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I Feel Like I Am Going To Die....:(


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#31 nicoleashley

 
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Posted 14 November 2012 - 06:33 AM

I just want to share with you what my husband and I have gone through the last few weeks as well. My husband, God bless him, can be the most stubborn, negative, pessimistic person ever, and so resistant to change! If HE can do this, I have faith that ANYBODY can.


My husband also went in for a colonsocopy/endoscopy, him being 260lbs at 6', who would've even guessed gluten could possibly be at the root of his problems? We got a call saying that his biopsy was suspect for gluten sensitive enteropathy and went and had bloodwork done. We got the bloodwork done at the hospital where I work and decided to grab some breakfast when we were done (I get a discount on the food).
So he wonders around the cafeteria and throws his hands up "I can't eat anything!". Well he is a cereal, biscuits and gravy, waffle, pancake, toast, lets just say he loves his carbs in the morning. But he also loves meat. So I loaded up a plate with scrambled eggs, topped with cheese, bacon, and a fresh fruit cup. As I sat down to eat, he sat down with his water grumbling "I guess I'll just starve"... I start digging in to my food. He tentavly ate a grape from my fruit cup. I then offered him a slice of bacon and a bite of my eggs. He finished my plate.

So then the next day he was home from work and I was at work. (we work 12 hour shifts and alternate weekends so we have days off during the week) and he texted me "Screw this, gluten free is expensive, I'd rather suffer", only his language was much more colorful! lol. He wound up getting some $3.00 steak and eggs and sauteing it with onions and peppers. I just told him to focus on whole foods not substitutes in the beginning

Anyway, we started simple, with basic foods, meat and veggies and beans. I got pot roast buy one get one free and was able to make a delicous beef soup/stew that we ate for two days. Once I realized we could make a lot of food without any of the 'gluten free substitutes" that are expensive Chicken, rice, broccoli, etc. I usually buy meat buy one get one free.

And there are many NORMAL brands that are gluten free already. Chex makes some great cereals. I stocked up on those because my husband loves cereal. Honey nut, chocolate, and cinnamon. Also many mainstream brands are gluten free. I have heinz ketchup (that says gluten free), hellmans mayo. PUBLIX supermarket has gluten-free on many products that are gluten free, There is a big green circle with gluten-free on the price tas. so brands you already know, that aren't any more expensive, are already ok. In this way I bought some barbeque sauce and salad dressings.

Also I looked up brands like kraft and jif peanut butter and it seems like the kraft lite ranch dressing and the jif natural peanut butter I have are ok as well. And I found out my husbands favorite soda's are gluten free as well. Not a healthy choice but it means he doesn't have to feel totall deprived. ( However I did buy some delicous cream soda as a treat, it was 3.99 for four bottles but considering you can pay $1.50 for a 20oz in a store, this was really good with minimal ingredients and sugar instead of corn syrup. )


Now I have ventured into trying some of the gluten free substitutes food. Yes they are expensive and yes we are on a budget too. I have a 3 year old and a 5 year old. So I know it is expensive We just decided that pasta's and breads aren't going to be the basis of our meals anymore, they are going to be TREATS instead of staples. We got a gluten free pancake mix because my husband makes pancakes on sundays when he isn't working. The kids (very picky 3 and 5 year old), LOVED it.

I also tried the DIAMOND crackers, they were HORRIBLE, lol, So I put them in a food processor with some natural potatoe chips and made bread crumbs. My husband seasoned the crumbs and fried up some herb encrusted chicken tenders!

I bought a bread mix from bob's red mill and put it in the bread machine, and my husband loves it. Plus the bread can be frozen and he can get a slice when he wants it. So yes it is expensive but with only him and myself eating it on occasion, not daily.

So I can still keep a regular loaf of bread on hand for the kids and yes I did invest in a separate toaster.
I am slowly starting to experiment with the baking, but little by little because it is expensive. But my husbands health is worth it. I've removed all gluten free food from our home except for a loaf of bread for the kids and I think the chicken nuggest and fish sticks in the freezer, just because they are so picky and need to have something we can give them that's quickand easy . I will just have to be careful and clean whatever I cook them on. (however we are going to have the pediatrician check them as well just to be safe)

I am finding that even when I buy some of the more expensive things that making a homemade gluten free meal is cheaper than even eating fast food! My husband and I both work aprox 48 hours a week ( I worked 60 hours last week) and have two young kids and we still found time to prepare the meals. It wasn't easy but we did. Plus the whole family is fighting a cold right now so we are exhausted as well. We just have to force ourselves to do what needs to be done.

