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Struggling


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#1 Food

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Posted 28 October 2005 - 06:39 PM

[FONT=Arial] :o I have been diagnosed with Celiac disease and am really struglling. I feel the information is overwhelming and I read so many different things. My dietician and doctor aren't that helfpul with the diet. I have been on the diet 7 weeks now and every day gets harder, not easier. My symptoms aren't that bad so I acutally feel worse on the diet than before I was diagnosed. I am always hungry now and have headaches all the time. I think gluten-free food is very expensive. I have bought so many things and I only like one of them. I no longer enjoy social events or going out. I attend a lot of church functions and school functions for my son and all I do is watch everybody eat food I can't have. I travel a lot for business and am often not able to chose where/what we eat. I just watch everyone eating the food I can't have. Alll I do is think about all the food I can't eat. Since I wasn't feeling that bad before being diagnosed, this is devistating to me. In additon I fear since I am not the most savvy label reader that I may be getting traces of wheat and not knowing it. I just look for wheat, barley, or rye on the ingredient list. Every time I call a manufacturer they assure me if wheat isn't listed it isn't in there. I know longer enjoy eating and often skip meals. I still am in shock that I paid $5 for a box of gluten-free brownies when I normally pay 99 cents for a box. I won't now if I am better until another biopsy is done.
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#2 Claire

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Posted 28 October 2005 - 08:20 PM

[FONT=Arial] :o I have been diagnosed with Celiac disease and am really struglling.  I feel the information is overwhelming and I read so many different things.  My dietician and doctor aren't that helfpul with the diet. I have been on the diet 7 weeks now and every day gets harder, not easier.  My symptoms aren't that bad so I acutally feel worse on the diet than before I was diagnosed.  I am always hungry now and have headaches all the time.  I think gluten-free food is very expensive.  I have bought so many things and I only like one of them.  I no longer enjoy social events or going out.  I attend a lot of church functions and school functions for my son and all I do is watch everybody eat food I can't have.  I travel a lot for business and am often not able to chose where/what we eat.  I just watch everyone eating the food I can't have.  Alll I do is think about all the food I can't eat.  Since I wasn't feeling that bad before being diagnosed, this is devistating to me.  In additon I fear since I am not the most savvy label reader that I may be getting traces of wheat and not knowing it.  I just look for wheat, barley, or rye on the ingredient list.  Every time I call a manufacturer they assure me if wheat isn't listed it isn't in there.  I know longer enjoy eating and often skip meals.  I still am in shock that I paid $5 for a box of gluten-free brownies when I normally pay 99 cents for a box.  I won't now if I am better until another biopsy is done.

<{POST_SNAPBACK}>


At first it is tough but thousands of people are doing and so can you. Your alternative continue to consume gluten and allow it to damage your body to the point that you are far worse than your are now. Gluten is addictive and part of your 'feeling worse' is withdrawal. It will diminish.

May I suggest that an attidute adjustment is in order. Your negative thoughts can only breed depression and anxiety. You just don't need that. You have been given a chance to restore your health. Be thankful for that. You can tough it out until you have found your way to good tasting, satisfying foods. gluten-free is a healthy diet and you will benefit from it sooner rather than later.

I would suggest that you not immerse yourself in too much information. It is overwhelming not to mention confusing. Take it slow. The internet express goes around the world in 80 seconds and can really be just too much for starters. Read one or two articles a day but don't saturate yourself or you will be defeated before you start.

Come to this forum for help. Ask questions or just read the posts you are interested in. Go to the search feature and look up the things you want to ask about. Most of these have probably been discussed here at one time or another.

I have some information that another forum member shared with me awhile back and I will gladly send it to you if you want it, Let me know if sending an email with this info is okay with you. Unfortunately I can't get a website address for it so I have to send it all. It is long but should be a great help to you - and all in one place.

You can do this. You will do this - because your health and quite possibly your life depends on it.

