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Just Diagnosed...need Advice/moral Support


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#1 icelandgirl

 
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Posted 29 January 2014 - 12:11 PM

I was diagnosed a week ago with celiac.  I was relieved to get a diagnosis after feeling so bad for so long, but now I feel kind of depressed/alone/confused.  I don't know anyone else with this disease and am hoping here I can get some advice and moral support.  Encouragement, something.

 

SInce my diagnosis I've been gluten free...I think anyway.  It seems like all I do is read labels.  I'm also hungry all the time.  Starving.  I still feel completely exhausted.  I don't know that I can tell any difference yet.

 

Can anyone provide some words of encouragement?  How you got started...books to read...recipes to try...anything that really helps you.

 

Thanks so much!


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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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#2 bartfull

 
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Posted 29 January 2014 - 01:31 PM

Hi Icelandgirl, and welcome! :) You came to the right place. The very first thing to do is read the Newbie 101 thread in the coping section. Make sure to click on all the links there too.

 

What you are feeling right now is gluten withdrawal. It is a real, physical thing, not to mention the emotional part that goes along with it. Withdrawal usually lasts two ir three weeks. You'll get headaches, moodswings, exhaustion, and constant hunger no matter how much you eat. This is a pain in the neck but totally normal.

 

Also, I hate to say it, but a lot of us if not most went through total meltdowns at the grocery store at first. I know it happened to me. One time I just started crying and left my cart in the aisle. Another time I told a clerk (in a VERY loud voice) that I hated this and there was nothing here I could eat!!! (I live in a small town and everyone forgave me. :lol: )

 

It's best to stick to whole foods for a while - meat, potatoes or rice, veggies and fruit. It's a lot easier to heal that way and you won't be taking any chances with foods that might be questionable. The good news is, you will soon learn how to read labels. Are you really in Iceland? I ask because you may have different labeling regulations and brand names there.

 

As for recipes, well, there is a recipe section here and "What's for breakfast/lunch/dinner" threads. All of these will help you to learn how to cook delicious gluten-free meals.

 

Ask any questions that come to mind and we'll be glad to help in any way that we can. There are some really smart folks here who are as loving as they are knowledgable. They saved my sanity and saved me from glutening myself, and they will do the same for you. :D


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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!

 


#3 NoGlutenCooties

 
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Posted 29 January 2014 - 02:17 PM

Hi Icelandgirl and Welcome to the Forum!

 

You are most definitely NOT alone!  And the rest of us understand - poke around the forum and ask whatever questions you have, vent, let us know how you're doing - we're here to help and WE CARE!

I agree with Bartfull - whole foods, especially at first, are best.  They're healthy and don't require label analysis.  You can slowly add in label-requiring foods as you go - much easier than trying to do it all at once.  And much, much healthier too!

 

Many people report having their symptoms get worse at first before they get better - so you're not alone there either.  But rest assured... it DOES get better!  And then you start to realize that you are feeling better and have more energy.  At that point you'll have that "ah ha" moment and realize the short-lived discomfort that is now behind you was sooooo worth it!

 

Hang in there!


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#4 eers03

 
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Posted 29 January 2014 - 03:07 PM

Welcome to the board!  Ask ANYTHING.  I sure do.  How you feel is completely normal.  It took me months to finally convince myself that everything is going to be fine.  You'll get there.  It takes time to adjust but you will.  Eventually, your dietary requirements will seem less like an extra effort and more like a normal way of life.  Promise.


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Diagnosis 11/2012

#5 icelandgirl

 
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Posted 29 January 2014 - 03:18 PM

First...Thank you all for your nice replies!

It's such a weird feeling right now. Tired, hungry, nauseous...A little dizzy. I'm sk glad to hear that it's withdrawal and that it will get better. How long did it take all of you?

It's crazy too that in getting to this diagnosis that tests found polyps on my gall bladder and uterus. Surgery is coming up for those. And found that I have h. Pylori. ..which is nasty and the antibiotics I'm fairly sure are contributing to me feeling bad. I feel about 90...but I'm 42.

