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Kate35

Feeling Soooo Lonely With This Rare Disease...

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I am so glad I found you guys! I was diagnosed with celiac disease about 6 months ago. I was feeling horrible and I am glad that at least I know what was wrong with me. I am feeling much beter now although not 100% better, I still get crmaps,nausea, bloating for no reason (could stress and anxiety do it?!) but mostly i worry about what to do now. I have two small children with food allergies and asthma) and caring for them is hard enough but I was doing okay reading labels and cooking everything from scratch. Now, I have gluten to worry about! Going out to eat is no fun in our family. I am not sure what I am going to do with vacations, family road trips, other spontaneous family outings I've always been dreaming about... Okay, I have to be prepared, I understad... I know that a lot of you are going through similar things, but for some reason I just feel so helpless, and some nights I just cannot even fall asleep wondering what my future will be like? Will I be able to see my kids grow up, or will I get some kind of cancer before that? Will I be able to enjoy my friends and family, because food is a big part of our culture (I am italian). We declined a number of parties already.... Also, I work for a big bank, and I used to travel a lot in the past, what am I going to do now? How am I going to eat breakfasts in those hotels? What am I going to do at those business lunches I get invited to all the time ( had to decline a couple already...) I've had many sleepless nights...

I knwo they are saying it is so common, but I read in a medical well reputable magazine yesterday that it only strikes 1 out of 3000 people. I also read that risk of malignancy is much higher even if you are gluten free and that on average, celiacs don't get to enjoy long healthy life as other people do... That all just makes me so depressed... I have a loving supporting husband (he went gluten free to support me even though I protested)

But i even feel that it is so unfair that a guy like him is stuck with a sick wife he cannot even have fun with any more...He is really a wonderful person... My kids need me I know, but how do I cope? Nobody I know personally have this disease, most people have never heard of it! Everything just seemed to have fallen apart... Thank you for reading.

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Celiac.com Sponsor (A8):

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Where did you read that stuff? The administration of this web site puts current medical articles on here. Depending on the article, 1 in 100 -130 people have Celiac. You should read some reputable, current sources that specialize in Celiac. Look at Columbia Univ Celiac Ct, Univ of Chicago & Maryland have Celiac Cts.

It's not that bad. You need time to get new habits and get adjusted. Get your kids tested if they haven't been. You can do it.


 

 

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And we're here for you. :) We're quite a crowd.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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The risk of malignancy isn't that much higher with Celiac. It's much worse with diseases like Crohn's or Ulcerative Colitis (the so-called Inflammatory Bowel Diseases). People with Celiac can live long, happy, healthy lives as long as they don't take in gluten (and if the person has other food intolerances, those get added to the no-no list).

Celiac is usually estimated to occur in about 1 in every 130 people in the USA, just like kareng said. It's quite common. It's underdiagnosed, too.

There is zero reason for you to break down over this. It's an inconvenience, but it won't kill you any sooner as long as you avoid gluten. There's absolutely no reason for you to stress out this much over it. You're in no way doomed.

Hotel breakfasts: yogurt cups, fresh fruit.

Business lunches: order salads prepared on a cleaned surface without any bread products (no croutons, no dinner roll) with grilled chicken (no breading), order a burger without the bun prepared on a clean grill or pan (make sure the meat isn't marinated in anything), order a steak (again check the marinade and cooking surface).

Always bring Lara bars as backup when you travel so there's something you can eat.

If you choose to never have fun again, that's your choice. Celiac is no excuse to not have fun with your family. It just means no gluten.

Shared family dinner ideas: taco night, rice pasta with tomato and meat sauce, stir fry made with gluten-free soy sauce, fried rice, quesadillas, baked chicken and rice, chili, homemade soup, etc. Search the forums here - everyone has been cooking for a while and there are some phenomenal ideas.

Cheer up! You're making this way worse than it actually is.

Also, welcome to the forum!

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I knwo they are saying it is so common, but I read in a medical well reputable magazine yesterday that it only strikes 1 out of 3000 people. I also read that risk of malignancy is much higher even if you are gluten free and that on average, celiacs don't get to enjoy long healthy life as other people do... That all just makes me so depressed... I have a loving supporting husband (he went gluten free to support me even though I protested)

But i even feel that it is so unfair that a guy like him is stuck with a sick wife he cannot even have fun with any more...He is really a wonderful person... My kids need me I know, but how do I cope? Nobody I know personally have this disease, most people have never heard of it! Everything just seemed to have fallen apart... Thank you for reading.

That study is total bs. you can be just as healthy or healthier than others who can eat gluten. I've read over and over that the increased risk of malignancy drops down to that of the general population after going gluten free for 6-12 months. You don't need to worry about that. And your husband is so sweet to go gluten free for you, I'm sure he didn't marry you because of what you could/couldn't eat and it doesn't matter now. Besides,most men are pretty darn happy with more meals of steak/potatoes :P My husband is also eating gluten free for me and our two small children and as long as I keep snacks and good food in the house he has not even blinked an eye about the change. We still can go out to eat and have been on some small trips recently where I just packed a cooler of food for the 4 of us. It saves money that way too!. The restaurants you can eat at may be more limited but it is possible to find some place to eat just about anywhere. You just have to accept that sometimes you will be stuck eating a boring/ plain meal at certain places for safety but eating is only a small part of traveling and having fun so don't stress over that. Everything is still just as possible as it was before. It does take time to adjust but you will get to a point where it all just feels normal. Hang in there and try to focus on all the good things in your life!

