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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Coping With This New Life
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12 posts in this topic

I find that this diagnosis is, in turn, both a blessing and a hindrance.

 

We all know that one person who seems to be virtually allergic to everything, well, I am that person. I have an allergy list that is a mile long and all my friends think they are going to kill me when I come over for dinner.

 

I have never been able to loose much weight, even though I eat a pretty balanced diet and hit the gym a few times a week. I have never been one for snacks or fast food.

 

And, now, on top of a really restricted diet already, I find that I can not eat gluten either. :(

 

While this is sad, I find that I have a bit of a leg up on most people. I am used to a limited diet, having to inform people of allergies, getting into those awkward situations at Thanksgiving and other get together when you inform people that the food looks wonderfull but it might just kill you or cause you to have a not so pleasant day....

 

My doctor has told me that I might actually loose some of my allergies after I give my body a chance to heal. I hope, beyond hope, that this is true. He believe this mainly because most of my allergies are intolerance ( I just call them all allergies because it saves me time explaining the difference to people). And once my inerds  heal, I may find that my body will be able to digest them again :)  

 

I am currently on day 6 and I have never wanted a piece of bread so bad in my life lol. I am not even overly particular to bread, but, by golly do I crave a piece. 

 

On the bright side, my head is feeling clearer, I have lost 2 lbs, and my pants seem lose, and my face less bloated. :) 

 

I never really realized how much stuff had gluten in it. But I am glad that my Doctor was finally able to find out what was wrong with me.

 

I am so glad that this site is here. I have read so many stories. I feel that they have inspired me for my journey with getting off of gluten and adjusting to its lifestyle.

They have also given me hope that I can beat this bread craving I have developed. lol

For the time being, I have thrown out my loaf of bread, bought some gluten free pretzels, and am munching on a few here and there in hopes of tricking my craving lol. :)

 

My question to you, how have you coped? Whats a good tip to keep in mind? Thanks :)

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Definitely a blessing and a hindrance. I've been gluten-free for three weeks now and tbh, the last day or so have been the hardest - I feel like I've swapped the coeliac symptoms for what I'm putting down to withdrawal/healing symptoms (low energy, bad concentration and colds!)

I don't really crave bread or anything but I'm getting fed up with how much the new diet is costing (I know basic wholefoods aren't too expensive but I'm a student and had got my food shopping down to £10 a week, which has rocketed as I've experimented with new foods). I hope you get over your bread craving soon :) Let me know what works for you in case it strikes me ;)

I've been a vegetarian since I was 12 which (although completely different to an allergy) does give me some experience with a restricted diet. I think my parents were hopefully that I'd give up the vegetarianism though! Just hope I don't lose out on dinner invites because of it. 

Whatever happens over the next few months or years I remind myself that it will become more of a blessing as I (and my friends and family) get used to the lifestyle and everything heals up. I'm also really grateful to have been diagnosed at quite a young age, unlike several stories I've read here. 

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What are your other intolerances? Maybe we can help! Here is the ingredients list for Against the Grain rolls. Of you're OK with eggs and dairy, these should work for you. 

 

http://www.againstthegraingourmet.com/ingredients/product-ingredients-and-nutritionals/

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And here is my very favorite bread of all. I am corn intolerant and couldn't eat it before, but it no longer has any corn in it, and it's GOOD!

 

http://canyonglutenfree.com/bakery-products/10/7-Grain.html

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I was just diagnosed in July, so I am pretty new to this diet/lifestyle myself! Like you, i also have a lot of allergies/intolerances...so what I could eat was already limited. (I have oral allergy syndrome, which means no fresh fruit/vegetables, I'm lactose intolerant, and now I'm apparently allergic to peanuts on top of having celiac disease. And i just plain don't like meat/fish/pork ;P) My doctor told me the same thing - that I should lose a lot of these allergies once my body heals. I ate peanuts for 25 years with no problem...just before my celiac diagnosis I'm suddenly allergic? What!?

 

Once I found out I had celiac disease, I started doing a LOT of research. Looking up gluten free brands, products, etc. I also work with a woman who has celiac disease, so it's been really nice getting advice and tips from her. She recommended a brand called "Udi's" to me, and I am now recommending it to you.

