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Diagnosed Yesterday

Woodrow

By Woodrow
in Coping with Celiac Disease

Recommended Posts

Woodrow Newbie
Woodrow
Posted

Good morning fellow Celiacs. After a year of feeling lousy and not knowing why, I was just diagnosed with Celiac yesterday. The doctor said my score was "off the charts". My wife and I are absolutely overwhelmed at what lies ahead of us.

In my search for information last night, I came across this forum. It's somehow comforting to know that there are so many of you out there who have not only experienced what I am about to go thru (I am currently in the anger stage, with a hint of denial thrown in), but who have obviously adjusted very well to their new lifestyle.

I'm not looking for any advice as I'm sure all of my questions have been asked before and I'll search for the answers. But I do have one question: Did you go to a dietician for professional guidance after your diagnosis and if so, was it worth it?

I'll be talking to you...

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gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Congrats on your diagnosis. After feeling crappy for so long you are on your way to feeling better! Some people have had lots of luck with dieticians. I am not one of them. Never found a good dietician yet. Sorry.

I used to laugh that you have to go through the stages of grief after diagnosis. Anger, denial, ...eventually acceptance. Then you are off and feeling better. Don't let the pitty parade get you down. Go find an Outback restaurant. They have a great gluten-free menu. And they have a gluten-free dessert. Yummy stuff! Lots of restaurants have gluten-free menus so that makes it a bit easier to eat out.

The diet isn't so bad after all. It does seem absolutely overwhelming at first. Take it piece by piece and you'll figure it out. Start looking for health food stores. You'll find gluten-free food in them easier than the regular grocery. I will tell you don't bother eating gluten-free pizza for 6 mths or more. Wait until you forget what a good pizza really tastes like! The frozen pizzas are last resort. But make the Italian bread recipes and spread it flat in a pizza pan. Partially cook it, then top with sauce and cheese and whatever, then finish baking. Soooo yummy!

This site is a great resource. So look around, research, and ask questions. Odds are high someone else has already been there and done that :P Is there certain types of foods you like that you want to find the gluten-free version?

Who does the cooking in the house? My advise is look into a gluten-free collander for your pasta only. Toss the soy sauce. T-san J is the only gluten-free brand that I have found. Tastes great too. gluten-free toaster and possibly toaster oven. No more bread on the grill. Scrub it down well. Toss the wooden spoons. Teflon pans and cast iron pans are not so safe for celiacs so look those up and see what you think. Cross contamination is you biggest problem in the house. So start thinking about that one. No more double dipping in the jelly jar ;)

gluten-free lunch ideas.

Heinz ketchup

Frenchs mustard

Miracle Whip and Hellmans Mayo

Kraft brand products label very well. It will state on the label if it is from a gluten source.

Boars Head and Thurmans deli meats

Hormel bacon

Ball Park hot dogs

Hope I didn't overwhelm you!

melmak5 Contributor
melmak5
Posted

I went to a nutritionist, who has celiac disease and DH, but it was 3 months after I was diagnosed. By then everything she told me I already knew.

I would be weary of going to any dietitian/nutritionist who is not well versed in the disease and the nutritional deficiencies that often come with (at the beginning when your body is healing). But I am skeptical because I have been given misinformation by doctors... to the extent they told me to take medications that contained gluten because they "didn't think to check."

It is overwhelming at first, but this forum is a great source of information and support, so welcome and feel free to ask questions and vent.

Gluten is in a lot of weird places

-binders in medications

-envelope/stamp glue

-condiments, dressings, etc.

-foods (twizzlers and rice crispies were the biggest shockers for me)

My biggest recommendation is READ EVERYTHING and when in doubt call the company and ask.

Also, many people have problems digesting lactose (the part of the intestines that are damaged from celiac disease is the same part responsible for breaking down lactose), so its a good idea to avoid dairy, at least while you are healing.

happygirl Collaborator
happygirl
Posted

woodrow:

Wanted to welcome you to the board and to the gluten-free diet!

My favorite book is the one listed in my signature.

There's lots of good information on celiac.com and www.celiacdiseasecenter.columbia.edu

Let us know what we can do to help!!

