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I Can't Stop Weeping...


uz2bcul

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uz2bcul Newbie

I am the worst dieter in the world. I am absolutely crushed by having to admit that I have to change my life and my habits. I LOVE being low maintenance. I know that I will feel better by receiving this diagnosis (it started with Dermatitis Herpetiformis (horrible skin rash) and has led to me needing to lead a gluten-free life, so I know that I will get some relief... but I just can't imagine how this is going to work. You all seem so matter-of-fact, and I am just downright annoyed and sad. Did anyone else just feel mad and sad and exhausted by this whole thing?


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Jestgar Rising Star

Rearranging your entire life is a hard hard thing. Your feelings are completely normal and something almost everyone goes through.

I know it's overwhelming and frightening (and maddening and scary and humorous and all kinds of feelings) but it does get easier with time. You find ways to make it work for you, whatever your lifestyle.

Hang around and read about how other people cope. And welcome. :)

IrishHeart Veteran

Honestly, I have felt so horrible for so long, in excrucaiting pain , so I am relieved to know I will feel better.

But YES!! I am pissed off and I cry and I get frustrated and then, I think how crippling and disabling and life-stealing this has been and I am grateful there's a way to make that hell stop.

Te hardest part was trying to figure it all out (I made a lot of mistakes at first because my BRAIN was so messed up ) but now, it's not that big a deal.

Mostly because now, My brain works again!!yaaay!!

You will grieve-- cry, shout, be mad!!---and then, you will just do it because your very life depends upon it.

There's a lot of help and hope on here! Hang tough--we are all here for you!! :)

Loey Rising Star

I am the worst dieter in the world. I am absolutely crushed by having to admit that I have to change my life and my habits. I LOVE being low maintenance. I know that I will feel better by receiving this diagnosis (it started with Dermatitis Herpetiformis (horrible skin rash) and has led to me needing to lead a gluten-free life, so I know that I will get some relief... but I just can't imagine how this is going to work. You all seem so matter-of-fact, and I am just downright annoyed and sad. Did anyone else just feel mad and sad and exhausted by this whole thing?

This disease sucks and you have every right to feel all of the emotions you are going through. Finding this forum was the best thing that's happened to me since my diagnosis last June. It's made up of the kindest, most generous and intelligent people gathered in one place. You can always come here to vent and know that no one will judge you. You're not alone in this. Hang in there!!! Feel free to PM me if you need to vent one-on-one.

Loey

cahill Collaborator
I LOVE being low maintenance. I know that I will feel better by receiving this diagnosis (it started with Dermatitis Herpetiformis (horrible skin rash) and has led to me needing to lead a gluten-free life, so I know that I will get some relief... but I just can't imagine how this is going to work. You all seem so matter-of-fact, and I am just downright annoyed and sad. Did anyone else just feel mad and sad and exhausted by this whole thing?

Let me just say OH YEAH!!!!!! I am not quite <_< as angry as I was,, mostly now it is sadness I feel ,grieving a loss, of time,health ect...., :( but even that is getting better,,,hang in there ((HUGS))

As far as low maintenance,, what is lower maintenance then : throwing some meat in the crockpot in the morning and at dinner fixing some veggies and fruit for dessert??,,, a new way of thinking for sure, but this can be as low maintenance as you want it to be.

ravenwoodglass Mentor

It is hard at first but once you start seeing the results it will be worth all the trouble. You may also be going through a bit of withdrawl as well as the greiving process so take it easy on yourself. Treat yourself to stuff you enjoy whether it is a long walk, a movie or a good dose of chocolate. Cry when you need to and ask any questions that come to mind. The only reason so many of seem so 'matter of fact' about it is because we have been doing this for a while and we have seen the positive changes. But most of us have gone through all the feelings you are right now. Hang in there.

zus888 Contributor

Been there, done that. I haven't started the diet yet, but I will be in the next few days. But I've been BITTER. Very bitter. I'm mostly over it now. I had to basically go through a grieving process in order to move forward.