 

http://udisglutenfree.com/

 

There is an option to "Find Udis' Near you" Where you can type in your zipcode and look up places that sell Udi's products. They have bread, frozen pizza, bagels, cookies, chips, etc etc. I find their products right at my local Stop & Shop. Not only that, but some restaurants that have gluten free options use their bread for their sandwiches..and their bread is really, really good. It depends on what you like. I've learned that I apparently like rice flour, since that seems to be the main staple in the Udi's products.

 

A lot of pizza restaurants make gluten free pizza, you should be able to find it on their menus. If a restaurant doesn't have a gluten free menu online, then I usually try to find an email and I email them. Sometimes they have a separate gluten free menu that they, for some reason, have not made available online. 

 

There are tons of gluten free chips/snacks..and even popular brands like Tostitoes have a huge list of which products are gluten free. Some products might surprise you! Doritoes are now gluten free, for example. I personally like "Green Mountain Gringo" Tortilla chips. They're gluten free, and far less salty than Tostitoes. You should be able to find them at Stop & Shop. 

 

If you like soup, Progresso soup has a section for their gluten-free soups as well. I'm still new to this and still learning, and it's been difficult - but I promise it's not AS bad as it seems. A lot of companies are starting to accommodate different dietary needs, which is great for us! 

 

So, how I have coped - I did a lot of research, I ask a lot of questions - I do a lot of reading. I look up gluten free candy, soup, desserts, recipes, and whatever I can to try to learn more about the foods I can/cannot have. I found a recipe for gluten free garlic bread using Udi's hotdog rolls that I can't wait to try! If I find a food that I used to like doesn't taste good gluten free, then it helps me not crave it as much. (For example, I tried gluten free brownie bites - yikes! Never want those again...) Yes, I might miss certain foods - but it's not worth having the skin issues, the bloating, the fatigue - etc...especially not when they have gluten free recipes out there for everything!

 

I am still having issues with my weight..I gained a lot of weight when I started getting really sick...but i have already gone down a pant size. Considering I went to the gym five nights a week and my weight didn't budge, going down an entire pant size in just a few months feels like a blessing. The benefits of going gluten free definitely outweigh the freedom of eating whatever I want. It does get frustrating to check every single thing I put in my mouth, but it's worth it. 

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What are your other intolerances? Maybe we can help! Here is the ingredients list for Against the Grain rolls. Of you're OK with eggs and dairy, these should work for you. 

 

http://www.againstthegraingourmet.com/ingredients/product-ingredients-and-nutritionals/

Hi! Oh that would be awesome....hhmmm lets see.

 

Intolerances: Pork, High lactose (a.k.a I can have skim milk, but 2% is a no no), caffeine, chocolate, cream cheese, and corn.   

 

Allergies: Latex, avocados, kiwi, chestnuts, melons, tomatoes, lemon, and lime.

 

Thank you for the link! :)

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I was just diagnosed in July, so I am pretty new to this diet/lifestyle myself! Like you, i also have a lot of allergies/intolerances...so what I could eat was already limited. (I have oral allergy syndrome, which means no fresh fruit/vegetables, I'm lactose intolerant, and now I'm apparently allergic to peanuts on top of having celiac disease. And i just plain don't like meat/fish/pork ;P) My doctor told me the same thing - that I should lose a lot of these allergies once my body heals. I ate peanuts for 25 years with no problem...just before my celiac diagnosis I'm suddenly allergic? What!?

 

Once I found out I had celiac disease, I started doing a LOT of research. Looking up gluten free brands, products, etc. I also work with a woman who has celiac disease, so it's been really nice getting advice and tips from her. She recommended a brand called "Udi's" to me, and I am now recommending it to you.

 

http://udisglutenfree.com/

 

There is an option to "Find Udis' Near you" Where you can type in your zipcode and look up places that sell Udi's products. They have bread, frozen pizza, bagels, cookies, chips, etc etc. I find their products right at my local Stop & Shop. Not only that, but some restaurants that have gluten free options use their bread for their sandwiches..and their bread is really, really good. It depends on what you like. I've learned that I apparently like rice flour, since that seems to be the main staple in the Udi's products.

 

A lot of pizza restaurants make gluten free pizza, you should be able to find it on their menus. If a restaurant doesn't have a gluten free menu online, then I usually try to find an email and I email them. Sometimes they have a separate gluten free menu that they, for some reason, have not made available online. 

 

There are tons of gluten free chips/snacks..and even popular brands like Tostitoes have a huge list of which products are gluten free. Some products might surprise you! Doritoes are now gluten free, for example. I personally like "Green Mountain Gringo" Tortilla chips. They're gluten free, and far less salty than Tostitoes. You should be able to find them at Stop & Shop. 

