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New Here And Fairly New Diagnosis


Nobodyzdarlin1

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Nobodyzdarlin1 Newbie

hi!

My name is Jill. I'm new here and I had a few questions. I was diagnosed about a year ago. I tried the gluten free diet but gave up. Since then my symptoms have gotten increasingly worse. I was sick for many years before finally getting a proper diagnosis, and it was a surgeon who finally did. He sent me to a dietician and that was it. It wasn't until I started reading The "Gluten-Free Bible" that i realized there is more to it than just a gluten-free diet. I was never told that i should take a multi vitamin because of malabsorption, but it wouldn't matter anyway really, because i wouldn't absorb that anyway, they pass right through me. So i guess some of my questions are:

What multi vitamins do you guys suggest? which ones seem to digest the best?

Do your doctors suggest that you have bone density tests? every year? I have never had one. I am 31 years old by the way.

Do you guys suggest any books on celiac or gluten-free cookbooks? anything like that?

Do you know of any chain restaurants that have gluten-free menus? i heard that applebee's did, but the ones in my town do not.

any other info you guys could pass on that might help would be much appreciated.

thanks alot

Jill


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Canadian Karen Community Regular

Hi Jill! Welcome to the forum, I am glad you found us!

First off, you are lucky to have had a doctor who actually clued into what was wrong with you and gave you the proper diagnosis. There are many on this forum who still have not gotten "officially" diagnosed, but unofficially have had such positive responses to the gluten free diet that they know in their hearts gluten is the culprit. The average time from onset of symptoms to actual diagnosis is 11 years! Some here have gone even longer and were "on death's door"(their words) before they finally found out what was wrong.

Did you give up the diet initially because of lack of positive results? Or was the diet just too hard? There's lots of reasons to fall back into the old diet if you haven't seen the amazing results that you were expecting.

There is so much that I have learned from this forum, it's amazing. I didn't know I needed my own toaster (one crumb from a regular wheat slice of bread and make me ill) and here I was sharing a toaster with my whole family. Same goes for utensils, pots, pans. You need your own gluten free condiments, double dipping cross contaminates jars of condiments, peanut butter, etc. You need to check your shampoos, lotions, make-up, vitamins, supplements, over the counter medications, basically anything that comes EVEN CLOSE to your mouth!! I made the mistake of thinking that Gas-X Chewable Tablets were gluten free and I was eating those things like candy. Turns out they contained gluten! (The softgels are okay for us.)

One thing that I found as absolutely essential when shopping is the delphi list. It is a list that is updated on a regular basis, broken down into convenient categories, which makes it alot easier for shopping. You go to www.delphiforums.com, click on the left hand side "Health & Wellness". Then you click on the second forum down "The Celiac Disease Support Group". (You will have to register and log in, but it is free). Once you are in there, scroll down to where you see "Gluten Free Products List", and click on that. The list comes up all categorized for you. It is a godsend. Also, looking through the list, you will be absolutely amazed at all the mainstream stuff that is perfectly fine for us! There is also a section where you can go in and download the whole list to print off.

You will find this site has alot of people with vast knowledge of this disease and are always there for support. Any questions, ask away! We've all been there......

Welcome!

Karen

hez Enthusiast

According to my gi the longer you damage your vili by eating gluten the longer it will take to heal. I do not know about others on the board but it seemed true for me. I was dx in April 2005 (went gluten-free right away) and did not start feeling better intil September 2005. Once you do start to feel better it helps. It is horrible to feel bad and not be able to have what you are used too. I would start slowing. First, just eat naturally gluten-free food like vegies, fruits, and meats. Then start looking at cosmetics and shampoos. I did buy a new toaster and new non-stick pans (they were scratched). Other than that I gave everything a good washing. I threw out the gluten food in my cabinet and started with new condiments. I highly recommend looking at old posts and using the delphi list (the one Karen gave you) to figure out what food is gluten-free. I was amazed at how much in my diet was gluten-free!

Welcome to the board :)

Hez

wilbragirl Apprentice
Hi Jill! Welcome to the forum, I am glad you found us!

