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Mama Melissa

Getting Used To It All...

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Hey guys,

So ive been frequenting this website for about 2 months since ive been diagnosed and its been a lifesaver especially when i feel alone like noone understands. I know you all do:)Today i went to my inlaws for birthday cake(which i couldnt have) for my hubby so i brought my own gluten-free cupcakes which were great i must say:)I made sure i made my own chicken and rice and ate before i went so that wasnt a problems but my mil made spaghetti and sauce for dinner again which i couldnt have so i sat in the other room while they all ate at the table,i couldnt help but feel soo left out. Which is noones fault as i do have very supportive inlaws.My question is how can i make myself not feel soo lonely and will the feeling ever pass of feeling like the odd one out??My mil is soo sweet she says she needs gluten-free recipes to cook for me i do explain the cross contamination and all that comes with the gluten-free diet but i still think shes rusty.Do you think i can ever trust anyone to cook for me especially when they have gluten in there homes???Sometimes i feel like im overreacting but i know i have to for my health.Any input i would greatly appeciate:)Thank for listening!!


Melissa

9/10 Diagnosed celiac via bloodwork/endo

9/10 Gluten free

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I'm very sensitive to CC and I eat in people's homes. I've never gotten glutened by anyone else. I eat out a lot too and have only gotten glutened a handful of times. I'm gluten free about 11 months now.

Don't go sit in another room. It makes you feel awful and it makes them feel bad too. Ask what they are cooking and bring something similar. Or let her cook for you. Give her guidelines. Offer to come over and help. Or bring your own meal and then sit at the table and eat your meal while they eat.

Don't let this disease isolate you socially. Yes if you get glutened it will suck. But it's not anaphylaxis. You won't fall down and stop breathing. And what you will gain socially and for your spirit is worth the small risk. Odds are you won't get glutened anyway. And yes I have gotten glutened eating out where it lasted for a week. But it was still worth the risk because it doesn't happen often.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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thank you sand and surf i mean im really not sure how sensitive i am to cc that whole week i didnt feel well i added coffee and as soon as i took it out i was fine so i tend to think it was from the acidity of the coffee and not cc,they said i had a mild case and it just started by looking at biopsy which leads me to believe i cant be that bad, i just read how even small amounts of gluten will give u cancer and still get you sick im soo paranoid about it:(But i know your right i cant isolate myself sometimes i just have a hard time dealing with it.I know in time i will have my little rountine:)Can i ask you did you go for bloodwork??? and if so did your levels go down to normal?? how long did it take??I think once i go for bloodwork in the spring at 6 months i will feel better im soo afraid it wont normalize.Are you anywhere near new jersey sand and surf?


Melissa

9/10 Diagnosed celiac via bloodwork/endo

9/10 Gluten free

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thank you sand and surf i mean im really not sure how sensitive i am to cc that whole week i didnt feel well i added coffee and as soon as i took it out i was fine so i tend to think it was from the acidity of the coffee and not cc,they said i had a mild case and it just started by looking at biopsy which leads me to believe i cant be that bad, i just read how even small amounts of gluten will give u cancer and still get you sick im soo paranoid about it:(But i know your right i cant isolate myself sometimes i just have a hard time dealing with it.I know in time i will have my little rountine:)Can i ask you did you go for bloodwork??? and if so did your levels go down to normal?? how long did it take??I think once i go for bloodwork in the spring at 6 months i will feel better im soo afraid it wont normalize.Are you anywhere near new jersey sand and surf?

I had a problem with coffee, too. Slowed down the amounts I was drinking to let my stomach heal, while taking Zantac. Has seemed to help and I can drink a bit of coffee again.

And please don't think a bit of gluten will give you cancer! There hasn't been any proof of that that I have read and I've read alot because they thought I had small bowel cancer! It takes quite a bit of gluten many years to achieve that level of damage. Mainly when you hear about cancer and celiacs, it is untreated celiacs. You stay away from gluten and you'll be fine. Your chances of getting cancer from gluten are slim to none, or not any more likely than your average person.

As for your family - thank goodness you have such a sweet one! I have been reading posts on here about mothers telling their daughters not to come to Christmas dinner b/c they are gluten-free???!!!! WTHeck! Anyway, next time, find out what she's serving and make something similar. I bet her sauce was gluten free. Give her a recipe next time, if not and bring your own gluten-free pasta. No biggie! AND never not sit at the table. Dinners should be about more than just filling our bellies! It is about being together.