 

If you like soup, Progresso soup has a section for their gluten-free soups as well. I'm still new to this and still learning, and it's been difficult - but I promise it's not AS bad as it seems. A lot of companies are starting to accommodate different dietary needs, which is great for us! 

 

So, how I have coped - I did a lot of research, I ask a lot of questions - I do a lot of reading. I look up gluten free candy, soup, desserts, recipes, and whatever I can to try to learn more about the foods I can/cannot have. I found a recipe for gluten free garlic bread using Udi's hotdog rolls that I can't wait to try! If I find a food that I used to like doesn't taste good gluten free, then it helps me not crave it as much. (For example, I tried gluten free brownie bites - yikes! Never want those again...) Yes, I might miss certain foods - but it's not worth having the skin issues, the bloating, the fatigue - etc...especially not when they have gluten free recipes out there for everything!

 

I am still having issues with my weight..I gained a lot of weight when I started getting really sick...but i have already gone down a pant size. Considering I went to the gym five nights a week and my weight didn't budge, going down an entire pant size in just a few months feels like a blessing. The benefits of going gluten free definitely outweigh the freedom of eating whatever I want. It does get frustrating to check every single thing I put in my mouth, but it's worth it. 

 

Hi! 

 

Thanks so much for replying! I have a similar oral allergy to tomatoes. Nice to know I a not the only one facing multi-food/gluten allergies etc...

 

I am definitely going to look into Udi's, they sound fantastic. Thanks for the link :)

Glad to know that Progresso has gluten free soups :D I love soup! 

 

I have found that the more research that I have been doing the better I am feeling about this change. One tends to feel all alone at first. But, now, since finding this forum, I feel better knowing that there are others like me out there.

 

I totally understand you with the weight. I exercised and eat right without results for so long. And now, with being off of gluten for just 9 days I have dropped 4lbs. Feel amazing, have more energy too :) . If I am starting to feel this much better after just 9 days, I can't wait to see how I feel in a few months.

Thank you so much for replying, I find your reply to be so helpful. I can't wait to try some gluten free pizza :) There is a little pizza place down the street that has them that I am now dying to try.

Good luck with your journey on gluten free :)

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Be careful with that pizza place. A lot of folks have gotten CC'd at pizza places. That's not to say there aren't safe ones, but if you know any other celiacs in the area, check with them first, or question the folks at the restaurant really well. Ask if they make their own REGULAR dough, and of so, do they do it in the same room where the gluten-free pizzas are made. (If they make their gluten dough from scratch, the flour dust gets into the air and stays for hours. Ask if they use dedicated pans for their gluten-free pizza. And even if they use the same toppings as the regular. Hands that place peperoni on a gluten pizza, then reach into the bin of peperoni for a second handful, have now contaminated the whole bin.

 

There is a pizza place near me that has safe pizza. They have a celiac in their family so they do it right. It is made in a separate room, dedicated toppings, dedicated pans. It CAN be done. I hope the one near you is safe too.

 

If you don't want to risk it, get an Against the Grain frozen pizza and add your own toppings.

 

Now, about the Udi's - I love Udi's, but it DOES have corn starch in it. I have gotten to the point where I can now tolerate corn starch so it's OK, but I usually buy Canyon Bakehouse 7-Grain instead. Not only does it not have any corn at all, but I like it better. If you like those multi-grain breads in the grocery store - the ones with all the nutty bits in them, you'll love this.

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Be careful with that pizza place. A lot of folks have gotten CC'd at pizza places. That's not to say there aren't safe ones, but if you know any other celiacs in the area, check with them first, or question the folks at the restaurant really well. Ask if they make their own REGULAR dough, and of so, do they do it in the same room where the gluten-free pizzas are made. (If they make their gluten dough from scratch, the flour dust gets into the air and stays for hours. Ask if they use dedicated pans for their gluten-free pizza. And even if they use the same toppings as the regular. Hands that place peperoni on a gluten pizza, then reach into the bin of peperoni for a second handful, have now contaminated the whole bin.

 

There is a pizza place near me that has safe pizza. They have a celiac in their family so they do it right. It is made in a separate room, dedicated toppings, dedicated pans. It CAN be done. I hope the one near you is safe too.

 

If you don't want to risk it, get an Against the Grain frozen pizza and add your own toppings.