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Gfreeatx Apprentice

Definitely you need to let yourself go through a grieving process. When I first was diagnosed it took me at least three or four months before I didn't have a good cry every few days, but now I'm finding I am so much happier. I try to focus on all the great things that have come from my diagnosis, like not passing out from my heart condition on a regular basis. It's so true what everyone says on the forum, it does get much easier. Hang in there!

love2travel Mentor

Been there, done that. I haven't started the diet yet, but I will be in the next few days. But I've been BITTER. Very bitter. I'm mostly over it now. I had to basically go through a grieving process in order to move forward.

Me, too. I feel robbed. :angry: My husband and I travel all over the world on culinary journeys and that has changed dramatically. :( It's not fair that I as such a major foodie has been dealt such a crushing blow. <_< I teach cooking classes for crying out loud. And I felt fine before finding out I have celiac disease - better than I do now so that seems doubly unfair. Now I am drained and when I was eating gluten I was full of energy. My mind is foggy and before I felt much more clarity.

In order to keep going I tell myself that my diagnosis could possibly have saved my life. :) But I'm not going to lie - it is painfully difficult.

notme Experienced

i felt that way at first, too. i still have little meltdowns but they are less frequent. yep, it really sucks with a capital SUCK. because (the hardest part for me, anyway) is that it is forever. in the beginning i was so angry and i was trying so hard to stick to the diet but i wasn't feeling any better at all. all a waste of time and effort! plus, i was making my family go through it as well. i didn't purge my pantry at first (denial) i didn't keep a food journal (nothing matters because i didn't feel any better) i bought alot of processed stuff that was labeled gluten-free but tasted like crap! but then one day, i woke up and didn't have to run to the bathroom twelve times an hour! i didn't feel like turning over and going back to sleep! i made a list of things to do for the day because i felt energetic (wow, what a feeling that i forgot) and i started gaining back my body weight - i have put on 20 lbs and have not gone up a size yet, which was probably all muscle weight - also, if i do chores around the house (washing windows, etc) i don't feel like i've been hit by a truck for days afterwards. that has just come back, i've noticed, in the past few weeks or so. and i've been gluten free since late july of last year. so hang in there. i cry a little for everybody who comes on here for the first time because i remember how i felt in the beginning - overwhelmed and mad as hell and sad all at once. i stood in the supermarket for an hour then i bought nothing and went home and cried. it will get easier :) i plomise ;) you are in the right place: nobody understands us like us :)

eatmeat4good Enthusiast

I'm several months into this and I'm still pissed off that it took 7 years of complete and total self-destruction and a bunch of ridiculous diagnoses to finally realize the answer was at my fingertips!!??!!

I'm glad I found it, but now several months into this, I wanna know where do I go to get the last 7 years of my life back? Yeah, you are not alone. I loved being the one who never ever "special ordered". I sure ain't that girl now!

But knowing what caused the sores and my brain to be crazy is worth everything to me.

So we fight the good fight...because we have to. But there are some days....

DH and neuro symptoms were killing me. I'm thrilled to know there was an answer after all those years of hell.

Don't know how long you have been suffering, but I sure do hope you heal fast.

Venting helps. For all those years I was obsessed with "What the hell is WRONG with me?" Then when I found it I went through, "Why the hell didn't I figure this out?" And now that I'm healing it's like, "WTF? You mean I really can be WELL as long as I follow the Celiac rules? Cool!"

It is beyond wonderful not to have despair and illness and to be in control of my life again!

You will have those days too.

Judy3 Contributor

Going gluten free is not the easiest thing in the world to do. Our society is overloaded with gluten containing foods. I've been gluten free for 4 months now and it does get easier with time. I'm good at home, I can find all the foods I want and need at my local grocery store. The only time I have an issue is eating out which occurs quite frequently for work or just a get together with friends. Watching television has become a pain too.. All the commercials!!! Just the other day I spouted "why does everything have to come on a bun or be breaded?" A little period of feeling sorry for myself but then I come out here and see that I'm not alone and it makes it easier. Not to mention that I feel 100% better than I have my entire life so that's a major plus.