And just to put things in perspective, yesterday my husband ordered naked wings with sauce that he thought would be ok. As an afterthought he asked if he could see the ingredients on the sauce. Well the sauce contained wheat, and he decided since he already paid for the food, he would eat it anyway. He suffered with gas, abd pain, and loose stools the rest of the day. He confessed to me it wasn't worth it to feel that way.

He has lost 5 lbs and I have lost 3. We havn't changed much else except removing the gluten from our diets and I am sticking to the diet too because I FEEL so much better too!

YOU CAN DO IT!!!!!!!!
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#32 cavernio

 
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Posted 14 November 2012 - 07:01 AM

I find I spend less on food now than I did before I was diagnosed because I simply don't eat out because I can't trust anywhere. (For instance, I went to BP shortly after my diagnosis, and my gluten-free pizza had a piece of chicken with BBQ sauce on it. I didn't order any chicken on my pizza. If they can't avoid the big things, how on earth can I expect them to avoid crumbs or dustings of flour??)
I find it hard very hard to believe that ordering out from restaurants is going cheaper than that 5$ loaf of bread.
Of course ordering hardly takes any effort, so I totally get why you're doing it.

And I get that many gluten-free products aren't good. Well, that's par for the course. Gluten is the ingredient in flour that makes breads and crakcers etc have a good texture. Bread flour for instance has higher gluten than regular flour because it adds that extra little fluffy factor. The majority of the gluten-free wheat replacement products you'll try won't meet the standards of regular wheat products. Although with that said, most rice crackers are, IMO, the worst type of food ever. They're pretty bad. All of them.

You need to be very, very careful in your own kitchen regarding cross contamination too. If you ever want toast again, you need to invest in a gluten-free toaster. You can't use old, marked cutting boards, mesh colanders, or scratched non-stick frying pans if you're going to be gluten-free.

I know there are many people here who have 'shared kitchens' but I'm not one of them, thankfully. I would go nuts with the amount of cleaniness and caution needed. I strongly suggest that any shared meals in your house are 100% gluten free. Not only will it make the CC in your own house less likely, leftovers are extremely low effort, can be very fulfilling and satisfying, are cheap, and are likely to be healthier or at least more balanced than 'regular' foods anyways. I don't know what I'd do without leftovers.

You mention things like shake'n bake being easy. Well baked chicken without the shake is even easier! Most traditional western food like meat, potatoes and veggies are already gluten-free or very easily made gluten-free.

I don't really know the surprise of being a celiac (I suppose I was a little surprised by it, but I was also desperately hoping I'd find a reason for why I felt so bad), so this probably won't help you much, but I will never go back to eating gluten because I just want to feel better. I've had 12 years of poor health that has over time gotten worse. I don't need any more incentive than good health to be gluten free. It's expensive. It's a hassle. But it's necessary for your health. The only way you will ever feel better is if you follow the diet. You will not ever get better if you don't. And that includes small amounts of gluten from crumbs. The way I see it, you can't afford NOT to be gluten free.

Just to re-hash, you're screwing up your body eating gluten. Mainly, your small intestines are disappearing. 'Flattening' of the villi is a poor term; it would be like saying if my fingers got chopped off that they were flattened. And without that surface area and all the enzymes they make, that's how malabsorption happens. Another thing, because of the immune reaction, the high levels of antibodies in your blood can cause problems with, well, pretty much anything that requires blood. Your kidneys mainly. They have to filter your blood and the excess of antibodies, over prolonged periods of time, is just too much for them to handle and you can start to lose your kidneys too. Then of course there's the increased risk for cancers. I dunno why, but I suspect is has to do with the fact that your intestines aren't being a barrier anymore, so large things that otherwise would never, ever get into your bloodstream are now in there too.
People do die from celiac disease. If you feel like you're dying, it's probably because you are.

I would also be careful about any brand that doesn't specifically say gluten free. For instance, Hellman's specifically told me they couldn't guarantee their mayonnaise was gluten-free when I emailed them.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#33 nicoleashley

 
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Posted 14 November 2012 - 08:11 AM

my bottles of hellman's were labled with the gluten-free green sticker in publix, the only mayo that had that label, and they say "gluten free" on the bottle, again the only mayo I could find that said gluten free.
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#34 lovegrov

 
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Posted 14 November 2012 - 09:05 AM

I don't care how many hours your husband works (40 is no big deal), he MUST take over things like shopping and making food until you get better. Because you won't get better until you eat right. And on your budget forget about Whole Foods or specialty gluten-free foods. Just eat the stuff that's naturally gluten-free.