Claire
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#3 Nicolette

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Posted 28 October 2005 - 10:31 PM

I know how you feel, I really do. I'm six weeks into this new diet, but fortunately for me, I feel better for being on the diet. It just might tke your body longer to adapt.
We all have good days and bad days. When I was first diagnosed, I was over the moon, because FINALLY I knew what was wrong with me. But lately, its got harder because I feel like I'm the one that has to stay on top of everything. I constantly think about food, I'm always hungry, I have to look after and feed my kids all the stuff they still want to have then thoroughly clean my kitchen before I can have anything. It's hard trying to think up different meals and sometimes I just can't be bothered and have cheese and gluten-free crackers AGAIN!
Do you have a supportive partner? This can help enormously if they're on board about all the changes you have to make. If not, what about family/friends? I've come to realise that in these early times especially, you need help and support from others, because believe me, you'll soon discover there's a lot of ignorant people out there who think you're just observing some fad diet.
Get some support, even if you have to ask for it. Stick to being gluten-free because the alternative is terrible. You'll get through this bad patch.

We all do.

Nikki
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Diagnosed with celiac disease via blood test September 2005.
gluten-free since September 2005
Diagnosed Rheumatoid Arthritis Aug 2004
Diagnosed early osteoporosis Aug 2004

#4 ravenwoodglass

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Posted 29 October 2005 - 04:11 AM

[FONT=Arial] :o I have been diagnosed with Celiac disease and am really struglling.  I feel the information is overwhelming and I read so many different things.  My dietician and doctor aren't that helfpul with the diet. I have been on the diet 7 weeks now and every day gets harder, not easier.  My symptoms aren't that bad so I acutally feel worse on the diet than before I was diagnosed.  I am always hungry now and have headaches all the time.  I think gluten-free food is very expensive.  I have bought so many things and I only like one of them.  I no longer enjoy social events or going out.  I attend a lot of church functions and school functions for my son and all I do is watch everybody eat food I can't have.  I travel a lot for business and am often not able to chose where/what we eat.  I just watch everyone eating the food I can't have.  Alll I do is think about all the food I can't eat.  Since I wasn't feeling that bad before being diagnosed, this is devistating to me.  In additon I fear since I am not the most savvy label reader that I may be getting traces of wheat and not knowing it.  I just look for wheat, barley, or rye on the ingredient list.  Every time I call a manufacturer they assure me if wheat isn't listed it isn't in there.  I know longer enjoy eating and often skip meals.  I still am in shock that I paid $5 for a box of gluten-free brownies when I normally pay 99 cents for a box.  I won't now if I am better until another biopsy is done.

<{POST_SNAPBACK}>


We all know how hard this is. As another poster stated you are going through withdrawl also so this makes it doubly hard. I cried in Wegmans a couple days into my elimination diet and my DD refused to shop with me for a long time after that! Check out the products section of the boards and contact companies asking for gluten-free lists when you check out one product. One of my favorite companies is Hormel, they make great AuJus Beef and Pork roasts and I use the leftovers for shepard pie with country crock mashed potatoes as a top crust. Add a little corn starch mixed with cold water to the aujus boil and you have gravy. Anyway that is just an example, as time goes on you will find it gets easier. OreIda will also send a list and so will many other companies. It takes some getting used to but you can do it. Concentrate on the things you can have and work on finding alternitives for things you can't. Be sure to check your shampoos and all your meds and get a new toaster. You'll be okay and feel free to come here and rant, if it helps.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 VydorScope

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Posted 29 October 2005 - 06:35 AM

Food,

If your willing to read and ask question you will get all the help here you need. You will probably find out that you dont need a dietition to help you, most dont.

First off, if you buy "gluten-free" versions of gluten food, like bread, you will pay alot more. Dont do that if you need cut back. Drop from your diet the worst offendors in this case breads. Then eat more "normal" foods that do not contain gluten, such as:

Fruits, Vegitibles, Fresh meat, milk, fruit juices, coffee, and etc.

There is ALOT of "normal" foods yuou can salfy eat once you get used to reading ingreditents for gluten. We actully sitll use alot of store brand products (in our case Kroger) because most of them are gluten-free and we save a TON off specialty foods that way.

You WILL have withdralw like symptons, esplys form the very carby foods like bread. They go away and in the long run you will fill much better.