Do any of you attend support groups where you live? I've been looking into that.

Also, for bartfull...I'm from Iceland but have lived in the states for over 30 years.
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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

#6 bartfull

 
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Posted 29 January 2014 - 03:36 PM

OK, that makes it easier because I know the labeling laws here and I know which brands are safe. :)

 

In the US, wheat must ALWAYS be identified on the label. Rye is pretty much only in Rye bread. But barley is the tough one. It is not considered one of the top 8 allergens so they don't have to say "from barley" if an ingredient they use IS actually sourced from barley. So malt is something you have to watch out for on labels because it is usually made with barley.

 

There are a few companies that have pledged to ALWAYS identify any gluten containing ingredients. Kraft foods is one. Con Agra foods is another. Just between those two there are a TON of processed foods you can safely eat as long as you read the label first. Planter's nuts for example, are a Kraft food. I eat them all the time. Other brands of nuts MIGHT be made on the same equipment they process gluten on, so they MIGHT be cross-contaminated. The thing is, they don't have to tell you this on the label. Some companies do, but it's not a law so others don't.

 

Also, even though you're going to stick to whole foods for a while (right? ;) ) , when the time comes and you feel like having a piece of bread or some gluten-free cake or cookies, there are some great substitutes. My favorite bread is Canyon Bakehouse. Udi's is pretty good too. Also, if you're in the mood for a frozen pizza, try Against The Grain. And Pamela's makes some darned good cookies, while if you want to be really decadent, try Udi's Doubel Chocolate Muffins. Even my non-gluten-free friends love them.

 

Even though you're feeling crummy right now, it's going to get better every day. Like Eers said, pretty soon the diet will become second nature and you won't even think about it most of the time. And on top of that, you're going to start feeling so good pretty soon you'll be enjoying life more than you ever have!


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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!

 


#7 icelandgirl

 
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Posted 29 January 2014 - 04:25 PM

OK, that makes it easier because I know the labeling laws here and I know which brands are safe. :)

 

In the US, wheat must ALWAYS be identified on the label. Rye is pretty much only in Rye bread. But barley is the tough one. It is not considered one of the top 8 allergens so they don't have to say "from barley" if an ingredient they use IS actually sourced from barley. So malt is something you have to watch out for on labels because it is usually made with barley.

 

There are a few companies that have pledged to ALWAYS identify any gluten containing ingredients. Kraft foods is one. Con Agra foods is another. Just between those two there are a TON of processed foods you can safely eat as long as you read the label first. Planter's nuts for example, are a Kraft food. I eat them all the time. Other brands of nuts MIGHT be made on the same equipment they process gluten on, so they MIGHT be cross-contaminated. The thing is, they don't have to tell you this on the label. Some companies do, but it's not a law so others don't.

 

Also, even though you're going to stick to whole foods for a while (right? ;) ) , when the time comes and you feel like having a piece of bread or some gluten-free cake or cookies, there are some great substitutes. My favorite bread is Canyon Bakehouse. Udi's is pretty good too. Also, if you're in the mood for a frozen pizza, try Against The Grain. And Pamela's makes some darned good cookies, while if you want to be really decadent, try Udi's Doubel Chocolate Muffins. Even my non-gluten-free friends love them.

 

Even though you're feeling crummy right now, it's going to get better every day. Like Eers said, pretty soon the diet will become second nature and you won't even think about it most of the time. And on top of that, you're going to start feeling so good pretty soon you'll be enjoying life more than you ever have!

Thanks for all the information.  I haven't been eating just whole foods...I will have to work on that.  It's hard because I have a husband and 3 kids.  What do you eat for breakfast?  Today I had chex cereal and then later had a gluten free (labelled) Greek yogurt.  I will work on doing the meat, rice and potatoes.  What about fruits and veggies?  How do you get all your nutrients in?

 

Every Friday night our family has pizza/movie night...I'm not sure how to even handle that going forward.

