• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Overwhelmed...please Help
0

4 posts in this topic

Hello everyone! :)

My name is Julie and I'm newly diagnosed. I'm sure this is the same thing that

you "old timers" to celiac hear all the time from "newbies," but I need help! Please send a rescue boat...I'm sinking. My rheumotologist/gastro. dr. have diagnosed me with celiac disease and casien (milk/dairy) sensitivity (after testing).

I'm trying so hard to do good with this diagnosis...but it's so easy to be bad! :huh:

I also have refractory epilepsy and lupus. We are all hoping that this latest diagnosis of Celiac will help ease (or lower) the symptoms related to my other health problems.

I've read that you need to make sure your make-up, soap, basically everything is gluten free also. Do you all do this? Gosh, I've researched epilepsy for ten years, but this is like starting from scratch...I forgot how difficult it was!

Thank you so much for your support! -Julie (newly diagnosed, hungry, and dirty...my soap had oatmeal in it!). :blink::huh:

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Since restricting my diet (gluten, lactose, casien, yeast, corn, soy, peanuts, etc....) most of my joint pain is gone, I now run a fever less than 50% of the time, and all those other problems/issues have really diminshed.

Work on sticking to the diet - it makes such a huge difference, however, it took MONTHS to see some of the results!

-Kate

0

Share this post


Link to post
Share on other sites

Julie: See www.gfcfdiet.com for help with avoiding gluten AND casein. That site lists acceptable and unsafe foods for gluten/casein free diets. Since I must avoid soy and some artificial sweetners (sorbitol/mannitol/xylitol) as well as gluten/casein, I have learned to just read labels, call and/or email food manufacturers to explain mystery terms on their ingredients and use gluten-free/CF lists only as a starting point in my decision to choose a food. I have discovered a large variety of safe foods within those restrictions, so I don't feel deprived at all. :D

I just recently returned from a vacation where I successfully negotiated gluten-free/cf/sf 'safe' meals in 6 different restaurants. Rather than try to explain about celiac disease or food intolerances, I studied their menus and requested entrees with simply grilled meats and steamed vegies. Most restaurants have at least one entree that approximates that or can be prepared without additional (unsafe) sauces or coatings. Then I would explain that I must avoid wheat, dairy and soy and ask that none of those ingredients be used to prepare my entree. Since I was in San Diego, ordering in Mexican restaurants was the easiest ... corn, rice, beans, guacamole, corn tortillas and chips (IF fried in dedicated fryers), meats are all gluten-free/CF. I only had to request they omit the cheese. (I also avoid hot, spicy sauce.)

I know consuming gluten/casein/soy/sorbitol will give me excruciatingly painful symptoms, so PAIN motivates me not to 'cheat'. Besides I would only be cheating myself. I view pain causing ingredients as 'unsafe' and all other foods as 'safe' rather than bad or good foods. If I accidentally consume an unsafe ingredient, I'm not 'bad', just sad that I exposed my poor body to more damage and scared about how long the pain will last this time. :o

Celiac Disease is correlated with many autoimmune diseases, so doing everything you can to avoid gluten/dairy may relieve much of the symptoms associated with epilepsy and lupus. Focus on how much better you will feel without gluten/dairy containing foods, rather than on foods you are giving up. Also focus on the variety of healthy foods you CAN eat. ;)

BURDEE

0

Share this post


Link to post
Share on other sites

Thank you for the replies and info. I am just trying to adjust. Figure out what is o.k. and what is not...typical stuff you go through with a new diagnosis. I have a hard time eating anyway (in part due to all of the meds. I take)...It would be worth any hassle though if I could FEEL BETTER! :D -So now I am just struggling to understand how to begin. Thanks for your feedback! -Julie

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
      107,353
    • Total Posts
      935,653
  • Member Statistics

    • Total Members
      65,034
    • Most Online
      3,093

    Newest Member
    angelaemely
    Joined
  • Popular Now

  • Topics

  • Posts

    • So here's my adderall report.... I take it in the am, after my other melds and coffee. It's the XR version so it lasts all day for me, but the most helpful part is the first 4 hours. It takes a little while to kick in, and then I notice a calming effect. I'm usually very anxious so this is nice. I notice I'm more positive, and feel actually pretty happy, although I've got some major things pressing down on me I feel like I can think about them straight and get them taken care of, instead of panicking. I'm not starving all the time like I usually am. I felt hungry since I started taking my thyroid med and am worried I started gaining a bit of weight due to eating more. Now I don't feel like I need to eat between meals. I'm back to making every bite count towards nutrition. I've been better at taking care of more adult type duties. I'm happy to say that it's been a very good experience so far and I don't feel like I'm taking so much that I get a high from it. A decade or more ago I took double the dose I'm at now and I can tell you I was feeling that super happy high when it first kicked in, and although it felt great, it scared me as that is so on the path to some major addiction issues, you know? I can tell you that the current dose makes me feel like I did in my 20's, and I was pretty kick a$$ then, lol!
    • Thanks, I'll look into these. This is what I'd seen re: lanolin in d3.  http://www.livestrong.com/article/414363-difference-between-vitamin-d-from-fish-oil-lanolin/
    • Found this article about a 11 year old with celiac who was forced to eat outside after being told he could not bring and eat his own "Safe" food into Shields Tavern. Biggest point was the social impact it had on the kid and the way it was handled. I think this will bring up a new perspective and in the end perhaps open more restaurants to understanding that some of us have to bring own food to a gathering for our own safety and that ousting us for it is actual discrimination with legal implications. I personally bring my own food when I eat out, I tip big for it if they are understanding and normally order a 1 ingredient side to simplify it with the least chance of contamination. This is something many of us do to meet a compromise and interact in a social environment, and feel normal. While it really depends on person to person and how sensitive/comfortable you are eating out, heading out to accompany and eat with family, friends, and coworkers should be a option, even if we have to bring our own food as a compromise. http://wydaily.com/2017/07/20/family-of-disabled-11-year-old-sues-colonial-williamsburg-for-discrimination-nws/ On a side note remember not every chain and store are the same, always talk to a manager, or call ahead before bringing in your own food, or eating out with special requirements, dietary restrictions, or extreme food allergies/intolerance.
    • Lanolin to my knowledge is used in skin based applications only, if your needing D3 the best way is to get a sublingual in a dropper you can use there are many available. I personally use Liquid Health and just add it to a drink once or twice a week. https://www.luckyvitamin.com/p-95099-liquid-health-vitamin-d3-drops-1000-iu-2-03-oz BTW while your looking Liquid Health also makes a Stress & Energy Supplement, and a Neurological one I swear by. They have many other liquid based formulas if you wish to avoid pills (I already take a bunch anyway for other health issues)
    • Which D3 supplements aren't made from lanolin?   I had skin inflammation in the past from topical lanolin. I'm not sure if processed ingested lanolin in D3 should concern me, but thought I'd consider a  non lanolin version.
  • Upcoming Events