This forum is an awsome resource, use it heavely and you can over come this. Look at the number of ppl that post here, and read here, most of them have been where you are and will help you get where you need to be! :D
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#6 jrom987

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Posted 29 October 2005 - 08:00 AM

Food,

My heart goes out to you! I have been gluten-free for two and a half weeks and it is harder than I thought it would be! I, too, was so happy to finally have an answer to why I feel 20 years older. I was so happy for my husband to know that my aches and pains are real. I have not had too hard of a time adjusting as I know this is the best thing for me and I really, really want to feel better. My husband and son are not going to follow my gluten-free lifestyle so I do a lot of cleaning before I eat too. My hands are so dry from being washed every 5 minutes! :D

You have every right to feel the way you do but remember, this is something we can control. What goes in our mouths is up to us.

This place is the best place I have found for getting answers. I bought 5 books when the doctor told me my biopsy results were positive. They all give different information. At least, with the wonderful people on here, we can take their advice and see if it works for us. It seems that everyone is different.

Keep reading here and write to people when you need a shoulder. I find that my emotions are up and down each day and I never had mood swings like these before! I am very positive about this life change and I am glad I am being given the chance to be healthy.

Good luck!

Jo Ann
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#7 Guest_nini_*

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Posted 29 October 2005 - 08:16 AM

try to find a support group in your area too. That can be an invaluable resource.

You are going through gluten with drawls right now, I remember that well. Stick with the diet and it will pass. Don't spend a lot on specialty foods. Stick with the ones that are naturally gluten free.

I promise, it does get easier.
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#8 Food

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Posted 29 October 2005 - 05:13 PM

At first it is tough but thousands of people are doing and so can you. Your alternative continue to consume gluten and allow it to damage your body to the point that you are far worse than your are now.  Gluten is addictive and part of your 'feeling worse' is withdrawal. It will diminish.

May I suggest that an attidute adjustment is in order. Your negative thoughts can only breed depression and anxiety. You just don't need that.  You have been given a chance to restore your health. Be thankful for that. You can tough it out until you have found your way to good tasting, satisfying foods. gluten-free is a healthy diet and you will benefit from it sooner rather than later.

I would suggest that you not immerse yourself in too much information. It is overwhelming not to mention confusing. Take it slow. The internet express goes around the world in 80 seconds and can really be just too much for starters. Read one or two articles a day but don't saturate yourself or you will be defeated before you start.

Come to this forum for help. Ask questions or just read the posts you are interested in. Go to the search feature and look up the things you want to ask about. Most of these have probably been discussed here at one time or another.

I have some information that another forum member shared with me awhile back and I will gladly send it to you if you want it, Let me know if sending an email with this info is okay with you.  Unfortunately I can't get a website address for it so I have to send it all. It is long but should be a great help to you - and all in one place. 

You can do this. You will do this - because your health and quite possibly your life depends on it.

Claire

<{POST_SNAPBACK}>


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#9 Food

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Posted 29 October 2005 - 05:17 PM

Is any one aware of any support groups in the Milwaukee, Wisconsin area. I have to tell you my spouse is not very supportive and nor is my family. Everyone feels bad for me as they eat pizza and cake in front of me. I would love any information on list of products/restaurants people have. Not sure how to receive them in this forum. I am jsut having a hard time imagining never ordering pizza, fired chickn, pasta or a hambuerger again!
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#10 Guest_nini_*

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Posted 29 October 2005 - 06:42 PM

http://www.enabling....s/grpus-wi.html
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#11 Guest_nini_*

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Posted 29 October 2005 - 06:43 PM

click on that link for Wisconsin area support groups
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#12 CeliacMe

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Posted 30 October 2005 - 11:00 AM

You probably are eating things with wheat, oats, barley or rye in them if you don't feel better already. You may want to clean out your kitchen and "de gluten it", by wiping everything down really well and making sure that all of your utencils are really clean and don't have any gluten residue on them. I also cleaned out my cabinets, I had flour in them because I bake a lot. I noticied the difference within a week, most people do too. Here are some ingredients to watch out for:
modified food starch
maltodextrin
dextrin
malt (i stay away from anything with malt in the title)
most soy sauce
most bbq sauce
most of any sauces you must be very careful about

of course anything with wheat, oat, barley, or rye is not okay.

these are some ingredients that may be made with gluten and you have to call the manufacturer to see if they are okay:

carmel color
vinegar
hydrolized anything
anything in a can unless it says "gluten free"

if you aren't sure about something, don't eat (or drink it)until you contact the manufacturer!

