cause inflammation and indigestion and other fun, but it won't trigger the same immune response/intestinal damage as gluten will (someone back me up on this!)

Oh yes the body is doing that alright, all kinds of weird side-effects, pains and general "wtf?" moments at present.

I really hope that is the case, I know the Chicago University shot down those theories as unproven so hoping that it's a case of pseudoscience rather than something that is actually correct but just hasn't had the research to back it up.

19 hours ago, Gemini said:

You may get mad at me for saying all this but it needed to be said. I really hope things turn around for you soon and your body and mind start to heal!

I'd rather people say stuff how it is than give the "everything's going to be OK" line when in reality we know that for a lot of people with this illness it's not that simple so don't worry about being brutally honest. Makes for a more productive discussion imo.

[ravenwoodglass]

22 hours ago, egs1707 said:

So I haven't updated this in a few weeks... a quick summary...

Endoscopy gave the result I knew anyway, intestinal wall damage and with the blood test pretty much certain diagnosis. No surprise there, talk about a lot of pain for little gain 

Have to see a dietician for the complications of being vegetarian and have a Dexa scan as per the usual follow-up steps. Been supplementing meals with Huel gluten-free as otherwise I fear my weight dropping like a stone and I can't afford that to happen, have to keep an eye on it and hope for the best.

The lifestyle change sucks and I hate it already. Everything now is about what I can't eat, can't go, can't do because of the dietary restrictions. Christmas meals out in restaurants the first casualty, already I'm becoming more isolated socially because of the illness. I don't have much belief in counsellors as all the talking in the world doesn't change that reality, nor does it change people's reactions and views... that's just cold hard facts imo.

Although it seems I may see some physical recovery (some small improvements in the last day or two) the lifestyle is so restrictive that while I may well be able to exist my hopes and dreams for the future ended the day I got the first diagnosis

Talking to a counselor or psychologist may not change the fact that you have celiac but it can help you change your very negative attitude about the diagnosis.

You can live a very full and active life with celiac. It is not the end of your world it is the beginning of one that is healthier and if you allow it to be, happier.

I do so hope you can see the world in a brighter light soon.

[notme]

duuuuuuuude.   you are speaking to a forum of celiacs.  we *alllll* face these difficulties.  are you saying my life sucks?  

i went undiagnosed for TWENTY FIVE YEARS.  i am 6 years into the gluten-free lifestyle and have not developed any other major difficulties.  in fact, all those terrible things (symptoms, tons of them) went away.  you won't see a whole bunch of long time board members all the time on here because they've figured it out, healed up, and moved on.  from time to time, they'll come back for some specific advice or solution to a problem, but mostly, they've gotten their sh*t together and got on without us.  we miss them, but glad they got it sorted out.  i would say stop googling at this point.  this is the best interactive forum there is, hands down, no doubt.  yes, for us, every day's a picnic - literally, because you have to bring your food everywhere, lolz, but you will get used to it.  it takes 24-48 hours for me to realize where and what has glutened me (which was at a restaurant, usually, so eat before and go for the WINE <love it, k, lolz)   and the company if they're not jerks.  cross reactivity IS bulls$#& (i got you, peg!)  and if you're confused about what has made you sick, keep a food journal <which, i use the myfitnesspal, yes, i am also supposed to have some ungodly # of calories each day = that's what BEER is for lolz (gluten-free of course - i special order it at my local store and they keep it JUST FOR ME)  i sneak food into places.  i sneak beer into places.  i've put gluten-free beer into plastic water bottles in the racetrack parking lot b/c no glass bottles were allowed.  use your creative side!!  i have 10,000 backpacks/lunchboxes/coolers, yes i do.  amy's stuff is crap.  you can share an oven with gluteneaters (just use the top rack if food is uncovered), you can walk through the bread aisle, and it takes exactly 4 minutes to make a pb&j sandwich to throw in a bag with a bottle of water.   BOOM.  done, son.  jump in the car (or whatever) there you have your spontaneity.  i make big meals and freeze portions for when there is a dinner i want to go to so i have something to bring.  or i call and see what's on the menu and make something to bring that is similar (and usually  BETTER hahaha)  or i'll bring a gluten-free dish to share.   nobody even bats an eye when i show up with my backpack full of goodies.  when we go on trips, i bring a cooler with premade sandwiches and whatnot depending on how long we are going for.  had to do a funeral out of state.  found a gluten-free restaurant and ordered a bunch of food to go and it kept me for a week.  my son has type 1 diabetes (that got diagnosed before i ever heard about what celiac even was) and we couldn't figure out where in the world that came from  (same gene) but that doesn't necessarily doom you to the future.  wash your hands with soap and water.  when in doubt, it don't go in the mouth <if you're not completely sure something is safe, do not eat it)  take it easy, one day at a time, we all started at the same place, you will get there.  

