Wife Of Celiac - Just Found Out Today Hubby Has It.

[QanQan]

Just found out today from an upper Gi that my husband has Celiac disease. The doctor had been suspect but the test today solidifed his diagnosis.

I am trying to educate myself as much as possible because I am also 9 months pregnant and worried my little one might be positive.

Just went to the supermarket today with a helpful list one of the users here provided, and bought some gluten-free pasta and waffles ( I am happy that Aunt Jemima syrup is gluten-free)

My husband is taking it very well - as he was a major carb freak before he found out he had Celiacs. However, we are both thrilled that we now know the reason behind his rapid weight loss - he was literally wasting away.

Just have some general questions for any users that might know answers to:

Are most cold cuts that are sliced fresh at the deli safe?

Is it really imperative that I buy all new teflon and utensils for him? I am worried he will think I am taking it too far and think him contagious or something.

He has a job that takes alot from him physically (construction) - anyone have any tips on meals that might give him an extra boost at work? Pasta used to be his favorite - but not sure if the gluten-free kind have the same punch as regular pasta.

Any help or advice is really appreciated. This is a great forum and has been a lifesaver.

-K

[QanQan]

Just found out today from an upper Gi that my husband has Celiac disease. The doctor had been suspect but the test today solidifed his diagnosis.

I am trying to educate myself as much as possible because I am also 9 months pregnant and worried my little one might be positive.

Just went to the supermarket today with a helpful list one of the users here provided, and bought some gluten-free pasta and waffles ( I am happy that Aunt Jemima syrup is gluten-free)

My husband is taking it very well - as he was a major carb freak before he found out he had Celiacs. However, we are both thrilled that we now know the reason behind his rapid weight loss - he was literally wasting away.

Just have some general questions for any users that might know answers to:

Are most cold cuts that are sliced fresh at the deli safe?

Is it really imperative that I buy all new teflon and utensils for him? I am worried he will think I am taking it too far and think him contagious or something.

He has a job that takes alot from him physically (construction) - anyone have any tips on meals that might give him an extra boost at work? Pasta used to be his favorite - but not sure if the gluten-free kind have the same punch as regular pasta.

Any help or advice is really appreciated. This is a great forum and has been a lifesaver.

-K

[MySuicidalTurtle]

That is great that he was diagnosed, K. If your kid has Celiacs oh well, right? It is better to know when you are young and it is not all that bad to follow the diet plus it your kid will not have to suffer for years. Not all deli cuts are safe and some gluten-free pasta is delicious. The recipe section of this site has a lot of yummie ideas for lunches. When starting on this diet it is better to stick to the natural gluten-free stuff, meats, veggies, and fruit, while getting used to figuing out just what gluten-free is. Good luck to your family!

[russell]

Just found out today from an upper Gi that my husband has Celiac disease. The doctor had been suspect but the test today solidifed his diagnosis.

I am trying to educate myself as much as possible because I am also 9 months pregnant and worried my little one might be positive.

Just went to the supermarket today with a helpful list one of the users here provided, and bought some gluten-free pasta and waffles ( I am happy that Aunt Jemima syrup is gluten-free)

My husband is taking it very well - as he was a major carb freak before he found out he had Celiacs. However, we are both thrilled that we now know the reason behind his rapid weight loss - he was literally wasting away.

Just have some general questions for any users that might know answers to:

Are most cold cuts that are sliced fresh at the deli safe?

Is it really imperative that I buy all new teflon and utensils for him? I am worried he will think I am taking it too far and think him contagious or something.

He has a job that takes alot from him physically (construction) - anyone have any tips on meals that might give him an extra boost at work? Pasta used to be his favorite - but not sure if the gluten-free kind have the same punch as regular pasta.

Any help or advice is really appreciated. This is a great forum and has been a lifesaver.

-K

[happygirl]

Welcome to the board!

Try finding Tinkyada's rice pastas. Most of them are brown rice pastas, so they are very health and nutritious. www.tinkyada.com Many grocery stores, health food stores, or places like Wegman's, Trader Joe's, Whole Foods carry them. I am the only Celiac in the house, and my husband and I both eat them....as well as our extended families when we are all together. This should be a great substitute! I have tried other brands, and I think that the majority of this board will agree that it is great and the best one out there. I couldn't live without it.

