Who has Celiac Disease?

[pitterwoo]

Great advice in the thread, but she might also see if her insurance will cover a visit with a dietitian. One that specializes in celiac can be an amazing resource especially when starting out.

Once she gets a basic grip on the diet, she will also want to learn about cross contamination (like my celiac friend can't toast her bread in the toaster used by the rest of the family). Also medications and care products can contain gluten and be the source of issues if she still isn't fully recovering.

I like Inspired RD, she's a dietitian with celiac disease (blog, twitter).

[ruby412]

Aug 28, 2014 13:57:33 GMT -5 beelove said:

I do. When I first got diagnosed it was so hard. I remember crying in the grocery store and feeling completely overwhelmed. That was seven years ago. Now it's like second nature. I try to stick mainly to whole foods (like actual whole foods, not the grocery store), but if I want a treat there are so many options now. I feel 1000 times better and I can't imagine ever going back.

I find that it is pretty easy to eat out at the nicer restaurants because they are using whole food ingredient and the staff is usually knowledgeable. Most are aware and have several options/accommodations for gluten free.

I believe the propensity for other autoimmune disorders is worse if you don't take care of yourself. If you are not eating right, exercising, and getting enough rest your body is in a constant state of inflammation which can trigger an autoimmune response. I am not saying these things can be avoided or cured by doing all the right stuff, but for a lot of people it can make a huge difference.

Sorry to go and on. Just let me know if you want to know more.

7 years in and you're probably a pro by now! I think the focusing on whole foods sounds like a good idea. Not only is that GF, but it's healthier than all the processed junk we are all used to eating anyway. I guess the only concern would be cross-contamination at home and in restaurants. Even if the food is GF, it has to be cooked in a safe location. The bottom line is that once she gets going with it, she'll feel so much better and be happier, I'm sure. She has been so, so sick.

[ruby412]

Aug 28, 2014 14:19:05 GMT -5 mp said:

Hey! I'm single girl that loves to travel, and Celiac can def be a shock. It will, unfortunately, change certain foodie aspects of her life, and it will require a lot more planning, but it doesn't have to ruin things.

I used to blog - whatthegf.com

Feel free to put her in touch with me if she'd like to chat with a funky 29 yr old who doesn't let Celiac get her down.

Hi! I love the name of your blog! I'll definitely check it out and send her the link. I think it will be really helpful for her to see/ read about how someone can still live an exciting and (sort of) carefree life even with having Celiac. Thanks for reaching out. 

[ruby412]

Aug 28, 2014 14:19:49 GMT -5 pitterwoo said:

Great advice in the thread, but she might also see if her insurance will cover a visit with a dietitian. One that specializes in celiac can be an amazing resource especially when starting out.

Once she gets a basic grip on the diet, she will also want to learn about cross contamination (like my celiac friend can't toast her bread in the toaster used by the rest of the family). Also medications and care products can contain gluten and be the source of issues if she still isn't fully recovering.

I like Inspired RD, she's a dietitian with celiac disease (blog, twitter).

I will look up Inspired RD and tell her about it. Thanks for the recommendation! She is going to meet with a GI who specializes in Celiac.  He runs some support groups with nutritional counseling and other resources for living with the disease. Hopefully she'll get involved with these and find them helpful. I agree that that could be an amazing resource!

[beelove]

Aug 28, 2014 14:56:15 GMT -5 ruby412 said:

Aug 28, 2014 13:57:33 GMT -5 beelove said:

I do. When I first got diagnosed it was so hard. I remember crying in the grocery store and feeling completely overwhelmed. That was seven years ago. Now it's like second nature. I try to stick mainly to whole foods (like actual whole foods, not the grocery store), but if I want a treat there are so many options now. I feel 1000 times better and I can't imagine ever going back.

I find that it is pretty easy to eat out at the nicer restaurants because they are using whole food ingredient and the staff is usually knowledgeable. Most are aware and have several options/accommodations for gluten free.

I believe the propensity for other autoimmune disorders is worse if you don't take care of yourself. If you are not eating right, exercising, and getting enough rest your body is in a constant state of inflammation which can trigger an autoimmune response. I am not saying these things can be avoided or cured by doing all the right stuff, but for a lot of people it can make a huge difference.

Sorry to go and on. Just let me know if you want to know more.

7 years in and you're probably a pro by now! I think the focusing on whole foods sounds like a good idea. Not only is that GF, but it's healthier than all the processed junk we are all used to eating anyway. I guess the only concern would be cross-contamination at home and in restaurants. Even if the food is GF, it has to be cooked in a safe location. The bottom line is that once she gets going with it, she'll feel so much better and be happier, I'm sure. She has been so, so sick.

