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sandsurfgirl

Not Doing Well Emotionally

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Wow Bunny! That was very powerful.

I agree. I actually did that with my boyfriend, with pens, and it definitely helps people who've never been ill understand the real, physical limitations we have to work with.

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I'm feeling better physically. I do have a cold right now, and I'm fatigued. Waiting on thyroid and vitamin, iron levels etc. to see if one of those is the culprit.

But, I am struggling emotionally. I know it's a grieving process, but it's very hard at times. The sadness over all the stuff I've lost in life because of celiac is overwhelming at times.

The uncertainty of the future, not knowing how much healing I will get and if I will ever feel "normal" and healthy is overwhelming too.

I want to do this, that and the other, but when I make plans I just don't know what I'll feel like that day, so I can't count on anything.

I'm going through the same thing. i've been totally overwhelmed the last few weeks as i'm just now realizing the effect having celiac my whole life and not knowing it has had on me, how i've kind of been held back in life, dealing with bouts of depression and emotional meltdowns my whole life. all these memories come back to me from my past and i can see how having celiac disease was playing a part and there was never any help or understanding for me. It's so frustrating, i'm SO ANGRY that gluten is even LEGAL! How can something that poisins you be okay to have added into almost everything you eat? How can the medical field be so clueless?I explained what I've been learning lately about celiac disease to a friend who is a doctor and she still does'nt get it, is still talking about me seeing an allergist. i just want to scream. I went through 3 years thinking I had a 'wheat allergy', and sure i avoided it, but was still getting glutened constantly.My symptoms (including really bad DH on my scalp and face) never got better. I'm trying to focus on the possibility of getting better, but it is hard to lift up my spirits the way i'm feeling now that i'm really trying to go 100% gluten free over the last month. lots of brain fog and irritability and feeling dragged down; The stress of family members thinking i am overreacting and they don't really take it seriously and see the huge impact that this has had on me. I am new to the forum and am so thankful for it, i've learned so much just reading, and i want to paerticipate more, I've tried posting before and just been overwhelmed by tears and not been able to finish what i was typing, and just gave up. It's exiting to read that people get better when they can get thier lifestyle 100% gluten-free and think I could get better, but it's also scary; like what if this does'nt work? i've already been through so much.

I've also been like you and defered to other people, but am realizing that if i want to get better, and i mean REALLY want to get better, this does have to be about me,and it does'nt mean i'm being selfish. I'm just now getting it that this is about my survival, i've been taking myself down my whole life, and at 43 I feel like I have to start life all over.

I'm just now feeling up to getting out and riding my bike and exercising, and once i can force myself to get ready I do a lot better that I anticipated; I've gone through feeling dizzy and really weak before, and not been able to handle. hang in there, and i'll try to do the same, thanks for all your posts!

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I also find myself getting very angry and depressed. I have been gluten free for 3 months now but I am very emotional. I get so upset when I see that no one is cleaning up after themselves knowing what it could do to me. I feel like I have become a nag.

I was wondering if anyone has been put on medication to help control their emotions. I am thinking I should go to the doctor and see if he would give me something to help me relax and not be a nag.

Any advice anyone?

And btw, I want to thank all of you for everything you do post. I have learned so much!

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Also be aware that you have not absorbded what yor body needs for a long time. I give myself (on doctor's orders) a B-12 shot once a month. It started out once a week. I also take prescription strength vitamins and lots of iron.

You WILL get better. The diet will become second nature, and really most food doesn't contain gluten. Eat a lot of fresh vegetables and fruit and grilled meat. If you feel depressed, do something you like. Lie on the couch and listen to music. Read a trashy novel. Watch soap operas. Whatever. You WILL get better.

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I haven't been praying enough about it either, which then makes me feel like a failure. But I know that's dumb because God doesn't see me that way.

I'm going to make a list of prayers and tape them on the bathroom mirror so I don't forget. I get caught up in my pity party, or I've been escaping by reading novels, watching movies or going online, which is helpful, but not when it gets in the way of doing things that are going to help me past this.