 

How long did it take you to feel better?  Do you remember?  I'm really looking forward to that.  I told my husband last night that I can't remember the last time I felt 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

#8 bartfull

 
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Posted 29 January 2014 - 04:54 PM

I used to eat a banana and an avocado along with a ricecake (OK, I guess that IS a processed food) for breakfast at first. Now I often eat a Lara Bar (at the healthfood store, although sometimes you can find them at the grocery store too) and...ICE CREAM! Of course that doesn't last all morning so when I get to work I munch on some Planter's cashews.

 

Lately I've been eating pancakes (made with King Arthur gluten-free flour) for breakfast. I make a big batch and put them in the freezer. I just take a couple out and pop them in my toaster oven.

 

If you can find one of those Against The Grain pizzas you could always have that on movie night. I usually buy the cheese pizza and add my own toppings. If you can find Mulay's gluten-free sausages, they are WONDERFUL! I usually squeeze the meat out of the skin and cook it crumbled. Then I put it on the pizza before I cook it.

 

Actually, it's pretty easy to get all the nutrients a person needs on a whole foods diet. Meat, potatoes, fruits and veggies. That's all people ever used to eat back in the "old days" before all these processed foods came out. Add some nuts for extra protein and fiber, and you've got a well balanced diet.

 

I think it took about two weeks, maybe two and a half, and I started to feel like a new woman. I remember coming here and starting a thread titiled, "I feel good!", and it started a James Brown earworm for a lot of the members. :lol:


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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!

 


#9 NoGlutenCooties

 
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Posted 29 January 2014 - 05:07 PM

 What do you eat for breakfast?  

 

I drink a protein shake everyday for breakfast.  It's quick, easy and provides a hit of protein that boosts your metabolism and sticks with you.  I use Designer Whey - French Vanilla flavor (The Vitamin Shoppe and some Target stores carry it).  18g of protein and only 2g of sugars.  Beware some of the other flavors though, because they are lower in protein and higher in sugars.

 

I feel like crap whenever I eat Chex on an empty stomach - too high in sugar for me, especially once you add the milk.  I only eat it occasionally as a "dessert" - after a full meal.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#10 mamaw

 
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Posted 29 January 2014 - 05:24 PM

You  already got  some  good  advice.....find  a good  support  group in your  area &  latch onto  an  old  devoted  strict  celiac  to help you through  the learning  phase....You  can  find  support  group info   through the  CSA, Gluten intolerance  group. & many  others....


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#11 icelandgirl

 
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Posted 29 January 2014 - 06:47 PM

I so appreciate all of the advice and encouragement that you have given me today...looking forward to feeling 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

#12 anand

 
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Posted 30 January 2014 - 06:30 AM

Hi,
Please check your vitamin b12 level and other micronutrient levels especially zinc . Only when all micronutrient and vitamin levels get to normal will you start feeling good.. All the best!
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#13 MGR

 
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Posted 30 January 2014 - 12:38 PM

I am not great at eating in the morning- but I absolutely need to have my cup of coffee... Then I have fruit, usually a mixture- melon, apple blueberries. A bowl of natural yoghourt and maple syrup- on weekends I often make waffles or drop scones for breakfast, again with maple syrup. Eggs and bacon. .... Cooking gluten-free is the easy part, CC and eating out, travelling..... But it soon become second nature and you take it's normal-
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#14 icelandgirl

 
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Posted 30 January 2014 - 12:44 PM

I am not great at eating in the morning- but I absolutely need to have my cup of coffee... Then I have fruit, usually a mixture- melon, apple blueberries. A bowl of natural yoghourt and maple syrup- on weekends I often make waffles or drop scones for breakfast, again with maple syrup. Eggs and bacon. .... Cooking gluten-free is the easy part, CC and eating out, travelling..... But it soon become second nature and you take it's normal-

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?


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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

#15 tonalynn

 
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Posted 30 January 2014 - 01:12 PM

Icelandgirl - I feel your pain! I was diagnosed on October 1, 2013 and it was a complete shock! I thought it would be something related to my Hashimoto's Thyroiditis, my hormone imbalances, something like that. Turns out it IS related, but I'd never even HEARD of celiac before! I am a huge carb and bread junkie, have been all my life. Taking away one of my staples and favorite food groups, are you kidding me??