Grieve as you must, get mad, get sad, but don't let it stop you from getting on with your life. Gluteny food is just one part of life. There is so much to be enjoyed that doesn't pertain to food that I feel dumb sometimes for having fits about missing gluten. Today, I went to lunch with two of my friends and the only thing on the menu that I could even try to eat was a salad with grilled chicken, 'the only thing' and I had to tell them to leave the croutons and breadstick in the kitchen but you know what? We had a wonderful time catching up and in the end it didn't matter what I had to eat. I saw my friends and enjoyed conversation and laughter and love. Perspective... that's what needs to change. Focus off the food and onto the real reason we gather together... :0)

Peace to all

angelwingsmama Newbie

<_< I am glad that I have found this forum. I have been so confused since I was told that I have Celiac DIsease. My Mom just passed away from Pancreatic Cancer in October and she had Celiac Disease for ten years. She was diagnosed in July of 2010 and was told she only had 4 months. That was the worst time of my life. I miss my Mom sooooo much. I wish she was here so we could go through this together.

My thing is that she lost lots of weight due to the Celiac Disease and I am the opposite. I have been told for years that I have Irritable Bowel Syndrom. I need to pay attention to what I eat. That was all I was told. Well it never went away then they did the Celiac Disease test and ah hah guess what. But I don't loose any weight at all I just keep gaining and loose a couple of pounds then gain right back. I was also told that I have swollen Lynph Nodes in my chest area just above my stomache. If I follow a Gluten Free Diet it controls the swelling.

Has anyone else had these symtems. I need some help trying to figure it all out. I am having alot of trouble sticking to this diet because I travel all the time for work so alot of the times I eat while I drive.

Thank you and sorry if it sounds like I am whinning.

nmthommy Rookie

I'm also low maintenance. I couldn't believe I would have to "think" about what to make and "PLAN".

I've only been doing it 2 weeks and I have to say it's not too bad. It's actually less fuss 'cause you eat simple. No big complex meals.

I hope you find comfort knowing you are not alone.

nmthommy Rookie

<_< I am glad that I have found this forum. I have been so confused since I was told that I have Celiac DIsease. My Mom just passed away from Pancreatic Cancer in October and she had Celiac Disease for ten years. She was diagnosed in July of 2010 and was told she only had 4 months. That was the worst time of my life. I miss my Mom sooooo much. I wish she was here so we could go through this together.

My thing is that she lost lots of weight due to the Celiac Disease and I am the opposite. I have been told for years that I have Irritable Bowel Syndrom. I need to pay attention to what I eat. That was all I was told. Well it never went away then they did the Celiac Disease test and ah hah guess what. But I don't loose any weight at all I just keep gaining and loose a couple of pounds then gain right back. I was also told that I have swollen Lynph Nodes in my chest area just above my stomache. If I follow a Gluten Free Diet it controls the swelling.

Has anyone else had these symtems. I need some help trying to figure it all out. I am having alot of trouble sticking to this diet because I travel all the time for work so alot of the times I eat while I drive.

Thank you and sorry if it sounds like I am whinning.

I don't have a problem thinking of it as a diet. This is a life choice. It is poison you are putting into your body. For me that makes all the difference.

I say "oh, look there is cake. Yum. Oh that's poison." It no longer feels like I'm deprived.

I hope this helps.

Wenmin Enthusiast

When I found out that I had Celiac Disease in July 2008, I was SO relieved because of the horrible pains and problems gluten was causing me. I don't miss much that I can no longer have. I have found substitutes for most items. Yes, it is a problem to plan ahead, but my well being and mental attitude towards life is worth it. I know this is hard to comprehend at the momentm but hang in there it does get easier....

Anyoone know a good substitute for beignets, let me know.....

Wenmin

angelwingsmama Newbie

<_< I am glad that I have found this forum. I have been so confused since I was told that I have Celiac DIsease. My Mom just passed away from Pancreatic Cancer in October and she had Celiac Disease for ten years. She was diagnosed in July of 2010 and was told she only had 4 months. That was the worst time of my life. I miss my Mom sooooo much. I wish she was here so we could go through this together.