I am so grateful for all of you who can understand and you "get it." It's nice to come here and be able to just say "Hey I'm broken right now" and have people who come alongside and say "Yeah me too." or "I was broken and it does get better."

I have a very supportive husband, but I know it's hard on him to have to hold us all up right now. I told him yesterday that he needs to think of me as the damsel in distress. I'm in that tower and I need to be rescued. Usually I'm the fighter, the warrior, but not right now. He's up the challenge, but he's tired too.

I'm reading your posts and thinking, Oh, that is SO me! Except the parts about the young children, since mine are grown; however, I had my first real bout with depression when my first was born. It eventually went away on it's own, but then several years later I got depressed again, ended up on Prozac....spent a lot of time in bed, with my kids coming in and out of the bedroom and saying things like, "Mommy, are you sick?" and "Mommy, why can't you get up and play with us?" It was horrible, and I felt so guilty, and it still hurts when I remember those times, even though their 24 and 26 now, and are totally understanding. And it looks like both of them may be at least gluten-intolerant, which they're at least giving some thought to.

But as for all the other stuff you've talked about, wanting to do so much, and just feel good again, and be able to really live--oh yeah, that's exactly how I've been feeling since I really started getting sick about 10 years ago! Just last Mon. I was trying to print shipping labels (we work from home, thank God--sick as I am, I could never hold down what most people would call a "real job"). And I couldn't think straight, like I'd never had even one semi-intelligent brain cell in my head, and kept messing things up, and I was so exhausted....I had a little meltdown right there and started sobbing that this was no life at all, that it would just be so much better if God would just take me Home if I'm not going to get better....and of course hub just held me and told me how much he and my kids and grandbaby need me! :rolleyes: Sort of a cross between melodramatic and trite, I know, but--that's seriously how I felt at that moment. It's like that old saying about being sick and tired of being sick and tired....I've so often felt, if there's no quality of life, why bother? I've only been g.f. for....let's see, it'll be 3 weeks on Thurs., and already there's been improvement, just since that awful Mon. last week, that I used to only dream about. Still, I've been reading things here--not just what you've been saying happening to you, but others as well--where people are talking about having been g.f. many months, and are still having some tough health issues. So, I'm trying to prepare myself for that, rather than have some Pollyanna-type idea in my head that from now on it'll all be a walk in the park. I know that I'm far from being out of the woods, so I'm so glad I've found this place and all of you! You're right, no one else "gets it." It's why I love coming here already, because people here do get it, and are so supportive.

Good for you, sticking prayers up on your mirror and stuff, to remind yourself! I used to do things like that, but haven't in awhile, so thanks for the reminder! And having a husband who's supportive...we're both blessed in that respect! And you're right, you are NOT a failure, nor does God see you that way; you're a person who's been very sick and is now recovering. I agree with what the others were telling you about not giving up, and just let some things go. It really bugs me, seeing dirt on the floor, the furniture thick with dust, and the sink full of dirty dishes, with a dishwasher still waiting to be unloaded. But then I just have to shrug and say "I'm too tired right now. So what--it'll be there tomorrow! And maybe tomorrow I'll feel up to do something. And maybe not. And if not...oh well. I need REST." Or I look at the dirt that's been tracked in and tell myself, "Wellll.....you could always make a new rule of no shoes in the house." Then like a child who's been given an awful alternative by a parent, my mind shrieks, "NOOOOOO! I HATE taking off my shoes before coming in, and I would hate making other people do it!" (Unless of course, they're caked with mud. Hey, there are exceptions to every rule!) Then suddenly I don't mind the dirt as much, as I decide once again I'd rather vacuum more often than take my shoes off.

I know it's a weird attitude, but it works! :lol: So just find what works for you, and hang in there!

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Hi surfgirl. I have a story I think may help you cope with the dragging recovery. Some time ago a friend of mine sent me this story, and she has her own long history of health problems. She beat breast cancer with a double mastectomy 20 years ago, and now has MS. I can't copy paste, so here's a link to the spoon story: http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Now when we try to get together, if either of us is ill or out of spoons, that's all we have to say and we understand. My mother too. If any one of us just says, "Sorry, I'm out of spoons." Then we all get it and that's really an awesome thing.

