Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Just Found Out And Need Some Advice On Docs.
0

11 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites

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.

:)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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:)

0

Share this post


Link to post
Share on other sites

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.

:)

0

Share this post


Link to post
Share on other sites
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 :)

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,642
    • Total Posts
      921,566
  • Topics

  • Posts

    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
    • So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,647
    • Most Online
      3,093

    Newest Member
    iFitCeliac
    Joined