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tennyson

Newbie Needs Advice-

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I am not sure I am posting in the correct spot- as I am not diagnosed as having celiac. However, I have ulcerative colitis and a whole host of other autoimmune diseases. I have read the book "The Gluten Connection", and have decided to put myself and the rest of the family (dh-35 and suffering from sarcoidosis and ADD, ds- 8 poss. ADHD, and dd 7- she has gastrointestinal difficulties- very irregular) on a gluten free diet.

I am in the middle of a flare-up that is not responding to steroids (I am on 40mg of prednisone a day), and was hospitalized two weeks ago to try to get things under control (to no avail).

I hate to say it, but all of my eggs are in this gluten free basket, and I am very dedicated, as I want it to work so badly!

I have shopped and prepared, and tomorrow is the day we are making the switch that I hope will change our lives for the better.

I would appreciate any words of wisdom from those who have similiar situations, or who could direct me to the correct place to get advice.

Thank you in advance-

Lori

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Celiac.com Sponsor (A8):

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Your attitude is what will take you the farthest!

Pretty much just be patient and be prepared to taste some not so yummy food before finding the really good stuff (as far as substitutes go).

That, and be patient--it could take a few days or weeks of persistence with gluten-free to notice a difference in everyone.

Give yourself a pat on the back for wanting to take good care of your family.

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Hi, Lori!

You're in the right place!!!

My first two weeks gluten free were difficult only in that I REALLY wanted a piece of bread. But I got through it with the help of Fritos and Guittard chocolate chips (bought in bulk at Costco :) ), and once I got throught the first two weeks, it was clear sailing after. And I felt better within 48 hours--MUCH better--and I hadn't even been aware that I hadn't been feeling well! :blink:

Please keep us posted--we've all been through it, or are still going through it, and we're rooting for you!

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Dear Lori,

We know where you are coming from! Do not worry, we will help you! It is our pleasure. Welcome to the forum! I have a little present for you!

I have a list that should really help. This is overwhelming. I went through this with myself in August of 2006. 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 Margarine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

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:

Utz Potato Chips (Found at Sam


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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Thank you so much for your input. What a list! I have to say that I am very confused by the conflicting information that is available. Is there a definitive list put out by an organization that tells things that are 100% sure to be gluten-free? I know lots of places say that you have to call the company yourself to be sure, but its seems like there has got to be an easier way. Every time I turn around I find something else that I need to check, and I sure don't have the time to call every company. Just curious. Again, thank you so much for your advice and suggestions!

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The best way to go gluten free at first is to eat whole natually gluten free foods as much as possible. Meats, veggies, fruits, nuts, eggs, rice, beans, etc that are as minimally processed as possible are your best bet. Many of us are very sensitive to crosscontamination from nongluten free items that are processed in the same plants as gluten free stuff. The best way to find out how sensitive you are to it is by starting out a 'pure' as is humanly possible. There are gluten free lists around but they are out of date really the minute they are printed as companies can change formulas. Also many companies put out lists of thier gluten-free items but do not mention the chance of CC. Frito Lay is one of those, many of us have repeated problems with CC from them. The easiest way to find out the gluten statement for a processed food is often to go to a search engine like google or the one here, type in the name of the product and the word gluten. There is a lot of info and support to be found here, welcome and I hope your problems resolve quickly.


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 am not sure I am posting in the correct spot- as I am not diagnosed as having celiac. However, I have ulcerative colitis and a whole host of other autoimmune diseases. I have read the book "The Gluten Connection", and have decided to put myself and the rest of the family (dh-35 and suffering from sarcoidosis and ADD, ds- 8 poss. ADHD, and dd 7- she has gastrointestinal difficulties- very irregular) on a gluten free diet.

I am in the middle of a flare-up that is not responding to steroids (I am on 40mg of prednisone a day), and was hospitalized two weeks ago to try to get things under control (to no avail).

I hate to say it, but all of my eggs are in this gluten free basket, and I am very dedicated, as I want it to work so badly!

I have shopped and prepared, and tomorrow is the day we are making the switch that I hope will change our lives for the better.

I would appreciate any words of wisdom from those who have similiar situations, or who could direct me to the correct place to get advice.