I love this! Definitely a keeper.

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Oh my gosh you guys, I am so touched by all of your help and kind words. I have tears in my eyes right now.

The spoons story is exactly how it feels isn't it? She nailed it. That was inspired.

Thank you from the bottom of my heart. I thought so much about what all of you have said and today was such a better day, not because my body was feeling perfect. It wasn't. But because I listened to what you said and I decided to be how I am right now, a sick person, and do what I can.

My kids watched TV this morning while I was very slow in getting ready and I just let it be. We had a homeschool park day that I hadn't been to before and I really wanted to go so I just took my time, made sure we all had food to take with us, and got there when I got there. It was so great to just let go and not worry about what I'm doing or not doing.

I had an awful pain in my right side as we were leaving. I think it was a gas pain. And I just breathed through it and kept on driving. I wanted to panic and head home, but I figured that it's just a symptom like my myriad other symptoms and it will still be there or go away whether I'm at home or with a big group of fun people that I want to hang out with.

We do have to count ourselves blessed that unlike diseases like lupus, we can get more spoons as we heal from this.

As much as I hate having celiac, I am blessed to have met so many wonderful people on this board, online and a few in real life too. Thank you so much. Hugs to all of you!

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Funny, but from all of your incredibly insightful observations on other posts I was sure you were someone who wouldn't suffer the ups and downs so much. Thanks for getting this whole discussion rolling. It has helped me tremendously today. I avoided reading the spoons at first because I didn't think I could handle it today. Turns out to be exactly what I needed. It sure helps to be around a group of people who understand.

Thanks,

CS

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sandsurfgirl,

I've been feeling your emotional pain. I have my good and bad day. Fortunately the good days are not outnumbering the bad. Reading the spoon theory gave me new insight on how we survive what we are going through.

I ran across a quote today that I want to share as it sums up what we do for each other through this forum.

"We're all connected by the inevitability of adversity and universality of suffering. The isolation and loneliness of struggle are illusions. If we band together, tethering ourselves to family, friends, and fellow survivors, we bolster our chances of overcoming."

--Ben Sherwood, from his book The Survivors Club: The Secrets and Science That Could Save Your Life

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You know SSG, when I recently started feeling better, I almost didn't beleive it. I had felt better for a day or two in the past, and then got bad again and on and on. So when I started feeling better now, I didn't even want to get happy about it or excited since it had always been such a short lived thing before. I kept waiting for day 2, when I Would crash again, and then day 3, when it would of course be back to the pits, and then day 4, that was really stretching it, feeling good for 4 days in a row. And then I made it to a whole week, and then 2 weeks, and darn it, I still felt pretty good!

I've even started eating dairy again, which is quite amazing to me. It used to be if I ate any dairy, I couldn't get to sleep for 3 days. As in no sleep at all. And then I 'd start to be able to sleep a little more each day. 2 hours, 3 hours, 5 hours etc. Now I can eat some dairy and sleep the same day! I wouldn't say I sleep a "normal" schedule yet, but hey I sleep! And what the hay, maybe I'll get there too.

So, I guess I am saying, keep at it, cause you never know when things will really turn around. And be kind to yourself along the way, cause you are worthwhile to the guy that designed you. :-)

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You know SSG, when I recently started feeling better, I almost didn't beleive it. I had felt better for a day or two in the past, and then got bad again and on and on. So when I started feeling better now, I didn't even want to get happy about it or excited since it had always been such a short lived thing before. I kept waiting for day 2, when I Would crash again, and then day 3, when it would of course be back to the pits, and then day 4, that was really stretching it, feeling good for 4 days in a row. And then I made it to a whole week, and then 2 weeks, and darn it, I still felt pretty good!