Celiac does have a genetic link, but just because one person has it doesn't mean that everyone else will. That being said, having a family member with Celiac increases first degree relatives' chances of having it. Keep in mind, that Celiac can appear at ANY point, so your child *could* get it very young, teenager, young adult....or never. Some families have multiple Celiacs, others have one. The genes that account for about 98% of Celiacs are HLA DQ2 and HLA DQ8. (You could have your child tested to see if he/she has one of the genes, so that you know if it could be a possibility. Your doctor can order the blood test).

The best advice I can give you/your husbad is to assume that EVERYTHING has gluten in it. Do not eat anything unless you know what the ingredients are. Only eat it if you KNOW it is safe. It is not worth risking it by saying, "Oh I'm sure its okay." Its hard to categorize "whole" groups of products like lunch meat. You have to read the ingredients of everything that goes into your mouth. You can take every different variety of processed foods (say, Caesar dressing, lunch meat, dip, etc) and compare them all....(all lunch meats), and things that taste the exact same can be varied as to if they were gluten free or not.

Now, there are the "obvious" things that contain gluten. Regular pasta, croutons, breading, donuts, all regular breads, flour, etc. After that, you have to find which products are safe.

Let us know what we can do to help!

[par18]

Hi and welcome,

As for the deli we usually get Boar's Head brand but you could contact the different vendors (phone or e-mail) and find out which items they produce are gluten free. I have yet to contact any vendor who could not answer this question.

We replaced very few kitchen items relying on cleaning. What we did do was make the kitchen gluten-free from day one since I like your husband was "wasting away". I know this may not be an option for some but we think it speeded up my recovery.

The bread and pasta I have been eating is the "Glutino" brand. It is from Canada and is in my local health food store in addition to a local grocery chain.

I read very few labels now as most of my diet consists of naturally gluten free food (meats, fruits, veggies, nuts, eggs, and dairy among others). About the only substitute items we get are the bread, pasta, and waffles. Hope this helps.

Tom

[happygirl]

I merged two topics together, so that they would be together and get more responses.

[JayT]

I am not sure where you live but there are support groups all around the country. I run a support group for central Ohio and the Celiac Disease Foundation. So even if you are not in Ohio, feel free to contact me, especially with questions about "what can I eat?"

-Jay

[VegasCeliacBuckeye]

1. Are most cold cuts that are sliced fresh at the deli safe?

- Personally, I do not buy cold cuts that the deli guy slices. The chance for cross contamination is too high. There are many deli meats that are gluten free (as always read labels). I eat Carl Buddig deli selects, hill shire farms deli meats and even good ol fashioned Oscar Meyer Bologna. Most ham is ok (except for Farmer John). I eat ham all the time.

2. Is it really imperative that I buy all new teflon and utensils for him? I am worried he will think I am taking it too far and think him contagious or something.

-- If its teflon, I think a good cleaning should be ok. If its wooden utensils, toss them out or get him his own pair. Cast Iron pans also should be avoided for him. I have my own utensils - it just makes me feel at ease. Make sure you clean ther grill if you have ever put buns on there. Also, you might want to grill his food on some alumninum foil until the grill is thoroughly clean.

3. He has a job that takes alot from him physically (construction) - anyone have any tips on meals that might give him an extra boost at work? Pasta used to be his favorite - but not sure if the gluten-free kind have the same punch as regular pasta.

-- Purchase Tinkyada pasta. It tastes like regular pasta and is nutritous and has plenty of carbs (and fiber). I think almost all of the other pastas are pretty bad, so I ONLY BUY tinkyada. You can make the decision (or he can). I also eat plenty ofn regular rice and brown rice. Its a great Carb that can fil you up and keep you moving. Corn tortillas are also a good source (Mission).

Dinty Moore beef stew is gluten free (shocking, I know), so that will help hi with some heartier meals if he has access to a microwave.

Also, Hormel has a gluten free list on their website for their meats and canned items. It was extremely helpful to me in the beginning, so does Frito Lay.

Hope this helps

BB

[QanQan]

Thank you all so much. The tips are all so helpful, especially what to look for in the regular food aisles.

I have been scouring my cupboards and checking to see what is gluten-free and what isn't. If I have any doubts, they arent being served to him. It's scary to see the one you love looking emaciated. I can't wait to get some flesh back in his cheekbones!

[kbtoyssni]

Welcome!

My husband is taking it very well - as he was a major carb freak before he found out he had Celiacs. However, we are both thrilled that we now know the reason behind his rapid weight loss - he was literally wasting away.