ENF Enthusiast
ENF
Posted

Yes, I went to Anne Roland Lee of the Celiac Disease Center at Columbia University. She is one of the few Celiac nutrition experts in the country and the visit was very worthwhile. She answered all of our questions, and the information we received from her made the diet much easier to follow. Good luck.

gfpaperdoll Rookie
gfpaperdoll
Posted

For a refresher in nutrition get the book "Super Foods" this is not a gluten free book, so just skip the part about wheat etc. I advise you to go dairy free at the same time - maybe at least 2 months & then add it in slowly, to see if you can handle it.

I also recommend the book "Dangerous Grains"

One last piece of advice, do not start buying those gluten free brownies and things, with high test scores, you need to be eating only fresh whole foods, seafood, meat, veggies, fruits, nuts & seeds, until your villi have a chance to heal. be sure to get a hard copy of your test results.

you can eat your spaghetti sauce & stuff over rice or spaghetti squash.

sorry, one more thing, start taking a sublingual B12 immediately, you will start feeling a lot better, even if your test levels are okay - you need additional B12, it will not harm you, any excess is excreted in the urine.

welcome to the boards & enoy a shrimp cocktail or something...

oh & be careful about eating too many beans as they are high in lectins & potatoes are in the nightshade family - so you will not want to overeat those - good topics for you to research. Do add in sweet potatoes...

happygirl Collaborator
happygirl
Posted
oh & be careful about eating too many beans as they are high in lectins & potatoes are in the nightshade family - so you will not want to overeat those - good topics for you to research. Do add in sweet potatoes...

However, beans and potatoes are gluten free---so don't worry about that. Not everyone has a problem with lectins.

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gfpaperdoll Rookie
gfpaperdoll
Posted

no not everyone has a problem with lectins, but when you start changing your diet & eating them a couple of times a day everyday & potatoes everyday you will have a problem before long...

elye Community Regular
elye
Posted

Hi, Woodrow, and welcome,

I saw a dietician when I was first diagnosed, left her office with probably more questions than ever, then came home and stumbled upon this forum. I've never looked back, and believe me, any dietary question you have can be (or already has been) correctly answered here. A lot of very knowledgeable people on here...and the support is terrific, too!

Looking forward to sharing this journey with you... :)

joyce's lab Newbie
joyce's lab
Posted
Good morning fellow Celiacs. After a year of feeling lousy and not knowing why, I was just diagnosed with Celiac yesterday. The doctor said my score was "off the charts". My wife and I are absolutely overwhelmed at what lies ahead of us.

In my search for information last night, I came across this forum. It's somehow comforting to know that there are so many of you out there who have not only experienced what I am about to go thru (I am currently in the anger stage, with a hint of denial thrown in), but who have obviously adjusted very well to their new lifestyle.

I'm not looking for any advice as I'm sure all of my questions have been asked before and I'll search for the answers. But I do have one question: Did you go to a dietician for professional guidance after your diagnosis and if so, was it worth it?

I'll be talking to you...

I was just diagnosed with Celiac today and am very shocked but I am so tired of my symptons that I want to start my diet right away. My big question is I love Blue Bell ice cream does it contain gluten

cyberprof Enthusiast
cyberprof
Posted
I was just diagnosed with Celiac today and am very shocked but I am so tired of my symptons that I want to start my diet right away. My big question is I love Blue Bell ice cream does it contain gluten

Joyce's lab,

There are several ways to do this:

1) Post a question under the "Products" section of this forum

2) Do a search for Blue Bell in this forum

3) Go to Blue Bell's web site and do a search for "gluten" there.

4) Call the company tomorrow.

Any ice cream flavor like cheesecake, cookie dough or brownie will probably have gluten. I get plain coffee or vanilla Haagen Dazs or Dryers (also called Eddys in the east, I believe). With ingredients like milk, eggs, cream, coffee, vanilla, I have been safe.

Good luck! this site is awesome, you will get good help here.

cyberprof Enthusiast
cyberprof
Posted
Joyce's lab,

There are several ways to do this:

1) Post a question under the "Products" section of this forum

2) Do a search for Blue Bell in this forum

3) Go to Blue Bell's web site and do a search for "gluten" there.

4) Call the company tomorrow.