I have been gluten-free for 7 months and my bloodwork hasn't gone down as much as my dr. wants. 2 out of the four tests have but the main 2 haven't. (Sorry I don't have the names right now of the tests). I have been hyper vigilant, but just recently changed my dog to gluten free treats and food (cuz I touch them and don't always remember to wash hands after rewarding the pup - he's a trick dog) and have eliminated all natural flavorings after seeing a nutritionist. So, we shall see if numbers go down, but it does take a while.

Good luck in your journey. Everyone's is different but we are all headed the same direction.

Wendi


Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"

Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"

Uhhh.....yeah!

DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!

DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.

Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

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Hey Wendi

Thank you for always answering the posts you are great!!!!Im soo happy to hear you dont have cancer, i am more scared because my grandfather died at age 47 due to non hodgkins disease and i know he was never diagnosed my mom said he didnt have stomach problems ive just heard the realtion bewtween celiac and that specific cancer and makes me think im more prone cause its in my genes:( As for family your right i need to sit with them i just felt weird it was the first dinnner.I am def going to start bringing my own gluten free dinners:)Is that true that the dog food could make your levels not come down?? I thought u had to eat food and have it in contact with your small bowel??How long has it been for you??I'm sure its just not enough time give yourself time your numbers will come down:)Keep in touch,btw where are you located?? xoxox Melissa


Melissa

9/10 Diagnosed celiac via bloodwork/endo

9/10 Gluten free

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Hey Melissa,

The dog food/treat issues are probably a little extreme, but it's what I'm doing right now. I was very vigilant the past 7 months, even changed my husbands toiletry items to gluten free. But the doc said to be more crazy about it. I've taken out alot of the gluten free flours that many are saying aren't truly gluten free or have a higher 'parts per million' count. And since I train my dog I use alot of dog treats. I've always given him organic/natural treats. Sometimes I forget to wash my hands. I know it sounds gross, but it's not like I lick my fingers afterwards. I go about my day, perhaps I touch the phone, remote, computer, etc. And the natural dog treats I used to buy tend to be a bit crumbly. I can be careful, but if I forget to wash right away, the crumbs are there. AND, my 11 year old daughter is gluten-free as well and it is impossible to get her to wash constantly. Just easier to get gluten-free treats and food. Then I don't have to worry about CC, you know what I mean? :-) I try not to be crazy-militant about it, but I change things quietly and my hubby might not even know. He commented just last night that the dog seemed more energetic and playful. I smiled inside because the only thing that has changed in my dog's life is his new gluten-free food and treats. B) Hubby rolled his eyes when I said that, but he knows.

I'm in NC, by the way. I think I read you were in NJ? Finding lots of support and products up there? Hope you have a great holiday...

Take care,

Wendi


Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"

Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"

Uhhh.....yeah!

DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!

DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.

Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

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I also wanted to add that it will take you a while to get comfortable in your new skin. I didn't want you to think that it should be easy to go gluten-free. It's not! It is the hardest thing I've ever done, because it is so permanent. I equate it to mourning the death of a loved one. Of course, not quite as drastic, but you go through the same process of grief, denial, anger, etc. I've been through them and will probably fall down alot, but hopefully as the days go on, we will all learn how to live with this better and better. There are so many people on this forum that have lived gluten-free for years and they offer so much encouragement and words of wisdom. Keep this site on your speed dial!


Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"

Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"

Uhhh.....yeah!

DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!

DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.

Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

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To be honest wendi its only been 2 months for me and im trying dragging along but i feel like im always being set back life is soo hard like this and to know for the rest of my life i will have to be like this is difficult,traveling and eating out will never be the same or as enjoyable always worrying about if your glutening yourself:(I just hope the nausea i have been experiencing every so often will lessen or go away completely im being soo careful and i feel like there not much more to do.Sorry just venting a little as you can see i have a hard time excepting this as i went from having a stomach of steel (or so i thought) to be overly sensitive ughhh!!!


Melissa

9/10 Diagnosed celiac via bloodwork/endo

9/10 Gluten free

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Hi :)

While I've only been on this gluten-free change for a month, my health problems have been dragging out years. I have just "happened" upon dietary changes that made me feel better (like low carbing and various gluten-free diets that I didn't realize were gluten-free) and lived that way a lot over the last 15 years. So I've had to address eating differently even though I didn't know why for a long time.

