Newly Diagnosed With celiac disease And Still Feel B A D ! Help

[Harley0000]

Hello everyone

I am so glad I came across this site. I have read alot of your stories and now at least know I'm not alone.

I was just diagnosed with Celiacs a few weeks ago (positive blood test and positive endoscopy). My Mom has celiac disease and 3 siblings. I am so depressed and have alot of the feelings I have read here like resentment, bitterness, depressed, angry, isolated and basically not understood by "normal" people. A FREAK! I am trying my best to remain positive and started the gluten free lifestyle. But here is the problem. I still feel horrible. I have no appetite whatsoever and when I do eat I get pains, sick to my stomach, feel that old Familiar bloated food stuck in the throat and just feel lethargic and gross. I guess I'm just not understanding what I am doing wrong. I have gone to great lengths to ensure no wheat/gluten has snuck into anything I have put in my mouth. So where in the world do I go from here?? Some people reported immediate improvement but I see none yet. I eat so little now and it is usually plain chicken breast, veges and some fruits.

I can usually say "there are people who have far worse things that this" but this time, I cant get over it! I just keep thinking of all the foods that IF i ever get my appetite back, that I cant have. I always go out to dinner with my husband, friends, kids and it seems like those days are over!

Any information would be greatly appreciated.

[tmbarke]

It's a change for sure.......but don't give up.

Making sure your foods are fresh and you're cooking them without gluten ladened ingredients will make the difference.

Once you eat simple and gluten-free........you'll go thru the withdrawls........which can be terrible to live thru and deal with.

I have a few products that I buy that make food better for me to enjoy.

For salad dressing - I buy either Bolthouse or Litehouse dressings in the produce section (check their websites for the safe ones)

Kraft Cheese - they use potato flour to keep the shreds from sticking together - others could use reg flour.

Daisy Cottage Cheese and Sour creams are safe - goes great with the fruit

Classico pasta sauce says gluten-free on the label - you can dress up that chicken breast with the sauce and some cheese!

Take a multi vitamin!

My doctor put me on 1000iu of Vit D and B complex with the multivitamin......you're deficient in nutrients and these will make you feel better.

Jennie-O turkey - fresh - ground - or the breakfast sausage is safe - you can check out their site.

Have eggs too! lots of protein.

If you live near a Meijers store - they have a gluten-free grocery list of their products that makes shopping easier.......Spartan is still working on this but have bin labels that have the gluten-free checked tags too.

Milk is safe!

gluten-free pastas aren't that bad either.

get experimental with what you eat as a gluten eater and just replace the gluten items with the gluten-free items.....tastes are NOT that much different.

Corn or Rice chex are not gluten-free so eat those up!

There should also be gluten-free sections in your grocery store so don't be afraid to ask

You have the control as a consumer

I'm just not lucky with the breads yet.........but I have found gluten-free crackers!

Go to the forum of gluten-free shopping - there are alot of helpful hints there too!

You'll get thru it - Just have faith!

*hugs*

Tena

[Harley0000]

It's a change for sure.......but don't give up.

Making sure your foods are fresh and you're cooking them without gluten ladened ingredients will make the difference.

Once you eat simple and gluten-free........you'll go thru the withdrawls........which can be terrible to live thru and deal with.

I have a few products that I buy that make food better for me to enjoy.

For salad dressing - I buy either Bolthouse or Litehouse dressings in the produce section (check their websites for the safe ones)

Kraft Cheese - they use potato flour to keep the shreds from sticking together - others could use reg flour.

Daisy Cottage Cheese and Sour creams are safe - goes great with the fruit

Classico pasta sauce says gluten-free on the label - you can dress up that chicken breast with the sauce and some cheese!

Take a multi vitamin!

My doctor put me on 1000iu of Vit D and B complex with the multivitamin......you're deficient in nutrients and these will make you feel better.

Jennie-O turkey - fresh - ground - or the breakfast sausage is safe - you can check out their site.

Have eggs too! lots of protein.

If you live near a Meijers store - they have a gluten-free grocery list of their products that makes shopping easier.......Spartan is still working on this but have bin labels that have the gluten-free checked tags too.

Milk is safe!

gluten-free pastas aren't that bad either.

get experimental with what you eat as a gluten eater and just replace the gluten items with the gluten-free items.....tastes are NOT that much different.

Corn or Rice chex are not gluten-free so eat those up!

There should also be gluten-free sections in your grocery store so don't be afraid to ask

You have the control as a consumer

I'm just not lucky with the breads yet.........but I have found gluten-free crackers!

Go to the forum of gluten-free shopping - there are alot of helpful hints there too!

You'll get thru it - Just have faith!

*hugs*

Tena

Tena

Its people like you that are a GOD sent!! Thanks so much for the valuable info. I have started shopping at Wegmens and they have a gluten-free section. I purchased some gluten-free vege crackers and they arent bad. Tonight... I am making a Lasagna with gluten-free pasta. God I hope its good and that I can eat. Hoping too the kids wont notice the different taste I am going to check out some of the other suggestions you gave me. How long before you , ONE started feeling better (or did this happen right away for you?) and TWO before you got the "hang" of this gluten-free life style? One other thing..... how has eating out in restaurants going for you? I'm nervous. Thanks so much. It means the world to a "newbie" like me to get the support and suggestions!!

Nanc

[tmbarke]

Hi Nanc,

I've been gluten-free since oct 13th

It was hard to deal with that first week for sure! The 'loss' was overwhelming but I knew I couldn't go on with my reactions anymore and be happy.