I was as bad off physically or worse. I couldn't make anything for myself and was too sick to go to the store. My wife, who was working at least 50 hours a week, had to almost everything for a while, including taking care of two kids.

richard
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#35 lovegrov

 
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Posted 14 November 2012 - 09:07 AM

Hellman's mayo is most definitely, without question gluten free. In fact, I've never heard of a mayo in the U.S. that isn't gluten-free.

richard
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#36 1desperateladysaved

 
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Posted 14 November 2012 - 01:16 PM

I am just wondering how it is going.
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#37 ncdave

 
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Posted 14 November 2012 - 05:05 PM

Hellman's mayo is most definitely, without question gluten free. In fact, I've never heard of a mayo in the U.S. that isn't gluten-free.

richard


Perfect example of expensive gluten free lables, i"ve seen it myself. I bet that jar of mayo cost 2 bucks more than all the rest, how many newbies you think have fell for that trick?
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gluten free 12/11
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soy free 10/12
corn free 10/12
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#38 shadowicewolf

 
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Posted 14 November 2012 - 05:30 PM

Hot tip:

Always look up stuff before you leave. It saves time and gives you an idea however be careful as companies can change the formula....
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#39 nicoleashley

 
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Posted 14 November 2012 - 06:21 PM

The heinz ketchup and hellman's reduced fat mayo I bought wasn't any more expensive than half the stuff on the shelf. The store brands were a tad bit cheaper, however they had more additives on the label. I also bought the ketchup with sugar instead of high fructose corn syrup. I try to buy food with the least amount of ingredients on the label, and yes sometimes those items are a few cents more expensive, however they are also usually the gluten free options that I see.

I may seem like a newbie and in many ways I am. However being a registered nurse when I was in nursing school 8 years ago I decided to try a gluten free diet and immersed myself into the information. I have also tried to limit the processed food we eat now that I have kids and I ALWAYS read labels.

I know there are issues with cross contamination but I have spoken with a dietician recently who said that it depends on the individuals sensitivity and that is why follow up endoscopy's and colonoscopy's every 5 years are so essential, to ensure that the diet is working and the inflammation is under control.
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#40 gwynanne4life

 
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Posted 19 November 2013 - 07:58 PM

I was diagnosed in August via biopsy (total fluke....I went into for a colonoscopy and endo for reflux). I was floored when I was told about celiac disease. Though, for the past few years, I had been been vitamin D deficient and Iron deficient, so it makes sense.

It took nearly a month before I was able to attempt gluten-free...it was very overwhelming. I made it one week gluten-free and I had enough. I was so hungry that I just couldn't hack it.

That was maybe second week of October when I gave it up.

But, my "symptoms" seem to be getting worse and I don't know if this is related to gluten or not...thought I would run it by here.


Problem one: My sleep. This is probably my BIGGEST issue. When I sleep, I never get enough. EVER. Earlier this week, I had slept 16 of 24 hours. SIXTEEN. That is just not acceptable to me. I have an 8 year old and a five year old. :(

This is pretty common for me, though. I have a hard time getting to sleep at night but when I do, I never want to get up. I will drag out and take my kids to school......go back home and sleep until my husband calls to wake me up so I can pick them up. It's impacting every single thing of my life. I don't go anywhere, anymore....I don't even have energy to grocery shop!



Problem two (amongst numerous): I HURT. I can't decide if my leg symptomatic of restless leg or of a siatic nerve, but I need weight on it at night to make it stop feeling weird. On top of that, it is not uncommon for my hands/fingers to be STIFF. My arms (upper arms) will be sore, joints stiff...... my blood tests for rheumatoid issues came back negative (but so did the tests for celiac via blood tests).


Problem 3: dizzy/"out of it"/zombied........ this doesn't happen as frequently, but my aura is just indescribable. today, I was out with my mother and I just had to leave where we were. My head felt funny and it was almost a derealization feeling. My legs felt like they were going to give out underneath me at any moment...they were weak and I just wanted to die.......it's THAT bad.


SO........is this typical of Celiac Disease or are there other things going on? I have got to get to the bottom of this because I am THAT debilitated by all of this....and my kids are suffering. I am missing out on so much.