-I used to be a carb freak pre-diagnosis. I craved carbs. Gluten is addictive when you have celiac, though, it's lik having a drug addiction. I found as soon as I went gluten-free, the cravings went away so this may also happen to your husband.

Are most cold cuts that are sliced fresh at the deli safe?

-If there is just one meat at the deli that isn't gluten-free, then the slicer will be contaminated. I wouldn't buy deli meat. If you want sandwich meat, Oscar Meyer and Hormel are gluten-free.

Is it really imperative that I buy all new teflon and utensils for him?

-I would replace all scratched pans, wooden spoons/cutting boards, the toaster, pans with hard-to-clean corners and collenders.

He has a job that takes alot from him physically (construction) - anyone have any tips on meals that might give him an extra boost at work? Pasta used to be his favorite - but not sure if the gluten-free kind have the same punch as regular pasta.

-I think gluten-free pasta is just as filling as wheat. Rice pasta from the asian section of a grocery store can be pretty cheap. I also like DeBois brand pasta in the blue box (it's almost sacreligious to say this around here, but I like DeBois better than Tinkyada!) For my lunches I like to take leftover pasta or chili. I also like baked potato or rice with salsa and cheese. And rice cakes with PB or cheese. I even make scrambled eggs, but those aren't as filling.

[smertins]

Hi K!

My husband was also just diagnosed, this past Monday. I'd love to compare notes sometime.

Another question to pose. When his doctor called him, he said his count was 28, compared to 5 for a normal person, and 300 for a severly gluten intolerant person. What do these numbers mean? Is this a blood count of some sort? I can't seem to find anything online about this.

Thanks

Sabrina

[bhart]

Hi K!

My husband was also just diagnosed, this past Monday. I'd love to compare notes sometime.

Another question to pose. When his doctor called him, he said his count was 28, compared to 5 for a normal person, and 300 for a severly gluten intolerant person. What do these numbers mean? Is this a blood count of some sort? I can't seem to find anything online about this.

Thanks

Sabrina

[bhart]

OK, let me try this again--and actually send the message this time!

My husband was diagnosed with Celiac on July 21, 2006--I remember because it was my birthday! He, too, was "wasted"--skinny as a rail, and his face was the same color as his white beard. He couldn't walk 100 feet without chest pain and he thought he must be dying from something. He was very depressed and "foggy." He sat in his chair all day and watched TV. He had almost no other symptoms--but he was very anemic, which was what got his doctor's attention--finally. The lack of blood was straining his heart--probably would have had a heart attack had we kept on going. Believe me, I didn't know whether to feel sorrier for him or me that day! I am still working at 66, the kids are gone, and I had gradually pretty much given up cooking. I was too busy to change my life--it wasn't fair. And what about the traveling we had been dreaming about for years? I might as well have had celiac myself.

Today he is pink-cheeked, gained his weight back, walks five miles up and down hills with no problems, and is full of vim and vinegar--what a handful he is! It's like being married all over again to the man I knew 20 years ago. Sometimes I listen to him laughing and am astonished that I hadn't noticed that he'd stopped. I went through all the trauma you're experiencing--what to eat and not eat, what to throw out and buy new, and scared to death to eat in a restaurant. I made the world's hardest loaf of brick bread.

We now have a gluten-free house and eat very well. I remembered how to cook and I bake a lot. Our good friends and family try to accommodate us. We are very, very careful because his symptoms are "silent" and we wouldn't know if he was glutened--except for what it does to his insides. I take our own food to potlucks, parties, and sometimes even to a restaurant. And this summer we are going to Africa. (We're still figuring out how all that will work.)

The forum has been a life-saver to me. I've learned something every day. I am so grateful for the people on here who share their struggles and answer the same questions over and over. Sorry for the long post--I've not replied before, but I just wanted you to know there's light at the end of the tunnel. You'll get there and it won't seem so difficult someday.

[shanbr]

I don't have celiac disease but another health problem that requires limiting my gluten. My husband has also taking to it just as well, we started this week.

We still get our tacos, we still get our pastas (he cooks his pasta and mine separate and then share gluten free sauce). It isn't too hard to do, but if you are eaters of restaurants outside of the home, it can be very very hard.

If you must eat gluten out once a few months or something for a work get together, find the items with the limited amount of sauce etc. Stick to chicken only meal with a side of vegies with no sauce or seasoning but salt etc. Most restaurants will help you with this situation.