The hardest is going to eat at someone else's house. Frequently people will go out of the way to make something GF which is so incredibly sweet and touching, but they don't understand the cross contamination issues, or that you can't just "pick around" the bread. It is so hard to say no when someone is trying to do something nice for you. I have gotten more relaxed about it. I never purposely eat gluten but I realize from time to time there are going to cross contamination issues unless I want to prepare 100% of the food I put in mouth. 

[panicked]

Aug 28, 2014 16:30:35 GMT -5 beelove said:

Aug 28, 2014 14:56:15 GMT -5 ruby412 said:

7 years in and you're probably a pro by now! I think the focusing on whole foods sounds like a good idea. Not only is that GF, but it's healthier than all the processed junk we are all used to eating anyway. I guess the only concern would be cross-contamination at home and in restaurants. Even if the food is GF, it has to be cooked in a safe location. The bottom line is that once she gets going with it, she'll feel so much better and be happier, I'm sure. She has been so, so sick.

The hardest is going to eat at someone else's house. Frequently people will go out of the way to make something GF which is so incredibly sweet and touching, but they don't understand the cross contamination issues, or that you can't just "pick around" the bread. It is so hard to say no when someone is trying to do something nice for you. I have gotten more relaxed about it. I never purposely eat gluten but I realize from time to time there are going to cross contamination issues unless I want to prepare 100% of the food I put in mouth. 

OMG, that's the WORST. 

[ruby412]

Thanks to everyone for the input, ideas and help. My sister told her fiance this evening and he was super supportive. They went to a GF pizza place that uses a separate oven/cooking tools for dinner. Then, they went to Giant to buy GF snacks and to the liquor store for potato vodka. Just the essentials. She is feeling much better than this morning.

[panicked]

Aug 28, 2014 19:21:51 GMT -5 ruby412 said:

Thanks to everyone for the input, ideas and help. My sister told her fiance this evening and he was super supportive. They went to a GF pizza place that uses a separate oven/cooking tools for dinner. Then, they went to Giant to buy GF snacks and to the liquor store for potato vodka. Just the essentials. She is feeling much better than this morning.

Let her know that most hard liquor is totally safe. The distilling process removes any gluten that may be in there. :-)

[ruby412]

Aug 28, 2014 19:23:08 GMT -5 panicked said:

Aug 28, 2014 19:21:51 GMT -5 ruby412 said:

Thanks to everyone for the input, ideas and help. My sister told her fiance this evening and he was super supportive. They went to a GF pizza place that uses a separate oven/cooking tools for dinner. Then, they went to Giant to buy GF snacks and to the liquor store for potato vodka. Just the essentials. She is feeling much better than this morning.

Let her know that most hard liquor is totally safe. The distilling process removes any gluten that may be in there. :-)

I will. That's good to know. What about wine? She is a big wine drinker.

[panicked]

Aug 28, 2014 19:32:25 GMT -5 ruby412 said:

Aug 28, 2014 19:23:08 GMT -5 panicked said:

Let her know that most hard liquor is totally safe. The distilling process removes any gluten that may be in there. :-)

I will. That's good to know. What about wine? She is a big wine drinker.

Yup, that's fine too, usually. I have come across a few that had barley in them but that's quite rare. 

[ruby412]

Aug 28, 2014 19:51:24 GMT -5 panicked said:

Aug 28, 2014 19:32:25 GMT -5 ruby412 said:

I will. That's good to know. What about wine? She is a big wine drinker.

Yup, that's fine too, usually. I have come across a few that had barley in them but that's quite rare. 

Oh good! She'll be so happy! Thanks so much for your help with all of this. I really appreciate it.

[jamaga2583]

We had been a gluten free household until very very recently. We went to Olive Garden when we wanted to go out for Italian because they have decent GF pasta, and ate at Pizzeria Uno a lot. They offer gluten free hamburger rolls and their GF pizza is really good. My 6 year old says it is better than any other GF pizza he's had besides homemade.

We like the UDI and Kinnikinnick brands for bread products, Barilla for pasta and Glutino for things like pop tarts and cookies. Chex cereal is great, and they have a bunch of flavors now that are GF. Pamela's and Cup4Cup are my go to flours for baking.

[TrudyCampbell]

There's a decent selection of GF beer on freshdirect (atleast up here) and most all wine is fine.

[ruby412]

Aug 28, 2014 20:32:33 GMT -5 TrudyCampbell said:

There's a decent selection of GF beer on freshdirect (atleast up here) and most all wine is fine.

Thanks, lady! She's not into beer, but this is good to know for her fiancee if they decide to make the house GF. I bet you guys have a gazillion more options in NY than here. Lucky ducks.

[TrudyCampbell]

Aug 28, 2014 20:42:48 GMT -5 ruby412 said:

Aug 28, 2014 20:32:33 GMT -5 TrudyCampbell said:

There's a decent selection of GF beer on freshdirect (atleast up here) and most all wine is fine.

Thanks, lady! She's not into beer, but this is good to know for her fiancee if they decide to make the house GF. I bet you guys have a gazillion more options in NY than here. Lucky ducks.

