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Just Diagnosed...need Advice/moral Support


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#31 coffngrl

 
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Posted 01 February 2014 - 02:16 PM

I must have coffee too!  :)

 

i love to make waffles for breakfast on the weekends and my kids love them.  What do you use?  A Gluten-Free baking mix or flour?  Any particular one you like?

Welcome Icelandgirl - so sorry you have to join us all, but once you get to feeling better you'll find it's not so bad after all!

Sunday morning pancakes was my tradition, and when I was diagnosed I was afraid I'd never enjoy them again. However, King Arthur makes a fabulous gluten-free pancake/waffle mix. It's really good. I couldn't even believe it was gluten free.

 

Not everyone on the forum agrees, but I consulted with a nutritionist on the advice of my gastroenterologist, and she was a world of help. There is so much confusing information out there on the internet about supplements and vitamins, and you can find so many frightening related disorders that you might be scared into thinking you have... but consulting with a real professional who is an expert in celiac is indispensable.

 

Best of luck!


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#32 icelandgirl

 
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Posted 01 February 2014 - 02:21 PM

Tka...thanks for all of the info! I'm headed to Walmart today to see if I can find those English muffins. They sound delish. I love bread. I was having eggs this morning and an English muffin would have been so good too.

This board has been so helpful already. I still don't feel good, but I do feel more hopeful.
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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#33 icelandgirl

 
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Posted 01 February 2014 - 02:27 PM

Welcome Icelandgirl - so sorry you have to join us all, but once you get to feeling better you'll find it's not so bad after all!
Sunday morning pancakes was my tradition, and when I was diagnosed I was afraid I'd never enjoy them again. However, King Arthur makes a fabulous gluten-free pancake/waffle mix. It's really good. I couldn't even believe it was gluten free.
 
Not everyone on the forum agrees, but I consulted with a nutritionist on the advice of my gastroenterologist, and she was a world of help. There is so much confusing

information out there on the internet about supplements and vitamins, and you can find so many frightening related disorders that you might be scared into thinking you have... but consulting with a real professional who is an expert in celiac is indispensable.
 
Best of luck!

Welcome Icelandgirl - so sorry you have to join us all, but once you get to feeling better you'll find it's not so bad after all!
Sunday morning pancakes was my tradition, and when I was diagnosed I was afraid I'd never enjoy them again. However, King Arthur makes a fabulous gluten-free pancake/waffle mix. It's really good. I couldn't even believe it was gluten free.
 
Not everyone on the forum agrees, but I consulted with a nutritionist on the advice of my gastroenterologist, and she was a world of help. There is so much confusing information out there on the internet about supplements and vitamins, and you can find so many frightening related disorders that you might be scared into thinking you have... but consulting with a real professional who is an expert in celiac is indispensable.
 
Best of luck!



Thanks for that info too! I love to bake and I'm not sure what to bake with. I grabbed a celiac cookbook from the library and every recipe calls for like 4 different flours. Crazy...especially because they are all expensive.

I have an appointment to see a nutritionist next week. I really hope it helps. I'm not even sure if my insurance covers it. When I called the person I spoke to said it was covered if it was medically necessary but she had never heard of celiac so couldn't say if it was? Really??

Anyway...good to know that it helped you. How long did it take for you to feel better?
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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#34 bartfull

 
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Posted 01 February 2014 - 02:32 PM

"Not everyone on the forum agrees, but I consulted with a nutritionist"

 

Coffngrl, it's not that we disagree, it's just that some of us wound up with nutritionists who were clueless about celiac. I WISH I could have found one like yours, but unfortunately the one I went to suggested wheat grass, and finally admitted she didn't know much about celiac. (I give her credit for admitting it.)

 

There are others here who found good ones though, and they helped a lot. I guess they're like doctors - some are educated about celiac and some are not. Like I said in another thread, if they don't keep up with continuing education they can be more of a hazzard than a help.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#35 HavaneseMom

 
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Posted 01 February 2014 - 02:52 PM

Hi Icelandgirl,
One of my favorite places to shop for gluten free food is Trader Joe's. Maybe you have one near you? I have to drive 2 1/2 hours to get there, but we make a fun day trip out of it and stock up on everything since their prices are so reasonable. Their frozen gluten free waffles are really good, and their gluten free Oreos are too. Their gluten free pizza had a little too much garlic for me, but I'm a plain eater. They have a five page list of gluten free products that they carry on their website. It could give you a idea of what types of gluten free foods are out there. (I tried to copy the link to the list here, but it didn't work)

My favorite book so far has been "Celiac Disease: A Hidden Epidemic by Peter H.R. Green M.D.