My thing is that she lost lots of weight due to the Celiac Disease and I am the opposite. I have been told for years that I have Irritable Bowel Syndrom. I need to pay attention to what I eat. That was all I was told. Well it never went away then they did the Celiac Disease test and ah hah guess what. But I don't loose any weight at all I just keep gaining and loose a couple of pounds then gain right back. I was also told that I have swollen Lynph Nodes in my chest area just above my stomache. If I follow a Gluten Free Diet it controls the swelling.

Has anyone else had these symtems. I need some help trying to figure it all out. I am having alot of trouble sticking to this diet because I travel all the time for work so alot of the times I eat while I drive.

Thank you and sorry if it sounds like I am whinning.

Thank you that is a real good way to look at it. Poison it is.

cassP Contributor

I am the worst dieter in the world. I am absolutely crushed by having to admit that I have to change my life and my habits. I LOVE being low maintenance. I know that I will feel better by receiving this diagnosis (it started with Dermatitis Herpetiformis (horrible skin rash) and has led to me needing to lead a gluten-free life, so I know that I will get some relief... but I just can't imagine how this is going to work. You all seem so matter-of-fact, and I am just downright annoyed and sad. Did anyone else just feel mad and sad and exhausted by this whole thing?

you hit it on the nail with "low maintenance"- THAT, and the inconvenience- is what i find difficult.. and the ADDITIONAL food intolerance i have- now has made me cry. taking the gluten out- and STILL having food put me in agonizing pain...

i feel for you- and what made all of this much easier for me (than for others including you)- is that ive been dieting my whole life- and specifically been "rehearsing" for this since about 1998/1999. off and on since then ive been about 95% wheat free... sometimes not eating a complex carb or anything with sugar for months.. so, it wasnt a huge life change for me.. but it's still difficult and tedious... making sure you dont get a speck of gluten-

it IS upsetting just how much you have to abstain from- all the sauces and gravies too, etc. etc.. soup, diner food... it just gets ridiculous... and even tho, it make come across as "old hat" for me- i sometimes get very sad missing the days when i was ONLY following Atkins/Bloodtype... it was much easier and CONVENIENT.

you're gonna be ok... you'll get more and more used to it- and you can always come here to let it all out

healinginprogress Enthusiast

I am the worst dieter in the world. I am absolutely crushed by having to admit that I have to change my life and my habits. I LOVE being low maintenance. I know that I will feel better by receiving this diagnosis (it started with Dermatitis Herpetiformis (horrible skin rash) and has led to me needing to lead a gluten-free life, so I know that I will get some relief... but I just can't imagine how this is going to work. You all seem so matter-of-fact, and I am just downright annoyed and sad. Did anyone else just feel mad and sad and exhausted by this whole thing?

Ohmygoodness, YES!!! I honestly think there is a grieving process involved in giving up gluten, and/or whatever other food group you find out you're sensitive to, as well! There are times where I'm totally fine, but there are definitely a lot of times and moments where I'm horribly sad, overwhelmed, and/or incredibly jealous. The first week was definitely the most overwhelming, and it IS getting easier as far as knowing WHAT I can or can't eat, but the emotions are still up and down.

When you think about it, your world has really been turned upside down...I know that I never imagined that this was how things were gonna go for me. We have to let go of the way of life we used to lead. It's a big change, and big changes are scary.

Sometimes I curse gluten, shaking my fist in the air! HAHA, ok, now I'm just having some fun.

But seriously...give in to it. Take it one day at a time, you'll get it in no time. And coming here helps a lot!

Loey Rising Star

<_< I am glad that I have found this forum. I have been so confused since I was told that I have Celiac DIsease. My Mom just passed away from Pancreatic Cancer in October and she had Celiac Disease for ten years. She was diagnosed in July of 2010 and was told she only had 4 months. That was the worst time of my life. I miss my Mom sooooo much. I wish she was here so we could go through this together.