Thank you in advance-

Lori

Welcome to the club! I have been gluten free for just over two weeks. I also recently read "The Gluten Connection". Over the last 9 months I have been dealing with Sjogren's Syndrome (an autoimmune disorder), plus I have ostepenia. My main symptoms were extreme fatigue, joint pain and stiffness, muscle pain and aches and some other random things. Within 3 days of going gluten-free, I felt like a new person. I was officially dx'd via Enterolab and my cousin has Celiac. The key is to do this 100%, especially since you are basically trying to self diagnose via the elimination diet. You must be sure everything you eat is gluten free (when in doubt, don't) and be sure to avoid cross contamination (CC). You can read several past posts about CC on this forum. Also, many lotions, soaps, etc have gluten. Check that. It's very overwhelming to get started, but you do have to check stuff before you eat it so you can make sure your experiment is error free! One thing that really encouraged me my first week was to have a great gluten free meal at Outback (yes, they have a great gluten-free menu) and I also made rice krispy treats with Cocoa Pebbles. Cocoa Pebbles are gluten-free, as are Kraft marshmellows and whatever gluten free butter (Land O Lakes) or margarine you wanna use. They are better than the ones made with real rice krispies (not gluten-free, by the way) in the opinion of my husband and I. If you think of any specific questions, let us know. We'll try to help. As someone else said, Great value Brand at Wal-mart clearly labels their gluten free items. My local grocery store, Kroger, posts their Kroger brand gluten free list on their website. Whole Foods does this too. Get ready to research a lot online and via the phone to manufacturers. OH, and one last thing...sorry. Another great "normal" gluten-free meal is tacos. Old El Paso brand of taco shells and their beans as well as McCormick taco seasoing are all gluten-free. Obviously, the fresh lettuce and tomatoe are. Get some gluten-free cheese are you have a great meal. We live in Texas so we love to have a weekly taco night. So glad to have something familiar!

Best of luck to your family!


TGrand

gluten free since 10/18/07

casein free since 4/08

...and feeling better than I ever have!

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The first six months were really, really, really hard for me. (And sometimes it still is!)

My best advice is to make sure to always take food with you, especially in the beginning. Friends and family may not understand gluten, and you don't want to be at someone's house, realize you can't eat dinner and then have *nothing* else available to eat. That's when you'll say, "Oh, just this once," and then you feel bad for a few days or more.

Also, if you don't start feeling better in 2-3 weeks, you may also have some additional intolerances. Some are lactose intolerant, but I am casein intolerant. (Casein is a protein in milk; lactose is an enzyme.)


"I'm not telling you it's going to be easy. I'm telling you it's going to be worth it." - Art Williams

Currently gluten-, casein-, soy- and nightshade-free.

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Dear tennyson,

You are so welcome! :) I know what you mean about conflicting information! It is everywhere. One site that stays pretty current is Gluten-Free in SD. I usually Google products with "Is it gluten-free?" Much of the time, this forum will pop up where it has been discussed.

The reason I made that list was so people would not have to spend half of their day on the phone with manufacturers and the other half maniacally cleaning and cooking. That was how my first couple of months were on the diet. Still, I felt a lot better within three days. Unfortunately, I caught a virus. I recovered from it, but then did a course of antibiotics that upset my system severely and now I feel like I am back to square one. I may have Lyme, and know for sure that I have an overgrowth of yeast.

I agree with Ravenwoodglass, that the first couple of months should be pure foods. Your system is sensitive. Healing takes time. Preservatives and such can irritate the situation further. Processed foods are really a last resort for me, because the more I eat, the worse I usually feel. Treating yourself occasionally is alright, but in the beginning, you really should limit these foods. I primarily ate fresh fruit, Great Value canned fruits, Great Value canned veggies, Birdeye Steamfresh Veggies, and meats. The only processed items I allowed myself were Heinz Ketchup, Sweet Baby Ray's Barbecue, Kraft Salad Dressings, Butterfinger Candy Bars, and 3 Musketeers Candy Bars.

Dairy can be a problem for Celiacs. Lactose is a major problem for me, but casein can be worse. If you have a lactose issue, cheese will not irritate your system, but other forms of milk like pudding or yogurt will. Casein is in all forms of dairy, where lactose is not present in high levels with some products. This is judgment call you make. Trust your feelings!

CC is a huge problem for me. I have a violent reaction, so I avoid companies who have had reports of it. Quaker, Amy's,

and Lay's all have had reports on here. Lay's Stax are made on dedicated lines, but I can honestly tell you that Tostitos made me ill a couple of times. Foods made in facilities with wheat are smart to avoid. All it takes is a microscopic amount to damage your intestines.

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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