• 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.

Your Top Two Pieces Of Advice
0

58 posts in this topic

1) Don't give up, people heal at different rates!

2) People will try to tell you it's not really the gluten or it's in your head; but don't listen! There isn't anyone who knows your body like you!

I'm bumping this up because it's a good topic.

Does anybody want to add their third piece of advice? :huh:

1

Share this post


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


I'm bumping this up because it's a good topic.

Does anybody want to add their third piece of advice? :huh:

Whew! Was wondering if anyone was going to ask for a third! :P

3. Restaurant travel cards are hugely beneficial in countries where English is not the first language.

What the heck...

4. Don't allow celiac disease to prevent you from going on vacation. Just plan ahead!

1

Share this post


Link to post
Share on other sites

3. Better to go hungry than to eat something about which you are unsure.

4. To avoid going hungry, always have safe food in your purse/pocket and in your car.

2

Share this post


Link to post
Share on other sites

3. even if your testing comes back negative try a gluten free diet. You may be amazed the "issues" than are resolved by going gluten free.

4.if you continue to have issues consider removing soy from you diet.

1

Share this post


Link to post
Share on other sites

oh goody...we're breaking the rule... :lol: :lol: :lol:

3. Give up dairy for the first few months. (the only good advice I got from a doctor :rolleyes: ) Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi and sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. and you may feel as if the gluten-free diet "isn't working." After the villi heal, most people are able to tolerate dairy foods again.

4. Come on Celiac.com and learn from the people who LIVE FULL, HAPPY LIVES with gluten intolerance. You'll learn more here than from any book, doctor or website.

5. If you tell your family that it is genetic and you try to educate them, be prepared to be scoffed at--or worse, ignored. Just know, you tried your best to spare them the misery. Then, let it go. B)

2

Share this post


Link to post
Share on other sites

Being one of the newbie Celiacs you're trying to educate, I wanted to say "thank you."

I'm rather newly diagnosed (about a month ago), there are still a lot of things I'm not sure of. Now that my brain fog has cleared, things will definitely get easier, though... lol

2

Share this post


Link to post
Share on other sites

Being one of the newbie Celiacs you're trying to educate, I wanted to say "thank you."

I'm rather newly diagnosed (about a month ago), there are still a lot of things I'm not sure of. Now that my brain fog has cleared, things will definitely get easier, though... lol

Welcome to the forums GrEyesSmilin :D

1

Share this post


Link to post
Share on other sites

3. It's okay to throw a few temper tantrums. Just don't do it at the innocent kid who asked if you wanted an ice cream cone after you confirmed the gluten-free status of your mint chip. Really. Go home, and then have your melt down.

1

Share this post


Link to post
Share on other sites

3. Break the rules! Have anything you want for breakfast, not just cereal.

1

Share this post


Link to post
Share on other sites

1. If you are just diagnosed, ask for a week off from your doctor. Go through your pantry. Start exploring your food options,sleep and give yourself some mental time to adjust.

2.Your body needs the best food now....and I'm including good wine! :D Instead of going for a cheaper red wine, splurge on something better all the time. In reality there is no truth in fast and efficient - something or someone is ALWAYS bearing the brunt of that thinking. It is a man made modern notion that we as a society bought willingly. Life isn't an assembly line, but we have tranposed this linear thinking and it has effected all parts of our society. Look at how our food is prepared, how our school systems are being run, how many doctors are treating patients...we treat everything like we do cars. Quick and linear with one answer. Celiac is a disease which doesn't fit this linear thinking. You will have to educate your doctors, your friends and family. You are now a celiac researcher, so don't be afraid to speak up and educate. Remember anything worthwhile takes time. Recently, to help me with my own life, I found Stephanie O'Dea. Google her. She did 365 gluten-free recipies in her crockpot and they are posted online. My family loves her rotisserie chicken.

1

Share this post


Link to post
Share on other sites

1. You will find out who is truely your friend.

2. Be prepared to drop some "old friends". If the person was happier when you were sick, and standing in your way of getting better that's someone you need out of your life.

2

Share this post


Link to post
Share on other sites

1. You will find out who is truely your friend.

2. Be prepared to drop some "old friends". If the person was happier when you were sick, and standing in your way of getting better that's someone you need out of your life.

Unfortunately, this is very true. Don't let it bother you though, feeling healthy is most important right now. Do whatever it takes to get back to being you. You might offend someone because you won't eat their cooking, but if they really care about you, they'll get over it. If not, their loss.

1

Share this post


Link to post
Share on other sites

1. This is one of those 'all or nothing' things. You cannot have any gluten again, ever. But don't try and wrap your head around this all at once. Take it one day at a time, and those gluten-y products start vanishing from your improving selective vision.

2. When eating out (or with other people) judge your audience. What I tell people about what I can and can't eat depends on the situation and how receptive I think they'll be. I don't care if I'm not being scientifically accurate, I just want to get out without getting sick or making a huge fuss. If it's easier to imply that I'm just not hungry, am trying to lose weight, will start throwing up, or will go have peanut-style allergic reaction, so be it. It's good to accurately educate people, but it can get boring and exhausting.