First off, you are lucky to have had a doctor who actually clued into what was wrong with you and gave you the proper diagnosis. There are many on this forum who still have not gotten "officially" diagnosed, but unofficially have had such positive responses to the gluten free diet that they know in their hearts gluten is the culprit. The average time from onset of symptoms to actual diagnosis is 11 years! Some here have gone even longer and were "on death's door"(their words) before they finally found out what was wrong.

Did you give up the diet initially because of lack of positive results? Or was the diet just too hard? There's lots of reasons to fall back into the old diet if you haven't seen the amazing results that you were expecting.

There is so much that I have learned from this forum, it's amazing. I didn't know I needed my own toaster (one crumb from a regular wheat slice of bread and make me ill) and here I was sharing a toaster with my whole family. Same goes for utensils, pots, pans. You need your own gluten free condiments, double dipping cross contaminates jars of condiments, peanut butter, etc. You need to check your shampoos, lotions, make-up, vitamins, supplements, over the counter medications, basically anything that comes EVEN CLOSE to your mouth!! I made the mistake of thinking that Gas-X Chewable Tablets were gluten free and I was eating those things like candy. Turns out they contained gluten! (The softgels are okay for us.)

One thing that I found as absolutely essential when shopping is the delphi list. It is a list that is updated on a regular basis, broken down into convenient categories, which makes it alot easier for shopping. You go to www.delphiforums.com, click on the left hand side "Health & Wellness". Then you click on the second forum down "The Celiac Disease Support Group". (You will have to register and log in, but it is free). Once you are in there, scroll down to where you see "Gluten Free Products List", and click on that. The list comes up all categorized for you. It is a godsend. Also, looking through the list, you will be absolutely amazed at all the mainstream stuff that is perfectly fine for us! There is also a section where you can go in and download the whole list to print off.

You will find this site has alot of people with vast knowledge of this disease and are always there for support. Any questions, ask away! We've all been there......

Welcome!

Karen

Mury Newbie

Hi Jill

Welcome to the board, I too am new, just diagnosed about 6 months ago. In answer to your question about rest. the only one I know about is Outback Steak House - they have a gluten free menu (with a brownie desert that is just awesome!) Good Luck!

Mary :D

Guest nini
hi!

What multi vitamins do you guys suggest? which ones seem to digest the best?

Do your doctors suggest that you have bone density tests? every year? I have never had one. I am 31 years old by the way.

Do you guys suggest any books on celiac or gluten-free cookbooks? anything like that?

Do you know of any chain restaurants that have gluten-free menus? i heard that applebee's did, but the ones in my town do not.

any other info you guys could pass on that might help would be much appreciated.

thanks alot

Jill

I take a Isotonix multi vitamin called MultiTech by Market America, you have to get it from a distributor, it's a powder you mix with water and drink, and it's gluten free.

My daughter takes childrens chewables, I just found Lil Critters Gummy Vites at Wal Mart, they look like gummy bears and she loves them. They also say gluten free right on the label.

I got a Wheat Free/Gluten Free guide to dining out from The Gluten Free Mall, links are on this site... it has listings for many restaurants. Triumph Dining also has a dining guide out.

do you have the Delphi Forums list on mainstream gluten-free foods? It's extremely helpful. Also, contact your local grocery stores main offices and ask them if they have lists of their private label brand products that are naturally gluten free. Ingles grocery store has one on their web site that you print out. Wal Mart's Great Value brand has started labeling all of their products that are gluten free. I just went shopping there last week and was surprised at how much was actually gluten free.

You have to be really vigilant about hidden glutens too, and cross contamination. Make up, vitamins, even lotions and shampoos have to be gluten free, toothpastes, mouthwash, hand soaps...

eventually you will get the hang of it. This site is an invaluable resource, there is so much here that will help you, just read read read!

happygirl Collaborator

Outback, Pf Changs, Carrabas, and Bonefish Grill are some of the restaraunts that have gluten-free menus.


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Nobodyzdarlin1 Newbie

thanks all for your help!

Jill

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