I am about 3 1/2 month gluten free and still don't feel 100% yet, but am feeling better everyday (most days). I have had excessive hunger like you we're saying you have. It was even worse for a while when I went gluten free. Mine would go away for a few days and then come back with a vengeance. I just started to experience days when I'm not hungry and it is a strange sensation after feeling starved for so long.
In my case, I am just trying to be patient and dealing with the ups and downs, and am hoping I will feel really great by the spring. It just seems like everyone has different symptoms and heals at different rates. A girl I work with was diagnosed with celiac disease and felt great after 2 weeks! Hopefully you will be one of those lucky ones too.
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Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#36 NoGlutenCooties

 
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Posted 01 February 2014 - 03:48 PM

Just a comment on the "cooking for one" issue.  I've been cooking for one for several years now and I know exactly what you mean.  One of my favorite go-to dishes when I really don't feel like cooking is stir-fry.  I use frozen veggies and pre-cooked sausage (Aidell's is awesome).  I just saute the veggies in a little olive oil, cut up the sausage and throw that in the same pan, add a little ginger and garlic and gluten-free soy sauce.  One pan and it's ready to eat in like 15 min.  And I found that I can throw in healthy veggies like broccoli and cauliflower that I don't really like but with the sausage and the soy sauce I hardly notice they're in there.  Very tasty and I hardly feel like I actually "cooked".


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#37 coffngrl

 
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Posted 01 February 2014 - 09:11 PM

Thanks for that info too! I love to bake and I'm not sure what to bake with. I grabbed a celiac cookbook from the library and every recipe calls for like 4 different flours. Crazy...especially because they are all expensive.

I have an appointment to see a nutritionist next week. I really hope it helps. I'm not even sure if my insurance covers it. When I called the person I spoke to said it was covered if it was medically necessary but she had never heard of celiac so couldn't say if it was? Really??
Anyway...good to know that it helped you. How long did it take for you to feel better?


Mine had me cut out all FODMAPs for a month (google it). Celiac wipes out the small intestine so lots of bad things get thru to your colon and cause problems. I felt better in a few weeks, and after six weeks I was feeling good enough to get over ambitious and ruin it all with bad gluten free beer...(see omission thread). Better now with one week on the elimination diet after three weeks of denial. Still healing I guess - am three months gluten-free.

Btw Nuts.com was recommended here and they are far cheaper than the grocery for your gluten-free flours. Be forewarned - they don't have gluten-free buckwheat. I ordered some then noticed it lacked the icon, called and was told it is not gluten-free. I had great success with their gluten-free yellow cake on my birthday! Back to nutritionist, check with your gastro to Rx the visit so the insurance deems it necessary, if possible. I got no hassles from my insurance.
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#38 icelandgirl

 
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Posted 02 February 2014 - 10:43 AM

Hi Icelandgirl,
One of my favorite places to shop for gluten free food is Trader Joe's. Maybe you have one near you? I have to drive 2 1/2 hours to get there, but we make a fun day trip out of it and stock up on everything since their prices are so reasonable. Their frozen gluten free waffles are really good, and their gluten free Oreos are too. Their gluten free pizza had a little too much garlic for me, but I'm a plain eater. They have a five page list of gluten free products that they carry on their website. It could give you a idea of what types of gluten free foods are out there. (I tried to copy the link to the list here, but it didn't work)
My favorite book so far has been "Celiac Disease: A Hidden Epidemic by Peter H.R. Green M.D.
I am about 3 1/2 month gluten free and still don't feel 100% yet, but am feeling better everyday (most days). I have had excessive hunger like you we're saying you have. It was even worse for a while when I went gluten free. Mine would go away for a few days and then come back with a vengeance. I just started to experience days when I'm not hungry and it is a strange sensation after feeling starved for so long.
In my case, I am just trying to be patient and dealing with the ups and downs, and am hoping I will feel really great by the spring. It just seems like everyone has different symptoms and heals at different rates. A girl I work with was diagnosed with celiac disease and felt great after 2 weeks! Hopefully you will be one of those lucky ones too.


I've heard great things about trader joes. We don't have one here but there's one in Boulder. May have to make the trip. I sure would like to see some positive results from all this.

I'm in the process of reading that exact book. The only thing I haven't liked so far is reading all of the cancers I seem to be at risk for because of this and the other autoimmune diseases. Kind of scares me.
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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#39 livinthelife

 
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Posted 02 February 2014 - 02:02 PM

I'm so sorry you're frustrated and you have my complete empathy. I remember when the doctor called me with the diagnosis, I felt stuck inside a whirlwind. On the one hand I knew what he was going to say, but hearing it from him was a different story. And the next day was Thanksgiving. I remember feeling so overwhelmed that I couldn't even figure out how to reorganize my kitchen and what all I had to replace. I now can see that I was overwhelmed from sheer exhaustion and no nutrition. This life changing diagnosis is HUGE. I felt almost like I grieved in a way. It wasn't fair, I was angry, all that stuff. 