My thing is that she lost lots of weight due to the Celiac Disease and I am the opposite. I have been told for years that I have Irritable Bowel Syndrom. I need to pay attention to what I eat. That was all I was told. Well it never went away then they did the Celiac Disease test and ah hah guess what. But I don't loose any weight at all I just keep gaining and loose a couple of pounds then gain right back. I was also told that I have swollen Lynph Nodes in my chest area just above my stomache. If I follow a Gluten Free Diet it controls the swelling.

Has anyone else had these symtems. I need some help trying to figure it all out. I am having alot of trouble sticking to this diet because I travel all the time for work so alot of the times I eat while I drive.

Thank you and sorry if it sounds like I am whinning.

Don't ever apologize for whining. We're here to help each other in any way that we can. Feel free to PM me if you want to vent one-on-one.

Loey

Marie1976 Enthusiast

I am the worst dieter in the world. I am absolutely crushed by having to admit that I have to change my life and my habits. I LOVE being low maintenance. I know that I will feel better by receiving this diagnosis (it started with Dermatitis Herpetiformis (horrible skin rash) and has led to me needing to lead a gluten-free life, so I know that I will get some relief... but I just can't imagine how this is going to work. You all seem so matter-of-fact, and I am just downright annoyed and sad. Did anyone else just feel mad and sad and exhausted by this whole thing?

I'm right there with you. Gives me a headache just thinking about how inconvenient this is going to be.

I'm still eating gluten because I'm getting an endoscopy next month to get the "official" diagnosis; I REALLY don't want to restrict my diet unless I have to. (I am a vegan which already requires a lot of label reading, and avoiding most restaurants and being a general nuisance to my relatives, ha ha.)

I keep telling myself I should feel lucky that the treatment is "just" going gluten free and that it's not cancer or some equally horrible thing, but I can't help feeling bitter and sorry for myself. I feel like I've had enough bad stuff in my life (haven't we all), and I don't want to deal with this.

BUT -- I think I'll be glad for an official diagnosis so I'll at least know what's wrong with me and I can actually DO something about it.

Hang in there!

healinginprogress Enthusiast

I keep telling myself I should feel lucky that the treatment is "just" going gluten free and that it's not cancer or some equally horrible thing, but I can't help feeling bitter and sorry for myself. I feel like I've had enough bad stuff in my life (haven't we all), and I don't want to deal with this.

AGREED!!!!

catsmeow Contributor

I know just how you feel. I've been at this for a year in April and I am still angry. My family is tired of me calling them "tribe Wheaterites" in an joking/antagonistic manner. I thought it was time for me to particicipate in the support forum because I need it really bad. Your post and the replies made me cry cry cry.....I feel like I found my tribe, "the Gluten-free-darites" I'm so tired of being high maintenance!!!

This is part of an email I wrote to my sister on Sunday. Sunday, I was at my lowest point so far in this journey. She has Reumatoid Arthritis, so she understands, and we vent to each other.

By the way, I have a wheat allergy. It's hard to find other wheat allergy peeps, am I welcome here?

To my sister on Sunday:

I am very depressed today about my wheat allergy. I got glutened all week by Splenda. It use to be a safe food, but I think they must have changed their maltodextrin supplier to one that is not in the U.S, because the bag I opened last week has been breaking me out in hives and migraines all week. I thought it was the coffee, but I eliminated splenda first, just this morning and did not break out. So, raw sugar it is for me. Maltodextrin made outside the U.S. is not safe.

Then I had to be a pain in the butt at church with communion. They have you dip the bread into a large goblet of grape juice. It did not occur to them that the rice cracker dipped in the grape juice full of wheat crumbs was a problem. But they were so nice and rinsed out the cup and put fresh juice in it for me......while 20 people waiting in line.....once again, I was a pain in the butt.

Then I went to my weight loss meeting, where they were all sampling this wheat bread. but, Jessica's fiance' made them take the bread into the kitchen to try. He's a chef and somehow knew that I would get sick from it in the air. I didn't have to say anything. That was nice...however, I was a pain in the butt.