My father has a horrible celiac disease, very horrible version and rare. But once in a full moon he nit picks through a restaurant menu and makes his own dish. Sure it is cooked on a gluten stove and expected for that, but it limits how much he does take in.

I wish you well and hope for the best for you.

[NoGluGirl]

Just found out today from an upper Gi that my husband has Celiac disease. The doctor had been suspect but the test today solidifed his diagnosis.

I am trying to educate myself as much as possible because I am also 9 months pregnant and worried my little one might be positive.

Just went to the supermarket today with a helpful list one of the users here provided, and bought some gluten-free pasta and waffles ( I am happy that Aunt Jemima syrup is gluten-free)

My husband is taking it very well - as he was a major carb freak before he found out he had Celiacs. However, we are both thrilled that we now know the reason behind his rapid weight loss - he was literally wasting away.

Just have some general questions for any users that might know answers to:

Are most cold cuts that are sliced fresh at the deli safe?

Is it really imperative that I buy all new teflon and utensils for him? I am worried he will think I am taking it too far and think him contagious or something.

He has a job that takes alot from him physically (construction) - anyone have any tips on meals that might give him an extra boost at work? Pasta used to be his favorite - but not sure if the gluten-free kind have the same punch as regular pasta.

Any help or advice is really appreciated. This is a great forum and has been a lifesaver.

-K

Dear QanQan,

Good news! I have a great beginner's list I created. It saves you the agony and exhaustion I went through the first six months. This is daunting. The diagnosis is a relief, until you realize the huge changes you have to make.

I have a list that should really help. This is overwhelming. I went through this with myself six months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margerine

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip

Philadelphia Cream Cheese

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)

Snack Foods:

Fritos

Tostitos

Lay's Original Potato Chips

Cool Ranch Doritos (Nacho cheese has gluten)

Act II Microwave Popcorn

Cheetos

3 Musketeers candy bars

Butterfinger candy bars

Reese's Peanut Butter Cups

Meat and Protein :

Eggs

Great Value Frozen Boneless, Skinless Chicken Breasts

Extra Lean ground beef

Carl Buddig lunchmeats all are safe

Johnsonville Original Bratwursts

Kraft Cheese Shredded or sliced (Kraft is a great company, they never hide gluten in their labels. If it does not say wheat, barley, oats or rye, then it is not in there!)

Cereals:

Cocoa Pebbles

Fruity Pebbles

Dora The Explorer Cinnamon Stars

Seasonings:

Durkee Cinnamon-ground

Durkee Ginger-ground

Durkee Chili powder

Durkee Vanilla Extract (in fact, all of their liquid flavorings, food colorings, and extracts are g.f.)

Emeril's Essence - Asian, Italian

Ortega Taco Seasoning (In fact, since they are under a very strict labeling policy, all of their products are gluten free at this time)

Miscellaneous:

Ortega Taco Shells

Starkist or Great Value Tuna

Butter Buds

Great Value Soy Milk

Lettuce

Tomatoes

Apples

Pears

Carrots

Great Value Canned Fruits and Vegetables

Del Monte Canned Fruits and Vegetables

Ore Ida Tater Tots

Ore Ida French Fries

Hormel Chili

Hormel Spam

Hormel Turkey Spam (Oven Roasted and Smoked)

Hormel Beef Au Jus Entree

Hormel Pork Au Jus Entree

Jimmy Dean Fresh Taste Fast Sausage (links, rolls, and patties)

Plumrose Bacon

PAM Non-Stick Cooking Spray (all except for PAM for baking; it has flour)

Beverages:

Coca-Cola (Diet, Regular, Vanilla, Caffeine Free)

Diet Rite

Folgers Coffees (all including Cappuccinos)

Luzianne Tea (We get decaf)

Arizona Teas

Ocean Spray Cranberry Juice

Some Household Items that are safe include:

Cascade Dishwashing Detergent

All Laundry Detergent

Wisk Laundry Detergent

Dawn Dish Soap (all including the Power Disolver)

SoftSoap Hand Soaps

Murphy's Oil Soap

Hygiene, Cosmetics, and Beauty Items:

Dove Soaps, Shampoos, Conditioners, Lotions, and Styling Aids (Will clearly label gluten if present)

Crest Whitening Expressions Toothpastes

Colgate Toothpastes

Suave Soaps, Shampoos, Conditioners, Lotions, and Styling Aids (Will clearly label gluten if present)

Maybelline (Gluten is clearly labeled when present)

CoverGirl (Gluten is clearly labeled when present)

Wet'n Wild (All except for one of the mascaras)

Olay Quench Body Lotion

Crest WhiteStrips

Colgate Simply White

I hope this helps!