I've been one of those friends and family members whose been bringing her own lunch/dinner - whatever - for YEARS. It's like going everywhere with a pick-a-nick basket like Yogi Bear. Now you just bring your own plate, fork, spoon, knife and beverage :) In my own process, I have learned I don't have to give up the socializing. And generally as long as you have safe foods for yourself, you won't be tempted to eat theirs.

Have a great T-giving and pack your own :)

Smiles,

FooGirlsMom


When I saw this photo, I thought it truly represented my life prior to being gluten-free. It was like being rooted in place trying to survive a Category 5. Now that I am gluten-free, I feel like I just might make it :)

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Hey guys,

So ive been frequenting this website for about 2 months since ive been diagnosed and its been a lifesaver especially when i feel alone like noone understands. I know you all do:)Today i went to my inlaws for birthday cake(which i couldnt have) for my hubby so i brought my own gluten-free cupcakes which were great i must say:)I made sure i made my own chicken and rice and ate before i went so that wasnt a problems but my mil made spaghetti and sauce for dinner again which i couldnt have so i sat in the other room while they all ate at the table,i couldnt help but feel soo left out. Which is noones fault as i do have very supportive inlaws.My question is how can i make myself not feel soo lonely and will the feeling ever pass of feeling like the odd one out??My mil is soo sweet she says she needs gluten-free recipes to cook for me i do explain the cross contamination and all that comes with the gluten-free diet but i still think shes rusty.Do you think i can ever trust anyone to cook for me especially when they have gluten in there homes???Sometimes i feel like im overreacting but i know i have to for my health.Any input i would greatly appeciate:)Thank for listening!!

As another poster said, your family probably felt bad that you sat in the other room, too. When you get more used to the diet, you'll learn some tricks. You've gotten some good advice, and I'll add some tricks that I've learned.

1. This isn't the only situation that will come up. You'll also go to functions with buffets where you won't know the ingredients in food. I used to just sit at the table and watch people eat (I ate beforehand). That made everyone uncomfortable. Questions swirled (why aren't you eating?). Now, I bring my own food and grab a clean plate to eat off of. Most people don't realize that I'm not eating the buffet food. This happens at sit-down dinner's too. If I'm not absolutely sure that there will be gluten-free food, I bring my own and ask the waitstaff for a clean plate. I'll find a discrete location to arrange my food on the plate and go and sit down. Either people don't notice, or if they do, I explain that I'm "allergic" to things and prefer to bring my own food. Conversation ends.

2. You can bring these tips to your family dinners. If you're not sure that your family dinner is gluten-free, bring your own food. Use their plates and put your food on the plate and enjoy the dinner conversation. At first this sounds rude, but everyone is at ease with this. You're sure you can eat, your family isn't worried about making you sick. If you have a family member who really wants to learn to cook for you, take some of the suggestions from the other posters - go early and help them with the dinner. They may understand no gluten, but they probably won't understand the whole cc issue. They may use contaminated cutting boards, colanders, spoons,counter tops, etc. Or, they don't read the ingredients in everything. They mean well, but you have to teach them.

It seems like a big headache. It is. I resisted going places for the first year because I was scared out of my mind. Then it took trial and error. Now it's just my life. I bring food everywhere. I keep it at work. I keep it in my car. I keep it in my purse. I never want to be hungry. My personal satisfaction and well-being is important. I've learned to be assertive with my diet.

Hope this helps a little.


Jenn

dx celiac 9/2007: gluten-free 9/2007

corn intolerant: corn-free 5/2010

nut allergy: nut-free 8/2010

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awesome advice jen thank you soo much for your info:)

I forgot to mention what I use to bring my food in. :-)

I bought a little purse-like cooler at Target. It's a soft-side cooler that looks like it would hold a gallon of milk. It's pretty- has butterflies on it - it's made by Thermos. So it's discrete because it sort of looks like a big purse or little bag. I tuck it under my seat when I go to functions. I use this as my lunch bag at work, too. We don't have a proper kitchen.

Gotta be stylish! I think I'll buy another one so I can match what I'm wearing.