 

Another thing was that I had to refocus my views on food. How many times have we all said, "Hey! Let's go somewhere fun to eat!" Well, it wasn't fun anymore; it was scary. I'm getting past all that now. Slow and steady wins the race! I either call ahead or eat before. Piece of cake! Going out to eat and not eating most of the time if for one second I don't feel safe was odd at first. Everyone else at the table feels, I think, worse than I do!! I keep saying, "It's OK!! It's OK!!! I promise!!! I don't like that anyway!!!" Lying works wonders!!! After a few meals I got over it. I carry food with me in a little make-up bag in my purse and laugh it off. I also know what you all mean about feeling so hungry all the time and then not eating at all. I force myself to eat sometimes and always feel better when I do.

 

I've had GI troubles since high school. I thought everyone either didn't go for a week and then then next week went twelve times a day for a week. I had no idea everyone didn't have cramps and headaches and on and on. It wasn't until two years ago, after thyroid troubles and two polyp filled colonoscopies that things took shape. One doctor even said, "You present classic celiac" but wouldn't do the test because he didn't think I had it. Took me time to get over that little fury. I'm not sure I am over it!

 

The single thing that keeps me going is how much better I feel when I eat correctly and how shi**y I feel when I don't. I've never been a big bread/pasta eater anyway but when I want that stuff, I WANT THAT STUFF!! I want it hot and slathered in butter. Ahhhhhhhhhhh!

 

My friends are also such a great support. Our dark humor gets me through! The sicker the better. The better I feel, the more incentive I have. I hope you feel better each and every single day. 

 

My favorite go-to breakfast is a plain greek yogurt with sliced almonds and fresh blackberries stirred in. SO good! And so healthy! This forum is amazing. I read it all the time. Keep us posted!


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#40 icelandgirl

 
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Posted 02 February 2014 - 06:44 PM

I'm so sorry you're frustrated and you have my complete empathy. I remember when the doctor called me with the diagnosis, I felt stuck inside a whirlwind. On the one hand I knew what he was going to say, but hearing it from him was a different story. And the next day was Thanksgiving. I remember feeling so overwhelmed that I couldn't even figure out how to reorganize my kitchen and what all I had to replace. I now can see that I was overwhelmed from sheer exhaustion and no nutrition. This life changing diagnosis is HUGE. I felt almost like I grieved in a way. It wasn't fair, I was angry, all that stuff. 

 

Another thing was that I had to refocus my views on food. How many times have we all said, "Hey! Let's go somewhere fun to eat!" Well, it wasn't fun anymore; it was scary. I'm getting past all that now. Slow and steady wins the race! I either call ahead or eat before. Piece of cake! Going out to eat and not eating most of the time if for one second I don't feel safe was odd at first. Everyone else at the table feels, I think, worse than I do!! I keep saying, "It's OK!! It's OK!!! I promise!!! I don't like that anyway!!!" Lying works wonders!!! After a few meals I got over it. I carry food with me in a little make-up bag in my purse and laugh it off. I also know what you all mean about feeling so hungry all the time and then not eating at all. I force myself to eat sometimes and always feel better when I do.

 

I've had GI troubles since high school. I thought everyone either didn't go for a week and then then next week went twelve times a day for a week. I had no idea everyone didn't have cramps and headaches and on and on. It wasn't until two years ago, after thyroid troubles and two polyp filled colonoscopies that things took shape. One doctor even said, "You present classic celiac" but wouldn't do the test because he didn't think I had it. Took me time to get over that little fury. I'm not sure I am over it!

 

The single thing that keeps me going is how much better I feel when I eat correctly and how shi**y I feel when I don't. I've never been a big bread/pasta eater anyway but when I want that stuff, I WANT THAT STUFF!! I want it hot and slathered in butter. Ahhhhhhhhhhh!

 

My friends are also such a great support. Our dark humor gets me through! The sicker the better. The better I feel, the more incentive I have. I hope you feel better each and every single day. 

 

My favorite go-to breakfast is a plain greek yogurt with sliced almonds and fresh blackberries stirred in. SO good! And so healthy! This forum is amazing. I read it all the time. Keep us posted!

I have so felt that...it's not fair, etc.  

 

I've had digestive problems always I think.  Constipation, diarrhea...having to run to the bathroom.  Always had headaches, terrible periods, etc.  

 

I appreciate all the support so much!  How long did it take you to start feeling better after going gluten free?


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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#41 livinthelife

 
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Posted 02 February 2014 - 07:20 PM

I have so felt that...it's not fair, etc.  

