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

When Do I Start Feeling Better Again?
0

6 posts in this topic

I feel frustrated. I have eaten gluten stuff my whole life. I've always had trouble with my gut. When I cut out gluten from my diet a couple weeks ago I felt great. My daughter immediately had a relief from some of her symptoms. The doctor asked us to go back on gluten because we didn't have test results but this was after blood test. VERY ANGRY with my doctor... we went back on gluten and felt horrible. We get test results and they are of course negative because we'd been off gluten (actually he has my results and has still not called me yet... I think I may have mild case or something like that.). ANYWAY I am ticked because he immediately said for my daughter to go gluten free for 14 days to see if it made a difference to her weight gain. Well, why did he tell me to have us start eating gluten again if he was just going to tell us to get off gluten as soon as test results came in?

Now we have been back off gluten since yesterday afternoon and I feel like crap. My stomach is still in knots. My daughter is having trouble still. My husband thinks that going off gluten wasn't the cure all afterall. In fact he was irritated with me about it saying that we should just put her back on it. The frustrating part is that he called me about 25 mins. later on his way to work to say that he was noticing that normally his gut would be all upset but it actually feels better and that he thinks we should keep eating gluten free. I feel soooo frustrated. Why aren't I or my daughter feeling better yet? I know stuff comes back with a vengence... does that mean it also takes longer to go away???

0

Share this post


Link to post
Share on other sites


Ads by Google:

Yes, getting glutened after being gluten-free for a while is no fun. I have only bee gluten-free for 5 weeks or so. After 3 weeks of going gluten-free, i got accidentally glutened and it knocked me down flat on my back for 48-72 hours. Had to just sleep it off. To me it was a good reminder that gluten really is like poison to my system, and that incident has made me become more vigilant about avoiding gluten in all forms-I try to stay positive and chalk it up to a learning experience. But while I was in the throes of getting glutened it was hard to think clearly. I understand how you feel now-it WILL work itself out of your system and you should get back to feeling good, like you were when you first went gluten free.

As far as your doctor whom you are frustrated with, I can totally understand your frustration. I was misdiagnosed for 30+ years, and it was my wife, NOT A DOCTOR, who diagnosed me. Without the internet, and my wifes vigilance in finding out what was wrong with me, I would still be sick. I have moments where I can look back, and I get downright pissed-off(for lack of a better word) at all the doctors who knew my symptoms(IBS, Bloating, Diarr and Constip, Agonizing stomach pain, Frequent daily heartburn, Chronic Fatigue, Depression, etc, etc etc.) Yet no doctor ever put it all together and they never mentioned celiac disease. I never heard about celiac until 6 weeks ago when my wife said she thought she found my cure-and it was right.

So, I had 2 options. I could, 1. Stay mad about the dozens of doctors who misdiagnosed me, which would get my blood pressure up and generally stress me out. Or I could 2. Let it go, enjoy my the NEW ME and my newfound energy and health, and just start taking responsibility for my own well being(and not relying on the doctors to give me a pill to fix all my ailments.) I have felt like crap for 2 decades and now that I have found relief and found my cure, I refuse to live in the past and the pain. I choose to move forward in my cure and as soon as your recent glutening gets out of your system you will feel better and have a brighter outlook. I promise.

Good Luck

1

Share this post


Link to post
Share on other sites

You are right about that. It doesn't solve anything!!!

OK - so here is my concern... we don't have a diagnosis and will never get one unless we go back on gluten for probably 3 months... the first time we went gluten free symptoms went away sooooo fast (one symptom for my daughter went away the same day she went gluten free). I am shocked and confused that is not happening again. So I just want to confirm that this is possible to happen i.e. the first time gluten free you get faster results than later times gluten free. I mean could it have just been a coincidence before that certain things happened or maybe I just saw in my daughter what I wanted to see because I wanted a cure-all? I was so positive it was gluten since it was so instantaneous. And since this time around it's not happening... nothing has been fixed... I am so confused.

And the other part is that I am having to push soooo hard with my husband about my daughter and maybe I just overreacted. (I do know my tummy hates gluten but that's all I know for sure) And if it's nothing than I'm tired of fighting my husband on this. He called me this afternoon to say his insides are feeling better already (he's been gluten free since this morning and got those instant results that I'm not getting this time around)... he says this now but after knowing him for 5 years I know that this weekend he could say he never said that and be upset with me again.