Unfortunately you are going to have to learn to cook and you can bring a gluten-free dish to your functions or just avoid going altogether. Outback, PF Changs, Legal Seafoods and many more resturants have menus for us. (you can have the "thunder down under" dessert at outback). Also chic-fil-a has a variety of items, McDonalds and Wendy's too. You should go to their websites if you want to see what they have. You can also contact many other resturants to see if they can accomidate your diet or contact your local grocery store and see which products they have for you. My grocery store (publix) sent me a list of items that are gluten-free.

Here is my meatloaf receipe to get you started:

1.5 lbs of ground beef (you can use turkey, pork or a mixture if you'd like)
1 chopped vidalia onion
2 small cans of hunts plain tomatoe sauce
1/2 tea ground mustard
1 tea minced garlic
1 tea chili powder
1 tea paprika
1 tea ground bay leaves
1 tea ground cloves
(you can also use whatever spices you like and season to taste)
this is a modified version of best ever meatloaf from a gluten free cooking book by carol fenster that you can buy at borders or barnes and noble.

mix spices and garlic in tomatoe sauce - mix with whisk
mix chopped onion in separate bowl with ground meat (you can add green peppers, celery, carrots or whatever you like, I also use gluten-free bread crumbs - if I have it - just a slice of toasted gluten-free ener-g bread and chop it up as small as I possible)
mix half a cup of the tomatoe mixture in with the meat mixture and form a loaf with the meat, place in a casserole dish and pour remainder of tomatoe mixture over loaf. bake in an oven preheated to 350. it should take about an hour or so to cook. I always check it around 45 minute and you can continue checking it until the meat is cooked (every oven is a little different).
while meatlaof is cooking you can steam vegetables (fresh or plain frozen) and i like to make mashed potatoes from scratch, but ALEXiA foods has mashed pototoes that are gluten-free or herbed potatoe wedges or fries.

Also, "bone suckin' sauce" bbq sauce is gluten-free (they have a new thick style that isn't watery like the other one), you can use it to marinate chicken and made sides like plain rice, veggies or french fries.

I like to pre make grilled chicken breasts, I marinate them in minced garlc, olive oil, thyme and basil. I slice them up, put them in the fridge and keep bags of salad on hand. Annie's salad dressing makes several flavors of gluten-free dressings. I like green godess or cowgirl ranch.

Most boar's head products are gluten-free too. You can wrap some cheese and ham together or use lettuce for a "wrap" for a quick snack.

gluten-free Rice Krispies

use same receipe as Rice Krispies except with gluten-free rice krispies (Barbar'as crisp brown rice cereal or other organic rice krispie that is gluten-free). I use publix brand small marshmellows and publix brand butter.


[FONT=Arial] :o I have been diagnosed with Celiac disease and am really struglling.  I feel the information is overwhelming and I read so many different things.  My dietician and doctor aren't that helfpul with the diet. I have been on the diet 7 weeks now and every day gets harder, not easier.  My symptoms aren't that bad so I acutally feel worse on the diet than before I was diagnosed.  I am always hungry now and have headaches all the time.  I think gluten-free food is very expensive.  I have bought so many things and I only like one of them.  I no longer enjoy social events or going out.  I attend a lot of church functions and school functions for my son and all I do is watch everybody eat food I can't have.  I travel a lot for business and am often not able to chose where/what we eat.  I just watch everyone eating the food I can't have.  Alll I do is think about all the food I can't eat.  Since I wasn't feeling that bad before being diagnosed, this is devistating to me.  In additon I fear since I am not the most savvy label reader that I may be getting traces of wheat and not knowing it.  I just look for wheat, barley, or rye on the ingredient list.  Every time I call a manufacturer they assure me if wheat isn't listed it isn't in there.  I know longer enjoy eating and often skip meals.  I still am in shock that I paid $5 for a box of gluten-free brownies when I normally pay 99 cents for a box.  I won't now if I am better until another biopsy is done.

