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

  • 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Deciding To Start A Gluten-Free Diet
0

13 posts in this topic

I had a blood test for celiac and it was negative and yesterday I had a biopsy and won't have the results until December 17. At first I had decided I would try gluten-free for 3 months anyways to see if I have a gluten intolerance and to see if it improves my symptoms but now I am struggling with the idea. If I knew I had celiac then it would be easy to stick to it but if I don't even have celiac then how am I going to be able to stick to such a restrictive diet. Originally I was going to start the diet after my biopsy but now I am wondering if I should even bother. There are a million different things that could be causing my symptoms so why put myself through all the trouble?? I am very conflicted right now. For those who don't have a celiac diagnosis how do you make yourself stick to the diet?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Well, my guts react very strongly to gluten (in a bad way) and now I also seem to have a wheat allergy to boot. So that pretty much leaves me no choice but to be gluten-free.

Have you tried eliminating and then re-introducing gluten into your diet? I did that twice, and each time the nasty results clinched it for me.

ps. I mean only if your biopsy is negative of course.

0

Share this post


Link to post
Share on other sites

Yes, this is true--if you eliminate gluten and feel great...and then reintroduce it and feel horrible again, you have your answer. You won't know if you don't try, right? The sooner you try, the sooner you may start feeling well. Believe me--you'll have your answer soon enough, and then you won't mind the "restrictive" diet (which really isn't very restrictive at all).

0

Share this post


Link to post
Share on other sites

The only difference between knowing the answer and not knowing is knowledge. However, if your body reacts positively without gluten and negatively with it...the decision is simple. Plus, if you do have celiac and don't get definitive proof that you don't, ignoring it and continuing to consume products with gluten can have long term effects you may want to avoid. The decision comes easy when you learn your body can be permanently and irreversibly harmed by continuing down the same path, but if you don't have it and gluten-free does not help, then you're right...why restrict yourself at all. Eat what you want and have your GP focus in on what could really be the problem.

0

Share this post


Link to post
Share on other sites

Feel much better without gluten. Like, much better.

Also, I like having good fresh food.

And, the good folks here will help if you have a wobble.

Keep investigating other possibilities, ask lots of questions

Good luck, and welcome

:)

0

Share this post


Link to post
Share on other sites




How long would I have to be gluten free before I could "challenge" it? I know you are supposed to do a minimum of 3 months but if I did gluten free for one month and then ate gluten would that be enough time out of my system to make me feel like garbage if I am gluten intolerant? I am very stubborn and like proof for things so I think it would be beneficial for me to see that it is actually the gluten making me feel like crap, as dumb as that sounds. Also how do you get started? Do you just wake up one day and say no more gluten? I keep thinking I need to do a bunch of stuff to prepare or something.

0

Share this post


Link to post
Share on other sites

.. There are a million different things that could be causing my symptoms so why put myself through all the trouble?? I am very conflicted right now. For those who don't have a celiac diagnosis how do you make yourself stick to the diet?

Putting yourself through "all the trouble" of following a gluten-free diet will eliminate one of the "million things" that could be causing your symptoms. You need to start somewhere right? Eating gluten-free is a heathly diet that is good for you. It doesn't need to be complicated or expensive if you follow a whole foods diet. After you have been gluten-free a while you may not want to go back to eating the "junk" food from before. If you follow a gluten-free diet for 3 to 6 months and then do a gluten challenge for a couple weeks your body should let you know if it likes gluen or not. If your symptoms don't return then you are probably ok with eating gluten. Even if that turns out to be true, you will have learned how to eat healthier, more wholesome foods that will support your body better than processsed junk foods. And that knowledge can help you the rest of your life. Even if you have some other disease, a healthy diet is a positive for your health, not a negative.

0

Share this post


Link to post
Share on other sites

I get sick when I eat gluten, so I am highly motivated to avoid it. I don't have a formal diagnosis, either. I knew within 24 hours that I had found what was bothering me, but I wasn't taking a bunch of masking medications, and I pay close attention to how I feel and react to things. I had lots of non gluten food in the house, which is really important, and had my spouse gradually eat up the "bad" regular food. After several years of sometimes making mistakes with cross contamination, I had it more or less sorted out that I just had to be really insistent on having safe food available, in all situations, to protect myself.

0

Share this post


Link to post
Share on other sites

I had a blood test for celiac and it was negative and yesterday I had a biopsy and won't have the results until December 17. At first I had decided I would try gluten-free for 3 months anyways to see if I have a gluten intolerance and to see if it improves my symptoms but now I am struggling with the idea. If I knew I had celiac then it would be easy to stick to it but if I don't even have celiac then how am I going to be able to stick to such a restrictive diet. Originally I was going to start the diet after my biopsy but now I am wondering if I should even bother. There are a million different things that could be causing my symptoms so why put myself through all the trouble?? I am very conflicted right now. For those who don't have a celiac diagnosis how do you make yourself stick to the diet?

You know what feels better for your belly. Keep in mind that YOU are the one that hurts when you eat/drink something your body can't process. I have fallen off of the wagon before, and suffered for weeks after. That's what keeps me from doing it most days....now that I know how it feels to NOT have tummy pain all of the time, I don't want to go back to all that pain.

I'm to the point that I have to juice. I may eat one small meal per day, but the rest of the time I juice (I AM NOT SUGGESTING THIS TO ANYONE, IT"S WHAT I HAVE TO DO TO BE OKAY), and I've been so much happier & the belly bloat is mostly gone.

I keep all temptations that are my weakness, like no doughnuts in the house.....but the ones that I care little about are here for my family (like bread for sandwiches). Avoiding all temptations is what works for me.

And now I'm staying away from restaurants because of an accidental exposing to gluten because it hurts so bad!

hugs you!

0

Share this post


Link to post
Share on other sites

I think a gluten-free diet would be a good place to start because it does not require medications with all their expense and side effects, and it doesn't require surgery.

You need to be strict about it though. A lot of folks go gluten-free, but they don't consider cross-contamination. Go read the "Newbie 10 " thread to learn about places that gluten hides. Then give it a good try. Three months isn't that long. It'll fly by!

Also, be aware that you will feel worse for a couple of weeks. You will go through withdrawal and probably have headaches and constant hunger. Don't let that bring you down. A lot of us find that even though we get headaches, the OTHER symptoms clear up pretty quickly.

Good luck. If you have any questions, this is the place. We have all been through it and are more than glad to help. :)

0

Share this post


Link to post
Share on other sites

Truthfully it just depends on how sensitive you are. I don't have a formal diagnosis, either. I can tell usually within an hour if I have accidentally had gluten. I feel as if I have the stomach flu when I eat it now. Before going gluten free 5 weeks ago, I just always felt bad.

0

Share this post


Link to post
Share on other sites

I am currently on day 3 of my diet. I decided to go for it. I definitely don't feel any better yet and I am STARVING! I am eating lots of healthy foods and making sure I am gluten-free. How long until I start to feel remotely better if gluten is the problem?

0

Share this post


Link to post
Share on other sites

gluten withdrawl... its just as real as any other addictive withdrawl.... your body will crave it and it will cause many a mood swings and such....

It takes time dear, just hang in there....

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
      103,337
    • Total Posts
      917,377
  • Topics

  • Posts

    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,470
    • Most Online
      1,763

    Newest Member
    Kiwiana
    Joined