0

Share this post


Link to post
Share on other sites

Katie, I think the first thing you have to do is be clear in your mind where you want to go. You sound so conflicted right now.

1. You know that gluten is bad for both you and your daughter.

2. You and your daughter both felt improvement when you went gluten free (no, I am sure it was not a figment of your imagination.

3. Neither of you has a diagnosis.

4. In order to get a diagnosis you must poison yourselves for 2-3 months.

5. When you started eating gluten again your response was worse and lasted longer (this is quite usual, by the way)

5. Your husband is resistant to the idea of eating gluten free.

So once your sort your way through these conflicting facts, you must decide whether a diagnosis is necessary for your family (and that includes your husband since he is not onboard with this idea). You know that without a diagnosis, if you go gluten free you will both improve and probably fully recover. Perhaps if your husband sees this he will get onboard. You also know that you will both be very sick if you gluten yourselves for three months. And the bummer of it is, at the end of those three months your testing could possibly still be negative; you may both be non-celiac gluten intolerant. I have forgotten, so please remind me if you had the genetic testing done and if either of you carries a celiac gene. Sometimes a doctor will diagnose based upon the gene, the symptoms, and recovery on the gluten free diet.

I am sorry to not be of much help, but I thought I would just set out the facts in bullet form to help you work your way through to a decision.

Good luck and cyber {{{{hugs}}}}

1

Share this post


Link to post
Share on other sites

Thank you for your response. I know that my frequent posts must be irritating. I just feel like I am against the world.

We haven't had the genetic test done yet but I just sent that request to a nutritionist I will be meeting with. My doctor has me going to see her instead.

0

Share this post


Link to post
Share on other sites




Would you mind taking a look at my results??? I think they are absolute worthless negatives but wondering what the last one is...

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
      103,873
    • Total Posts
      919,412
  • Topics

  • Posts

    • Toblerone
      I don't eat chocolate often, but I have never had a gluten reaction to Toblerone. I trust it to be gluten-free.
    • So I've been glutened....
      I am so sorry for how your feeling.  I can sympathize; over time I notice I couldn't have any type of gluten free products.  I read that since you don't have villi in your small intestines you have no defenses, meaning even the tiniest bit of exposure causes a flare up.  I even have to be careful when I purchase products by reading the labels to ensure it says manufactured by a nut, soy, milk and wheat free facility.  Be very careful, unfortunately
    • Symptoms despite strict gluten-free -- new here
      I have been reading a lot about leak gut syndrome which is new to the medical community in the sense that they don't know how to manage it.  If (you are female) make sure to do a yearly pap and uterine check to ensure there is no issues there.  If you are not a female then definitely confirm with an endoscopy if your small intestines are still damaged.  I am looking into doing the leaky gut diet to see if it will help, the book I am reading is "Eat Dirt" by Dr Josh Axe.  Especially since I notice anytime I am exposed to gluten by accident my symptoms are worse each and every time.  I know get severe back and rib cage pain, with bloating, gurgling and diarrhea with severe nausea.  I am willing to try anything and I am now reading this book and applying the diet to see if I can heal my intestinal lining.
    • Help
      Ok so I had my colonoscopy & endoscopy last Thursday. Don't get results until July 13th as GI is on vacation. I've had bad pain in my lower left abdomen that wraps around to my lower back as well for the past 4 days..even hurts to touch lightly. Went back to the ER & they did an ultrasound & CT scan. The Doctor said that I have "prominent" lymph nodes in the area that is painful as well as thickening & inflammation of my Sigmond colon? Um ok what is that all about? Kind of freaking out over the whole swollen lymph nodes thing. Has anyone ever dealt with this before? 😒
    • Enormous Stool
      My 2 year old daughter has sufferd with extremely large stools for over a year. She will have a bm once or twice a week there has been blood sometimes i took her to the docs and they gave her some stool softner which didnt help they tried uping the dose which still didnt help and they told me it would eventually work which didnt she was then put on movicol which she was only supposed to get half a sachet still no diffrence i uped it to the the full sachet which helps a little she doesnt always have large stools but most of the time she does. She has got to a stage where she clenches and wont let it out because of how sore it is i try to put her on the toilet for it to come a little easier for her but she screams and will try hide herself in a corner and wont let you anywere near her it is heart breaking to watch her. If anyone has any in advice i would really like to hear.   Thanks.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      60,909
    • Most Online
      1,763

    Newest Member
    Fourpeople
    Joined