 

I've had digestive problems always I think.  Constipation, diarrhea...having to run to the bathroom.  Always had headaches, terrible periods, etc.  

 

I appreciate all the support so much!  How long did it take you to start feeling better after going gluten free?

I remember it was about five days after no gluten when I realized I was still awake at ten pm. I'd started taking more probiotics, good vitamin, sublingual B12 and more calcium. After that it was day to day just better and better. I've glutened myself a few times - all out to eat. I can't stress enough how much that's just not an option most nights. We never realized how much we ate out until we couldn't. 

 

I've started cooking all afternoon on Sundays for the entire week's worth of lunches and then something else for when I'm too tired to cook. Good thing today was cold and rainy, so staying inside was great! Today I fixed crock pot mexican chicken for wraps and also a huge pot of pinto beans - in my new iron dutch oven! Do you like to cook? If so, it's the perfect time to try a whole bunch of fun recipes. If not, it's fun to learn!

 

You will feel better. Just give yourself time. And rest when you can. And drink lots of water - doesn't that help everything!?!?! 


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#42 icelandgirl

 
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Posted 03 February 2014 - 09:47 AM

I remember it was about five days after no gluten when I realized I was still awake at ten pm. I'd started taking more probiotics, good vitamin, sublingual B12 and more calcium. After that it was day to day just better and better. I've glutened myself a few times - all out to eat. I can't stress enough how much that's just not an option most nights. We never realized how much we ate out until we couldn't. 

 

I've started cooking all afternoon on Sundays for the entire week's worth of lunches and then something else for when I'm too tired to cook. Good thing today was cold and rainy, so staying inside was great! Today I fixed crock pot mexican chicken for wraps and also a huge pot of pinto beans - in my new iron dutch oven! Do you like to cook? If so, it's the perfect time to try a whole bunch of fun recipes. If not, it's fun to learn!

 

You will feel better. Just give yourself time. And rest when you can. And drink lots of water - doesn't that help everything!?!?! 

I do love to cook and bake.  I didn't realize until now how much gluteny stuff I cooked.  Would you share your chicken recipe...that sounds yummy!


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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#43 livinthelife

 
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Posted 03 February 2014 - 05:51 PM

I do love to cook and bake.  I didn't realize until now how much gluteny stuff I cooked.  Would you share your chicken recipe...that sounds yummy!

Yes! I sautéed about half of a huge onion in a little butter with a little salt. While that was going I took a package of boneless, skinless breasts and boneless skinless thighs (I guess you could do all breasts but my family is split as far as white/dark and I think breasts need a little fat) and coated them in a little garlic olive oil then dusted them with kosher salt, pepper and McCormick's salt-free "sweet and smoky" seasoning. I threw the chicken in with the onions and added three whole garlic cloves. Browned for a little bit then put it all in crock pot. I added just enough chicken broth to cook them (sorry don't know how much but not much at all) and then let 'em go for a few hours. Then I poured in an entire can of enchilada sauce - the only one I could find without corn syrup. I let that simmer for a couple more hours in the pot on low. SO SO GOOD!!! I made Mexican rice (homemade - rice, tomato sauce, cumin, salt, pepper, garlic powder then sauté a little) and served it with corn tortillas, refried beans perked up with some cheese. We love cilantro, but I know a lot of folks don't like it.

 

I made a million lunch-sized portions for my lunch in the past weeks! It's so convenient to be able to just grab something and not over think eating. 

 

I hope you feel better today!!


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#44 icelandgirl

 
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Posted 04 February 2014 - 11:45 AM

Yes! I sautéed about half of a huge onion in a little butter with a little salt. While that was going I took a package of boneless, skinless breasts and boneless skinless thighs (I guess you could do all breasts but my family is split as far as white/dark and I think breasts need a little fat) and coated them in a little garlic olive oil then dusted them with kosher salt, pepper and McCormick's salt-free "sweet and smoky" seasoning. I threw the chicken in with the onions and added three whole garlic cloves. Browned for a little bit then put it all in crock pot. I added just enough chicken broth to cook them (sorry don't know how much but not much at all) and then let 'em go for a few hours. Then I poured in an entire can of enchilada sauce - the only one I could find without corn syrup. I let that simmer for a couple more hours in the pot on low. SO SO GOOD!!! I made Mexican rice (homemade - rice, tomato sauce, cumin, salt, pepper, garlic powder then sauté a little) and served it with corn tortillas, refried beans perked up with some cheese. We love cilantro, but I know a lot of folks don't like it.

 

I made a million lunch-sized portions for my lunch in the past weeks! It's so convenient to be able to just grab something and not over think eating. 

 

I hope you feel better today!!

This sounds delicious!  I will be making this for sure.

 

Yesterday I realized for the first time that I wasn't starving all day...that's good!


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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley




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