Any ice cream flavor like cheesecake, cookie dough or brownie will probably have gluten. I get plain coffee or vanilla Haagen Dazs or Dryers (also called Eddys in the east, I believe). With ingredients like milk, eggs, cream, coffee, vanilla, I have been safe.

Good luck! this site is awesome, you will get good help here.

OK, I just did a search here and found this thread: Open Original Shared Link

It looks like vanilla is probably ok, but not chocolate. I'd be very careful though and try to get more information. Probably won't hurt tonight.

Woodrow Newbie
Woodrow
Posted
  • Author

I just want to say thanks to all the people who have responded to my post. Between my wife going above and beyond the call of duty to help me and the support I know I'll have at this site, I'm sensing that things may be ok after all.

I am in definite mourning over the loss of several food items that I love...specifically a fine microbrew and a fresh bagel. But I am assuming once I start feeling better, it will be easier to do without these items.

Thanks again to all.

Woodrow

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Kinnikinnick and Trader Joe's both make gluten-free bagels! Sliced, toasted, schmeared with cream cheese and topped with lox--I really can't tell the difference, and I used to live in New York! (But I always thought bagels were only edible holders for cream cheese and lox, what do I know?)

However, you might want to avoid the gluten-free substitutes for a couple of months, until your intestines heal. In the beginning, any gluten-free bread or cookie made me feel like I swallowed a brick. After a few months, I tried again, and was fine.

In the meantime, Fritos and Guittard chocolate chips (available in bulk at Costco) are gluten-free!

Darn210 Enthusiast
Darn210
Posted

How long will it take to get in to see a dietician and who "gets" to pay for it? Our visit was covered by insurance and the dietician herself was very knowledgeable. However, I wouldn't say she had anything to tell me that I didn't already know or couldn't find out here. We had several weeks from the time of diagnosis before we saw her, giving us lots of time to do our own research.

Welcome and Good Luck.

Oh and by the way, there are a few gluten-free beers. Redbridge and New Grist come to mind (since they advertise on this site :D ).

VioletBlue Contributor
VioletBlue
Posted

Use this as an excuse to buy an expensive ice cream maker and make your own ice cream. I did :D Best thing I ever did. Haagen Daze vanilla and chocolate are also gluten free.

violet

OK, I just did a search here and found this thread: Open Original Shared Link

It looks like vanilla is probably ok, but not chocolate. I'd be very careful though and try to get more information. Probably won't hurt tonight.

MammaW Newbie
MammaW
Posted

I am also very new the gluten-free diet....ice cream has gluten???? i have none in the house at the moment to check out the ingredients, but is it listed as something obvious or one of those hidden ones?

Darn210 Enthusiast
Darn210
Posted
I am also very new the gluten-free diet....ice cream has gluten???? i have none in the house at the moment to check out the ingredients, but is it listed as something obvious or one of those hidden ones?

There are lots of mainstream ice creams that are OK - you just need to check. Some are quite obviously not gluten free - anything with cookie dough, brownie chunks, etc. We are a Breyer's family and I know their (All Natural) chocolate and vanilla are OK. Haven't really checked anything else because that's what my family ate before.

MammaW Newbie
MammaW
Posted

Thanks! I am a chocolate chip girl myself...so I will make sure to read closely!

gfpaperdoll Rookie
gfpaperdoll
Posted

re blue bell ice cream, here is the deal, they make the vanilla ice cream then they make the flavors, like strawberry & cherry etc, THEN they make the ice cream that has the cookies in them, then they make the chocolate ice cream, then they clean the machines & start all over again.

I used to eat the vanilla & the strawberry, cherry, banana split with no problems. But did not eat the chocolate because of the cross contamination. but I am now dairy free & have gotten over my ice cream habit.

JNBunnie1 Community Regular
JNBunnie1
Posted
re blue bell ice cream, here is the deal, they make the vanilla ice cream then they make the flavors, like strawberry & cherry etc, THEN they make the ice cream that has the cookies in them, then they make the chocolate ice cream, then they clean the machines & start all over again.

I used to eat the vanilla & the strawberry, cherry, banana split with no problems. But did not eat the chocolate because of the cross contamination. but I am now dairy free & have gotten over my ice cream habit.

Oh, my, that's wonderfully good to know. I tend to just buy whatever's on sale, so if I get them, I'll know no choclate! Thanks!

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