I won't lie, we have a ton of take out. We've found a chinese, japanese and indian that does GF! 

[DesertMoon]

Deborah Ann Woll who plays Jessica on true blood has it, she does a lot of awareness for it and events.

[ruby412]

Aug 28, 2014 20:03:12 GMT -5 jamaga2583 said:

We had been a gluten free household until very very recently. We went to Olive Garden when we wanted to go out for Italian because they have decent GF pasta, and ate at Pizzeria Uno a lot. They offer gluten free hamburger rolls and their GF pizza is really good. My 6 year old says it is better than any other GF pizza he's had besides homemade.

We like the UDI and Kinnikinnick brands for bread products, Barilla for pasta and Glutino for things like pop tarts and cookies. Chex cereal is great, and they have a bunch of flavors now that are GF. Pamela's and Cup4Cup are my go to flours for baking.

Thanks, jamaga! These are good tips!

[TrudyCampbell]

She should join a message board! I hear they can be helpful .

[Deleted]

Aug 28, 2014 12:15:31 GMT -5 ruby412 said:

Aug 28, 2014 12:06:13 GMT -5 spearmintleaf said:

We had a GF cake at my wedding and it was so good, nobody even noticed.

This is a long shot, but was it from somewhere in the Philadelphia area? We have a GF bakery, but she said she tried a cupcake there randomly a while ago and it wasn't good.

Sorry to bump a zombie thread, but I just logged in to see this. Yes, it was! Well the burbs, anyway. The Happy Mixer is the name of the place. Very sugary but also very good!

[ruby412]

Sept 2, 2014 11:35:08 GMT -5 spearmintleaf said:

Aug 28, 2014 12:15:31 GMT -5 ruby412 said:

This is a long shot, but was it from somewhere in the Philadelphia area? We have a GF bakery, but she said she tried a cupcake there randomly a while ago and it wasn't good.

Sorry to bump a zombie thread, but I just logged in to see this. Yes, it was! Well the burbs, anyway. The Happy Mixer is the name of the place. Very sugary but also very good!

Wow that is crazy! I just yelp'd it and it has 5 stars from every reviewer. Awesome recommendation. Thank you so much! I emailed her their website.

[ruby412]

While this is bumped, @therealmc, I'm reading a book on Celiac and it states that lymphoma is one of the "symptoms."

[ruby412]

Sept 2, 2014 13:12:55 GMT -5 @therealmc said:

Sept 2, 2014 12:57:08 GMT -5 ruby412 said:

While this is bumped, @therealmc, I'm reading a book on Celiac and it states that lymphoma is one of the "symptoms."

:?  It really makes me wish I had taken all my gastro issues seriously prior to getting sick.  Not that there is anything I can do about it now but it definitely makes me want to kick myself.  

Oh gosh, you had no idea!! Do not beat yourself up about it. You are stronger for everything you have been through and all of that makes you you.

Question about your CD: How serious are you about cross-contamination? That's the issue that is most concerning for my sister right now. She isn't sure how careful she has to be. Do you eat at regular restaurants and order GF food even if it's prepared in the same area as the other food? Did you make your house GF so you can be free to use the toaster, etc.? She has an appointment with the Specialist GI but it's not until 9/15.

[ruby412]

Sept 2, 2014 15:08:33 GMT -5 @therealmc said:

Sept 2, 2014 14:46:20 GMT -5 ruby412 said:

Oh gosh, you had no idea!! Do not beat yourself up about it. You are stronger for everything you have been through and all of that makes you you.

Question about your CD: How serious are you about cross-contamination? That's the issue that is most concerning for my sister right now. She isn't sure how careful she has to be. Do you eat at regular restaurants and order GF food even if it's prepared in the same area as the other food? Did you make your house GF so you can be free to use the toaster, etc.? She has an appointment with the Specialist GI but it's not until 9/15.

At this point I am not serious about it at all.  From what I have read CC as an issue is highly dependent with how sensitive you are.  While I do notice a marked difference in how I feel after I consume gluten, preparing food for my kids and husband has not caused me any kind of discomfort.  I will have a follow up scope sometime in January so I would be better equipped to decide on whether CC is an issue for me.

Ah okay. I'll be interested to hear what you say. I feel like the GP put the fear of God into my sister saying that even a crumb (literally) of gluten is the same as eating a slice of pizza. I'm not exaggerating - this is what she said. But it makes sense that some people are more sensitive than others. Keep me updated, if you don't mind, on your scope. Hopefully your digestive tract is looking good.

[TrudyCampbell]

Just wanted to say that you're an awesome sister!

[ruby412]

Sept 2, 2014 19:01:17 GMT -5 TrudyCampbell said:

Just wanted to say that you're an awesome sister!

I'm also playing the role of Matron (awful word) of Honor right now, so I'm stepping up my game! And I feel badly for her. Gluten is delicious.