My first couple days I didn't really know what to eat so I did the research and came to this forum as well....just like you.

My first shopping trip was to Harvest Health Foods here in Grand Rapids - I was lost! What do I look for? Where do I find it? How am I supposed to make meals for weeks?

I asked the clerk about things and they acted like I was wasting their time! Yup! I felt like the FREAK that you may have read about in the forums.

My next shopping trip took me 3-1/2 hrs........granted I'm less than one week into this...hungry but feeling spirited and energetic.......symptoms started to diminish and I was amazed.

Then the withdrawls came on and they came on hard! I was messing up at work and walking around in a stupor - not able to focus on what I was doing but rather being led by some unseen force with a warped sense of humor....I also stated in one of the forums that I was so bad, "I could stop at a stop sign and wait for the light to change!" Now that's messed up!

It took just over a week for me to get thru the withdrawls to where they were tolerable. Then I got glutened on the 23rd......the salad with ham......not safe ham!

I felt like death for the remainder of that weekend! My neck swells and attacks my shoulder with such a twisting pain that it feels like someone stuck a screwdriver in it! I couldn't sleep and had an attitude from hell.

I still managed to go to the gluten-free event at our meijers store and they handed out a gluten-free list. YES!!!! I can shop now!

I bought a full cart of groceries in 1-1/2 hrs - quite an improvement from being blind reading.

Now I'm working with another store to submit a gluten-free list of their store brands cuz it's closer to my home.

Right now I'm not very trusting of others cooking........so I haven't went to a restaurant yet.

Although I hear that Carrabbas, Olive Garden, and Outback Steakhouse have gluten-free menus.

Right now it's just me and my brother so I don't go out to eat anymore but when I do, I'll pick one of those places.

If you know of any name brand products you like, add the www and the brand and .com to check out their site - I go to the FAQ's section and see what they answer to the 'Are your products gluten-free?'

They usually give a list of all the gluten free products they sell.

Always double check the labels - they should now start saying (contains soy) or (contains dairy) or gluten free.......but not all of them.

You'll start getting the hang of it soon - just check out the recipe and make it with gluten-free products.

Hope your lasagna is exceptional!

*HUGS*

Tena

[mamaw]

Hi Harley000

I replied to your other post.... but for this post I will add :

Not everyone heals the same & your body can go through period of feeling worse before it begins to get better. & start to heal. This did not happen overnight nor will it get better overnight. For us celiac people we have poisioned our systems for years not knowing that gluten was the devil. And most doctors are not much help...

I believe it is good to feel all the emotions & at times the pain because that is what will make you stronger & be able to think back on all the pain & emotion & say nope I'll never eat anything gluten again. It's not worth all the pain & emotion. Later you will see this as a great learning experience. Pain & emotion is what makes us who we a are & what we can become....

The journey is so worth it, to be healthy & happy once again.

I suggest taking a few steps (small) at a time to asborb & really know & feel comfortable with this , then move on to another step. This way it doesn't become so overwhelming...

You may want to eat only a few gluten-free foods for awhile to let your body adjust then in a few weeks add in a new item & take it slow . You may want to consider enzymes & or probiotics

In a recent seminar I attended a endo doctor gave some facts: people on the gluten-free diet for 1 year/ 62% not totally healed. 2yrs: 40% had not totally healed. 5Yrs: 1-10 still had not totally healed.

It does all fall into place in time. We all have been where you are at....

blessings

mamaw.

[Harley0000]

Hi Nanc,

I've been gluten-free since oct 13th

It was hard to deal with that first week for sure! The 'loss' was overwhelming but I knew I couldn't go on with my reactions anymore and be happy.

My first couple days I didn't really know what to eat so I did the research and came to this forum as well....just like you.

My first shopping trip was to Harvest Health Foods here in Grand Rapids - I was lost! What do I look for? Where do I find it? How am I supposed to make meals for weeks?

I asked the clerk about things and they acted like I was wasting their time! Yup! I felt like the FREAK that you may have read about in the forums.

My next shopping trip took me 3-1/2 hrs........granted I'm less than one week into this...hungry but feeling spirited and energetic.......symptoms started to diminish and I was amazed.

Then the withdrawls came on and they came on hard! I was messing up at work and walking around in a stupor - not able to focus on what I was doing but rather being led by some unseen force with a warped sense of humor....I also stated in one of the forums that I was so bad, "I could stop at a stop sign and wait for the light to change!" Now that's messed up!

It took just over a week for me to get thru the withdrawls to where they were tolerable. Then I got glutened on the 23rd......the salad with ham......not safe ham!

I felt like death for the remainder of that weekend! My neck swells and attacks my shoulder with such a twisting pain that it feels like someone stuck a screwdriver in it! I couldn't sleep and had an attitude from hell.

I still managed to go to the gluten-free event at our meijers store and they handed out a gluten-free list. YES!!!! I can shop now!

I bought a full cart of groceries in 1-1/2 hrs - quite an improvement from being blind reading.

Now I'm working with another store to submit a gluten-free list of their store brands cuz it's closer to my home.

Right now I'm not very trusting of others cooking........so I haven't went to a restaurant yet.

Although I hear that Carrabbas, Olive Garden, and Outback Steakhouse have gluten-free menus.

Right now it's just me and my brother so I don't go out to eat anymore but when I do, I'll pick one of those places.

If you know of any name brand products you like, add the www and the brand and .com to check out their site - I go to the FAQ's section and see what they answer to the 'Are your products gluten-free?'