(I was away at a 2 day training thing last weekend and I had to cater for myself. Every meal I sat down with my own, self-prepared food while the other 11 people at the table ate the catered food. They were supportive and understanding and I didn't get sick, but I'm an introvert and my god was it tiring having so many conversations revolve around me)

1

Share this post


Link to post
Share on other sites

1) Remember you get the sick feeling after eating gluten, the people offering you suspicious (or openly) gluten filled foods....they only get the good feeling of sharing with you

2) Its important to be comfortable and healthy, it is not necessary to justify the gluten free diet (or any other).

1

Share this post


Link to post
Share on other sites

Great responses, everyone. Here's my other advice.

3. Make food cooking and preparation a top priority. Your health depends on it.

4. Buy a pressue cooker or request one as a gift and learn how to use it (5 lb. stainless steel is the bomb!)

5. Clean out your silverware drawer and utensil drawer or container. Bleach or replace the dividers. It is utterly amazing where those old bread or cracker crumbs landed. (CC! :ph34r: )

1

Share this post


Link to post
Share on other sites

1. If you are just diagnosed, ask for a week off from your doctor. Go through your pantry. Start exploring your food options,sleep and give yourself some mental time to adjust.

2.Your body needs the best food now....and I'm including good wine! :D Instead of going for a cheaper red wine, splurge on something better all the time. In reality there is no truth in fast and efficient - something or someone is ALWAYS bearing the brunt of that thinking. It is a man made modern notion that we as a society bought willingly. Life isn't an assembly line, but we have tranposed this linear thinking and it has effected all parts of our society. Look at how our food is prepared, how our school systems are being run, how many doctors are treating patients...we treat everything like we do cars. Quick and linear with one answer. Celiac is a disease which doesn't fit this linear thinking. You will have to educate your doctors, your friends and family. You are now a celiac researcher, so don't be afraid to speak up and educate. Remember anything worthwhile takes time. Recently, to help me with my own life, I found Stephanie O'Dea. Google her. She did 365 gluten-free recipies in her crockpot and they are posted online. My family loves her rotisserie chicken.

I like the sentiment, and agree with the assembly line metaphor. But alcohol is really not very good for the sore abused gut that is in a newly diagnosed celiac patient. It encourages leaky gut, and food sensitivities. Sorry, folks. Give a couple months, then enjoy all that lovely port and wine, freshly made mojitos, gin and tonics, and cider.

1

Share this post


Link to post
Share on other sites

Hmm...what I was hoping to do was go through and summarize one entry per line all the top two. Then I wanted to edit my first post to keep the list there and I'd update it periodically. That way the list would be easily findable without a newbie having to wade through tons of replies. But since I can't edit the top post anymore, I'm not sure how to proceed. I don't really want to keep starting a new thread. I'd like to keep it in the forum where it is searchable and indexable. Any ideas anybody?

0

Share this post


Link to post
Share on other sites

1. Keep a food diary

2. Find a support network (like celiac.com)

2

Share this post


Link to post
Share on other sites

Korwyn, maybe if we ask nicely one of the moderators will "sticky" it and weed out our friendly back-and-forth so it's all suggestions. I don't think anyone would mind this thread being cleaned up and if it's "sticky" new folks can find it easily.

I didn't get to do #3 and #4.

3. Always have an "emergency" stash of nuts, trail mix, a gluten-free food bar, or some other non-perishable, filling snack in your purse, knapsack, car, or desk drawer at work. If you want to go somewhere on the spur of the moment, you don't have to worry so much about food. I'm sort of like a squirrel with Larabars stashed everywhere. :lol:

4. If money is tight, remember that expensive specialty gluten-free foods are really not necessary. They're nice to have, but you can always go cheap with rice or potatoes and you have fewer chances of cross-contamination too. "Normal" ice cream or popsicles and naturally gluten-free candies are much cheaper sweet treats than expensive gluten-free cookies too.

1

Share this post


Link to post
Share on other sites

I have one about relationships/family members that I found to be really important, and this is just from my experience:

Remember that anxiety is contagious. If you continually freak out about what a big change it is, people around you will start getting edgy, too. It's a big change and a lot to take in for loved ones, as well, and I've found that people are much more open to receiving information and willing to ask questions when I stay calm and level-headed.

2

Share this post


Link to post
Share on other sites

Re IrishHeart's last posting:

"5. If you tell your family that it is genetic and you try to educate them, be prepared to be scoffed at--or worse, ignored. Just know, you tried your best to spare them the misery. Then, let it go."

Gee, and here I've been beating them with a stick like a pinata until the gluten all falls out!!

1

Share this post


Link to post
Share on other sites

Gee, and here I've been beating them with a stick like a pinata until the gluten all falls out!!

We didn't I think of that!!? My family didn't listen to me either. a niece did start on the gluten free diet because she was in so much pain nd miserable.

