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    Do you have questions about celiac disease or the gluten-free diet?

ItchyMeredith

Denial Denial Denial- Long Rant

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Hi, Meredith, I'm so glad you eventually did get concrete evidence! And shame on your idiot doctor for not giving you the info in the first place!

3 things keep me from wondering, cheating, even thinking about gluten (and my DH was never officially diagnosed!)

1) The rash I had was so unbearable, I would do almost anything to keep it from coming back.It felt like I was allergic to my own skin. Avoiding gluten is relatively easy--it's free, and I can eat perfectly healthy, tasty food whenever I want.

2) I know without a doubt that my immune system will attack some other part of my body if I eat more gluten. So far it has attacked my thyroid, my skin, my intestines (but somehow I didn't realize I was having any tummy problems until they went away :blink: ), and was just starting to attack my joints when I stopped eating gluten.

Umm, pain and debilitation, or gluten? Gee, that's a no-brainer! I dislike the former a whole lot more than I like the latter!

3) I can bake a gluten-free version of ANYTHING that I used to like in my gluteny days, and there are geniuses out there who have come up with such amazing recipes, I don't feel like I'm missing out on anything except maybe convenience--but that is made up for by the fact that everything I make is homemade, fresh-baked, and free of preservatives and chemicals.

You name it--cakes, cookies, breads, muffins, pizza crust, pies, everything--I can bake it.

And the best part is, even though it all tastes as good or better than the gluteny original, the CRAVING part of it is gone--I can eat 2 or 3 homemade chocolate chip cookies--and feel satisfied! (I used to eat the whole batch in nothing flat.)

The hardest part is getting through those first few weeks of being COMPLETELY gluten-free. FOr those weeks, Fritos and Guittard dark chocolate chips were my best friends! (And I still lost 20 pounds--yay! It's not the carbs, it's the gluten!!!)

Hang in there--it gets SO much better!

If you're dying for a certain dish, post it, and a dozen experienced celiacs will rush to your aid with tried and true recipes!!!

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Hi Meredith!

It took me almost 3 years to accept that I needed to be gluten-free. I didn't have the major, immediate reactions so it was easy for me to eat gluten. It is a hard diet to follow and can be expensive ($7 for a loaf of gluten-free bread!!), but you need to know you are helping your body out in the long run. I'm getting better educated on the condition and am strictly adhering to my diet. It's tough, but it's becoming easier as I go along!

Good luck and keep reading these posts! This group is so helpful and informative!

Laura

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I didn't accept it for a while. I was angry and every time I was accidentally glutened, I found myself going on a gluten binge because "I was sick already anyhow." A silly attitude, but it was very tough for me in the beginning.

I have found now that the longer I go gluten-free, the easier it is. I actually used to leave the room and sometimes cry if co-workers had bagels out in the break room. Now I don't even crave them at all and can easily sit through business lunches without raving jealousy or self-pity.

The hardest part in my mind is the social aspect. I still get sick virtually every time I eat at a restaurant, no matter how careful I am to explain it.

Hang in there and stick with it. Treat yourself with something really, really yummy if you have a craving. Want pizza - go get Amy's rice crust. Want a juicy burger? Make yourself one with lettuce as a wrapper. And if you want brownies, there are delicious, delicious mixes and recipes for them.

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Just keep remembering it takes time.

The thing that made it hard for me personally, was when I told the people are me (my parents, boyfriend, family, best friends) they all just said, "well at least you know what it is"

And no one acted like it was a really huge deal in my life. It's one of the biggest things that could actually happen in my life! Sure, it's not CANCER or AIDS or LIFE THREATENING, but it is a lifelong condition that we have to make constant sacrifices for.

I still get in denial 4 months later. I don't know when it will finally go away, but no matter what anyone says - it's a big deal and it takes time.

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Hi, Meredith, I'm so glad you eventually did get concrete evidence! And shame on your idiot doctor for not giving you the info in the first place!

3 things keep me from wondering, cheating, even thinking about gluten (and my DH was never officially diagnosed!)

1) The rash I had was so unbearable, I would do almost anything to keep it from coming back.It felt like I was allergic to my own skin. Avoiding gluten is relatively easy--it's free, and I can eat perfectly healthy, tasty food whenever I want.

2) I know without a doubt that my immune system will attack some other part of my body if I eat more gluten. So far it has attacked my thyroid, my skin, my intestines (but somehow I didn't realize I was having any tummy problems until they went away :blink: ), and was just starting to attack my joints when I stopped eating gluten.

Umm, pain and debilitation, or gluten? Gee, that's a no-brainer! I dislike the former a whole lot more than I like the latter!