and last:  you're THIRTY??  i wish i had a dx when i was 30... you're gonna be soooo freaking healthy.  trust me  

[notme]

o, and almost forgot - when your body starts acting like it should because you've been gluten free for awhile, your immune system will be CRAZY good.  like, better than everybody else's.  i've not been sick at all, not even a sniffle, in the past 6 years.  before that, i caught every cold (that would turn into bronchitis or pneumonia) every flu, etc - last year the flu came around and EVERYBODY  got it.  laid up my big tough husband for four days!  guess who's got 2 thumbs and didn't get it?  this chick   and here's a really good one:  i got tested for hep c and came back positive - pretty serious, even with the new treatments coming out.  went back for my follow-up and for treatment plan - talk about ominous conversation - and they drew the blood to see what my viral load was.  guess what - my body cleared it on it's own.  kicked hep c right in the ace - doctor could not explain it.   so, i guess my celiac diagnosis actually prolonged my life by making my body run like it should.  i think of it like trying to run a diesel engine on gasoline - it only works when you use the correct fuel.  ok, i'll shut up now  

[kareng]

Good posts, Notme!   Lol  

I have a lunch tote, frozen container, etc collection.  Anytime they are featured  on Good Morning America at "half price/ free shipping"....  I had to remove some from the freezer to put left- over turkey and bread from Thaksgiving!  Ugh...

I brought a very pretty and delicious salad to a funeral.  I put the green stuff in, then made a line of bacon, a line of ham, a line of cheese, a line of carrots, etc.  Everyone else was eating cold cut sandwiches and potato salad from the grocery.  Wonder who had it worse?

[egs1707]

Will reply to the points above shortly but in the meantime I'm experiencing what I can only describe as a rebound effect, now back feeling how I did after first going gluten-free.

Shoulder pain has returned, pain both sides of the abdomen and a rather unhappy gurgling stomach area. Muscles also feel like they're burning, which was the horrible sensation from before as well. Would say it's gluten but I haven't had any and we've done as much as possible at home separating stuff etc.

Two things to note, 1) I had a bit of a sore throat and sniffle over the weekend, could it be an OTT immune response? 2) replaced my non-gluten-free protein shake with Huel gluten-free version, which has oats in and I drink throughout the day.

If cross reactivity is a myth can oats give such an extreme gluten-esque reaction? I'm loathe to cut them out as I lose weight on the gluten-free diet and if I don't have some form of protein fix I can see me shedding weight to unhealthy levels (bear in mind I don't eat meat).

Caught in a bit of a catch-22 not knowing if these symptoms are part of detox from gluten (only 2 weeks in) or if there's something in the diet that's actually glutening while I'm thinking I'm gluten-free.

I definitely can't do the full elimination as if I take out dairy, oats, soy and nightshades I'm left with pretty much nothing so as it stands nutrition > discomfort in terms of priority.

[Peaceflower]

13 minutes ago, egs1707 said:

Will reply to the points above shortly but in the meantime I'm experiencing what I can only describe as a rebound effect, now back feeling how I did after first going gluten-free.

Shoulder pain has returned, pain both sides of the abdomen and a rather unhappy gurgling stomach area. Muscles also feel like they're burning, which was the horrible sensation from before as well. Would say it's gluten but I haven't had any and we've done as much as possible at home separating stuff etc.

Two things to note, 1) I had a bit of a sore throat and sniffle over the weekend, could it be an OTT immune response? 2) replaced my non-gluten-free protein shake with Huel gluten-free version, which has oats in and I drink throughout the day.

If cross reactivity is a myth can oats give such an extreme gluten-esque reaction? I'm loathe to cut them out as I lose weight on the gluten-free diet and if I don't have some form of protein fix I can see me shedding weight to unhealthy levels (bear in mind I don't eat meat).