For the record...I've been gluten-free (again) for two days...but I am eating one meal a day because that is all I can really do given my lack of energy to prepare/shop/etc.


Thanks in advance for any insight:)

I was recently diagnosed in mid-September and have been adhering to a strict gluten-free diet - but here I am all these weeks later - and I have all of these exact same symptoms!!  When will I begin to feel well and have energy.  I am taking vitamins, and all of B12 levels, and D3 and Iron levels were normal. But I feel like I am dying.  Very discouraged. :-9


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“Our greatest weakness lies in giving up. The most certain way to succeed is to try just one more time"   - Thomas Edison


#41 1desperateladysaved

 
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Posted 20 November 2013 - 04:39 AM

I was recently diagnosed in mid-September and have been adhering to a strict gluten-free diet - but here I am all these weeks later - and I have all of these exact same symptoms!!  When will I begin to feel well and have energy.  I am taking vitamins, and all of B12 levels, and D3 and Iron levels were normal. But I feel like I am dying.  Very discouraged. :-9

I sent you a personal message.  I have felt like I was dying sometimes along the way.  You may want to check with someone to see if you have adrenal fatigue.

 

This is an old thread, perhaps you could start a new one with your story.

 

D


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#42 NoGlutenCooties

 
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Posted 20 November 2013 - 06:00 AM

Our lifestyle is a bit strange and I know I have to find a way to change it NOW. Because I am exhausted all of the time and my husband works 40 hours a week and tries to make up at home what I can't do, we do quick stuff..be it very simple shake and bake meals, etc.....I don't even know if I could hack following a recipe at this point in time. We are very strapped for cash being a one-income household. My husband's income dropped when the economy started going into the can...he lost many incentives and bonus opportunities.

I was in Whole Foods Thursday (it is an hour away from us...we don't have one where I am) and I was in awe at all fo the options, HOWEVER, there is no way I could spend $5 for a loaf of bread....or 2.50 for a can of soup......$4 for a microwave meal...etc.

The other option for shopping where I am in Meijer. And Meijer as many things, but they are just as expensive.

 

Going gluten-free does not have to be expensive - in fact, it can be much cheaper.  Stick to simple, whole food.  Meat, veggies, and simple starches (potatoes, rice, quinoa, buckwheat, starchy veggies).  It's actually very simple to make a very healthy, tasty meal in under 30 minutes.  And once you start feeling better, you'll start only needing 8 hours of sleep a night - imagine how much more time you'll have then.  It also doesn't take very long for your energy to start to improve once you get the poisonous-gluten-cootie-bastards out of your system.

 

You feel like you're going to die because gluten is slowly killing you.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#43 GF Lover

 
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Posted 20 November 2013 - 07:11 AM

Going gluten-free does not have to be expensive - in fact, it can be much cheaper.  Stick to simple, whole food.  Meat, veggies, and simple starches (potatoes, rice, quinoa, buckwheat, starchy veggies).  It's actually very simple to make a very healthy, tasty meal in under 30 minutes.  And once you start feeling better, you'll start only needing 8 hours of sleep a night - imagine how much more time you'll have then.  It also doesn't take very long for your energy to start to improve once you get the poisonous-gluten-cootie-bastards out of your system.

 

You feel like you're going to die because gluten is slowly killing you.

 

 

Cooties, you have responded to a member who hasn't been active since December 2012. 

 

Colleen


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#44 JustCricket

 
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Posted 20 November 2013 - 07:22 AM

Cooties, you have responded to a member who hasn't been active since December 2012. 

 

Colleen

 

I almost made that same mistake. lol. I was wondering if we should continue with the current discussion. ?


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Initial suspicion of IBS. Horrible illness, led me to try Low FODMAPs diet. After not having gluten for 3 weeks and seeming to get better, and being tempted by chocolate chip cookies, I had about 2, and ended up very ill again. 

 

Went to GI doc for initial appointment, scheduled endoscopy and colonoscopy, but didn't follow through, due to lack of funds.

 

Gluten-free (with occasional mishaps) since 7/17/13.

 

Daughter was tested 11/16/13 - awaiting results.


#45 GF Lover

 
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Posted 20 November 2013 - 07:26 AM

I almost made that same mistake. lol. I was wondering if we should continue with the current discussion. ?

 

The OP on this thread had specific issues to address.  A new topic would be favorable with current members contributing.

 

Colleen


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HAVE A SUPER SHINY DAY

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

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