 

Now, about the Udi's - I love Udi's, but it DOES have corn starch in it. I have gotten to the point where I can now tolerate corn starch so it's OK, but I usually buy Canyon Bakehouse 7-Grain instead. Not only does it not have any corn at all, but I like it better. If you like those multi-grain breads in the grocery store - the ones with all the nutty bits in them, you'll love this.

 

Oh wow, I didn't even think about the amount of contamination in a pizza place. Thanks for the tip, I shall have to make sure to ask about that before I eat there.

  

Awww man :( Thanks for the tip on corn starch (I'm allergic to corn). oh well. Hmmm the Canyon Bakehouse looks awesome, I'll have to check that out. I love the nutty bits, nothing like a good crunch to a dough. 

 

Thanks for pointing out all the possible contaminators! :) 

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You do have to be careful about cross contamination wherever you go - sorry, I forgot to add that! I haven't gotten sick from any of the pizza places i go to. They usually put the pizza on a separate pan/tin foil before it goes in the oven so that it doesn't touch the oven rack.  Sometimes the restaurant's kitchen standards will be printed right on their menus. I keep forgetting that not everyone lives in the same area that I do, so different places have different standards/rules. You have to be careful when eating out, period. I've personally never gotten sick from gluten-free pizza, but other people have. If you have an Uno near you, they were pretty good about cross contamination. I liked their pizza and no stomach ache! I went to their location in Sturbridge, MA...I can't speak for their other locations. They have a very small gluten free menu - but when I asked what toppings i could get on my pizza they told me that i can get anything I want - but that only certain toppings could be certified gluten free. I liked that they knew what they were talking about instead of just giving me whatever I ordered. You can email the place in question before going! They usually have a contact email on their site, and in my experience - they're pretty prompt with responses. You can judge whether or not the place is worth going to by their reply.

 

Aw, man! You're allergic to corn? That's a bummer. I didn't even know Udi's had cornstarch in it (I apparently can eat corn, then - one of the few things I can eat -__-) Well, at least Bartfull was able to recommend a different brand : ) I'll have to try it myself.

 

See, joining this site is a good way of coping too. We can all share information from our own experiences and look out for one another. I'm still asking questions because I'm still feeling overwhelmed myself. 

 

Bottom line, yes you do have to be careful when going out to eat. Also, if you order take out or otherwise- ALWAYS stress that you're ordering from the gluten free menu. Even if the meal says 'gluten-free' next to it on the regular menu. I had an issue with that recently, that ended up with me getting 'glutened'. I would research brands that don't have gluten or corn in them and go from there. Research, ask questions, and email any restaurants you're considering eating at. They will be happy to answer your questions and they will be honest about their kitchen procedures - they don't want you to get sick either. Also, staying on the pizza topic - don't order Dominoes pizza, in case you don't know - it isn't safe for people with celiac disease. It says so on their site,  I just wanted to warn you!

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Hi Annajazz,

 

A good way to start the gluten-free diet is to NOT go out and buy lots of gluten-free products and go to gluten-free restraunts.  Instead concentrate on learning to mostly eat whole foods that you cook at home. The early months of the gluten-free diet are important for healing your gut and recovering.  You'll learn faster and have less chance of CC (cross-contamination) by sticking to whole foods.  You can always experiment with gluten-free products and eating out after you have healed up for a few months.  That food won't be going away.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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Hi Annajazz,

 

A good way to start the gluten-free diet is to NOT go out and buy lots of gluten-free products and go to gluten-free restraunts.  Instead concentrate on learning to mostly eat whole foods that you cook at home. The early months of the gluten-free diet are important for healing your gut and recovering.  You'll learn faster and have less chance of CC (cross-contamination) by sticking to whole foods.  You can always experiment with gluten-free products and eating out after you have healed up for a few months.  That food won't be going away.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Watch out for cross contamination.

Helpful threads:

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

 

Thanks!

 

These links have been very helpful :)

 

Ya I have been trying to stick to foods that just naturally do not have gluten in them. It is a lot easier and cheaper then trying to substitute gluten free things for those that have gluten(aka pasta etcc..)

 

I have been doing very well this past week. :) All of you guys on here have been extremely helpful.

 

I did get tested and was positive for Celiacs. ugh..

 

Thank you for pointing out gluten free vitamins, made me look at my current one and found out that it has some gluten in it. Oh well, time to switch. lol

 

-annajazz

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