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Mj25

New And Need Help!

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I am new to this so I apologize for the length.

My name is Miranda and I am 25 yrs old. I have been sick for the past 8 yrs and always told I have IBS. After yrs and yrs of this and it getting worse by the week, I finally went to a new doctor who had me get blood work done for Celiac and it was positive but even after I went to the GI specialist, he even said he thinks its just IBS! He did an upper and lower GI and after the biopsy came back positive, he still insisted that I have more blood work. The results were thru the roof (as the doctor said) normal being below 19 and mine were 150. He finally officially diagnosed me with Celiac Disease. I really just started the diet a week ago and recently found out that the chicken I was buying has gluten in it. This has been extremely hard for me bc not only am I sick all the time but I am stressed about what I can and cannot have. My boyfriend seems to be having a hard time with it too bc he keeps making crappy comments. He got upset bc we can no longer buy the chicken we used to, and then asked when I was sick the other day what was wrong and how did I feel like he doesn't believe that I'm really sick. I feel so alone in this bc no one understands how serious this is and how crappy I feel all the time.

I know this is really long but does anyone have any ideas on how to make my boyfriend and family understand this better and how I should handle those who don't? :(

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Welcome to the board. There are alot of great people on here that offer wonderful support.

First, take a deep breath and realize everyone of us at one point, is where you are. Feeling overwhelmed and alone. The good news is that you are not alone.

It takes a long time to figure out the gluten-free diet. It might be best to keep to simple naturally gluten-free food for awhile, chicken, beef, fish, rice, potatoes, fruits and vegies, until you get a better handle for what to look for in ingredient labels.

As far as the bf and family go, you may need to give them a little time. I would suggest steering them to this site or other information that explains celiac in simple terms.

Some things to look out for that might have gluten are make up (esp lipstick), shampoo, lotion, sharing condiments (like mayo or mustard, is your bf using a knife then double dipping? it is now contaminated), sharing the same cutting boards and toasters are just some things to think about.

I know others will have more useful tips and offers of support!

Hez

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Welcome to the boards. You have already gotten some great advice. I just want to say welcome, you've come to a good place for info and support. Don't forget to check out the links and info on the home page and another great site is the one for the Celiac Sprue Association.

I hope you are feeling better soon and what Hez said here

"First, take a deep breath and realize everyone of us at one point, is where you are. Feeling overwhelmed and alone. The good news is that you are not alone."

Your not alone, and don't forget now that you have been officially diagnosed all your relatives should also be tested.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I know this is really long but does anyone have any ideas on how to make my boyfriend and family understand this better and how I should handle those who don't? :(

I'm sorry they're having trouble understanding, it may take time for them to realize how important this is. I think the text on the homepage of this website is very informative and helpful, especially the statistics about untreated celiac disease sufferers being at higher risk of cancer. That should help get their attention. For food suggestions, you might want to stick to really simple stuff for now, rice and chicken and beef and fruits and veggies, no battered anything! On the homepage is a link to a list of ingredients that aren't safe, you could print it out and put it in your purse for when you're shopping. Keep in mind, if your doctor was that hard to convince, it may be even harder with everyone else. i just had to get really stubborn, your health is more important than their 'comfort zone'.


If you're going through hell, keep going. ~Winston Churchill

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I am new to this so I apologize for the length.

My name is Miranda and I am 25 yrs old. I have been sick for the past 8 yrs and always told I have IBS. After yrs and yrs of this and it getting worse by the week, I finally went to a new doctor who had me get blood work done for Celiac and it was positive but even after I went to the GI specialist, he even said he thinks its just IBS! He did an upper and lower GI and after the biopsy came back positive, he still insisted that I have more blood work. The results were thru the roof (as the doctor said) normal being below 19 and mine were 150. He finally officially diagnosed me with Celiac Disease. I really just started the diet a week ago and recently found out that the chicken I was buying has gluten in it. This has been extremely hard for me bc not only am I sick all the time but I am stressed about what I can and cannot have. My boyfriend seems to be having a hard time with it too bc he keeps making crappy comments. He got upset bc we can no longer buy the chicken we used to, and then asked when I was sick the other day what was wrong and how did I feel like he doesn't believe that I'm really sick. I feel so alone in this bc no one understands how serious this is and how crappy I feel all the time.