They usually give a list of all the gluten free products they sell.

Always double check the labels - they should now start saying (contains soy) or (contains dairy) or gluten free.......but not all of them.

You'll start getting the hang of it soon - just check out the recipe and make it with gluten-free products.

Hope your lasagna is exceptional!

*HUGS*

Tena

HI Tena

Once again, thank you so much. You are very knowledgable about this already and that really gives me hope. I roped my husband into going grocery shopping with me and we even visited a health food /organic store and I was very impressed with the things I saw. They even had gluten-free donuts. I purchased several items--one of them being gluten-free pasta and although I could only eat a very small piece.... the Lasagna I made tonight was AWESOME and the kids didnt even notice a difference! I was really shocked but it inspired me that maybe this new way of life (although none of us would have chosen it) may be doable after all.

I have done many many hours of research and luckily people are more informed today than let's say 10 years ago. It seems like no one recognized this illness years ago.

I had heard that Olive Garden and Outback both have gluten-free menus. I must admit I immediately thought OMG I cant have the bloomin onion! I guess with practice and just getting used to the idea a little bit more, it will become easier. I actually think I am going to not try restaurants right away. I will probably be tempted to "cheat" and that is not good.

You mentioned "unsafe ham". I have heard that luncheon meat is not safe, but others say it is. I'm wondering if its just specific kinds? brands?

I was also amazed by the fact that celiacs affects your shoulder. I had/have a wicked sharp pain in my left rib cage 2 months or more, that feels horrible but has lessened since being gluten-free. I am finding out that I just keep finding new info on this and there is ALOT.

Thanks again

Nanc

[Harley0000]

Hi Harley000

I replied to your other post.... but for this post I will add :

Not everyone heals the same & your body can go through period of feeling worse before it begins to get better. & start to heal. This did not happen overnight nor will it get better overnight. For us celiac people we have poisioned our systems for years not knowing that gluten was the devil. And most doctors are not much help...

I believe it is good to feel all the emotions & at times the pain because that is what will make you stronger & be able to think back on all the pain & emotion & say nope I'll never eat anything gluten again. It's not worth all the pain & emotion. Later you will see this as a great learning experience. Pain & emotion is what makes us who we a are & what we can become....

The journey is so worth it, to be healthy & happy once again.

I suggest taking a few steps (small) at a time to asborb & really know & feel comfortable with this , then move on to another step. This way it doesn't become so overwhelming...

You may want to eat only a few gluten-free foods for awhile to let your body adjust then in a few weeks add in a new item & take it slow . You may want to consider enzymes & or probiotics

In a recent seminar I attended a endo doctor gave some facts: people on the gluten-free diet for 1 year/ 62% not totally healed. 2yrs: 40% had not totally healed. 5Yrs: 1-10 still had not totally healed.

It does all fall into place in time. We all have been where you are at....

blessings

mamaw.

mamaw,

Thanks so much for your reply. You made alot of good sense. I need to be patient and not expect immediate results. I'm not sure if a positive endoscopy that showed damage to the small intestine is maybe an indication that this has been coming on a long time or if a few months can damage it, but ur right... it didnt happen overnight!

I strongly beleive that what doesnt kill us only makes us stronger and this applies here kinda what you were saying. It will make me stronger! God help me.. this is quite the learning lesson..haha.

I am curious about what you said about easing into this. What was your experience with this, if you dont mind me asking? Did you take a while to introduce new foods and found that it worked well? I do find that WHEN I am able to eat... I am still choosing "safe foods" like carrots, apples or chicken breast. However: tonight I made lasagna with gluten-free pasta and it was really good and I basically couldnt tell the difference. Now THAT made me smile and gave me some encouragment. So maybe I grew a tiny amount in gluten-free knowledge/confidence tonight!

I am still having bad leg and foot cramps that I recently found out can go along with celiac disease, so I am taking potassium (which 3 weeks ago after a blood test was extremely low) and I do take Dr prescribed prescription Prilosec, would enzymes pr probiotics affect either of these?

I appreciate all the advice and support!

Nanc

[mamaw]

Hi Nanc

Some people who are very sensitive find it helps alot to eat a basic food group for a week or two then add in another food to make their gluten-free journey go a bit easy on their bodies. When I started & then my daughter & grandkids we all went fairly slow. It just helped our intestinal tract be less stressed.

I tend to lean on alternative things instead of drugs . I react to almost everything on this planet & drugs are some of the worse offenders. Enzymes & probiotics fall into the natural type & do no harm when taken as directed....

Wondrful that you made lasagne. My gluten part of my family can not ever tell the differnece in the gluten-free food they eat.. Five years ago they wouldn't touch it. gluten-free foods have come a long way...

If you enjoy baking Annalise Roberts has a wonderful cookbook called Baking CLassics. Well worth the buy......if you are craving something ask & I can point you in the right direction. I know most all the bakers/vendors......friends with many of them.

hth

mamaw

[Northern Celiac]

Tena

Its people like you that are a GOD sent!! Thanks so much for the valuable info. I have started shopping at Wegmens and they have a gluten-free section. I purchased some gluten-free vege crackers and they arent bad. Tonight... I am making a Lasagna with gluten-free pasta. God I hope its good and that I can eat. Hoping too the kids wont notice the different taste I am going to check out some of the other suggestions you gave me. How long before you , ONE started feeling better (or did this happen right away for you?) and TWO before you got the "hang" of this gluten-free life style? One other thing..... how has eating out in restaurants going for you? I'm nervous. Thanks so much. It means the world to a "newbie" like me to get the support and suggestions!!