1

Share this post


Link to post
Share on other sites

I know there are a million different symptoms and levels of difficulty and sensitivity, but in general:

1. This isn't that big a deal. In the scheme of life and all the things/diseases, etc. that people can have and can go wrong... this is nothing. We just have to learn how to cook a little differently, that's all.

2. Read labels... every single time... even if it's something you've been buying for years.

2

Share this post


Link to post
Share on other sites

Yeah, maybe the moderators can add the list to the top and make it sticky.

0

Share this post


Link to post
Share on other sites

Korwyn, maybe if we ask nicely one of the moderators will "sticky" it and weed out our friendly back-and-forth so it's all suggestions. I don't think anyone would mind this thread being cleaned up and if it's "sticky" new folks can find it easily.

Yeah, maybe the moderators can add the list to the top and make it sticky.

I started to pour maple syrup in the celiac disease drawer to make this sticky, but my son stopped me & said I didn't understand. :)

I sent a note to the "Boss" that you all are asking about this. I don't know if its doable or desired. It has been a fun post. We could do it every couple of months and get different people but I imagine most of the advice would stay the same. I'm quite partial to the advice about beating people with a stick like a pinata. :ph34r:

1

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
      107,330
    • Total Posts
      935,520
  • Member Statistics

    • Total Members
      64,991
    • Most Online
      3,093

    Newest Member
    Cz28
    Joined
  • Popular Now

  • Topics

  • Posts

    • I buy the Chex cereals( except wheat). I had recently been buying Puffins from Barbara's bakery but got a very unsatisfactory answer to my question about where they source their oats so I have decided to stop buying them. See below.... "Thank you for your recent email about the oat flour in our Puffins cereal.  We appreciate the time you took to contact our company.

      Approximately 90% of our ingredients are sourced from North America. However obviously there are some crops that do not grow here, and items that are not manufactured here. In those cases, we source from other areas, mainly UK, EU and South America. Regardless of where the supplier is located, we have a very robust Supplier Assurance Program that ensures that we purchase only from approved, high quality suppliers. 

      We thank you again for your comments and hope you continue to enjoy our products.  If, at any time, we can be of further assistance, please don't hesitate to contact us again."
    • Hey guys!  I have been suffering from NCGS for almost a year, and have recently been diagnosed with IBS.  Although I was finally getting used to the gluten free routine, this has been really hard to get used to.  I'm currently having a major flare, so I'm off pretty much all fodmaps (although mainly beans, dairy, nuts, and gluten). Additionally, my stomach can't handle more than a 1/2 cup portion per meal, and even then, I'll occasionally have pain after eating.  Does anybody have simple, fast meals that they could share? As if this isn't restrictive enough, I'm also allergic to eggs, so I'm pretty much living off smoothies, rice, and allergy free chicken sandwiches.  I know this is pretty restrictive, but I thought that if anybody could help, it would be you guys.  Thanks!  Claire 
    • Great advice everyone! So the envirokids gorillla munch by natures path is safe?. As for cinnamon Chex is that ok too? 
    • Alright, so I'm 3 months into being gluten free, And in terms of how I feel, the "best fit" line on the graph would be a very slow incline, which is good, but day to day, I would mark as all over the place. I don't understand. I pretty much do the same things every day, and eat the same things every day at around the same times, even in the same order. I cook all my own food and am super careful about CC. I even have my own pans, cutting boards, even my own sponge for washing my own aforementioned kitchen supplies. What I eat is very limited. I don't even do dairy, grains, or added sugar. (for now) Yesterday I actually felt okay. The brain fog was fairly thin, I felt more based in reality, rather than like I was in the matrix, on drugs, or in a dream. Today I'm back in the matrix again. I can't think, I have anxiety, I'm overly emotional, short fused, angry, and scared of my own shadow. This up and down for no apparent reason stuff seems to be the norm for me. Is this unheard of or somewhat common? It seems like how I feel is completely out of my control, and the disease just does whatever it wants. I know 3 months isn't that long in the usual recovery time frame, but I want to get off this ride. I just need to know if it's normal to be so up and down day to day during the recovery, or if I should give in to my assumed unfounded panic attacks and be worried. As a side note, I'd much rather have the typical gastro issues usually associated with celiac. Blowing chunks and crapping my pants constantly would be way easier for me to deal with than all the neurological problems mine manifested as. Ugh.
    • Ha, Ha!!!!!!  If I wouldn't get in trouble for practicing without a license, I would!     I get it because that is what they did to me for years.  I never had acid reflux but had enough other symptoms that all screamed Celiac but no.........they told me that my severe stomach pain might be acid reflux so take this script and go away. They never even tried to figure it out past the 10 minutes allowed for the appointment. I'll never forget one doctor that I pushed back on and told her I was not there for meds but to find out what was actually wrong and she got so mad she left the room and never came back. All they kept doing was trying to shove pills down my throat.   I am guessing that the procedure is the one where they tighten the sphincter muscle at the entrance to your stomach? I know so many people who had that done because it's become so common to push that if the meds aren't working well. Follow the money........ If acid reflux becomes that bad, then you have to start looking at food, period.
  • Upcoming Events