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Just Found Out And Need Some Advice On Docs.


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10 replies to this topic

#1 morrigan

 
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Posted 16 September 2005 - 11:50 AM

I am new here and I just found out that I have celiac disease. I had been complaining about having all of these symptoms for a long time but it took me getting another bout of Dermatitis herpetiformis for someone to diagnose me correctly. The problem is that I am in college and have no insurance. The person who diagnosed me was the college nurse practitioner and she said there is nothing more she can do for me since she is at a limited facility. So I need some help finding a doctor who is basically willing to see me out of the goodness of their heart. Well its not quite that bad but it is pretty bad. I have been gluten free for about a week now and am finding it very hard to find things I can eat. My diet now has mostly consisted of apples, potatoes, some meat and coffee. I really don't know what my body levels of anything is. At first of being gluten-free I had magically more energy felt a lot better and today my energy plummited to where I have been in bed all day. So if any one can help let me know I am located in Northeastern Ohio.

Thanks
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#2 Lisa

 
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Posted 16 September 2005 - 12:08 PM

I'm also sort of new at this so I will ask others for their imput as well.

What I DO know for sure is that there is no cure for Celia Disease other than a completely gluten free diet forever. If you continue with your diet you will gradually feel better. As far as finding the correct foods to eat, click on the forum with food suggestion or search for something specific to verify if an item is gluten-free.

Monitoring this site has been a tremendous help to me and I check it daily.

Everyone here has been in your position and it can be very overwhelming. But, knowedge is your best friend......take care and keep asking question.

Lisa B.
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#3 Kasey'sMom

 
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Posted 16 September 2005 - 01:04 PM

You might try to check and see if there's a support group in your area. There may be someone who could help you find a Dr. that could treat you. As well as people to answer questions and give you ideas about gluten-free shopping in your area.

I hope you start feeling better. :)
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#4 morrigan

 
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Posted 16 September 2005 - 01:24 PM

I will try and find someone in this area who can help me. Thank you both for replying I am going to continue my search. Another thing is that I am having trouble aclimating my family to the change so it is easier for them if we go out to eat but not really me because I have to have a plain salad and watch the dressing. So I have been looking in here to try to find eating out answers as well. any and all advise will help at this point.

:)
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#5 KaitiUSA

 
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Posted 16 September 2005 - 01:25 PM

It takes time to feel better on the diet so do not expect a radical change.
There are so many things you still can have. Alot of junk food like regular chips, ice creams, candies, etc we can have.There are a # of mainstream brands, like Kraft, who will list wheat,rye,barley,oats right on labels or they will be safe. Those brands are posted on here in numerous places but if you can't find it let me know and I can email it to you or post it here.
There are tons of specialty items that you can get that are good(there are bad ones too so you just have to find the good mixed in)
There is some good pizza, mac and cheese, pastas, donuts, breads....you name it and there is a good version that is gluten free.
This site is a tremendous help and I am sure you will get used to it in no time.
There is also a 79 page Delphi List which has gluten free foods and products(makeups, shampoos, lotions, etc) on it. This is definitely a major help. If you go to the product section, celiac3270 posted instructions on how to get that or if you contact him he will send it to you.

Also, do you have a safe and forbidden foods/ingredients list? If you do not I can post the link on where to get that but it will come in handy especially until you get used to everything gluten can hide under.

Feel free to contact me anytime if you need help or want to talk.
KaitiUSA@aol.com
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#6 Claire

 
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Posted 16 September 2005 - 03:30 PM

it took me getting another bout of Dermatitis herpetiformis for someone to diagnose me correctly.