Nanc

Hey there, don't give up it is quite q transition. There are tons of receipes and websites out there. One suggestion I have for you about lasagna tho. Don't precook the noodles, it works WAY better if you put them in dry and add a little water with your sauce. I have a severe case of celiac disease and I live by one Motto "WHEN IN DOUBT LEAVE IT OUT"..... I have glutened myself a couple of times since I was diagnosed in April of this year. Learn to read you labels is another peice of advice. Also don't be afraid of eating out but make sure you check in advance.

Then when you get there don't be afraid of questioning your server. And if they don't give you the answer you want get up and walk out. It's your health and it is a big deal, contrary to what some ppl have told me.

Best of luck

Mike

[tmbarke]

You mentioned "unsafe ham". I have heard that luncheon meat is not safe, but others say it is. I'm wondering if its just specific kinds? brands?

Thanks again

Nanc

Yes, certain lunchmeats are safe! I trust Hormel because it says gluten free on the box! I was also reading (but can't be positive) that Oscar Mayer lunch meats are safe - but best to check the website as I usually prefer what's on sale or my Meijer Brand lunch meats due to lower prices.

The ham that was in that salad was the pkg'd chunk style ham.

I've come to terms with gluten findings.........most every product has a gluten version and a gluten-free version........ham and turkey included.

It's a label reading or store listings or phone calls or email to a specific company that determines the choices you'll make.

Congrats on the lasagna! I found that with eating gluten free - regardless if it was a salad or a pasta, I could digest it easily and found myself experiencing less of the bloat and cramping and pain.

It took me 3 weeks to get where I am today......but it sure was a journey!!!!!

Good luck in your journey too - you're not alone here

[mamaw]

Here are a couple of other deli meat brands that are gluten-free. Boar's head & Dietz & Watson.

[Rothane]

We're entering Week 5 of gluten free.

I bought a copy of Cecelia's Gluten Free Grocery Guide, which helps where the Wegman's friendly yellow Gs leave off. It's small enough to carry in my purse.

We've been experimenting with cuisines that don't rely so much on wheat. We've had a lot of fun making Chinese, Korean, and Vietnamese food at home; as long as you make sure to get wheat-free condiments, like wheat-free soy sauce, hoisin, etc., the rest is very easy. Asian markets are great sources of all kinds of great rice, tapioca, and even sweet potato based noodles. I've also been looking into Mexican food; enchiladas were always a house favorite, and they still can be since the corn tortillas they sell at our local Wegmans are really corn tortillas, no wheat.

If you don't have one already, buy a rice cooker. You can buy an inexpensive one at Target for under $20 that makes nearly foolproof rice. If you get the under-$20 one (I think it's red), don't worry about their stupid measuring cup. Most rice bags will tell you the right proportions; most rice is a simple 2-to-1 ratio (2 cups water to 1 cup rice, for example) although one of the short-grained brown rices we use a lot is a 1-to-1. You can also do a ton of things with rice, such as rice stuffing for turkey, Spanish rice, saffron rice, etc.

Big-distribution companies are starting to wake up to gluten-free. Betty Crocker has started making gluten free mixes and I can tell you from personal experience that the brownies are amazing -- gluten free or not gluten free. Many Chex cereals are gluten free.

Since you have Wegmans, here are some other tips. The Wegmans frozen fries and hash browns are almost all gluten free, and baked up, they are almost as good as deep-fried. Their buffalo chicken wings are also "G" and better than most wings I've ever had anywhere. Their boxed soups and boxed stocks (chicken, beef, veggie, and Thai) are all G. Most of their salsas are G, and I've been told by them that they plan to make ALL their salsas G in the future. Take an afternoon just to tour the Wegmans and be amazed at the number of G-marked foods they have. They will make your gluten-free experience so much easier.

As far as their gluten-free section goes, they carry a good variety of Tinkyada pasta; the one cue I can give there with any non-wheat pastas is that they cook a bit differently. Make sure to put oil in the water and stir very, very frequently or they will stick more than semolina. Pay attention to the recommended times -- rice pasta in particular can go from too al dente to mushy a lot quicker. But if you catch it at the right time, it's nearly indistinguishible from "regular" pasta.

What part of New York do you live in? I'm in the Rochester area and the Rochester Celiac Society lists a lot of restaurants locally that have gluten free menus. Many chains have them; the Celiac Travel website has a good list of them, with links to their gluten free menus.

The key is not to focus on what you can't eat -- it's to focus on what you CAN eat and find creative and new ways to do those.

[Imanistj]