I've even started eating dairy again, which is quite amazing to me. It used to be if I ate any dairy, I couldn't get to sleep for 3 days. As in no sleep at all. And then I 'd start to be able to sleep a little more each day. 2 hours, 3 hours, 5 hours etc. Now I can eat some dairy and sleep the same day! I wouldn't say I sleep a "normal" schedule yet, but hey I sleep! And what the hay, maybe I'll get there too.

So, I guess I am saying, keep at it, cause you never know when things will really turn around. And be kind to yourself along the way, cause you are worthwhile to the guy that designed you. :-)

This is great to hear!

CS

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As much as I hate having celiac, I am blessed to have met so many wonderful people on this board, online and a few in real life too. Thank you so much. Hugs to all of you!

You will find that celiac is really a blessing in disguise because it forces you to make changes you would have not otherwise done.

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sandsurfgirl,

I've been feeling your emotional pain. I have my good and bad day. Fortunately the good days are not outnumbering the bad. Reading the spoon theory gave me new insight on how we survive what we are going through.

I ran across a quote today that I want to share as it sums up what we do for each other through this forum.

"We're all connected by the inevitability of adversity and universality of suffering. The isolation and loneliness of struggle are illusions. If we band together, tethering ourselves to family, friends, and fellow survivors, we bolster our chances of overcoming."

--Ben Sherwood, from his book The Survivors Club: The Secrets and Science That Could Save Your Life

Wow that is profound and beautiful. So true.

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You will find that celiac is really a blessing in disguise because it forces you to make changes you would have not otherwise done.

I agree 100% I was just talking about that this morning with some of my co-workers. I always tell them that we need to think positively. I have always tried to use myself as an example, but it was hard to get people to really understand how important thinking positive can be. Since I was diagnosed I can now use myself even more. When the dr. first told me about the blood test results, I thought it was a death sentence. I had a VERY VERY hard time dealing with it. Then the more research I did here and the better I started feeling, the more I realized like you that Celiac is actually a blessing in disguise for me. I now eat healthier, I have lost some much needed weight, and I am slowly gaining my energy back. Although it took me almost 2 weeks to come to terms with this disease, I now look at it completely differently.

Thank You for posting this Sandsurfgirl, It has really been helpful!!

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Thankyou everyone for verbalising how I feel - I thought it was just me going nuts!! :unsure:

I have major problems with my emotions, poor coping and lack of energy and not wanting to exercise. :(

I feel so relieved and will watch how I use my spoons up each day!!

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It's good knowing other people are having ups and downs too. Sometimes I feel great and am thankful that my problems are such that a diet change can cure me and no medicine or surgery is required but other days I'll be doing something simple like watching the Travel Channel and seeing all the great food I'll never get to try and get really down. It's also hard because while my friends and family are very supportive they think problem solved, now let's get on with life and don't understand the healing time and grieving time involved. To my husband his sister saying "oh sorry, I forgot you can't eat this" is her being forgetful. To me it's a taunt!

I just try to focus on how it could be so much worse. I try to think of my best friend, she's in wheelchair due to spina bifida. When I think of all the things I'm able to do that she never can a silly thing like not being able to eat a croissant seems trivial. I guess I just have to put it in perspective for myself because I'm really good at throwing pity parties!

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I just try to focus on how it could be so much worse.

This never works for me. I need to figure out how to make it better. How can I cook that food that I want? How can I make my shopping easier? How can I navigate the potluck today?

For me it's about keeping control of my life.

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Wow! Thank you Heather for sharing your feelings. And thanks to all for posting replies. It brings me such comfort to see that I'm not alone in my depression. You all are so wonderful for being so supportive.

Heather, you have responded to a couple of my posts and have always made me feel better with your posts. I hope it helps you feel a little better to know that you have made me feel better on more than one occasion.

I just got home from my psychologist appointment and was feeling a little down. I have OCD and it all revolves around being sick and germs. When I was diagnosed with Celiac I was so relieved because I finally had a diagnosis and could feel better. Now I've also fallen into a depression because life seems so impossible. Part of my OCD has to do with perfectionism. Being Celiac has made the OCD a lot worse, because I'm finding it so difficult to be "perfect" on the diet. Just knowing there are others out there who are struggling with the diet and their feelings about it, helps me so much.