I know this is really long but does anyone have any ideas on how to make my boyfriend and family understand this better and how I should handle those who don't? :(

Dear Mj25,

I know what you feel like. My parents treat me like I am crazy at least half the time. It just does not register that this disease is very serious. There is good news! Many things are allowed! You may want to stop eating dairy until your intestines heal. Some people can tolerate it, some cannot. I apparently do not.

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


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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Hi all,

I just wanted to say thank you all SO much for the great advice and support. I want to give a special thanks to NoGluGirl for the great list of gluten-free products, that will be VERY helpful for me! I also wanted to give you an update. The same day I posted this when I got home from work, my boyfriend told me that he was thinking about my celiac disease and he thought it would be a good idea for us to get rid of all the gluten in the house and clean out the entire kitchen to make sure I don't get contaminated! I was so surprised, and relieved. He said he wants to get a new toaster, and tupperware too. He even bought our dog gluten free food. I am very happy that he is being more understanding now. So I guess I am off to a good start. Now I just can't wait to start feeling better. Thanks again everyone! :)

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First of all honey, this is not your fault and no one should make you feel like crap because you have an illness that you cannot control. I have a two year old daughter that has Celiac's Disease, and because of the risk of cross contamination, we as a family decided to go gluten-free to keep her safe and to also make sure that she never feels different when she is at home. I found that I had alot of friends and some family that truly didn't understand just how sick Victoria gets when she is exposed to gluten. Some of them thought that I was being a little over-dramatic. I have found a lot of different website written not only by people suffering from Celiac's Disease themselves, but doctors specializing in it and the results of gluten exposure to celiac sufferers. I forwarded all of those websites to my friends and family with the hopes of educating them. Those that cared enough to read the information I sent understood. Those that didn't, I could no longer trust to bring Victoria around. Yes, it is a challenge to shop gluten-free, and yes it is a challenge to cook from scratch and no longer use some of the short cuts I used, but it makes Victoria healthy and its worth it to me and to those that matter. Victoria has been gluten free for four months and she is doing great, she went up from 18 pounds at 2, to almost 24 pounds. She is healthy and happy with rosy cheeks and lots of energy. The shopping has become easier. I know now what to buy and I no longer even notice the things that she can't have.

I guess to sum all of this up, you do what you need to do to make yourself healthy. You have nothing to lose from doing this and everything to gain. It is great that your bf is trying to be more understanding, he obviously does care. It gets easier. As for everyone else, try educating them. People can't dispute hard facts they will have to come around. Good luck.

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Welcome!

Don't forget to check any medications that you might be taking...including vitamins. After I was diagnosed, I finished my bottle of vitamins an went to buy another (The same brand) only to find out that right on the label is said "contains gluten". :blink:

For your prescription medications you can check glutenfreedrugs.com to see if your's are on the list. If they are not, you can contact your pharmacist or the manufacturer of the medication. If a doctor wants to prescribe a medication for you in the future, make sure to ask them if it is gluten free.

Good luck!

Cindy


Diagnosed with Celiac Disease April 2005

Diabetic

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This is one of the hardest things to do, thankfully my family has been very good about it, but I see how some friends and my coworkers act sometimes.

I would sit your boyfriend down and explain that the longer you keep letting gluten enter your body, you are at risk for getting cancer and other very painful diseases.

You are going to feel so much better once you start healing, it will be like a whole new person. He should look towards the future.

I know it sucks you can't have the favorite chicken, but what is more important your health and wellbeing or some chicken, for me it is an easy choice. I hope he comes around.

Welcome to the board, I am sorry to hear you are having a rough time, but you are not alone. We have all been there.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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Dear Mj25 and lcbannon,

I am glad the list is useful for you! I need to correct some things, however on it. I found out from some other members the other day that Hormel Beef Au Jus has had cross contamination issues, so I would avoid that. Also, Lay's Stax are the only ones made on dedicated lines. I myself became sick from Tostitos. I wanted to warn you about some other companies that have cross contamination issues. Quaker rice cakes and grits have made members on here ill, and so have some of Amy's Kitchen's products, and Bob's Red Mill mixes. It is better to be safe than sorry! I have a violent reaction, so I avoid these at all costs! Mj25, I am so glad your boyfriend is starting to see how important this is. Many of us have dealt with unaccepting family and friends. It is good news he is seeing the light!

Sincerely,

NoGluGirl


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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