Caught in a bit of a catch-22 not knowing if these symptoms are part of detox from gluten (only 2 weeks in) or if there's something in the diet that's actually glutening while I'm thinking I'm gluten-free.

I definitely can't do the full elimination as if I take out dairy, oats, soy and nightshades I'm left with pretty much nothing so as it stands nutrition > discomfort in terms of priority.

Cross-reactivity is not a myth.  My daughter carried on being sick until we also stopped giving her oats.  The reaction may not be as severe, but we can't touch any gluten free wheat or oats, because they can label things gluten free that are up to 20 parts per million gluten containing.  That's not gluten free.  Despite what people may experience, we all have a different tolerance level and only you will be able to work out what yours is.  Just cut out anything with wheat, oats, barley, rye, even if labelled gluten free, then see how you are and try these things one at a time once you have recovered again.  It may take a fortnight before you begin to feel better, but you could notice a change before that once you've cut out oats.  Not ever Coeliac can tolerate gluten free oats.  Your reactions may become less after a while, but it takes months at first before you heal enough for a little not to cause a ripple effect.

 

[egs1707]

And therein lies my worry, can't see me getting anywhere near the levels of protein I need without them. Seems lose-lose whatever option I take 

[Peaceflower]

9 minutes ago, egs1707 said:

And therein lies my worry, can't see me getting anywhere near the levels of protein I need without them. Seems lose-lose whatever option I take 

There are solutions.  Get some doves farm flour and make banana loaves, bread, eat eggs, fish (do you eat fish?), lentils (speckled ones boiled with brown rice are delicious with fried onion on top and greens on the side), eat pumpkin or squash, chips with beans and cheese, baked potatoes with something and plenty of broccoli or spinach.  I dropped to below 6 & a half stone and am over 9 now and I don't have a crumb of anything labelled gluten free ever...

 

[egs1707]

No meat, no fish at all.

Read somewhere lentils and beans can end up with the same effects, if so then what?

I need to be around 12-13st but if I don't find a protein shake replacement to top up between meals I'll be down to 10st in a month's time given the speed I was losing weight on gluten-free last time. Managed to get some back on with the shakes while waiting for the endoscopy which gives me a bit of leeway but not much.

[kareng]

1 hour ago, Peaceflower said:

Cross-reactivity is not a myth.  My daughter carried on being sick until we also stopped giving her oats.  The reaction may not be as severe, but we can't touch any gluten free wheat or oats, because they can label things gluten free that are up to 20 parts per million gluten containing.  That's not gluten free.  Despite what people may experience, we all have a different tolerance level and only you will be able to work out what yours is.  Just cut out anything with wheat, oats, barley, rye, even if labelled gluten free, then see how you are and try these things one at a time once you have recovered again.  It may take a fortnight before you begin to feel better, but you could notice a change before that once you've cut out oats.  Not ever Coeliac can tolerate gluten free oats.  Your reactions may become less after a while, but it takes months at first before you heal enough for a little not to cause a ripple effect.

 

Reacting to oats is not a " cross- reactivity".  It appears that a few, maybe 8% ( can't remember the exact number) have a version of Celiac that reacts to oats.  Cross- reactivity is the nonsense that a body sees coffee as gluten.

[kareng]

53 minutes ago, egs1707 said:

No meat, no fish at all.

Read somewhere lentils and beans can end up with the same effects, if so then what?

I need to be around 12-13st but if I don't find a protein shake replacement to top up between meals I'll be down to 10st in a month's time given the speed I was losing weight on gluten-free last time. Managed to get some back on with the shakes while waiting for the endoscopy which gives me a bit of leeway but not much.

You may have said why you don't eat meat or fish but .... maybe to be healthy you will need to add some into your diet?  If you restrict yourself severely, you won't get the nutrients you need.  

[Peaceflower]

6 minutes ago, kareng said:

Reacting to oats is not a " cross- reactivity".  It appears that a few, maybe 8% ( can't remember the exact number) have a version of Celiac that reacts to oats.  Cross- reactivity is the nonsense that a body sees coffee as gluten.

Hiya, I know it's not and I didn't say any more about cross-reactivity, but I thought maybe they were confused and didn't realise Coeliacs can react to Oats.

 

 

[Peaceflower]

6 minutes ago, kareng said:

You may have said why you don't eat meat or fish but .... maybe to be healthy you will need to add some into your diet?  If you restrict yourself severely, you won't get the nutrients you need.  

Vegetarian