<{POST_SNAPBACK}>


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Pamela
Florida

Gluten Free since 7/05

#13 Idahogirl

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Posted 01 November 2005 - 11:28 AM

It is reassuring to know that I am not the only one dealing with withdrawals! I'm newly pregnant, so I thought maybe it was that, but I'm sure it's because I haven't eaten bread in a week! I am usually a frugal shopper, only buying things as cheap as I can possibly get them. So this may be a change for me. I can't just buy what's on sale and go with that.

I am always hungry, too, and my house is still full of gluten foods, so it's hard when you're looking for a snack, and you see all these foods you can't have. Since I'm such a cheapskate, I will try and use up what I have left on my husband and kids.

I went out to eat last night for the first time since going gluten-free, and it was no fun. I felt like such a nag to the waitress. I wanted to cry. The guy sitting across from me was eating mozerella sticks dipped in marinara sauce, and my son had a hamburger with fries. Someone else had a club sandwich (my favorite!). I'm hoping that after awhile my addiction to food will subside and I will forget what all of those comfort foods tasted like ;) I doubt it, but I'm trying to be optimistic.

Things I have to get rid of and replace in my house: tomato soup, cream of mushroom soup, soy sauce, teryiaki sauce, enchilada sauce, ranch dressing, chilli.

I have found other brand names (why didn't I just buy Kraft instead of Hidden Valley in the first place! :angry: ), so I will be doing some swapping.

I am really glad I found this website. It has been so helpful so far!
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#14 jrom987

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Posted 01 November 2005 - 10:50 PM

"I went out to eat last night for the first time since going gluten-free, and it was no fun. I felt like such a nag to the waitress. I wanted to cry. The guy sitting across from me was eating mozerella sticks dipped in marinara sauce, and my son had a hamburger with fries. Someone else had a club sandwich (my favorite!). I'm hoping that after awhile my addiction to food will subside and I will forget what all of those comfort foods tasted like ;) I doubt it, but I'm trying to be optimistic."

Idahogirl:

I wanted to add a few thoughts. I just started three weeks ago and I know what you are going through! My husband will NOT work with me at all and eats everything I can't have right in front of me. BUT, guess what? I have had two really good days with very little back pain! Not only that, I have not had one day of tummy problems for two weeks! So, it is very much worth sticking to this new life.

My husband and I went out to eat this past weekend and it was wonderful! We went to Outback Steakhouse. I decided to skip the salad as it seemed that the people who had possibly been glutened there had all eaten the salads. I shared the wonderful brownie dessert with my husband and didn't feel left out at all. The waitress was absolutely wonderful!

I made a special shelf in my pantry for all my gluten-free foods and I do not mind looking at all the stuff I CAN'T have because there is a lot that I CAN have. I just found out that Lays Stax are gluten-free so I have a can just for me. :D

Good luck and keep reading the posts as they are so helpful.

Jo Ann

I am a long ways from being "healed" but I feel a little better each day. My energy still hasn't come back but I feel very confident that it will happen eventually.
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#15 kevsmom

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Posted 02 November 2005 - 05:27 AM

I have been gluten free for 6 months. I also was amazed at the cost of gluten free food.

I recently bought some "Food For Life" gluten free bread that the grocery store carried. It was actually pretty good if you nuke it and put peanut butter and jelly on it. I have also made french toast out of it. Yum :P

You would be surprised at the amount of "mainstream" products that are gluten free. I have contacted a lot of manufacturers, such as (Kraft, Purdue, Hormel and Edy's) and some of the local grocery stores. They have all provided me with a list of gluten free products that I can get from them.

I have also found recipes for foods made from all gluten free products. It is a lot less expensive than trying to find gluten free things that you can only get at health food stores.

Keep asking questions - and good luck!
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Diagnosed with Celiac Disease April 2005
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