I live near Syracuse and Auburn and both have Wegmans. The larger the store, the better the selection. Wegmans has a list of their label foods that are gluten free. If you are willing to buy their generics the list is huge and is frequently updated. The current list came out on Nov. 2 and is 31 pages. I wish their stores had free wireless internet because those of us who have fancy cell phones or netbooks could use them in the store. I made this suggestion to Wegmans along with an alternate request that they place a dedicated computer terminal in their stores with the current list of their gluten free products. There has been no response to my suggestion. I own a laptop but not a a netbook or facny cell phone and I don't even know if a little netbook will hold 31 pages. Printer ink is expensive and I am not about to print out 30-plus pages every few weels. The best I can do for now is try to look up everything I want to buy on their list before I go to the store. I also carry Cecelia's Marketplace "Gluten-Free Grocery Shopping Guide" in my purse so I can check brands other than Wegmans. I do use Tinkyada pasta. I definitely can tell the difference between their products and semolina but I can tolerate it. There isabsolutely NO gluten-free substitute that I have tried, and I have tried many, that I find so good that I don't know the difference between it and the Real McCoy. I have been shot down so many times because someone has written on this or other forums that a scratch recipe, mix or ready-to-eat gluten-free product is really great, and may even be so good that others can't tell it is gluten-free. Phooey!!!! As I said, I can ALWAYS tell the difference. Maybe my taste buds are so sensitive I could become a taste tester for some company's quality control department And- if the tase of gluten-free doesn't bother me, the texture will. I have been on the gluten-free diet for only 4.5 weeks continuously--did it for three weeks back in August, but probably made some mistakes then as I was learning. I don't feel any better and I am very tempted to go back on a regular diet. However, I made a promise to myself that I would stay gluten-free until 1-1-10. I am utterly miserable because I have yet to be satisfied by any gluten-free baked good substitute. I have bought a small fortune's worth of alternate flours and mixes so, for the present, I will continue to try various recipes and products and hope for the best. Fortunately, I haven't had a problem changing (to gluten-free) my favorite soups, stews, roasts, etc. that I have cooked for years. gluten-free baked goods are an entirely different story.

[mamaw]

Have you been dx'd celiac? I'm confused why you are on the gluten-free diet in the first place if you plan on staying on it until Jan 2010? I'm guessing maybe you found reasons to try the gluten-free diet. It takes time to heal the intestinal tract so I would have to say four weeks is a very short period of time to expect complete healing. We had a doctor at a seminar give the facts on healing: 1 yr 62% not healed: 2 yrs, 40 % not healed: 5 yrs, 1-10 not healed. This doctor also has celiac.

I've been gluten-free for many years , am the founder of a gluten-free ministry & research many hours daily collecting & weeding out the fact & the hear-say that people write & post. I will not pass on incorrect infomation.

I do not know one person who has figured out everything about gluten-free in a month, it is ever changing ,new genes being found, new medical studies, new foods & so on.

Being gluten-free is a lifestyle ....

I will agree that nothing gluten-free will be exactly like a wheat based product but I will say some come very very close....I'm a taste tester & market the finer gluten-free products.

BiAglut pasta from Italy comes mighty close to a wheat pasta.Many others will agree with me. It is expensive & nothing gluten-free that is excellent comes cheap.

There are wonderful tasting gluten-free products available . When a person understands why the gluten-free foods are needed ( for health reasons) they also understand that it requires changing lifestyles..

If you are searching for a certain food ask & I'm sure someone will give you a heads up on where to buy it.

Please if you are trying gluten-free due to celiac or gluten intolerance , please stay on gluten-free to protect your health. Its the only way ....

blessings

mamaw

[Harley0000]

Hi Nanc

Some people who are very sensitive find it helps alot to eat a basic food group for a week or two then add in another food to make their gluten-free journey go a bit easy on their bodies. When I started & then my daughter & grandkids we all went fairly slow. It just helped our intestinal tract be less stressed.

I tend to lean on alternative things instead of drugs . I react to almost everything on this planet & drugs are some of the worse offenders. Enzymes & probiotics fall into the natural type & do no harm when taken as directed....

Wondrful that you made lasagne. My gluten part of my family can not ever tell the differnece in the gluten-free food they eat.. Five years ago they wouldn't touch it. gluten-free foods have come a long way...

If you enjoy baking Annalise Roberts has a wonderful cookbook called Baking CLassics. Well worth the buy......if you are craving something ask & I can point you in the right direction. I know most all the bakers/vendors......friends with many of them.

hth

mamaw

Mamaw

It makes perfect sense what you said about transitioning into this lifestyle. UNknowlingly I have put soo much "poison" in my body with tons of wheat and gluten based items that now (almost one and a half weeks gluten free my body is defintely reacting... but in a positive way.

I was happy with the lasagna although I did find one downfall.... I took it to work the next day to have a little piece for lunch and when you reheat it... umm.... it becomes this strange texture and got rather mushy. I just told myself it was like a lasgna oatmeal.. HAHA

Thanks for the advice again and as long as you dont mind, I may pick your brain from time to time if I get stuck. You seem to really know alot about this.

Thanks again

Nancy

[Harley0000]

Hey there, don't give up it is quite q transition. There are tons of receipes and websites out there. One suggestion I have for you about lasagna tho. Don't precook the noodles, it works WAY better if you put them in dry and add a little water with your sauce. I have a severe case of celiac disease and I live by one Motto "WHEN IN DOUBT LEAVE IT OUT"..... I have glutened myself a couple of times since I was diagnosed in April of this year. Learn to read you labels is another peice of advice. Also don't be afraid of eating out but make sure you check in advance.

Then when you get there don't be afraid of questioning your server. And if they don't give you the answer you want get up and walk out. It's your health and it is a big deal, contrary to what some ppl have told me.

Best of luck

Mike

HI Mike

Thanks so much for the lasagna tip. I will try that next time. When I reheated the lasagna for lunch the next day it was quite mushy, so maybe your tip would make it taste better even the next day.

I am learning that the only sure fire way to keep this in check is just read read read labels.

I am wondering how I will do the first time I go to a restaurant. I have heard that some servers will work with you and by really helpful, so thats the mind set I have to stay in... Boy o boy... what a life changing thing this Celiacs is but I have faith.... I'll get the hang of it..

