Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Deciding To Start A Gluten-Free Diet


smpalesh

Recommended Posts

smpalesh Explorer

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gatita Enthusiast

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.

rosetapper23 Explorer

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).

SMDBill Apprentice

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.

Celiac Mindwarp Community Regular

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

:)

smpalesh Explorer

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.

GFinDC Veteran

.. 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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Takala Enthusiast

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.

Bruisin Newbie

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!

bartfull Rising Star

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. :)

DavinaRN Explorer

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.

smpalesh Explorer

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?

shadowicewolf Proficient

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....

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    2. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    4. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,474
    • Most Online (within 30 mins)
      7,748

    Silk tha Shocker
    Newest Member
    Silk tha Shocker
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.