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Wow! Thank you Heather for sharing your feelings. And thanks to all for posting replies. It brings me such comfort to see that I'm not alone in my depression. You all are so wonderful for being so supportive.

Heather, you have responded to a couple of my posts and have always made me feel better with your posts. I hope it helps you feel a little better to know that you have made me feel better on more than one occasion.

I just got home from my psychologist appointment and was feeling a little down. I have OCD and it all revolves around being sick and germs. When I was diagnosed with Celiac I was so relieved because I finally had a diagnosis and could feel better. Now I've also fallen into a depression because life seems so impossible. Part of my OCD has to do with perfectionism. Being Celiac has made the OCD a lot worse, because I'm finding it so difficult to be "perfect" on the diet. Just knowing there are others out there who are struggling with the diet and their feelings about it, helps me so much.

Hey- look on the bright side, now you have a really good reason to be ocd about something, and noone can give you a hard time about it! Also, you've had practice being routinely obsessive, and you really kind of need to be with this disease, so you're ahead of the game!

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This never works for me. I need to figure out how to make it better. How can I cook that food that I want? How can I make my shopping easier? How can I navigate the potluck today?

For me it's about keeping control of my life.

I agree with that!! I try not to say "No" to doing things, I just try to find the ways that I can do them so that I don't feel left out. I just tried corn pasta on Monday and LOVED it, I was so worried that I would never get to have pasta again, now I know I can.

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Sandsurfgirl -

First of all - big hugs from over here - and I think I can say that I know what you are going through.

I have been battling with this - getting diagnosed, getting deglutened, etc - for probably 15 years when I look back? Mood swings, etc.

I finally got to the point a while back and got some anti-anxiety/ depressants and decided that, you know, if I need to take these for the rest of my life because I have an emotional problem - or because of celiac or whatever, then that is fine. I decided I needed to feel better right now, I had had it with feeling off. Funny thing was, that about two weeks after that decision, and starting my meds, my diagnosis came in for celiac.

So, I would say, if you are down that much - maybe do talk to someone. For me, meds helped like you wouldn't believe.... and I also take vitamin D/ B/ magnesium and I self-administer B12.

I figure maybe at one point in the future I might be able to go off the mood drugs, but for now, they are my crutch. And they've gotten me to the point of being able to think ahead and plan. That is an amazing amazing step to be taking.

Whatever path you take - know you are on the right one and that whatever you do will lead to better health. And it will be so.. :-)

I'm feeling better physically. I do have a cold right now, and I'm fatigued. Waiting on thyroid and vitamin, iron levels etc. to see if one of those is the culprit.

But, I am struggling emotionally. I know it's a grieving process, but it's very hard at times. The sadness over all the stuff I've lost in life because of celiac is overwhelming at times.

The uncertainty of the future, not knowing how much healing I will get and if I will ever feel "normal" and healthy is overwhelming too.

I want to do this, that and the other, but when I make plans I just don't know what I'll feel like that day, so I can't count on anything.