Sincerely,

NoGluGirl

[mlkramer2]

My wife was diagnosed last week. She's been gluten free for 10 days now. It seems she has followed the normal path of many people here, several years of misdiagnoses, etc. Fortunately she has never been a big pasta eater (though we did have some of the gluten free variety and it was just as good), and her favorite food has always been potatoes. If those weren't allowed I don't know what we'd do!!

She is still in a little bit of denial, so I've been doing most of the label-reading. My biggest problem is the whole cross-contamination issue. In a short amount of time I've become pretty good at reading labels and spotting the forbidden ingredients...but unless it specifically says "gluten free" how can you really ever know? I know there are lists available, but there are always things that we'd like to buy that are not mentioned on the lists that "appear" to be ok. The other issue of course is eating out, especially fast food. Fortunately she likes wendy's baked potato and chili, both of which look to be gluten-free.

[Lisa]

I believe that Wendy's has a list of gluten free items on their website. Assumingly www.Wendy's.com.

[NoGluGirl]

Dear Momma Goose,

I am glad you said that! Maybe I will at least have one thing I can eat out! I have had to stop eating dairy. I wondered if Wendy's had anything that is safe. I am paranoid careful due to having violent reactions.

Sincerely,

NoGluGirl

[Nancym]

Today he is pink-cheeked, gained his weight back, walks five miles up and down hills with no problems, and is full of vim and vinegar--what a handful he is! It's like being married all over again to the man I knew 20 years ago. Sometimes I listen to him laughing and am astonished that I hadn't noticed that he'd stopped. I went through all the trauma you're experiencing--what to eat and not eat, what to throw out and buy new, and scared to death to eat in a restaurant. I made the world's hardest loaf of brick bread.

We now have a gluten-free house and eat very well. I remembered how to cook and I bake a lot. Our good friends and family try to accommodate us. We are very, very careful because his symptoms are "silent" and we wouldn't know if he was glutened--except for what it does to his insides. I take our own food to potlucks, parties, and sometimes even to a restaurant. And this summer we are going to Africa. (We're still figuring out how all that will work.)

Wow! What a wonderful story. And you're extremely loving to give up gluten to make extra sure he doesn't get contaminated! I wish all families were so supportive.

[NoGluGirl]

Wow! What a wonderful story. And you're extremely loving to give up gluten to make extra sure he doesn't get contaminated! I wish all families were so supportive.

Dear Nancym,

Yeah, me too. My parents treat me like a paranoid weirdo. They are not careful at all. It really irritates me! After all, it is not their intestines that could be damaged.

Sincerely,

NoGluGirl

[UNCHeel]

MLKramer

Are you by chance in WI?

[chrrsn]

Sorry, submitted a response twice.

[chrrsn]

My two year old daughter has been diagnosed with Celiac's Disease as well. Her four year old sister, myself and my husband are not. But we decided to go gluten free to make sure that she never feels different when she is at home. I see that you already have a list of things that are gluten free, but as for sandwich meats, I have found that Freybe meats are gluten free and safe to eat. I am not sure if they are available where you are, I am in Canada. But I hope that everything works out well for you and your husband. I know that I never realised how sick Victoria was until she went on a gluten free diet and then I saw how much she must have suffered for the first year and a half of her life.

Good luck.

[NoGluGirl]

My two year old daughter has been diagnosed with Celiac's Disease as well. Her four year old sister, myself and my husband are not. But we decided to go gluten free to make sure that she never feels different when she is at home. I see that you already have a list of things that are gluten free, but as for sandwich meats, I have found that Freybe meats are gluten free and safe to eat. I am not sure if they are available where you are, I am in Canada. But I hope that everything works out well for you and your husband. I know that I never realised how sick Victoria was until she went on a gluten free diet and then I saw how much she must have suffered for the first year and a half of her life.

Good luck.

Dear chrrsn,

I came across a site you could use. The list I have typed out already would not help you much. Many products that are safe in the U.S. are not in Canada due to varying ingredients. The other week, I decided to Google a site with mainstream products for those of you in Canada. It has a list of Borden and numerous other companies' products. Go to Open Original Shared Link and see what all you can buy for your daughter!

Sincerely,

NoGluGirl