Jenn

dx celiac 9/2007: gluten-free 9/2007

corn intolerant: corn-free 5/2010

nut allergy: nut-free 8/2010

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thank you sand and surf i mean im really not sure how sensitive i am to cc that whole week i didnt feel well i added coffee and as soon as i took it out i was fine so i tend to think it was from the acidity of the coffee and not cc,they said i had a mild case and it just started by looking at biopsy which leads me to believe i cant be that bad, i just read how even small amounts of gluten will give u cancer and still get you sick im soo paranoid about it:(But i know your right i cant isolate myself sometimes i just have a hard time dealing with it.I know in time i will have my little rountine:)Can i ask you did you go for bloodwork??? and if so did your levels go down to normal?? how long did it take??I think once i go for bloodwork in the spring at 6 months i will feel better im soo afraid it wont normalize.Are you anywhere near new jersey sand and surf?

I got bloodwork when I was first diagnosed. Interestingly I was VERY ill, like thought I had something horrible and would die soon ill, yet only one of the 5 tests came back positive, although it was triple the limit. I think it was IgA but honestly I don't even remember now. My doc wanted a gluten challenge and biopsy to confirm and I said "Only if you want me dead because gluten is killing me." I went gluten free and although it took me 6 months to recover and feel well I had immediate improvements in neuro symptoms and had constant improvement over time.

I thought I had wheat intolerance but still ate it sometimes, so I was gluten light already which is why I believe my blood tests weren't through the roof.

Don't worry about cancer. That's for untreated celiac and people eating lots of it. CC happens. But you want your gluten load as small as possible. Be careful around gluten. Wash your hands before eating. Don't touch your face, etc. My 3 year old daughter isn't celiac and she got gluten cookie crumbs all over me at Disneyland last week from her Mickey Mouse cookie. I just baby wiped the heck out of myself, shook off all the crumbs and washed my hands and I was fine.

I'm in So Cal. So very far from New Jersey!


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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I forgot to mention what I use to bring my food in. :-)

I bought a little purse-like cooler at Target. It's a soft-side cooler that looks like it would hold a gallon of milk. It's pretty- has butterflies on it - it's made by Thermos. So it's discrete because it sort of looks like a big purse or little bag. I tuck it under my seat when I go to functions. I use this as my lunch bag at work, too. We don't have a proper kitchen.

Gotta be stylish! I think I'll buy another one so I can match what I'm wearing.

I have one of those too. I also tuck food into my regular purse. I wrap the cold food in foil and then wrap it together with an ice pack in another layer of foil. Big plastic baggie and I'm set.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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For inexpensive gluten free dog treats, you can use Lundberg rice cakes broken into small pieces, or corn tortillas torn into small strips and left to air dry on a plate on the counter- the dogs love them anyway, and they are actually not expensive like the biscuits can be.

2 of the dogs have allergies out of four, so this cut down on them cross contaminating each other. When I saw the cat drinking out of the dog's water dishes, I had to change the cat food, too. Oddly my wheat sensitive dogs have never had a problem with pure corn as treats, even tho I was told by dog people that corn was supposedly so bad for them. Well, yeah, if it's in a dog food with soy and wheat and who knows what else sort of mystery ingredients.

Agree with just taking your own food, gluten free, along to "wherever." Much easier. You can always bring along one safe gluten free entree or side dish to family or friend get togethers, a lot of regular cooking is gluten free anyway with only a small tweak, and they may not notice much or care. Just make sure you serve yourself first.

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What about when i go to halls for events like i have a babyshower to go to they are having a buffet but they are aware of my condition they said they specialise in that and do special food for people with food allergys all the time.Sounds great i am ordering my own food that they will specially make for me , i havent been out to eat since diagnosis and am kinda of scared.Would you say that is safe???


Melissa

9/10 Diagnosed celiac via bloodwork/endo

9/10 Gluten free

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For inexpensive gluten free dog treats, you can use Lundberg rice cakes broken into small pieces, or corn tortillas torn into small strips and left to air dry on a plate on the counter- the dogs love them anyway, and they are actually not expensive like the biscuits can be.

Oohh, I like those ideas! Will have to experiment and try some other things after the holidays. My dog does have other food sensitivities but I could play around with various things. Rice cakes sound perfect! Have to see what else is in them... Thank you for your suggestions! :-)


Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"

Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"

Uhhh.....yeah!

DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!

DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.

Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

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