<{POST_SNAPBACK}>


I understand that this skin disorder is the slowest of the celiac symptoms to clear up totally - from weeks to a couple of years. Having seen it in a friend I would say it is well worth waiting out the relief and whatever it takes to get it. Good luck.
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#7 Guest_zipy_*

 
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Posted 16 September 2005 - 05:20 PM

watch those shampoos, conditioners, hair gels, lip sticks, and lotions...I was eating gluten-free but kept getting sick because of them...suave is a cheap brand that is, as far as the labels that I've checked so far, gluten-free. Same for toothpastes and gum. Stick to fresh fruits, veggies, and meats without additives until you get more time to sit down and wade through all the material...I know how you feel about eating out. Honestly, I'm gluten-free for just over a month and I'm not confident enough to feel like I can go out except to those restaurants that clearly list gluten-free choices, ie outback.

go to your local library and check out all the gluten-free cookbooks that you can find, they'll give you a good overview of the diet at the beginning of the book...I got one that had ideas for quick snacks...my freezer is full of granola bars and muffins whenever I want a snack.

Good luck! This board is awesome for information!
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#8 jknnej

 
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Posted 17 September 2005 - 01:02 PM

You really can eat anthing! I'm eating M&M's right now and I just ate out at Rubios-corn tortilla steak tacos. Outback Steakhouse, PF Chang's, Carrabba's, Claim Jumper, McDonalds, you name it, they have gluten-free food. You can buy frozen Delmex Chicken Taquitos, or Amy's frozen meals, there are also some South Beach Diet frozen meals and Lean Cuisine meals that are gluten-free. It says right on the label: "Allergens-Wheat, Milk." if you don't see wheat on a Kraft product or a Lean Cuisine, you can have it. Also, any product that lists allergens on the package should be safe as long as there is no wheat, barley, oats, rye, spelt in the ingredients.
If you find a good health food store like Trader Joe's, Wild Oats, Sprouts, etc. they have a LOT of gluten free foods there. I eat cereal every morning for breakfast, a Tiger's Milk bar for a snack, a gluten free English muffin w/ Skippy peanut butter for lunch, chips for a snack, and whatever I feel for dinner.
In a hurry I eat fries and a salad at McDonalds. Their Newman's Own dressing is gluten-free.
In any case, check the lists that Katie offers. They tell you every product known to man and if you can have it or not. the first few months are hard but once you learn what you can have, it's easy, trust me. I work 12-15 hours a day, plus I'm here now at work on Saturday and will be here tomorrow, too. No one knows more than I how important convenient meals are! But, there are so many things to eat!
You'll get there! Come to us if you need help!
Jennifer:)
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#9 morrigan

 
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Posted 17 September 2005 - 04:58 PM

Thanks to all for the help. I guess I felt so very overwelmed and discouraged. I am still trying to get rid of the DH and eat gluten free, go to school and go to work so I think I am a little stressed out. The information has improved my mood and situation emensly. I am sure celiac will be manageable now even though at first it did not seem that way.
:)
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#10 Merika

 
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Posted 18 September 2005 - 09:33 AM

It says right on the label: "Allergens-Wheat, Milk." if you don't see wheat on a Kraft product or a Lean Cuisine, you can have it.

<{POST_SNAPBACK}>


Um, no. NO! Those allergy labels are for WHEAT not celiac. It's nice if you see it listed because you know immediately without reading the fine print not to eat it. BUT if it's not listed, you still MUST read the label to check for barley, rye and oats and their derivatives.

On another note :) you really don't NEED to see a doctor. There is no cure and little they can help you with. Reading online, such as this site, will tell you more about following the diet (which is a must, and your only treatment) and answer questions better than any doctor can.

Merika :)
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#11 nettiebeads

 
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Posted 18 September 2005 - 11:19 AM

On another note :) you really don't NEED to see a doctor. There is no cure and little they can help you with. Reading online, such as this site, will tell you more about following the diet (which is a must, and your only treatment) and answer questions better than any doctor can.

Merika :)

<{POST_SNAPBACK}>

You are right Merika. My dr diagnosed me nine years ago and simply told me no wheat, rye, barley and that oats was questionable, but to stay away from it just to be on the safe side. I rarely discuss my celiac with my drs anyhow. I've educated myself through websites and now this forum, which I love. I've become more aware of cross-contamination issues (my old wooden spoons went bye-bye) and hidden sources of wheat (health and beauty aids) through this site and I'm feeling better than I have for a long time. It takes time, but trust us, it does become simply a fact of your life and after awhile it won't be such a big deal. And thank God there are still things on the list that we can eat - the most important to me is chocolate :P
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