Then we went to a neighbor's BBQ. I had to ask about every single ingredient in every dish before I found something to eat.....The host had to ask people things like "what brand of mayo did you use in the potato salad?" Did you make the Spanish rice from scratch or did you use a box mix?"

Again....I was a pain in the butt.

And I still got sick. It happened at the BBQ with all the cakes, wheat products, beer and wine in the room. I get sick from wheat in the air. I have a migraine.

I need a support group. My family is soooo sick of hearing about the wheat allergy, and I'm tired of being a pain in the butt.

I'm angry about this wheat allergy. I'm so sensitive now that I can't even be in a room with wheat without breaking out in hives.

I learned that the reason I cannot handle fragrances is because they have wheat in them. The manufacturers do not have to declare it. I saw that on "The doctors", believe it or not. They said if you have a wheat allergy and can handle certain scents (me) chances are that they are wheat free, but most have wheat ingredients and therefore make me sick!!!!

Sigh........

I hope I can be a part of your group as I am still working on coping...........

love2travel Mentor

I know just how you feel. I've been at this for a year in April and I am still angry. My family is tired of me calling them "tribe Wheaterites" in an joking/antagonistic manner. I thought it was time for me to particicipate in the support forum because I need it really bad. Your post and the replies made me cry cry cry.....I feel like I found my tribe, "the Gluten-free-darites"

This is part of an email I wrote to my sister on Sunday. Sunday, I was at my lowest point so far in this journey. She has Reumatoid Arthritis, so she understands, and we vent to each other.

By the way, I have a wheat allergy. It's hard to find other wheat allergy peeps, am I welcome here?

To my sister on Sunday:

I am very depressed today about my wheat allergy. I got glutened all week by Splenda. It use to be a safe food, but I think they must have changed their maltodextrin supplier to one that is not in the U.S, because the bag I opened last week has been breaking me out in hives and migraines all week. I thought it was the coffee, but I eliminated splenda first, just this morning and did not break out. So, raw sugar it is for me. Maltodextrin made outside the U.S. is not safe.

Then I had to be a pain in the ass at church with communion. They have you dip the bread into a large goblet of grape juice. It did not occur to them that the rice cracker dipped in the grape juice full of wheat crumbs was a problem. But they were so nice and rinsed out the cup and put fresh juice in it for me......while 20 people waiting in line.....once again, I was a pain in the ass.

Then I went to my weight loss meeting, where they were all sampling this wheat bread. but, Jessica's fiance' made them take the bread into the kitchen to try. He's a chef and somehow knew that I would get sick from it in the air. I didn't have to say anything. That was nice...however, I was a pain in the ass.

Then we went to a neighbor's BBQ. I had to ask about every single ingredient in every dish before I found something to eat.....The host had to ask people things like "what brand of mayo did you use in the potato salad?" Did you make the Spanish rice from scratch or did you use a box mix?"

Again....I was a pain in the ass.

And I still got sick. It happened at the BBQ with all the cakes, wheat products, beer and wine in the room. I get sick from wheat in the air. I have a migraine.

I need a support group. My family is soooo sick of hearing about the wheat allergy, and I'm tired of being a pain in the ass.

I'm angry about this wheat allergy. I'm so sensitive now that I can't even be in a room with wheat without breaking out in hives.

I learned that the reason I cannot handle fragrances is because they have wheat in them. The manufacturers do not have to declare it. I saw that on "The doctors", believe it or not. They said if you have a wheat allergy and can handle certain scents (me) chances are that they are wheat free, but most have wheat ingredients and therefor make me sick!!!!

Sigh........

I hope I can be a part of your group as I am still working on coping...........

Oh, I am SO sorry for all you are going through. At first it seems impossible and overwhelming and you definitely do go through a grieving phase. Emotions run high (speaking from experience). We understand what you are going through - we really do. Last week I had some corn tortilla chips after checking the ingredients and website. However, today I received an email from them in response to my email last week telling me that they apologize but the product DOES now contain gluten. I was being SO stringent! Thank God I do not get GI issues when glutened. However, as a silent celiac I have no clue when it happens which is very scary.