3) I can bake a gluten-free version of ANYTHING that I used to like in my gluteny days, and there are geniuses out there who have come up with such amazing recipes, I don't feel like I'm missing out on anything except maybe convenience--but that is made up for by the fact that everything I make is homemade, fresh-baked, and free of preservatives and chemicals.

You name it--cakes, cookies, breads, muffins, pizza crust, pies, everything--I can bake it.

And the best part is, even though it all tastes as good or better than the gluteny original, the CRAVING part of it is gone--I can eat 2 or 3 homemade chocolate chip cookies--and feel satisfied! (I used to eat the whole batch in nothing flat.)

The hardest part is getting through those first few weeks of being COMPLETELY gluten-free. FOr those weeks, Fritos and Guittard dark chocolate chips were my best friends! (And I still lost 20 pounds--yay! It's not the carbs, it's the gluten!!!)

Hang in there--it gets SO much better!

If you're dying for a certain dish, post it, and a dozen experienced celiacs will rush to your aid with tried and true recipes!!!

I also started having celiac symptoms in the form of a rash after the birth of my first child. The rash went away and I didnt have lots of symptoms for 23 years. I just was always amenic or borderline anemic. Finally got diagnosed two and a half years ago.(I was also finally having bowel symptoms). If you continue to eat gluten you can have other autoimmune diseases. My DSs girlfriend is a nurse and just had a young man die due to celiacs. He was homeless and would eat anything anyone gave him to eat(sandwiches and burgers are the usual). He got liver disease due to the celiacs and died. You can also get intesenal cancer. If you get cravings for things with gluten in them you can find recipes. I finally found a great pizza dough recipe(Jules Sheperd). Good luck with your quest.

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Have you contacted a local support group to find a doctor that they recommend? While they may not be able to 100% guide you through it, you may feel more comfortable with a more experienced Celiac doctor.

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Hi Meredith -

This isn't an easy transition, huh? The thing that has helped me the most is educating myself. I've read every book about celiac disease/GI that I could find, and I've spent hours reading through the archives on this, and other, websites. I didn't have any severe symptoms before figuring out that I needed to give up gluten, so I kept having that creepy intrusive thought process also. Now that I know what *can* happen if I continue to eat gluten, I'm more able to fend off the annoying little thoughts in my head.

The other thing that has helped me is to think about my family. First, I have two kids. I want to be here for them (healthy) as long as possible, and I want to set a good example for them about dealing with adversity and challenge in life. Both of my kids are gluten-free (and cf/sf for my dd) so they look to me to set the tone in dealing with the diet. Secondly, I look at my mother....who has several autoimmune diseases and is not in great shape. I don't want to be in that condition when I'm older. If eliminating gluten is what it takes to keep me from going down that same road, then so be it.

Good luck to you.....hang in there....I do think it gets easier with time.

Rhonda

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Meredith for me the diagnosis (via biopsy) was a relief and explained 45 years of misery and I'm mad as hell that the docs didn't figure it out long ago or do ANY diagnostic testing just told me I had "IBS" when I was 21 going by symptoms (after having problems since I was 12) and "eczema" when I was 16 and now I've researched and have seen photos I know it's dermatitis herpetiformis

In fact the endoscopy/colonoscopy wasn't even to look for specifically for Celiac , I'd had very low iron and a bowel screening showed blood in both upper and lower GI tracts so was referred to a gastro ( I had never been referred to one) When I explained my "IBS" symtpoms he said it wasn't IBS at all and was leaning towards Inflammatory Bowel Disease

So as well as looking for "nasties" he did biopsies and bingo Celiac Disease

It will get easier I promise. I'm over the moon because a shopping centre a little way from me has a cafe that I've been in to before. I was walking past it the other day and they had a sign out the front saying you could order gluten free Christmas cake and when I went in they now have a gluten free menu!!!!

So I ordered a Christmas cake...they are all home made. I would say the shop has changed hands and the owner has Celiac, I'll ask next time I'm there

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I can eat all the gluten I want, but it wont be right. I can make excuses for the medical profession and even blame them for not figuring out what was wrong before I did, but it doesn't change the diagnosis. I can stick to the diet, but it wont be easy.

This going gluten-free is a life changing choice, in more ways than one........

you will have to change your diet, thats no easy task.

The hardest part of it all......

You have to change your way of thinking!

You can no longer see a food item and say wow that looks good and buy it......

You can no longer walk by and smell that pizza and go buy it......

You can no longer try "just a bite" of that co-workers desert that smells so very good......

I wont lie to you this is no easy task but is it worth it? In my opinion YES! You will be healthy and be able to do almost anything you want..... except eat gluten.

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