I recommend reading Celiac Disease A Hidden Epidemic and Healthier without Wheat. Two very informative books that will set the record straight about how many people this affects and about the cancer link. Chances are you probably do know others with this disease or gluten intolerance and they just don't know it yet.

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Re-read my post. I sound a bit harsh. I'm tired. Teenager went to the amusement parks haunted night. Wasn't home until 1:30 am.

While my hub & I don't go out as much, when we do we go to nicer places. We have "Pub Night" at home and make nachos or different appetizers and have gluten-free beer or wine. My teen boys loved gluten-free pizza night ( they don't need to be gluten-free). Used pre made gluten-free pizza crusts and different stuff on each.

Anyway, you can always talk to us here.


 

 

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Yes, the cancer is really unlikely. more likely, you'll go on vacation, eat something that wasn't quite what you were told it was, and be sick for half your vacation. But with care, you'll figure out who will actually be careful enough for you. And, if you are lucky, you'll be less sensitive and just get a slightly knarly tummy if someone screws up in the kitchen.

In terms of feeling better, take your kitchen totally gluten-free (you sound like you may have done that). Make sure you've cleared out wooden utensils etc. You can also check things like pet food and toiletries. Get tested for other intolerances, or do an elimination diet. Don't eat oats for a couple of months.

You can do things on the fly, though, but you may end up eating less nutritious meals than you would otherwise (i.e. apple and peanut M and Ms for dinner when everyone else is having a sandwich). Nicer places do tend to be more helpful and educated but even your burrito stand dude may know enough to pull on clean gloves. And, hey, you can train your favorite places.

Business lunches, call ahead and make your needs clear. You can order many types of Indian food, steak/fish, veg & potato dinner, risotto (usually, ask about their broth), salad (check dressing and no bread products), polenta, lots of mexican options, etc. Chains like Legal Seafood even have gluten free menus. It's also a good sign if the manager is watching and delivering your food. I've had some good meals out-- polenta, peas, omelette with goat cheese. Fish with an herb tapenade and ratatouille. Pea soup with crab.

Road trips: stop at grocery stores or convinience stores and buy food like fruit, baby carrots, hummus, cheese sticks, etc. Pack crackers or make Japanese rice balls. Oh yes, and CHOCOLATE. All trips need chocolate.

You can do it. Splurge occasionally on things to make you feel less sorry for yourself. It helps. Mental health days, a babysitter and a movie out, etc. I've also found that it is nice to have a stash of gluten free foods like pasta so I always have something that cooks quickly and need relatively little to turn it into a meal. There are also a lot of people on here who have multiple food restrictions, so post up about what your kids can't have and people will give you ideas so that you are only making one meal. Cooking separate meals will definitely be a burden.


2/2010 Malabsorption becomes dramatically noticable

3/2010 Negative IgA EMA; negative IgA TTG

4/2010 Negative biopsy

5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)

5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

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Don't hesitate to call ahead to restaurants to ask about gluten free meals. I am amazed at how many are in my area who are at least attempting to get the gluten free right. We have one local bar who has a gluten free section in their regular menu! They have a dedicated fryer for fries and chicken wings! Places are trying. Some are better than others, but most have understood when I have asked about gluten free, so the education is better out there. I am new to this, 2+ months gluten-free, it takes educating yourself and others...but it really is okay! :rolleyes:

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Some others have already given you good advice so I'm just going to list some resturants with gluten free menus that might interest you:

Olive Garden

Carrabba's Italian Grill

Uno's Chicago Grill

Carino's Italian

Bertucci's

Mellow Mushroom

zPizza

Old Spaghetti Factory

Outback Steakhouse

Pizza Fusion

Romano's Macaroni Grill

And there are many, many more...(I listed mostly Italian places since you said you are Italian). Check out glutenfreeregistry.com to find restaurants near you or if you travel you can find restaurants with gltuen free menus in other cities. It does take some adjustment, but it's not hopeless!

When I go to a hotel for breakfast I eat hard boiled eggs, fruit, yogurt, grits, or chex cereal if it's offered and juice and coffee or tea. I do try to make sure I bring some emergency gluten free food in case none of the above is offered, but at most nice hotels those are options.


A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

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Thank you all so much for your replies! You just have no idea how much your words mean to me. Just knowing that there are people out there I've never even met but who cared enough to read and offer advice... you really made me feel billion times better. I know I am not alone.

I was diagnosed by endoscopy, because my doctor was convinced I had an ulcer (?!) while I presented with all the obvious symptoms of malabsorpion and then they did all the bloodworks and they were all very high... So, unfortunately, I am not simply intolerant I have a disease... I did check my kids, but my pediatrician only ordered IGG and IGGA tests, she did not know about TtG which is the most accurate, but they did not have any antibodies. We don't have any gluten in our house now, kids eat "normal food" when they are visiting my parents (about once a week). As far as kids allergies are concerned: One is allergic to dairy and nuts and the other is allergic to nuts and fish... I loved your food suggestions especially for travel. If you can think of some good quick recipe for family dinners I'd appreciate them as well! I do try to cook one dinner for all!

Thank you again! Even my kids noticed today that I was in a better mood... that is exactly what support does... even if in today's high tech world it comes through internet...

Kate

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