 

I was starving too. All the time it felt like, and nothing appealed to me. I purchased a LOT of Hershey's Kisses. :-) I'm still having trouble with the vegetables though. I like them fine, but they don't appeal to me and I hate cutting them up.

 

I've started the protein shake idea - mainly because my naturopath wants me to take 2-3 scoops of this horrible tasting, gritty L-Glutimate powder and I can't stand it in anything else. I like Jay Robb's Egg White Protein - the Vanilla is actually fantastic! Doesn't have that protein powdery taste at all. And because I'm lazy or don't have enough time to make stuff here's what I did: I went to Costco and bought three huge bags of frozen fruits. I opened all the bags and measured out what I normally put in a shake (not quite 2 cups) and put serving size portions in plastic bags in the freezer. That way I don't have to bother with big bags, spilling fruit, etc. My shakes are 1 cup vanilla coconut milk, frozen fruit, a banana, the protein powder and the yucky L-glutamine. Pretty tasty, and really easy.

 

I started out with packaged gluten free things, like Amy's gluten-free mac and cheese, Safeway's Eating Right brand has a surprisingly good hamburger mac mix that's gluten-free (like I said, I'm lazy). You don't always have to shop at specialty stores like Whole Foods, the big grocery stores are carrying more and more gluten-free items. I found that if I could use a good gluten-free substitution for things I used to eat, the transition was easier.

 

Here's another idea - everyone knows about the freezer meal preparation places. Check to see if your area has someone that offers gluten-free sessions!! Here in Denver, there's a dedicated gluten-free bakery called Deby's, and twice a month they offer sessions to make gluten-free freezer meals. It's fun and you have food to eat!

 

It does feel isolating, and limiting. I feel like a burden when going out with friends, because it has to be a trusted gluten-free place or I can't eat. I miss beer. and REAL pizza! for your pizza night, there are some decent frozen options in the stores, you can buy/make gluten-free pizza dough/crusts and make pizza yourself, or (and this is brand new so I don't know where they offer it) I understand some pizza delivery places are starting to add gluten-free pizza to their menus. I know Domino's has one (but they specifically say it's not good for celiacs) and I think Blackjack Pizza here in Denver is experimenting with having a dedicated prep station to make gluten-free pizza.

 

I actually tried to start a Meetup group here for Celiacs or Gluten Intolerants, but there wasn't any interest. I was really disappointed. It makes it much easier if you have a group who all share the same restrictions to go out with, then you don't feel like such an outsider!

 

Hopefully your family is supportive, and will go gluten-free with you. It certainly can't hurt them! It's not an easy change, I won't lie to you. I really haven't noticed any positive changes or elimination of symptoms yet, but it hasn't quite been 4 months yet. Everyone says give it time, things will change. I'm just impatient by nature. :-)

 

There are lots of great ideas on here. Experiment with people's suggestions and use the ones that work for YOU. Some people here LOVE to cook (Oh how I envy them - I despise it!) and offer great cooking tips. Others (like me) try to find substitutions or "cheat" versions of foods that we can get or make gluten-free. I do think every major city has a support group, or should at least. The week I was diagnosed, our grocery chain here, King Soopers (Kroeger) held a HUGE wellness fair at the convention center, and promoted over 250 gluten free options they either sold or were coming soon. THAT was very helpful and I came home with more samples than I knew what to do with!

 

Unfortunately, my a-ha moment that I really can't have gluten anymore was by accidentally glutening myself (bought waffles I thought were gluten-free but I didn't look carefully enough at the box) and violently vomiting 3 hours later. Hopefully your a-ha moment will be less icky! It just solidified that I have to stay away from gluten, this isn't just some crazy suggestion, and now I'm more accepting of it. Still a bit mad, but accepting.

 

I hope this helps you to find your way. I know when I first came to this board, the comments, suggestions, advice and support were amazing and very helpful (this is still the case). It really made me feel like I wasn't the only freak in the circus! Good luck to you, and if you find a great recipe/substitution let us know!!


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