Take care

Nancy

[Harley0000]

Yes, certain lunchmeats are safe! I trust Hormel because it says gluten free on the box! I was also reading (but can't be positive) that Oscar Mayer lunch meats are safe - but best to check the website as I usually prefer what's on sale or my Meijer Brand lunch meats due to lower prices.

The ham that was in that salad was the pkg'd chunk style ham.

I've come to terms with gluten findings.........most every product has a gluten version and a gluten-free version........ham and turkey included.

It's a label reading or store listings or phone calls or email to a specific company that determines the choices you'll make.

Congrats on the lasagna! I found that with eating gluten free - regardless if it was a salad or a pasta, I could digest it easily and found myself experiencing less of the bloat and cramping and pain.

It took me 3 weeks to get where I am today......but it sure was a journey!!!!!

Good luck in your journey too - you're not alone here

Thats good to know about the lunch meat. I have been craving a big old chef salad and of course its got chunks of lunchmeat in it.

The lasagna: LOL.. I was really impressed and the first night I made it COULD NOT tell the difference, however the next day reheating it turned it to mush, but it was a lesson learned. Someone suggested not cooking the noodles prior to baking the lasagna, so I will give that a try.

My weekend plans: To make some kind of gluten free goodie... either banana bread or just good old fashioned CC cookies I'm making myself hungry now..HAHA

Thanks for the encouraging words and support!

Nancy

[Harley0000]

We're entering Week 5 of gluten free.

I bought a copy of Cecelia's Gluten Free Grocery Guide, which helps where the Wegman's friendly yellow Gs leave off. It's small enough to carry in my purse.

We've been experimenting with cuisines that don't rely so much on wheat. We've had a lot of fun making Chinese, Korean, and Vietnamese food at home; as long as you make sure to get wheat-free condiments, like wheat-free soy sauce, hoisin, etc., the rest is very easy. Asian markets are great sources of all kinds of great rice, tapioca, and even sweet potato based noodles. I've also been looking into Mexican food; enchiladas were always a house favorite, and they still can be since the corn tortillas they sell at our local Wegmans are really corn tortillas, no wheat.

If you don't have one already, buy a rice cooker. You can buy an inexpensive one at Target for under $20 that makes nearly foolproof rice. If you get the under-$20 one (I think it's red), don't worry about their stupid measuring cup. Most rice bags will tell you the right proportions; most rice is a simple 2-to-1 ratio (2 cups water to 1 cup rice, for example) although one of the short-grained brown rices we use a lot is a 1-to-1. You can also do a ton of things with rice, such as rice stuffing for turkey, Spanish rice, saffron rice, etc.

Big-distribution companies are starting to wake up to gluten-free. Betty Crocker has started making gluten free mixes and I can tell you from personal experience that the brownies are amazing -- gluten free or not gluten free. Many Chex cereals are gluten free.

Since you have Wegmans, here are some other tips. The Wegmans frozen fries and hash browns are almost all gluten free, and baked up, they are almost as good as deep-fried. Their buffalo chicken wings are also "G" and better than most wings I've ever had anywhere. Their boxed soups and boxed stocks (chicken, beef, veggie, and Thai) are all G. Most of their salsas are G, and I've been told by them that they plan to make ALL their salsas G in the future. Take an afternoon just to tour the Wegmans and be amazed at the number of G-marked foods they have. They will make your gluten-free experience so much easier.

As far as their gluten-free section goes, they carry a good variety of Tinkyada pasta; the one cue I can give there with any non-wheat pastas is that they cook a bit differently. Make sure to put oil in the water and stir very, very frequently or they will stick more than semolina. Pay attention to the recommended times -- rice pasta in particular can go from too al dente to mushy a lot quicker. But if you catch it at the right time, it's nearly indistinguishible from "regular" pasta.

What part of New York do you live in? I'm in the Rochester area and the Rochester Celiac Society lists a lot of restaurants locally that have gluten free menus. Many chains have them; the Celiac Travel website has a good list of them, with links to their gluten free menus.

The key is not to focus on what you can't eat -- it's to focus on what you CAN eat and find creative and new ways to do those.

Hello~

I love mexican food and when I figure out what tortilla shells are corn and safe... that shall be one of my next quests.... making something mexican.... mmmm.mmmm.

The rice maker?? Dont laugh... but do you use it just to cook rice? Up until now.... I dont beleive I have ever heard of a rice cooker... I'm curious.. and seeing how rice will probably become one of my new best friends... i should know about these things...

I am near the Corning area and our Wegmens has an organic section and gluten-free. I have been browsing alot in that area but did notice that Wegmens brands all say gluten-free right on them if they are. Thats pretty convienent. Kudos to Wegmens!!

Your last sentence is what I have been saying to myself over and over and I have had a few really good days and am happy to report..... slowing starting to actually feel the good part of being gluten-free!!

[KristenB]

Hi Harley --

I was diagnosed with celiac disease in August 09 -- a blood test early in the month, followed by positive endoscopy on Aug. 31. Although I did a lot of reading in the couple of weeks leading up to the endoscopy, I missed the part about gluten withdrawal. I felt awful before the diagnosis, and still felt awful after going gluten-free. It was a very frustrating time, as I had expected immediate improvement, and it just didn't happen. HOWEVER, the good news is: after about 7-8 weeks, I finally felt that I was turning the corner. I continue to feel bad more than good, but at least I have times that I feel good!