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Well I can relate somewhat since I had an almost break down last night. It is the first "I'm feeling sorry for myself" that I have had in over a year. I almost started crying. After getting the last of my deficiencies under control I've been on top of the moon since around Aug. I have been feeling bad since the begining of Jan. and can't figure it out. According to blood work my IgG antigliadin was still positive. Everything else looked wonderful. It is suspected that I'm getting contaminated at home (I have a shared house). I rechecked everthing and all was still alright. The only thing now it could be is from hubby and kids. I also had a gallbladder work up and the doc does not think it is is, but I'm still keeping it in mind as a possibility. My symptoms right now are not consistent with cross contamination. No constipation, rather the opposite and I have a nagging pulling sensation in my RUQ. I think the stress of not knowing what is bothering me is getting to me. I am also sad that I have not exercised in almost two weeks. I was doing really good and feel like I failed somehow. I got upset and told my husband If I could choose to be another way I would, but I can't. I told him I didn't want to punnish them by dening things they could eat, but the fact remains that I have to live in this house and have the right to not feel bad. He tries to understand the gluten thing and does alright, but on an emotional level he understands my frustration. He had a surgery go very wrong about 5 years ago that has left him with chronic problems. He told me that we would have to get even more careful and would "police" the kids better. I'm feeling better about it today. I go for a repeat EGD on Tuesday, so we'll see. I'm also suspecting I may need my thyroid meds adjusted. The moodiness, fatigue, and lack of weight loss despite exercising has got me wondering if I'm hypo again. Gotta love the ups and downs but everyday I learn a little something from it. I am glad I am the way I am because like others have said it has forced me to step back and evaulate what I eat and how I want to spend my time. I still laugh at my coworkers, because some of them still say my food is weird. I eat so much healthier than them and their fast food every night. Another good thing that has come of this is I have people coming to me for advice. Our receptionest's husband was just diagnosed after 30+ years of being miserable (he is in his 60's). I've been sharing info and recipes. I also had a lady in another department email me with questions because she was undergoing testing. People are talking and becoming more aware and my colleges are telling people to come talk to me about it.

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I'm feeling better physically. I do have a cold right now, and I'm fatigued. Waiting on thyroid and vitamin, iron levels etc. to see if one of those is the culprit.

But, I am struggling emotionally. I know it's a grieving process, but it's very hard at times. The sadness over all the stuff I've lost in life because of celiac is overwhelming at times.

The uncertainty of the future, not knowing how much healing I will get and if I will ever feel "normal" and healthy is overwhelming too.

I want to do this, that and the other, but when I make plans I just don't know what I'll feel like that day, so I can't count on anything.

Sandsurfgirl. I posted this on another thread. If it makes you feel any better, emotionally I took a nose dive about 3 months after going gluten free. Not sure if it is connected or not, but I can't help think it is. I was very lucky in that my awful physical symptoms went away instantly. But for some reason, I hit one of my mental-worsts three months after going gluten free.

Coincidence? Dunno. But you're not alone. We'll get through this. People who don't have to make daily sacrifices for health don't understand what a huge sacrifice it is...such a tamper on our freedom for many things. Going out to eat, hanging with friends, going on an airplane last minute for a funeral (not time to prepare a food-kit...being afraid there will be nothing available to eat), dinner/professional awkwardness when invited to eat, relationship awkwardness, family awkwardness, appearing 'paranoid' or picky to other people...just...knowing that there might not be something available to eat unless you plan 19039903 hours in advance. <_<

So I think you have a right to be depressed. I'm not one for pretending everything is hunky dory when it isn't.

It just is what it is though...hang in there...at least we're dealing with this today, when there's gluten free awareness...10 years ago...it would have been 10x worse I imagine.

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"at least we're dealing with this today, when there's gluten free awareness...10 years ago...it would have been 10x worse I imagine. "

Oh, this is SO true. Even just eight years ago things were way different. Awareness was not high. Bread from the stores was atrocious. Cardboard, inedible... Nobody knew what celiac sprue was. the word "gluten" drew blank stares. People often didn't understand that FLOUR came from WHEAT!!

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"at least we're dealing with this today, when there's gluten free awareness...10 years ago...it would have been 10x worse I imagine. "

Oh, this is SO true. Even just eight years ago things were way different. Awareness was not high. Bread from the stores was atrocious. Cardboard, inedible... Nobody knew what celiac sprue was. the word "gluten" drew blank stares. People often didn't understand that FLOUR came from WHEAT!!

When we saw our CPA last week, for some reason she and I started talking about nutrition, and how good nutrition should be taught in grade-school. And I added that I thought the evils of gluten should be taught in school, as well. :lol: She then related the story someone had told her about how their kindergartener was recently diagnosed celiac. Of course the boy's school and teacher were notified, so he didn't inadvertently eat any gluten-filled treats. So one day his teacher brought cookies or some type of snack for the class, and happily informed the little boy that he could eat these, as they didn't contain any white flour! :o If I remember correctly I think it turned out that the boy knew better and didn't eat them, but still...... :unsure:

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