Unfortunately it can be far easier to just stay home and avoid potlucks, BBQs, restaurants and so on. But then you also have to have to live in order to have normalcy. At our church there are three of us with Celiac who go to the front to get our rice crackers for communion before the bread is passed around in the congregation so I am happy they are aware. BUT there are no gluten-free friendly restaurants in town at all.

I can relate to grilling people on ingredients they put into their food before I feel safe to eat it. I feel like a dork for having to do it but I have become more assertive! ;) It seems as though more people "get" other diseases such as diabetes.

So, I have been doing things that I enjoy, such as continuing to cook and eat very well at home. I'm actually having fun experimenting with all sorts of flour blends for yummy coconut cakes, cookies, pies, brownies, breads, English muffins, tortillas... Sure, some things SUCK but some actually taste remarkably good. Sometimes you need a treat. Unfortunately when I hear "treat" I think FOOD.

Keep hanging in there. Be kind to yourself! :) And WELCOME! You will find a lot of wisdom here. :D And don't forget - we UNDERSTAND.

ciavyn Contributor

It's interesting -- I saw your title, and I thought, oh, come on! It's not that bad. But then I reviewed the last year and a half that I've been gluten free, and I remember the days when I cried because I didn't know what to order at the restaurant I was driving to in order to meet some friends. And when I wasn't sure what to make for dinner because I'd tired of my tiny repertoire of food choices. And when I got (get) sick and feel like crap for three weeks in a row, with a few days of torturing relief, all because I wasn't careful -- or maybe I was, and it still screwed me up. All this to say: I promise, it gets better. It seems impossible now. Grief is a normal process of giving something up. It's easy for me to sound blase about it, because...well, I feel great most of the time, so it's worth it. But when you are still new, and aren't always feeling fabulous (I felt like crap my first six months and wondered what the point of all of this was), it's hard to see the light at the end of the proverbial tunnel. You have a great support group here, and look to those around you who struggle with similar issues -- perhaps not food issues, but others in your life struggle with illness. My BF has clinical depression. Another friend has ongoing mental and physical issues. I have several gluten-free folks I know now. And you'll find your recipes that rock your world, the restaurants who will be thrilled to be careful just for you, and the people in your life who will want to cook for you (carefully...very carefully) because they love you. Don't give up hope -- it's so worth it on the backside. :)

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    • knitty kitty
      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards.  The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.   Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.  
    • TheDHhurts
      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
    • wellthatsfun
      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent. the worst i'd get was occasionally bad stools and pitting of the nails/brittle hair since early childhood - and i was diagnosed with low iron and vitamin d which checks out due to easy bruising and such. but those symptoms have remained. maybe i'm jumping the gun, sure. i know it can take years to fully heal. but being over half a year in, i feel that i should be, y'know, healing. i'm nearly at my wits end and wondering if i should have a piece of bread or something to see how i go - to see if i possibly have refractory? my mental health is declining as i feel myself wanting to bang my head against a damn wall out of frustration every day. cravings haven't gotten better. look, i love the stuff i still can have, like salads and such. OH! i haven't lost any weight, which is mind boggling considering i eat very healthily now! i've always been on the chubbier side which is atypical of coeliac. i just don't know what's going on with me. i try to remain hopeful but i'm just so sad all the time. thanks for reading  
    • trents
      @Charlie1946There is a PM (Personal Message) tool built into the forum website that allows you to send a private message to other forum users. Just hover over their name with your mouse cursor and the menu containing that tool will pop up. This is useful if you want to communicate with an individual without everyone else involved in the thread seeing it.  Are you realizing that in my PPI taper down recommendations in an earlier post above, I was responding not to your posts but to @Caligirl57? If you must use a PPI, I certainly would advise taking the lowest dose that is effective for you.  
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