K

[Imanistj]

Hi mamaw--

Yesterday I submitted a long post explaining why I don't know if I will stay on the gluten-free diet. It hasn't been posted--maybe I am waiting for it to be pinned? Anyway, as briefly as I can make my response to you, I am not completely confident in my gastroenterologist/hepatologist. I have tested positive for transglutaminase and my doc says that, by itself, is enough to make a diagnosis of celiac. However, I read an article from a Chicago MD who disagrees and says the biopsy is the only way to be certain. My genetic tests show I have both HLA DQ2 and DQ8 and I am told I have the genes for the "worst kind" of celiac. My biopsies are totally clear and he took four biopsies from different sites in my SB. When I first saw my doc, because I had tested positive for autoimmune liver disease, he did some tests and said I was anemic, had a low B 12 and should take supplements. A month on these and both tests were normal. My liver tests have always been normal and they still are. The positive test for liver disease was turned up by my fibromyalgia doc when he ran tests for conditions that cause inflammation. I asked the celiac doc (he is also a hepatologist) if I really do have autoimmune liver disease and he checked my chart and thought for a while and then said I probably have a "marker" for the condition. There are more things I would like to include but it would take a couple pages. I don't have the classic celiac symptoms and don't feel any better, so far, on the gluten-free diet. Add to that the fact that I have been disappointed by all the gluten-free baked goods I have tried, and I don't have a lot of motivation to stay on the diet. I asked this doc if I test positive for transglutaminase, have lousy genes, and absolutely zero pathology in my small bowel, and since I don't have the terrible sprue-like abdominal symptoms, what am I damaging when I eat gluten. He said NOTHING!!! Can you blame me for vacillating on the gluten-free diet issue? I would very much like to go to Columbia in NYC or Beth Israel in Boston for a second opinion. The problem is I am on Medicare and AARP (I'm 65) and I can't risk having any test or consult cost denied. Oh, I am a retired RN and I do comprehend the need for a gluten-free diet for life--in patients who have a clear diagnosis or have bad genes. But I have made it to 65.5 with no damage and maybe I will die of something else before the small bowel is attacked. I am such a foodie it would be a shame if the disease doesn't really kick in for a few years but I have been unhappy with my diet all that time for nothing. I am terribly conflicted and that is why I have made the decision to remain on the diet until the first of the year. If I still don't feel better I may go back on gluten, wait a few months, and then take the financial risk and go to either NYC or Boston. In the meantime, my current doc ordered some labs to be drawn every 6 months and told me to come back in six months.

So, do I have a diagnosis of celiac disease?

Please, all of you people who are on the gluten-free diet, I am not trying to discourage anybody and I am happy for those of you who can adjust to the gluten-free diet without being miserable. My misery is personal because I must have the most refined taste buds in the entire world. I will continue to test more gluten-free baked goods recipes and mixes.

[tarnalberry]

There isabsolutely NO gluten-free substitute that I have tried, and I have tried many, that I find so good that I don't know the difference between it and the Real McCoy. I have been shot down so many times because someone has written on this or other forums that a scratch recipe, mix or ready-to-eat gluten-free product is really great, and may even be so good that others can't tell it is gluten-free. Phooey!!!! As I said, I can ALWAYS tell the difference.

Honestly, I think it's a mistake to try to "replace" the stuff you miss. You're right - wheat tastes like wheat, and no combination of rice, potato, tapioca, teff, millet, quinoa, amaranth, sorgum, flax, nut, etc. flour will taste like wheat. If you EXPECT to make wheat bread out of non wheat ingredients, you're going to be disappointed.

I would encourage you to stop trying to find things that "don't taste gluten free", to just find foods that taste fine - for what they are. Does cow's milk yogurt taste the most like "yogurt"? Sure, because that's what we, culturally, are used to. That's what we expect. But if you can't have cow's milk yogurt, does soy yogurt, or coconut yogurt, taste ok? Not "does it taste like yogurt", but "does it taste good on it's own"? (And yeah, sometimes the answer is no. We move on. I've *never* found a cheese substitute that I can eat like cheese - straight up. I've found one that melts ok for a pizza, but it still doesn't taste like mozzarella. Doesn't really matter as the pizza, all together, still tastes good. So I don't get to eat "cheese" on it's own any more. Oh well.)

[Imanistj]

I found the long version of my gluten-free dilemma. It is titled Totally Confused and is in the Pre Diagnosis Testing and Symptoms section. If-- anyone should want to read more about my weird journey through the celiac world

[mamaw]

Hi Nancy

Thanks for your post. I too am a senior in years but young at heart!!!!

I'm not surprised at your doctors response or lack of. Most still today do not understand celiac or even more gluten sensitivity. There are more gluten sensitive in the world than celiac. It is very sad.....

I have a brother who at age 68 , never been sick in his life but had some bloat & gas. He just lost 24 inches of his small intestine .Still he will not follow the diet. He feels it is to pricey . I've cried & ranted until I'm all cried & ranted out so I figure he will die because of stubboness.

We all have choices in life we have to make. If you decide not to follow the gluten-free lifestyle that is your choice. I will say with your history & a 2 & a 8 I would be very thankful to follow the gluten-free lifestyle....for me it is so much better than having chemo, a rash of drugs or other things that other illness' entail.

I think I said as well as Tarnalberry that nothing will ever be wheat that is not wheat. For me I loved to eat as well & the good stuff. Food was my life , I baked & cooked from scratch all my life. I understand but I was open to challenging myself for a more healthy lifestyle. It was not easy at first & I finally had to throw out everything in my house & pretend I was in a foreign country without the food staples I always used. So , if I wante dto eat I had to relearn my whole food world over again. That was the only way I could figure out how to do it & stick with it. I guess mind over matter. I was angry , sad , hurt & confused but as I did one thing at a time I began to see light& that this could & would work. My daughter & grandkids also had to be gluten-free so that kicked up my skills a notch because I didn't want at the time my two year old grandkid missing out on junk food! Years later my family all mostly at gluten-free & never complain not dislike the gluten-free food. Many of them do not have to be gluten-free. I repair for about 8 each day.

I think I already gave you stats from a doctor on healing times...

I as well as you have many autoimmune disorders . For you not seeing or feeling symptoms....it is wonderful that you do not have villi damage, a plus.... I would consider that a lucky person that they got dx'd before any damage. You very well could finish out life with nothing ever coming of celiac but again you could wake up someday & find you have a terrible pain or bleeding. What then if it turns out to be from not following a gluten-free diet? Are you okay with having that happen & know that you could have not had this if only you had followed a gluten-free diet? I guess I'm not a risk taker....again a choice you must think about & make for yourself.

I have a person in my group who is older & the only thing that happens to them is when they eat gluten they get anemic. They were totally floored when they found out it was from gluten that the condition rears its ugly head.

What type of sweets are you looking to find gluten-free, maybe I have a recipe or can lead you to a cream of the crop counterpart that you could try to love....

We honestly missed the greasy pizza hut pizza ! Now if we want to clog our arteries I add olive oil to the pan before making my pizza! We have truly found a healthier way of food eating since on the gluten-free lifestyle.

I'll be glad to help you in any way I can......remember there is a lot of things way worse to give up besides food... life itself.......

god bless

mamaw

[Harley0000]

Hi Harley --

I was diagnosed with celiac disease in August 09 -- a blood test early in the month, followed by positive endoscopy on Aug. 31. Although I did a lot of reading in the couple of weeks leading up to the endoscopy, I missed the part about gluten withdrawal. I felt awful before the diagnosis, and still felt awful after going gluten-free. It was a very frustrating time, as I had expected immediate improvement, and it just didn't happen. HOWEVER, the good news is: after about 7-8 weeks, I finally felt that I was turning the corner. I continue to feel bad more than good, but at least I have times that I feel good!

K

Hi Kristen

Its good that you have started to feel better...finally. It really is frustrating when you seem to be doing everything right and you still feel bad. Sometimes I think maybe I should just say the he** with the positive diagnosis and eat what I want (since I;m feeling bad anyways) but then the rational logical voice deep in my head says " DOnt be stupid..this could kill ya"... so alas I make it thru another gluten free day. I have good days (physically feeling better, then a bad day will creep in). Hope I'm not getting too personal but I have noticed that I cant go to the bathroom nearly as easily as I used to! UGH!! Thats really not good, but I guess my body is just making a huge adjustment!!!

Nancy

[Imanistj]

Being an RN for 28.5 years was my second career, I was first a public school music teacher. I spent most of my nursing time in the acute side of the hospital, but I did go to the nursing home as a supervisor for about five years toward the end of my career. I never took care of even one celiac patient! I was a pediatric nurse for the first 13 years and I'll bet I did have some celiac babies. We would get in some very sick babies to be evaluated for failure to thrive. If they didn't improve we transferred them to Syracuse or Rochester for the benefits of large teaching hospitals. My friends are also retired nurses and they don't know much about celiac either. This is an interesting time with so many people being diagnosed in such a short period.

As a nurse I saw many diabetics ignore their special diets. Uncontrolled diabetics face horrible complications like amputation and blindness but many, if not most of them choose food over health. Maybe they are natural gamblers. I became diabetic about five years ago and my oral medication keeps my blood glucose well controlled even though I am not careful about what I eat. I am lab tested every three months and do a finger stick every morning. For now, these tests are always good and I am not following the diabetic diet, although I dodn't go crazy with candy and deserts. I am fortunate that I don't object to the taste of artificial sweeteners. I wonder if there are people out there with celiac disease who don't get terribly sick from gluten and continue to eat whatever they want. I wonder how many people who join a forum like this try for a while and then decide to take the discomfort and eat as they please. In some ways I wish I did have severe pain and diarrhea because then I wouldn't have any choice in the matter. Even more, I wish I had a clear cut diagnosis that would make denial impossible. In every aspect of my life I am very cautious and never a gambler. I have never even bought a lottery ticket. But--food has controlled me all my life. I was a fat kindergartener and I am now a fat old lady. Since I became diabetic I have been far more aware of what I eat and I have lost 55 pounds over five years. I am almost back into regular sizes and I weigh myself every morning. Vanity, more than common sense contributes to my slightly alive will power. I am annoyed that gluten-free baked goods use tons of butter or oil and eggs. I wonder what my cholesterol and triglycerides will be when I am next tested. I really do bbeliev that if I could find a bread that is acceptable, to me, I could cut out other baked goods. All I want is a slice of toast with peanut butter and jelly for breakfast and two more slices so I can have a sandwich lunch. I don't want to cook two "meals" every day and I want the freedom to pack a sandwich and leave the house for more than about three hours without figuring out what I can eat when the next mealtime arrives.

At this time I'm just not sure I have celiac disease. I need proof, in black and white. I need hard evidence before I am convinced about anything. That's part of being an ISTJ personality and maybe also part of Asperger's. I can't stand not knowing and my next appointment, in May, is an eternity. Years ago both my brother and I tested positive for lupus, but we never really had it. Now, I have tested positive for autoimmune liver disease, but I don't have it. I am tormented with the question if the positive transglutaminase is just another autoimmune false alarm.